Healthcare experience among older cancer survivors: Analysis of the SEER-CAHPS dataset.

PubMed

Halpern, Michael T; Urato, Matthew P; Lines, Lisa M; Cohen, Julia B; Arora, Neeraj K; Kent, Erin E

2018-05-01

Little is known about factors affecting medical care experiences of cancer survivors. This study examined experience of care among cancer survivors and assessed associations of survivors' characteristics with their experience. We used a newly-developed, unique data resource, SEER-CAHPS (NCI's Surveillance Epidemiology and End Results [SEER] data linked to Medicare Consumer Assessment of Healthcare Providers and Systems [CAHPS] survey responses), to examine experiences of care among breast, colorectal, lung, and prostate cancer survivors age >66years who completed CAHPS >1year after cancer diagnosis and survived ≥1year after survey completion. Experience of care was assessed by survivor-provided scores for overall care, health plan, physicians, customer service, doctor communication, and aspects of care. Multivariable logistic regression models assessed associations of survivors' sociodemographic and clinical characteristics with care experience. Among 19,455 cancer survivors with SEER-CAHPS data, higher self-reported general-health status was significantly associated with better care experiences for breast, colorectal, and prostate cancer survivors. In contrast, better mental-health status was associated with better care experience for lung cancer survivors. College-educated and Asian survivors were less likely to indicate high scores for care experiences. Few differences in survivors' experiences were observed by sex or years since diagnosis. The SEER-CAHPS data resources allows assessment of factors influencing experience of cancer among U.S. cancer survivors. Higher self-reported health status was associated with better experiences of care; other survivors' characteristics also predicted care experience. Interventions to improve cancer survivors' health status, such as increased access to supportive care services, may improve experience of care. Copyright © 2017 Elsevier Ltd. All rights reserved.

Primary Care, Self-rated Health, and Reductions in Social Disparities in Health

PubMed Central

Shi, Leiyu; Starfield, Barbara; Politzer, Robert; Regan, Jerri

2002-01-01

Objective To examine the extent to which good primary-care experience attenuates the adverse association of income inequality with self-reported health. Data Sources Data for the study were drawn from the Robert Wood Johnson Foundation sponsored 1996–1997 Community Tracking Study (CTS) Household Survey and state indicators of income inequality and primary care. Study Design Cross-sectional, mixed-level analysis on individuals with a primary-care physician as their usual source of care. The analyses were weighted to represent the civilian noninstitutionalized population of the continental United States. Data Collection/Extraction Methods Principal component factor analysis was used to explore the structure of the primary-care indicators and examine their construct validity. Income inequality for the state in which the community is located was measured by the Gini coefficient, calculated using income distribution data from the 1996 current population survey. Stratified analyses compared proportion of individuals reporting bad health and feeling depressed with those with good and bad primary-care experiences for each of the four income-inequality strata. A set of logistic regressions were performed to examine the relation between primary-care experience, income inequality, and self-rated health. Principal Findings Good primary-care experience, in particular enhanced accessibility and continuity, was associated with better self-reported health both generally and mentally. Good primary-care experience was able to reduce the adverse association of income inequality with general health although not with mental health, and was especially beneficial in areas with highest income inequality. Socioeconomic status attenuated, but did not eliminate, the effect of primary-care experience on health. In conclusion, good primary-care experience is associated not only with improved self-rated overall and mental health but also with reductions in disparities between more- and less-disadvantaged communities in ratings of overall health. PMID:12132594

'In some ways it all helps but in some ways it doesn't': The complexities of service users' experiences of inpatient mental health care in Australia.

PubMed

Isobel, Sophie

2018-06-13

Recovery-oriented mental health care requires active involvement of service users in the evaluation of care. While experience of care surveys is routinely given out upon discharge, capturing the depth and detail of service users' experiences in such a way to meaningfully improve services may require more in-depth and targeted approaches. This study aimed to gather voluntary and involuntary service users' experiences of care during hospitalization in two acute adult mental health inpatient units, through the collaborative completion of a purpose designed tool. The purpose of the study was to examine broad experiences of care and to identify the utility of proactive approaches to ongoing service evaluation. Overall, 67 participants were interviewed. Findings highlight the complexity of experiences of care including how an admission can seemingly facilitate clinical recovery while not being recovery-oriented. The findings also detail areas for improvement in the way that care is delivered and evaluated. The implications are particularly pertinent for mental health nurses to consider how, within the existing constraints of their roles, they can provide therapeutic care to all service users. © 2018 Australian College of Mental Health Nurses Inc.

[Effects of care experience to the attitude of active euthanasia among the Austrian population–a cross sectional study].

PubMed

Sohar, Birgit; Großschädl, Franziska; Meier, Isabella Maria; Stronegger, Willibald Julius

2015-12-01

Attitudes towards active euthanasia by request of competent patients who are seriously or incurable ill people are common in public debates. There is still a lack of knowledge on how people with care experience differ in their attitudes towards active euthanasia from those without. The aim of this study is to find out if and how care experience has an effect on the attitude toward voluntary active euthanasia. In spring 2014 a cross-sectional survey was conducted among the Austrian population by a self-developed questionnaire (on basis of a qualitative pilot study). An online-survey was distributed among persons aged 16 to 65 years and a postal survey among those aged 65 years and older (n=725). Descriptive data was analysed with IBM SPSS Version 2.0. Ethical approval has been provided by the Medical University Graz. 48% of the respondents have experience with care, 8.6% as physicians or nurses, 43.7% as family caregiver and 50% as not caring relatives. Multiple answers were possible. People with caring experience–as nurses or family caregiver–show a significantly lower approval of voluntary active euthanasia (p=0.04). Care experiences have an impact on the attitude towards voluntary active euthanasia. Thus, experiences of caring should be better included in end-of-life debates.

Self-care and end of life care--patients' and carers' experience a qualitative study utilising serial triangulated interviews.

PubMed

Johnston, Bridget Margaret; Milligan, Stuart; Foster, Claire; Kearney, Nora

2012-08-01

This study aimed to understand patient and carer experiences of end of life care and to explore how patients care for themselves at the end of life in Scotland. (1) From the perspectives of patients and carers, what are their experience of advanced cancer and end of life care? (2) What self-care strategies enable patient and carers to cope with their end of life care? This paper reports a qualitative study using in-depth, unstructured serial interviews involving collaboration with and participation of people affected by advanced cancer. The study was a 2-year, three-phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland including rural, remote and socially deprived areas. Patient experience data were collected from 20 patients as well as their main carer and the health professional who they perceived had given them the most support. Triangulating data in this way allowed the totality of the patient experience to be captured. A total of 71 interviews were conducted. Data were analysed both within and across cases using framework analysis with the aid of QSR NVIVO 7. Maintaining normality and preparing for death were the two most important areas, for the patients in the study, as far as their self-care was concerned. Patients wished support that enabled them to maintain their independence and remain at home. People managed their illness both physically and emotionally; managing and adjusting to their lack of independence and keeping control were keys to most participants. Self-care is important to this group of people. People receiving end of life care want to and are able to engage in research. The findings are timely and relevant to current changes in palliative care policy and practice.

Getting more than they realized they needed: a qualitative study of women's experience of group prenatal care

PubMed Central

2012-01-01

Background Pregnant women in Canada have traditionally received prenatal care individually from their physicians, with some women attending prenatal education classes. Group prenatal care is a departure from these practices providing a forum for women to experience medical care and child birth education simultaneously and in a group setting. Although other qualitative studies have described the experience of group prenatal care, this is the first which sought to understand the central meaning or core of the experience. The purpose of this study was to understand the central meaning of the experience of group prenatal care for women who participated in CenteringPregnancy through a maternity clinic in Calgary, Canada. Methods The study used a phenomenological approach. Twelve women participated postpartum in a one-on-one interview and/or a group validation session between June 2009 and July 2010. Results Six themes emerged: (1) "getting more in one place at one time"; (2) "feeling supported"; (3) "learning and gaining meaningful information"; (4) "not feeling alone in the experience"; (5) "connecting"; and (6) "actively participating and taking on ownership of care". These themes contributed to the core phenomenon of women "getting more than they realized they needed". The active sharing among those in the group allowed women to have both their known and subconscious needs met. Conclusions Women's experience of group prenatal care reflected strong elements of social support in that women had different types of needs met and felt supported. The findings also broadened the understanding of some aspects of social support beyond current theories. In a contemporary North American society, the results of this study indicate that women gain from group prenatal care in terms of empowerment, efficiency, social support and education in ways not routinely available through individual care. This model of care could play a key role in addressing women's needs and improving health outcomes. PMID:22436393

What makes or mars the facility-based childbirth experience: thematic analysis of women's childbirth experiences in western Kenya.

PubMed

Afulani, Patience A; Kirumbi, Leah; Lyndon, Audrey

2017-12-29

Sub-Saharan Africa accounts for approximately 66% of global maternal deaths. Poor person-centered maternity care, which emphasizes the quality of patient experience, contributes both directly and indirectly to these poor outcomes. Yet, few studies in low resource settings have examined what is important to women during childbirth from their perspective. The aim of this study is to examine women's facility-based childbirth experiences in a rural county in Kenya, to identify aspects of care that contribute to a positive or negative birth experience. Data are from eight focus group discussions conducted in a rural county in western Kenya in October and November 2016, with 58 mothers aged 15 to 49 years who gave birth in the preceding nine weeks. We recorded and transcribed the discussions and used a thematic approach for data analysis. The findings suggest four factors influence women's perceptions of quality of care: responsiveness, supportive care, dignified care, and effective communication. Women had a positive experience when they were received well at the health facility, treated with kindness and respect, and given sufficient information about their care. The reverse led to a negative experience. These experiences were influenced by the behavior of both clinical and support staff and the facility environment. This study extends the literature on person-centered maternity care in low resource settings. To improve person-centered maternity care, interventions need to address the responsiveness of health facilities, ensure women receive supportive and dignified care, and promote effective patient-provider communication.

The Effect of Foster Care Experience and Characteristics on Academic Achievement

ERIC Educational Resources Information Center

Calix, Alexandra

2009-01-01

This study examined the effect of foster care experience and characteristics on educational outcomes. The typical strategy in examining the effect foster care has on educational outcomes is to compare the educational achievement of youth with foster care experience to that of their peers or to national norms. This strategy fails to take selection…

Using Grounded Theory Method to Capture and Analyze Health Care Experiences.

PubMed

Foley, Geraldine; Timonen, Virpi

2015-08-01

Grounded theory (GT) is an established qualitative research method, but few papers have encapsulated the benefits, limits, and basic tenets of doing GT research on user and provider experiences of health care services. GT can be used to guide the entire study method, or it can be applied at the data analysis stage only. We summarize key components of GT and common GT procedures used by qualitative researchers in health care research. We draw on our experience of conducting a GT study on amyotrophic lateral sclerosis patients' experiences of health care services. We discuss why some approaches in GT research may work better than others, particularly when the focus of study is hard-to-reach population groups. We highlight the flexibility of procedures in GT to build theory about how people engage with health care services. GT enables researchers to capture and understand health care experiences. GT methods are particularly valuable when the topic of interest has not previously been studied. GT can be applied to bring structure and rigor to the analysis of qualitative data. © Health Research and Educational Trust.

Using Grounded Theory Method to Capture and Analyze Health Care Experiences

PubMed Central

Foley, Geraldine; Timonen, Virpi

2015-01-01

Objective Grounded theory (GT) is an established qualitative research method, but few papers have encapsulated the benefits, limits, and basic tenets of doing GT research on user and provider experiences of health care services. GT can be used to guide the entire study method, or it can be applied at the data analysis stage only. Methods We summarize key components of GT and common GT procedures used by qualitative researchers in health care research. We draw on our experience of conducting a GT study on amyotrophic lateral sclerosis patients’ experiences of health care services. Findings We discuss why some approaches in GT research may work better than others, particularly when the focus of study is hard-to-reach population groups. We highlight the flexibility of procedures in GT to build theory about how people engage with health care services. Conclusion GT enables researchers to capture and understand health care experiences. GT methods are particularly valuable when the topic of interest has not previously been studied. GT can be applied to bring structure and rigor to the analysis of qualitative data. PMID:25523315

Assessing healthcare professionals' experiences of integrated care: do surveys tell the full story?

PubMed

Stephenson, Matthew D; Campbell, Jared M; Lisy, Karolina; Aromataris, Edoardo C

2017-09-01

Integrated care is the combination of different healthcare services with the goal to provide comprehensive, seamless, effective and efficient patient care. Assessing the experiences of healthcare professionals (HCPs) is an important aspect when evaluating integrated care strategies. The aim of this rapid review was to investigate if quantitative surveys used to assess HCPs' experiences with integrated care capture all the aspects highlighted as being important in qualitative research, with a view to informing future survey development. The review considered all types of health professionals in primary care, and hospital and specialist services, with a specific focus on the provision of integrated care aimed at improving the patient journey. PubMed, CINAHL and grey literature sources were searched for relevant surveys/program evaluations and qualitative research studies. Full text articles deemed to be of relevance to the review were appraised for methodological quality using abridged critical appraisal instruments from the Joanna Briggs Institute. Data were extracted from included studies using standardized data extraction templates. Findings from included studies were grouped into domains based on similarity of meaning. Similarities and differences in the domains covered in quantitative surveys and those identified as being important in qualitative research were explored. A total of 37 studies (19 quantitative surveys, 14 qualitative studies and four mixed-method studies) were included in the review. A range of healthcare professions participated in the included studies, the majority being primary care providers. Common domains identified from quantitative surveys and qualitative studies included Communication, Agreement on Clear Roles and Responsibilities, Facilities, Information Systems, and Coordination of Care and Access. Qualitative research highlighted domains identified by HCPs as being relevant to their experiences with integrated care that have not routinely being surveyed, including Workload, Clear Leadership/Decision-Making, Management, Flexibility of Integrated Care Model, Engagement, Usefulness of Integrated Care and Collaboration, and Positive Impact/Clinical Benefits/Practice Level Benefits. There were several domains identified from qualitative research that are not routinely included in quantitative surveys to assess health professionals' experiences of integrated care. In addition, the qualitative findings suggest that the experiences of HCPs are often impacted by deeper aspects than those measured by existing surveys. Incorporation of targeted items within these domains in the design of surveys should enhance the capture of data that are relevant to the experiences of HCPs with integrated care, which may assist in more comprehensive evaluation and subsequent improvement of integrated care programs.

Item generation in the development of an inpatient experience questionnaire: a qualitative study

PubMed Central

2013-01-01

Background Patient experience is a key feature of quality improvement in modern health-care delivery. Measuring patient experience is one of several tools used to assess and monitor the quality of health services. This study aims to develop a tool for assessing patient experience with inpatient care in public hospitals in Hong Kong. Methods Based on the General Inpatient Questionnaire (GIQ) framework of the Care Quality Commission as a discussion guide, a qualitative study involving focus group discussions and in-depth individual interviews with patients was employed to develop a tool for measuring inpatient experience in Hong Kong. Results All participants agreed that a patient satisfaction survey is an important platform for collecting patients’ views on improving the quality of health-care services. Findings of the focus group discussions and in-depth individual interviews identified nine key themes as important hospital quality indicators: prompt access, information provision, care and involvement in decision making, physical and emotional needs, coordination of care, respect and privacy, environment and facilities, handling of patient feedback, and overall care from health-care professionals and quality of care. Privacy, complaint mechanisms, patient involvement, and information provision were further highlighted as particularly important areas for item revision by the in-depth individual interviews. Thus, the initial version of the Hong Kong Inpatient Experience Questionnaire (HKIEQ), comprising 58 core items under nine themes, was developed. Conclusions A set of dimensions and core items of the HKIEQ was developed and the instrument will undergo validity and reliability tests through a validation survey. A valid and reliable tool is important in accurately assessing patient experience with care delivery in hospitals to improve the quality of health-care services. PMID:23835186

Challenging nurse student selection policy: Using a lifeworld approach to explore the link between care experience and student values.

PubMed

Scammell, Janet; Tait, Desiree; White, Sara; Tait, Michael

2017-10-01

This study uses a lifeworld perspective to explore beginning students' values about nursing. Internationally, increasing care demand, a focus on targets and evidence of dehumanized care cultures have resulted in scrutiny of practitioner values. In England, selection policy dictates that prospective nursing students demonstrate person-centred values and care work experience. However, there is limited recent evidence exploring values at programme commencement or the effect of care experience on values. Mixed method study. A total of 161 undergraduate nursing students were recruited in 2013 from one English university. Thematic content analysis and frequency distribution to reveal descriptive statistics were used. Statistical analysis indicated that most of the values identified in student responses were not significantly affected by paid care experience. Five themes were identified: How I want care to be; Making a difference; The value of learning; Perceived characteristics of a nurse; and Respecting our humanity. Students readily drew on their experience of living to identify person-centred values about nursing.

Health care Professionals' Experiences and Needs When Delivering End-of-Life Care to Children: A Qualitative Study.

PubMed

Bergsträsser, Eva; Cignacco, Eva; Luck, Patricia

2017-01-01

Pediatric end-of-life care (EOL care) entails challenging tasks for health care professionals (HCPs). Little is known about HCPs' experiences and needs when providing pediatric EOL care in Switzerland. This study aimed to describe the experiences and needs of HCPs in pediatric EOL care in Switzerland and to develop recommendations for the health ministry. The key aspect in EOL care provision was identified as the capacity to establish a relationship with the dying child and the family. Barriers to this interaction were ethical dilemmas, problems in collaboration with the interprofessional team, and structural problems on the level of organizations. A major need was the expansion of vocational training and support by specialized palliative care teams. We recommend the development of a national concept for the provision of EOL care in children, accompanied by training programs and supported by specialized pediatric palliative care teams located in tertiary children's hospitals.

Depression among Alumni of Foster Care: Decreasing Rates through Improvement of Experiences in Care

ERIC Educational Resources Information Center

White, Catherine Roller; O'Brien, Kirk; Pecora, Peter J.; English, Diana; Williams, Jason R.; Phillips, Chereese M.

2009-01-01

The Northwest Foster Care Alumni Study examined the relation between experiences in foster care and depression among young adults who spent at least a year in foster care as adolescents. Results indicate that preparation for leaving foster care, nurturing supports from the foster family, school stability, access to tutoring, access to therapeutic…

Experiences of adult patients using primary care services in Poland - a cross-sectional study in QUALICOPC study framework.

PubMed

Oleszczyk, Marek; Krztoń-Królewiecka, Anna; Schäfer, Willemijn L A; Boerma, Wienke G W; Windak, Adam

2017-11-22

Patients as real healthcare system users are important observers of primary care and are able to provide reliable information about the quality of care. The aim of this study was to explore the patients' experiences and their level of satisfaction with the process and outcomes of care provided by primary care physicians in Poland and to identify the characteristics of the patients, their physicians, and facilities associated with patient satisfaction. The study is based on data from the Polish part of the Quality and Costs of Primary Care in Europe (QUALICOPC) cross-sectional, questionnaire-based study. In Poland, a nationally representative sample of 220 PC physicians and 1980 of their patients were recruited to take part in the study. As a study tool we used 3 out of 4 QUALICOPC questionnaires: "Patient Experience", "PC Physician" and "Fieldworker" questionnaires. The areas of the best quality perceived by Polish PC patients are: equity, accessibility of care and quality of service. Coordination and comprehensiveness of care are evaluated relatively worse. The patients' and their physicians' characteristics have a limited influence on patient satisfaction and experiences with Polish primary care. Primary health care in Poland is of good overall quality as perceived by the patients. Study participants were at most satisfied with accessibility and equity of care and less satisfied with coordination and comprehensiveness of care. Longer patient-doctor relationship and older age of patients were found as the most influential determinants of higher satisfaction. However, variables used in this study poorly explain the overall level of satisfaction. Further research is needed to identify the other determinants of patient satisfaction in the Polish population. Rural practices deserve additional attention due to highest proportions of both extremely satisfied and dissatisfied patients.

From vulnerability to passion in the end-of-life care: The lived experience of nurses.

PubMed

Liu, Ying-Chun; Chiang, Hsien-Hsien

2017-12-01

End-of-life (EOL) care is considered to be inherently difficult and vulnerable for patients and nurses. It also seems hard to develop passion for care during these problematic times. This study elucidates how EOL nurses interpret their care experience and how they transform their experience and mindset. This study was conducted by organizing a reflective group based on the concept of group analysis for oncology and hospice nurses to share their experience. Thirteen registered nurses were enrolled from a medical center in northern Taiwan. Data drawn from the group dialogue was derived from six digitally recorded sessions and then analysed alone with the researcher's diaries and participants' feedback sheets. Interpretative Phenomenological Analysis (IPA) was used to analyze the data. The results showed that nurses who provide EOL care actually experience suffering by witnessing patients' suffering. However, the suffering authentically drives the nurses to encounter their own inner selves, to induce the shift of mindset, and then allow them to continuously provide and maintain the passion in EOL care. This study provides a new viewpoint for understanding of EOL nurses' experiences, indicating that this line of work may be recognized as a privilege. We recommend that the setting of a nurse reflective group is important and it may be considered in providing EOL care training for nurses. Hopefully the study results could shed lights for future policies regarding EOL care. Copyright © 2017 Elsevier Ltd. All rights reserved.

Effect of Patient Experience on Bypassing a Primary Care Gatekeeper: a Multicenter Prospective Cohort Study in Japan.

PubMed

Aoki, Takuya; Yamamoto, Yosuke; Ikenoue, Tatsuyoshi; Kaneko, Makoto; Kise, Morito; Fujinuma, Yasuki; Fukuhara, Shunichi

2018-05-01

To discuss how best to implement the gatekeeping functionality of primary care; identifying the factors that cause patients to bypass their primary care gatekeepers when seeking care should be beneficial. To examine the association between patient experience with their primary care physicians and bypassing them to directly obtain care from higher-level healthcare facilities. This prospective cohort study was conducted in 13 primary care clinics in Japan. We assessed patient experience of primary care using the Japanese version of Primary Care Assessment Tool (JPCAT), which comprises six domains: first contact, longitudinality, coordination, comprehensiveness (services available), comprehensiveness (services provided), and community orientation. The primary outcome was the patient bypassing their usual primary care physician to seek care at a hospital, with this occurring at least once in a year. We used a Bayesian hierarchical model to adjust clustering within clinics and individual covariates. Data were analyzed from 205 patients for whom a physician at a clinic served as their usual primary care physician. The patient follow-up rate was 80.1%. After adjustment for patients' sociodemographic and health status characteristics, the JPCAT total score was found to be inversely associated with patient bypass behavior (odds ratio per 1 SD increase, 0.44; 95% credible interval, 0.21-0.88). The results of various sensitivity analyses were consistent with those of the primary analysis. We found that patient experience of primary care in Japan was inversely associated with bypassing a primary care gatekeeper to seek care at higher-level healthcare facilities, such as hospitals. Our findings suggest that primary care providers' efforts to improve patient experience should help to ensure appropriate use of healthcare services under loosely regulated gatekeeping systems; further studies are warranted.

Understanding the experience of adult daughters caring for an ageing parent, a qualitative study.

PubMed

Lopez Hartmann, Maja; Anthierens, Sibyl; Van Assche, Elisa; Welvaert, Joanna; Verhoeven, Véronique; Wens, Johan; Remmen, Roy

2016-06-01

The objective of this study is to describe how adult daughters experience caring for a frail older parent at home. In the near future the ageing of the population will have a major impact on the demand for formal and informal long-term care. Relatives, especially spouses and adult children are the main providers of informal care. Qualitative research methodology was used to study the experience of adult daughters caring for their frail older parents. A phenomenological research perspective was used to better understand the daily experiences of caring for an ageing parent. Data were collected using open-ended interviews. Interviews were audio recorded and transcribed verbatim. Data were subject to thematic analysis. Eleven women between 40-70 years of age participated in this study. Inductive coding of the interview data led to four main themes: being a caregiver as a natural process in life, the perception and consequences of caregiving activities, sharing care and finding a good balance between caring for an ageing parent and other responsibilities. Caregiving activities could be divided into visible and invisible activities and generated different feelings. The visible activities were more easily shared with other family members and professionals than the invisible ones. The women who struggled the most and tended to have a higher level of burden were those who experienced less support from their family. This study provided more insight into the experiences women have when caring for a parent. Supporting family networks that help in both visible and invisible activities may prevent overburden. Consumer-led care and the active participation of the informal caregiver in the decision-making process for building the care plan need to become more prominent. © 2016 John Wiley & Sons Ltd.

SARS: caring for patients in Hong Kong.

PubMed

Chung, Betty Pui Man; Wong, Thomas Kwok Shing; Suen, Esther Suk Bing; Chung, Joanne Wai Yee

2005-04-01

To explore in depth the experiences of nurses' caring for SARS patients in Hong Kong. Severe Acute Respiratory Syndrome (SARS) dramatically demonstrates the global havoc that can be wreaked by a newly emerging infectious disease. The current literature either has a predominantly biomedical focus or deals with the psychological impact on healthcare workers. Published studies on the lived experience of nurses caring for SARS patients are currently lacking. A phenomenological design. Using methods consistent with Husserl's philosophy, eight Registered Nurses working in three regional hospitals in Hong Kong were invited to participate in sharing their lived experience of caring for SARS patients and data were analysed using Colaizzi's approach. The three major themes explicated were: the various emotions experienced in caring for SARS patients, the concept of uncertainty and revisiting the 'taken for granted' features of nursing. These themes, when taken together, describe the essence of the voyage undertaken by nurses who cared for SARS patients during the outbreak. The findings of this study indicate that extensive and ongoing support is needed to prepare and enable nurses to care for SARS patients during a crisis and make it easier for nurses to deal with the various uncertainties. The essence of caring for SARS patients is highlighted in this study. The experience of caring for SARS patients prompts nurses to find meaning in their experience(s), and to develop knowledge and attitudes on how best to care for patients and prepare for a new crisis in the future. This paper considers a more in-depth understanding of the lived experience of nurses during the crisis and the relevance of this perspective for education and support of nurses.

Child Care Teaching as Women's Work: Reflections on Experiences

ERIC Educational Resources Information Center

Kim, Miai; Reifel, Stuart

2010-01-01

Child care teachers' experiences and their gendered understandings of their work were explored in this study. Two female child care teachers were interviewed individually and asked to describe their work as women's work. Analysis showed that teachers essentialized child care teaching, recognized the paradoxes of being a child care teacher,…

A Systematic Review of Patients’ Experiences in Communicating with Primary Care Physicians: Intercultural Encounters and a Balance between Vulnerability and Integrity

PubMed Central

Rocque, Rhea; Leanza, Yvan

2015-01-01

Communication difficulties persist between patients and physicians. In order to improve care, patients’ experiences of this communication must be understood. The main objective of this study is to synthesize qualitative studies exploring patients’ experiences in communicating with a primary care physician. A secondary objective is to explore specific factors pertaining to ethnic minority or majority patients and their influence on patients’ experiences of communication. Pertinent health and social sciences electronic databases were searched systematically (PubMed, Cinahl, PsychNet, and IBSS). Fifty-seven articles were included in the review on the basis of being qualitative studies targeting patients’ experiences of communication with a primary care physician. The meta-ethnography method for qualitative studies was used to interpret data and the COREQ checklist was used to evaluate the quality of included studies. Three concepts emerged from analyses: negative experiences, positive experiences, and outcomes of communication. Negative experiences related to being treated with disrespect, experiencing pressure due to time constraints, and feeling helpless due to the dominance of biomedical culture in the medical encounter. Positive experiences are attributed to certain relational skills, technical skills, as well as certain approaches to care privileged by the physician. Outcomes of communication depend on patients’ evaluation of the consultation. Four categories of specific factors exerted mainly a negative influence on consultations for ethnic minorities: language barriers, discrimination, differing values, and acculturation. Ethnic majorities also raised specific factors influencing their experience: differing values and discrimination. Findings of this review are limited by the fact that more than half of the studies did not explore cultural aspects relating to this experience. Future research should address these aspects in more detail. In conclusion, all patients seemed to face additional cultural challenges. Findings provide a foundation for the development of tailored interventions to patients’ preferences, thus ensuring more satisfactory experiences. Health care providers should be sensitive to specific factors (cultural and micro-cultural) during all medical encounters. PMID:26440647

A Systematic Review of Patients' Experiences in Communicating with Primary Care Physicians: Intercultural Encounters and a Balance between Vulnerability and Integrity.

PubMed

Rocque, Rhea; Leanza, Yvan

2015-01-01

Communication difficulties persist between patients and physicians. In order to improve care, patients' experiences of this communication must be understood. The main objective of this study is to synthesize qualitative studies exploring patients' experiences in communicating with a primary care physician. A secondary objective is to explore specific factors pertaining to ethnic minority or majority patients and their influence on patients' experiences of communication. Pertinent health and social sciences electronic databases were searched systematically (PubMed, Cinahl, PsychNet, and IBSS). Fifty-seven articles were included in the review on the basis of being qualitative studies targeting patients' experiences of communication with a primary care physician. The meta-ethnography method for qualitative studies was used to interpret data and the COREQ checklist was used to evaluate the quality of included studies. Three concepts emerged from analyses: negative experiences, positive experiences, and outcomes of communication. Negative experiences related to being treated with disrespect, experiencing pressure due to time constraints, and feeling helpless due to the dominance of biomedical culture in the medical encounter. Positive experiences are attributed to certain relational skills, technical skills, as well as certain approaches to care privileged by the physician. Outcomes of communication depend on patients' evaluation of the consultation. Four categories of specific factors exerted mainly a negative influence on consultations for ethnic minorities: language barriers, discrimination, differing values, and acculturation. Ethnic majorities also raised specific factors influencing their experience: differing values and discrimination. Findings of this review are limited by the fact that more than half of the studies did not explore cultural aspects relating to this experience. Future research should address these aspects in more detail. In conclusion, all patients seemed to face additional cultural challenges. Findings provide a foundation for the development of tailored interventions to patients' preferences, thus ensuring more satisfactory experiences. Health care providers should be sensitive to specific factors (cultural and micro-cultural) during all medical encounters.

Lived experience of the intensive care unit for patients who experienced delirium.

PubMed

Whitehorne, Karen; Gaudine, Alice; Meadus, Robert; Solberg, Shirley

2015-11-01

Delirium is a common occurrence for patients in the intensive care unit and can have a profound and lasting impact on them. Few studies describe the experience of intensive care patients who have had delirium. To understand the lived experience of intensive care for critically ill patients who experienced delirium. The study participants consisted of 7 men and 3 women, 46 to 70 years old, who had delirium according to the Confusion Assessment Method for the Intensive Care Unit. The van Manen method of hermeneutic phenomenology was used, and data collection entailed audio recorded semistructured interviews. Four themes were detected: "I can't remember," "Wanting to make a connection," "Trying to get it straight," and "Fear and safety concerns." Nurses working in intensive care units need to assess patients for delirium, assess the mental status of patients who have delirium, and help patients and patients' families learn about and deal with the psychological effects of the intensive care unit experience. ©2015 American Association of Critical-Care Nurses.

User Experience and Care Integration in Transitional Care for Older People From Hospital to Home: A Meta-Synthesis.

PubMed

Allen, Jacqueline; Hutchinson, Alison M; Brown, Rhonda; Livingston, Patricia M

2017-01-01

This meta-synthesis aimed to improve understanding of user experience of older people, carers, and health providers; and care integration in the care of older people transitioning from hospital to home. Following our systematic search, we identified and synthesized 20 studies, and constructed a comprehensive framework. We derived four themes: (1) 'Who is taking care of what? Trying to work together"; (2) 'Falling short of the mark'; (3) 'A proper discharge'; and (4) 'You adjust somehow.' The themes that emerged from the studies reflected users' experience of discharge and transitional care as a social process of 'negotiation and navigation of independence (older people/carers), or dependence (health providers).' Users engaged in negotiation and navigation through the interrogative strategies of questioning, discussion, information provision, information seeking, assessment, and translation. The derived themes reflected care integration that facilitated, or a lack of care integration that constrained, users' experiences of negotiation and navigation of independence/dependence. © The Author(s) 2016.

Hospital Value-Based Purchasing: The Association Between Patient Experience and Clinical Outcome.

PubMed

Haley, D Rob; Hamadi, Hanadi; Zhao, Mei; Xu, Jing; Wang, Yi

The Affordable Care Act of 2010 introduced a Hospital Value-Based Purchasing Total Performance Score for payment purposes and to evaluate hospital quality of care. In fiscal year 2016, Total Performance Score was composed of (1) Clinical Processes of Care, (2) Patient Experience of Care, (3) Outcome, and (4) Efficiency domains. The objective of this study was to examine the association between the Patient Experience of Care and Outcome domains. The Donabedian model of structure, process, and outcome was used as a conceptual framework for this study. Data from the 2015-2016 Area Health Resource File, the 2016 American Hospital Association database, and the 2016 Hospital Value-Based Purchasing were used. Univariate, bivariate, and multivariate analyses were conducted to examine the impact of patient experience on outcome of care and hospitals. From a sample of 1866 hospitals across the United States, patient experience was significantly and positively associated with patient outcome. In addition, for-profit hospitals, hospitals with more beds, nonteaching hospitals, and hospitals located in less competitive markets were found to have a significant association with better outcomes. The study's findings are important as policy makers consider additional or alternative indicators that may better represent and encourage higher quality of care within acute care hospitals.

Parent Experiences with State Child Care Subsidy Systems and Their Perceptions of Choice and Quality in Care Selected

ERIC Educational Resources Information Center

Raikes, Helen; Torquati, Julia; Wang, Cixin; Shjegstad, Brinn

2012-01-01

Research Findings: This study investigated parents' experiences using Child Care and Development Fund and other state-dispersed child care subsidies, reasons for choosing their current child care program, and perceptions of the quality of child care received from their current program. A telephone survey of 659 parents receiving child care…

Preventive dental health care experiences of preschool-age children with special health care needs.

PubMed

Huebner, Colleen E; Chi, Donald L; Masterson, Erin; Milgrom, Peter

2015-01-01

This study examined the preventive dental health care experiences of young children with special needs and determined the feasibility of conducting clinical dental examinations at a community-based early intervention services center. Study methods included 90 parent interviews and dental examinations of their preschool-age children. Thirteen percent of the children received optimal preventive care, defined as twice daily tooth brushing with fluoridated toothpaste and two preventive dental visits in the prior 12 months; 37% experienced care that fell short in both areas. Optimal care was more common among children of parents who reported tooth brushing was not a struggle and those with a personal dentist. Parents' opinion of the study experience was generally positive. Few children with special needs receive effective preventive care early, when primary prevention could be achieved. Barriers to optimal care could be readily addressed by the dental community in coordination with early intervention providers. © 2014 Special Care Dentistry Association and Wiley Periodicals, Inc.

Critical Care Nurses' Experiences With Spiritual Care: The SPIRIT Study.

PubMed

Bone, Nigel; Swinton, Marilyn; Hoad, Neala; Toledo, Feli; Cook, Deborah

2018-05-01

Little is known about the effect of chaplains on critical care nurses who are caring for critically ill patients and their families. To understand nurses' experiences when they make a referral to the Spiritual Care Department for a patient or the family of a patient who is dying or deceased. Specific aims were to explore spiritual care's effect on nurses and how nurses understand the role of spiritual care in practice. A qualitative descriptive study using in-person, semistructured interviews in a 21-bed medical-surgical intensive care unit in a teaching hospital. Purposeful sampling identified nurses who had at least 5 years of experience and had cared for at least 5 patients who died on their shift and at least 5 patients for whom they initiated a spiritual care referral. Interviews were digitally recorded and anonymized; conventional content analysis was used to analyze transcripts. Three investigators independently coded 5 transcripts and developed the preliminary coding list. As analysis proceeded, investigators organized codes into categories and themes. A total of 25 nurses were interviewed. The central theme that emerged was presence, described through 3 main categories: the value of having chaplains present in the intensive care unit and their role, nurses' experiences working with chaplains, and nurses' experiences providing spiritual care. Nurses considered spiritual care essential to holistic care and valued the support chaplains provide to patients, families, and staff in today's spiritually diverse society. © 2018 American Association of Critical-Care Nurses.

Concealing emotions: nurses' experiences with induced abortion care.

PubMed

Yang, Cheng-Fang; Che, Hui-Lian; Hsieh, Hsin-Wan; Wu, Shu-Mei

2016-05-01

To explore the experiences of nurses involved with induced abortion care in the delivery room in Taiwan. Induced abortion has emotional, ethical and legal facets. In Taiwan, several studies have addressed the ethical issues, abortion methods and women's experiences with abortion care. Although abortion rates have increased, there has been insufficient attention on the views and experiences of nurses working in the delivery room who are involved with induced abortion care. Qualitative, semistructured interviews. This study used a purposive sampling method. In total, 22 nurses involved with induced abortion care were selected. Semistructured interviews with guidelines were conducted, and the content analysis method was used to analyse the data. Our study identified one main theme and five associated subthemes: concealing emotions, which included the inability to refuse, contradictory emotions, mental unease, respect for life and self-protection. This is the first specific qualitative study performed in Taiwan to explore nurses' experiences, and this study also sought to address the concealing of emotions by nurses when they perform induced abortion care, which causes moral distress and creates ethical dilemmas. The findings of this study showed that social-cultural beliefs profoundly influence nurses' values and that the rights of nurses are neglected. The profession should promote small-group and case-study discussions, the clarification of values and reflective thinking among nurses. Continued professional education that provides stress relief will allow nurses to develop self-healing and self-care behaviours, which will enable them to overcome the fear of death while strengthening pregnancy termination counselling, leading to better quality professional care. © 2016 John Wiley & Sons Ltd.

Experiences of Patient-Centredness With Specialized Community-Based Care

PubMed Central

Winsor, S; Smith, A; Vanstone, M; Giacomini, M; Brundisini, FK; DeJean, D

2013-01-01

Background Specialized community-based care (SCBC) endeavours to help patients manage chronic diseases by formalizing the link between primary care providers and other community providers with specialized training. Many types of health care providers and community-based programs are employed in SCBC. Patient-centred care focuses on patients’ psychosocial experience of health and illness to ensure that patients’ care plans are modelled on their individual values, preferences, spirituality, and expressed needs. Objectives To synthesize qualitative research on patient and provider experiences of SCBC interventions and health care delivery models, using the core principles of patient-centredness. Data Sources This report synthesizes 29 primary qualitative studies on the topic of SCBC interventions for patients with chronic conditions. Included studies were published between 2002 and 2012, and followed adult patients in North America, Europe, Australia, and New Zealand. Review Methods Qualitative meta-synthesis was used to integrate findings across primary research studies. Results Three core themes emerged from the analysis: patients’ health beliefs affect their participation in SCBC interventions; patients’ experiences with community-based care differ from their experiences with hospital-based care; patients and providers value the role of nurses differently in community-based chronic disease care. Limitations Qualitative research findings are not intended to generalize directly to populations, although meta-synthesis across several qualitative studies builds an increasingly robust understanding that is more likely to be transferable. The diversity of interventions that fall under SCBC and the cross-interventional focus of many of the studies mean that findings might not be generalizable to all forms of SCBC or its specific components. Conclusions Patients with chronic diseases who participated in SCBC interventions reported greater satisfaction when SCBC helped them better understand their diagnosis, facilitated increased socialization, provided them with a role in managing their own care, and assisted them in overcoming psychological and social barriers. Plain Language Summary More and more, to reduce bed shortages in hospitals, health care systems are providing programs called specialized community-based care (SCBC) to patients with chronic diseases. These SCBC programs allow patients with chronic diseases to be managed in the community by linking their family physicians with other community-based health care providers who have specialized training. This report looks at the experiences of patients and health care providers who take part in SCBC programs, focusing on psychological and social factors. This kind of lens is called patient-centred. Three themes came up in our analysis: patients’ health beliefs affect how they take part in SCBC interventions; patients’ experiences with care in the community differ from their experiences with care in the hospital; patients and providers value the role of nurses differently. The results of this analysis could help those who provide SCBC programs to better meet patients’ needs. PMID:24228080

Experiences of patient-centredness with specialized community-based care: a systematic review and qualitative meta-synthesis.

PubMed

Winsor, S; Smith, A; Vanstone, M; Giacomini, M; Brundisini, F K; DeJean, D

2013-01-01

Specialized community-based care (SCBC) endeavours to help patients manage chronic diseases by formalizing the link between primary care providers and other community providers with specialized training. Many types of health care providers and community-based programs are employed in SCBC. Patient-centred care focuses on patients' psychosocial experience of health and illness to ensure that patients' care plans are modelled on their individual values, preferences, spirituality, and expressed needs. To synthesize qualitative research on patient and provider experiences of SCBC interventions and health care delivery models, using the core principles of patient-centredness. This report synthesizes 29 primary qualitative studies on the topic of SCBC interventions for patients with chronic conditions. Included studies were published between 2002 and 2012, and followed adult patients in North America, Europe, Australia, and New Zealand. Qualitative meta-synthesis was used to integrate findings across primary research studies. Three core themes emerged from the analysis: patients' health beliefs affect their participation in SCBC interventions;patients' experiences with community-based care differ from their experiences with hospital-based care;patients and providers value the role of nurses differently in community-based chronic disease care. Qualitative research findings are not intended to generalize directly to populations, although meta-synthesis across several qualitative studies builds an increasingly robust understanding that is more likely to be transferable. The diversity of interventions that fall under SCBC and the cross-interventional focus of many of the studies mean that findings might not be generalizable to all forms of SCBC or its specific components. Patients with chronic diseases who participated in SCBC interventions reported greater satisfaction when SCBC helped them better understand their diagnosis, facilitated increased socialization, provided them with a role in managing their own care, and assisted them in overcoming psychological and social barriers. More and more, to reduce bed shortages in hospitals, health care systems are providing programs called specialized community-based care (SCBC) to patients with chronic diseases. These SCBC programs allow patients with chronic diseases to be managed in the community by linking their family physicians with other community-based health care providers who have specialized training. This report looks at the experiences of patients and health care providers who take part in SCBC programs, focusing on psychological and social factors. This kind of lens is called patient-centred. Three themes came up in our analysis: patients' health beliefs affect how they take part in SCBC interventions; patients' experiences with care in the community differ from their experiences with care in the hospital; patients and providers value the role of nurses differently. The results of this analysis could help those who provide SCBC programs to better meet patients' needs.

Family-nurse co-construction of meaning: a central phenomenon of family caring.

PubMed

Meiers, Sonja J; Tomlinson, Patricia S

2003-06-01

The purpose of the study was to understand and interpret caring in the family health experience by exploring the interactional phenomenon of family-nurse co-construction of meaning in the paediatric intensive care unit (PICU). A hermeneutic phenomenological method within a framework of existentialism and symbolic interactionism was used in the investigation. The convenience sample for this study was four family-nurse dyads, that is four families of critically ill children (all with positive outcomes) and the four nurses assigned to their care who were participating in a larger study. Data were derived from semi-structured interviews regarding significant interactions throughout the child's illness and subsequent significant interactions of families with other nurses and nurses with other families. Trustworthiness of the study was addressed through the criteria of credibility, dependability, transferability and confirmability. Co-construction of meaning in the family health experience was found to have two dimensions: interdependent and independent. Both families and nurses described being like family as an essential component of the interdependent experience. Independent dimensions for families were journeying through troubled waters of learning the meaning of the illness event and sensing family comfort through the nurse's care. Independent dimensions described by nurses were journeying through troubled waters of learning to care for families and living with another's fear. The family-nurse interaction, the relational connection and the evolution of meanings that families and nurses construct, was affirmed as the major vehicle in the co-construction experience. Family caring is influenced by the existential meaning constructing, process-oriented, interactional nature of the family health experience. Caring in the family health experience is enhanced through actions the nurse performs on behalf of, and with, the family while understanding the family's unique situation. Caring enacted by nurses in participation with families holds abundant potential for enhancing the family health experience and honor the ethic of caring as central to nursing.

The effect of implementing a care coordination program on team dynamics and the patient experience.

PubMed

Di Capua, Paul; Clarke, Robin; Tseng, Chi-Hong; Wilhalme, Holly; Sednew, Renee; McDonald, Kathryn M; Skootsky, Samuel A; Wenger, Neil

2017-08-01

Care coordination programs are frequently implemented in the redesign of primary care systems, focused on improving patient outcomes and reducing utilization. However, redesign can be disruptive, affect patient experiences, and undermine elements in the patient-centered medical home, such as team-based care. Case-controlled study with difference-in-differences (DID) and cross-sectional analyses. The phased implementation of a care coordination program permitted evaluation of a natural experiment to compare measures of patient experience and teamwork in practices with and without care coordinators. Patient experience scores were compared before and after the introduction of care coordinators, using DID analyses. Cross-sectional data were used to compare teamwork, based on the relational coordination survey, and physician-perceived barriers to coordinated care between clinics with and without care coordinators. We evaluated survey responses from 459 staff and physicians and 13,441 patients in 26 primary care practices. Practices with care coordinators did not have significantly different relational coordination scores compared with practices without care coordinators, and physicians in these practices did not report reduced barriers to coordinated care. After implementation of the program, patients in practices with care coordinators reported a more positive experience with staff over time (DID, 2.6 percentage points; P = .0009). A flexible program that incorporates care coordinators into the existing care team was minimally disruptive to existing team dynamics, and the embedded care coordinators were associated with a small increase in patient ratings that reflected a more positive experience with staff.

Competence in providing mental health care: a grounded theory analysis of nurses' experiences.

PubMed

Sharrock, Julie; Happell, Brenda

In view of the evidence that general nurses have difficulty in caring for patients experiencing mental health problems, the aim of this study was to explore and describe the subjective experience of nurses in providing care for this client group. A grounded theory approach was used. The data were collected via semi-structured individual interviews and analysed using the constant comparative method. The study was conducted with nurses from general health care settings that provide medical and surgical care and treatment. Four nurses who were completing their second year post graduation participated in the study. The experiences of providing care for people experiencing a mental illness as described by participants. The findings indicated the nurses were striving for competence in the provision of mental health care. They acknowledged the mental health needs of patients and their right to quality care. This study supports the notion that general nurses lack confidence when caring for patients with mental health problems in medical and surgical settings. It also highlights a discrepancy between the holistic framework encouraged at undergraduate level and what is experienced in practice.

Identifying Drivers of Overall Satisfaction in Patients Receiving HIV Primary Care: A Cross-Sectional Study

PubMed Central

Dang, Bich N.; Westbrook, Robert A.; Rodriguez-Barradas, Maria C.; Giordano, Thomas P.

2012-01-01

Objective This study seeks to understand the drivers of overall patient satisfaction in a predominantly low-income, ethnic-minority population of HIV primary care patients. The study’s primary aims were to determine 1) the component experiences which contribute to patients’ evaluations of their overall satisfaction with care received, and 2) the relative contribution of each component experience in explaining patients’ evaluation of overall satisfaction. Methods We conducted a cross-sectional study of 489 adult patients receiving HIV primary care at two clinics in Houston, Texas, from January 13–April 21, 2011. The participation rate among eligible patients was 94%. The survey included 15 questions about various components of the care experience, 4 questions about the provider experience and 3 questions about overall care. To ensure that the survey was appropriately tailored to our clinic population and the list of component experiences reflected all aspects of the care experience salient to patients, we conducted in-depth interviews with key providers and clinic staff and pre-tested the survey instrument with patients. Results Patients’ evaluation of their provider correlated the strongest with their overall satisfaction (standardized β = 0.445, p<0.001) and accounted for almost half of the explained variance. Access and availability, like clinic hours and ease of calling the clinic, also correlated with overall satisfaction, but less strongly. Wait time and parking, despite receiving low patient ratings, did not correlate with overall satisfaction. Conclusions The patient-provider relationship far exceeds other component experiences of care in its association with overall satisfaction. Our study suggests that interventions to improve overall patient satisfaction should focus on improving patients’ evaluation of their provider. PMID:22912770

The effect of primary midwife-led care on women's experience of childbirth: results from the COSMOS randomised controlled trial.

PubMed

McLachlan, H L; Forster, D A; Davey, M-A; Farrell, T; Flood, M; Shafiei, T; Waldenström, U

2016-02-01

To determine the effect of primary midwife-led care ('caseload midwifery') on women's experiences of childbirth. Randomised controlled trial. Tertiary care women's hospital in Melbourne, Australia. A total of 2314 low-risk pregnant women. Women randomised to caseload care received antenatal, intrapartum and postpartum care from a primary midwife, with some care provided by a 'back-up' midwife. Women in standard care received midwifery-led care with varying levels of continuity, junior obstetric care or community-based medical care. The primary outcome of the study was caesarean section. This paper presents a secondary outcome, women's experience of childbirth. Women's views and experiences were sought using seven-point rating scales via postal questionnaires 2 months after the birth. A total of 2314 women were randomised between September 2007 and June 2010; 1156 to caseload and 1158 to standard care. Response rates to the follow-up questionnaire were 88 and 74%, respectively. Women in the caseload group were more positive about their overall birth experience than women in the standard care group (adjusted odds ratio 1.50, 95% CI 1.22-1.84). They also felt more in control during labour, were more proud of themselves, less anxious, and more likely to have a positive experience of pain. Compared with standard maternity care, caseload midwifery may improve women's experiences of childbirth. Primary midwife-led care ('caseload midwifery') improves women's experiences of childbirth. © 2015 Royal College of Obstetricians and Gynaecologists.

Factors affecting experiences of intensive care patients in Turkey: patient outcomes in critical care setting.

PubMed

Demir, Yurdanur; Korhan, Esra Akin; Eser, Ismet; Khorshid, Leyla

2013-07-01

To determine the factors affecting a patient's intensive care experience. The descriptive study was conducted at an intensive care unit in the Aegean Region of Turkey, and comprised 158 patients who spent at least 48 hours at the unit between June and November 2009. A questionnaire form and the Intensive Care Experience Scale were used as data collection tools. SPSS 11.5 was used for statistical analysis of the data. Of the total, 86 (54.4%) patients related to the surgical unit, while 72 (45.5%) spent time at the intensive care unit. Most of the subjects (n=113; 71.5%) reported that they constantly experienced pain during hospitalisation. Patients receiving mechanical ventilation support and patients reporting no pain had significantly higher scores on the intensive care experience scale. Patients who reported pain remembered their experiences less than those having no pain. Interventions are needed to make the experiences of patients in intensive care more positive.

Supporting Medical Home Transformation Through Evaluation of Patient Experience in a Large Culturally Diverse Primary Care Safety Net.

PubMed

Cook, Nicole; Hollar, T Lucas; Zunker, Christie; Peterson, Michael; Phillips, Teina; De Lucca, Michael

2016-01-01

The prevalence of chronic disease in the United States is rapidly increasing, with a disproportionate number of underserved, vulnerable patients sharing the burden. The Patient-Centered Medical Home (PCMH) is a care delivery model that has shown promise to improve primary care and address the burden of chronic illness. The purpose of this study was to (1) understand patient characteristics that might influence perceived patient experience in a large primary care safety net undergoing PCMH transformation; (2) identify community-level quality improvement opportunities to support ongoing transformation activities; and (3) establish a baseline of patient experience across the primary care safety net that could be used in repeated evaluations over the course of transformation. A cross-sectional study design was used to conduct this research. A total of 351 racially and ethnically diverse patients of 4 primary care safety net organizations in Broward County, Florida, were surveyed regarding their experience with access to care and coordination of care. Reported access to care and coordination of care. Patients with chronic disease who reported having visited the clinic 3 or more times in the past 12 months reported a better coordination of care experience than patients who had fewer than 3 visits in the past 12 months (odds ratio = 3.57; 95% confidence interval, 1.76-7.24). Patients without chronic disease who had been receiving care at the clinic for 2 or more years of care reported worse experience with access to care than patients with less than 2 years of care (odds ratio = 0.26; 95% confidence interval, 0.11-0.60.) Race, ethnicity, language, and education were not significant predictors of patient experience. Findings support ongoing efforts to improve patient engagement among all patients and to enhance resources to manage chronic disease, including community-based self-management programs, in primary care safety nets undergoing PCMH transformation.

Patients’ experiences with continuity of cancer care in Canada

PubMed Central

Easley, Julie; Miedema, Baukje; Carroll, June C.; O’Brien, Mary Ann; Manca, Donna P.; Grunfeld, Eva

2016-01-01

Abstract Objective To explore patient perspectives on and experiences with the coordination and continuity of cancer care. Design Qualitative study using semistructured telephone interviews. Setting Canada. Participants Thirty-eight breast and colorectal cancer survivors 1 to 4 years after diagnosis. Methods Using a constructivist grounded theory approach, semistructured telephone interviews were conducted with the participants. The interviews were digitally recorded, transcribed verbatim, and proofread. Transcripts were reviewed to create a focused coding scheme that was used to develop categories for participants’ experiences. Main findings Although this study focused on the continuity of cancer care, patients described their experiences with cancer care in general, concentrating predominantly on their relationships with individual health care providers (HCPs). Based on patients’ experiences, several themes were identified as the core components of providing good continuity and well coordinated care. The most important overarching theme was communication, which overlapped with 4 other themes: patient-HCP relationships, the role of HCPs, lack of access to care, and timely and tailored information. Conclusion Patients believed that good communication between HCPs and patients was key to improving the overall continuity of cancer care. Continuity of care is an important theoretical concept in cancer care, but it is not easily recognized by patients. They perceive the cancer care continuum and continuity of care as cancer care in general, which is typically framed by the individual relationships with their HCPs. Future research and interventions need to focus on finding and testing ways to improve communication to enhance continuity of cancer care. PMID:27737982

Experiencing health care service quality: through patients' eyes.

PubMed

Schembri, Sharon

2015-02-01

The primary aim of the present study was to consider health care service quality from the patients' perspective, specifically through the patient's eyes. A narrative analysis was performed on 300 patient stories. This rigorous analysis of patient stories is designed to identify and describe health care service quality through patients' eyes in an authentic and accurate, experiential manner. The findings show that there are variant and complex ways that patients experience health care service quality. Patient stories offer an authentic view of the complex ways that patients experience health care service quality. Narrative analysis is a useful tool to identify and describe how patients experience health care service quality. Patients experience health care service quality in complex and varying ways.

Patients' and professionals' experiences and perspectives of obesity in health-care settings: a synthesis of current research.

PubMed

Mold, Freda; Forbes, Angus

2013-06-01

Obesity-related stigma likely influences how obese people interact with health-care professionals and access health care. To undertake a synthesis of studies examining the views and experiences of both obese people in relation to their health-care provision and health-care professionals in providing care to obese patients. A systematic search of key electronic databases relating to professional or patient experiences of, or perspectives on, obesity was performed in 2008 and updated in 2010. Reference lists of article bibliographies were searched, along with hand searches of relevant journals.   Studies were screened against explicit inclusion criteria and published between 1990 and 2010. Findings were examined and organized thematically.   Data were extracted focusing on obesity, stigma and access to health-care services. All included studies were subject to critical appraisal to assess the quality of the research. Thirty studies were identified. All the studies reported obesity impacting on health-care interactions. Key themes identified were experiences of stigma and feelings of powerlessness, treatment avoidance, psycho-emotional functioning, professional attitudes, confidence and training, variations in health contact time and finally, differences in treatment options and preventative measures. Obesity is a stigmatized condition that impacts negatively on the relationship between patients and health-care providers. Given the increasing prevalence of obesity and the range of therapeutic options available, further work is necessary to understand how the presence of obesity affects health-care interactions and decision making. © 2011 John Wiley & Sons Ltd.

How do patients with exacerbated chronic obstructive pulmonary disease experience care in the intensive care unit?

PubMed Central

Torheim, Henny; Kvangarsnes, Marit

2014-01-01

The aim was to gain insight into how patients with advanced chronic obstructive pulmonary disease (COPD) experience care in the acute phase. The study has a qualitative design with a phenomenological approach. The empirics consist of qualitative in-depth interviews with ten patients admitted to the intensive care units in two Norwegian hospitals. The interviews were carried out from November 2009 to June 2011. The data have been analysed through meaning condensation, in accordance with Amadeo Giorgi's four-step method. Kari Martinsen's phenomenological philosophy of nursing has inspired the study. An essential structure of the patients' experiences of care in the intensive care unit by acute COPD-exacerbation may be described as: Feelings of being trapped in a life-threatening situation in which the care system assumes control over their lives. This experience is conditioned not only by the medical treatment, but also by the entire interaction with the caregivers. The essence of the phenomenon is presented through three themes which describe the patient's lived experience: preserving the breath of life, vulnerable interactions and opportunities for better health. Acute COPD-exacerbation is a traumatic experience and the patients become particularly vulnerable when they depend on others for breathing support. The phenomenological analysis shows that the patients experience good care during breath of life preservation when the care is performed in a way that gives patients more insight into their illness and gives new opportunities for the future. PMID:24313779

Family Selection and Child Care Experiences: Implications for Studies of Child Outcomes.

ERIC Educational Resources Information Center

Burchinal, Margaret R.; Nelson, Lauren

2000-01-01

Discusses family selection issues that should be considered in child care research, and evidence demonstrating why each should be considered. Issues include whether causal inferences can be made from observational studies and the impact on conclusions from regression analyses that include highly correlated measures of child care experiences,…

Exceptionally good? Positive experiences of NHS care and treatment surprises lymphoma patients: a qualitative interview study.

PubMed

Ziebland, Sue; Evans, Julie; Toynbee, Polly

2011-03-01

Initial analysis of an interview study with patients about their experiences of lymphoma identified a strong emergent theme suggesting people were surprised to receive good care in the UK National Health Service. This qualitative analysis helps illuminate the disparity between public perceptions of NHS care and individual experiences. Forty-one women and men with lymphoma were interviewed at home by an academic social scientist; nine who had had all their treatment before 1997 were excluded from this analysis. Initial qualitative thematic analysis used constant comparison and axial coding. Using narrative analytic methods, we explored how the accounts of positive experiences were structured and framed as well as what was said. Every person we interviewed described positive experiences of the NHS. These included the skills and humanity of the specialist staff involved in their care, the team work, the organization of care and communication and information. However, these positive experiences were often framed as personal good fortune rather than an indication that a high standard might be expected of NHS cancer care. Participants' accounts also suggest a discrepancy through the use of framing devices that imply that less professional, kind and caring treatment might be expected. People may be able to maintain the apparently contradictory opinions that the NHS is not very good, even if their own experience of care is excellent, if they construct their own experience as 'lucky'. Health professionals could help by reassuring patients with a more positive, realistic expectation of specialist care. © 2010 The Authors. Health Expectations © 2010 Blackwell Publishing Ltd.

Exceptionally good? Positive experiences of NHS care and treatment surprises lymphoma patients: a qualitative interview study

PubMed Central

Ziebland, Sue; Evans, Julie; Toynbee, Polly

2010-01-01

Abstract Objective  Initial analysis of an interview study with patients about their experiences of lymphoma identified a strong emergent theme suggesting people were surprised to receive good care in the UK National Health Service. This qualitative analysis helps illuminate the disparity between public perceptions of NHS care and individual experiences. Participants and setting  Forty‐one women and men with lymphoma were interviewed at home by an academic social scientist; nine who had had all their treatment before 1997 were excluded from this analysis. Design  Initial qualitative thematic analysis used constant comparison and axial coding. Using narrative analytic methods, we explored how the accounts of positive experiences were structured and framed as well as what was said. Results  Every person we interviewed described positive experiences of the NHS. These included the skills and humanity of the specialist staff involved in their care, the team work, the organization of care and communication and information. However, these positive experiences were often framed as personal good fortune rather than an indication that a high standard might be expected of NHS cancer care. Participants’ accounts also suggest a discrepancy through the use of framing devices that imply that less professional, kind and caring treatment might be expected. Conclusion  People may be able to maintain the apparently contradictory opinions that the NHS is not very good, even if their own experience of care is excellent, if they construct their own experience as ‘lucky’. Health professionals could help by reassuring patients with a more positive, realistic expectation of specialist care. PMID:20579116

Client-Related Factors Associated with a "Less than Good" Experience of Midwifery Care during Childbirth in the Netherlands.

PubMed

Baas, Carien I; Wiegers, Therese A; de Cock, T Paul; Erwich, Jan Jaap H M; Spelten, Evelien R; de Boer, Michiel R; Hutton, Eileen K

2017-03-01

A "less than good" experience during childbirth can affect a mother's early interaction with her child and may significantly influence a woman's emotional well-being. In this study, we focus on clients who experienced midwifery care provided during childbirth as "less than good" care. The aim of this study was to understand the relationship between client-related factors and the experience of midwifery care during childbirth to improve this care. This study was part of the "DELIVER study" where mothers report on the care they received. We used generalized estimation equations to control for correlations within midwife practices. Forward multivariate logistic regression analyses were conducted to model the client-related factors associated with the experienced midwifery care during childbirth. We included the responses of 2,377 women. In the multivariable logistic regression model, odds of reporting "less than good care" were significantly higher for women who experienced an unplanned cesarean birth (OR 2.21 [CI 1.19-4.09]), an instrumental birth (OR 1.55 [CI 1.08-2.23]), and less control during the dilation phase (OR 0.98 [CI 0.97-0.99]) and pushing phase (OR 0.98 [CI 0.97-0.99]). Birth-related factors were more likely than maternal characteristics to be associated with the experience of midwifery care during childbirth. We conclude that there is room for midwives to improve their care for women during childbirth particularly in improving the patient centeredness of the care provider, using strategies to enhance sense of control, and focusing on the particular needs of those who experience instrumental vaginal or unplanned cesarean births. © 2016 Wiley Periodicals, Inc.

Ethics and quality care in nursing homes: Relatives' experiences.

PubMed

Jakobsen, Rita; Sellevold, Gerd Sylvi; Egede-Nissen, Veslemøy; Sørlie, Venke

2017-01-01

A total of 71,000 people in Norway suffer from some form of dementia in 2013, of whom approximately 30,000 are in nursing homes. Several studies focus on the experiences of those who have close relatives and who are staying in a nursing home. Results show that a greater focus on cooperation between nursing staff and relatives is a central prerequisite for an increased level of care. Benefits of developing systematic collaboration practices include relief for nursing staff, less stress, and greater mutual understanding. Going through studies focusing on the experiences of nursing home patients' relatives, negative experiences are in the majority. In this study, relatives are invited to share positive experiences regarding the care of their loved ones; a slightly different perspective, in other words. The aim of the study is to investigate relatives of persons with dementia's experiences with quality care in nursing homes. The study is a part of a larger project called Hospice values in the care for persons with dementia and is based on a qualitative design where data are generated through narrative interviews. The chosen method of analysis is the phenomenological-hermeneutical method for the study of lived experiences. Participants and research context: Participants in the project were eight relatives of persons with dementia who were living in nursing homes, long-term residences. The sampling was targeted, enrolment happened through collective invitation. All relatives interested were included. Ethical considerations: The Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services approve the study. Findings show that relatives have certain expectations as to how their loved ones ought to be met and looked after at the nursing home. The results show that in those cases where the expectations were met, the relatives' experiences were associated with engagement, inclusion and a good atmosphere. When the expectations were not met, the relatives experienced powerlessness, distrust and guilt. The results are discussed considering the concepts of trust, power and asymmetry. When asked about experiences with quality care, the relatives spoke both of expectations met and of expectations not met. Results in this study are important knowledge for developing units where performing quality care is the overall aim.

Women's expectations and experiences of maternity care in NSW--what women highlight as most important.

PubMed

Jenkins, Mary G; Ford, Jane B; Morris, Jonathan M; Roberts, Christine L

2014-09-01

Although surveys have identified that women are generally highly satisfied with maternity care provision, those aspects of care that women highlight as most important for achieving satisfaction and a satisfactory maternity care experience have not been reported. The aim of this study was to investigate how women understand and experience their maternity care and to report which aspects of care women highlight as most important. This large qualitative study explored women's expectations and experiences of maternity care provision. In-depth semi-structured interviews were conducted with 53 women experiencing maternity care in a range of tertiary, regional, rural, remote hospitals and midwife-led practices in the state of New South Wales, Australia during 2011-2012. Included in the interview schedule was the question 'What 3 aspects would you see as most important for delivery of maternity care?' Descriptive analyses of entire transcripts and responses to the question on most important aspects of care were undertaken. Descriptive analyses of women's responses identified 5 important aspects of care: woman-focused care, staff qualities, systems and facilities, family-focused care and continuity of care/information. First-time mothers were more likely to identify woman-focused care, staff qualities and continuity of care/information as important aspects than multiparous mothers. Urban and regional mothers highlighted staff qualities as having greater importance for satisfaction with their care while rural and particularly remote women nominated systems and facilities as important. Our study showed that women from a range of settings are more concerned with staff and relational issues than facilities. Differences in perceptions among primiparous versus multiparous women, at different stages of pregnancy and among women from rural and remote compared to urban settings highlight the need to include women with a diversity of experience when trying to understand the aspects of maternity care most important to women. Copyright © 2014. Published by Elsevier Ltd.

A pilot study of interprofessional palliative care education of medical students in the UK and USA.

PubMed

Gadoud, Amy; Lu, Wei-Hsin; Strano-Paul, Lisa; Lane, Susan; Boland, Jason W

2018-03-01

Educating medical students to care for patients at the end-of-life is increasingly recognised as an essential component of training. Traditionally, medical student programmes are run by doctors, but patient care is delivered by an interprofessional team. Our programmes in the UK and USA independently developed a teaching experience led by an interprofessional team of palliative care health professionals. This study explores the palliative care health professionals' perceptions, regarding their unique role in medical student palliative care education. This is the first study to ascertain views of an interprofessional team delivering palliative care education to medical students. Focus groups enable interaction between members of the group as well as the generation of consensus of comments among group members. Two major themes were identified: perceived benefits and value of the experience, and the challenges and lessons learnt from the experiences. Despite different structures and settings, this experiential learning in palliative care provided a rewarding interprofessional experience that has historically been difficult to achieve. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Preventive dental health care experiences of preschool-age children with special health care needs

PubMed Central

Huebner, Colleen E.; Chi, Donald L.; Masterson, Erin; Milgrom, Peter

2014-01-01

Purpose This study examined the preventive dental health care experiences of young children with special needs and determined the feasibility of conducting clinical dental examinations at a community-based early intervention services center. Methods Study methods included 90 parent interviews and dental examinations of their preschool-age children. Results Thirteen percent of the children received optimal preventive care, defined as twice daily tooth brushing with fluoridated toothpaste and two preventive dental visits in the prior 12 months; 37 percent experienced care that fell short in both areas. Optimal care was more common among children of parents who reported tooth brushing was not a struggle and those with a personal dentist. Parents' opinion of the study experience was generally positive. Conclusions Few children with special needs receive effective preventive care early, when primary prevention could be achieved. Barriers to optimal care could be readily addressed by the dental community in coordination with early intervention providers. PMID:25082666

Nursing care dependence in the experiences of advanced cancer inpatients.

PubMed

Piredda, Michela; Bartiromo, Chiara; Capuzzo, Maria Teresa; Matarese, Maria; De Marinis, Maria Grazia

2016-02-01

Increasing burden of cancer in Europe and socio-demographic trends imply that more cancer patients will face high levels of dependency. Care dependency is often perceived as a distressing experience by cancer patients who are concerned about becoming a burden to others. The experience of care dependence has been scarcely investigated in advanced cancer patients, especially in the hospital setting. This study aimed at describing advanced cancer patients' experiences of care dependence in hospital and of the factors perceived by them as contributing to decrease or increase this dependence. The study used a descriptive phenomenological approach based on Husserl's (1913) life world perspective. Data collection and analysis followed Giorgi's (1997) five basic methodological steps. Data were gathered by semi-structured interviews with thirteen advanced cancer adult inpatients of a teaching hospital. The interviews were audio-recorded and the recordings transcribed word for word. Three themes emerged: 'dependency discovers new meanings of life', 'active coping with dependency' and 'the care cures the dependent person'. The essential meaning of care dependency was the possibility to become aware of being a person as both an object and subject of care. Dependence appears as an experience with strong relational connotations, which enable patients to see differently their life, themselves, the world and others. Dependency is revealed as a natural experience, only partly in accordance with previous studies. Deeper insight into the meaning patients attach to care dependency can enable nurses to better meet the patient's needs, e.g. by improving caring relationships with patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

The impact of the implementation of physician assistants in inpatient care: A multicenter matched-controlled study

PubMed Central

van Vught, Anneke J. A. H.; Peters, Yvonne A. S.; Meermans, Geert; Peute, Joseph G. M.; Postma, Cornelis. T.; Smit, P. Casper; Verdaasdonk, Emiel; de Vries Reilingh, Tammo S.; Wensing, Michel; Laurant, Miranda G. H.

2017-01-01

Background Medical care for admitted patients in hospitals is increasingly reallocated to physician assistants (PAs). There is limited evidence about the consequences for the quality and safety of care. This study aimed to determine the effects of substitution of inpatient care from medical doctors (MDs) to PAs on patients’ length of stay (LOS), quality and safety of care, and patient experiences with the provided care. Methods In a multicenter matched-controlled study, the traditional model in which only MDs are employed for inpatient care (MD model) was compared with a mixed model in which besides MDs also PAs are employed (PA/MD model). Thirty-four wards were recruited across the Netherlands. Patients were followed from admission till one month after discharge. Primary outcome measure was patients’ LOS. Secondary outcomes concerned eleven indicators for quality and safety of inpatient care and patients’ experiences with the provided care. Results Data on 2,307 patients from 34 hospital wards was available. The involvement of PAs was not significantly associated with LOS (β 1.20, 95%CI 0.99–1.40, p = .062). None of the indicators for quality and safety of care were different between study arms. However, the involvement of PAs was associated with better experiences of patients (β 0.49, 95% CI 0.22–0.76, p = .001). Conclusions This study did not find differences regarding LOS and quality of care between wards on which PAs, in collaboration with MDs, provided medical care for the admitted patients, and wards on which only MDs provided medical care. Employing PAs seems to be safe and seems to lead to better patient experiences. Trial registration ClinicalTrials.gov Identifier: NCT01835444 PMID:28793317

Associations between perceptions of care and women's childbirth experience: a population-based cross-sectional study in Rwanda.

PubMed

Mukamurigo, Judith U; Berg, Marie; Ntaganira, Joseph; Nyirazinyoye, Laetitia; Dencker, Anna

2017-06-09

In recent years Rwanda has achieved remarkable improvement in quality of maternity care services but there is evidence of deficiencies in care quality in terms of disrespectful care. Women's overall childbirth experience is an important outcome of childbirth and a factor in assessing quality of care. The aim of this study was to investigate how women's overall childbirth experience in Rwanda was related to their perceptions of childbirth care. A cross-sectional household study of women who had given birth 1-13 months earlier (n = 921) was performed in the Northern Province and in the capital city. Data was collected via structured interviews following a questionnaire. Significant variables measuring perceptions of care were included in a stepwise forward selection logistic regression model with overall childbirth experience as a dichotomised target variable to find independent predictors of a good childbirth experience. The majority of women (77.5%) reported a good overall childbirth experience. In a logistic regression model five factors of perceived care were significant independent predictors of a good experience: confidence in staff (Adjusted OR 1.73, 95% CI 1.20-2.49), receiving enough information (AOR 1.44, 95% CI 1.03-2.00), being treated with respect (AOR 1.69, 95% CI 1.18-2.43), getting support from staff (AOR 1.75, 95% CI 1.20-2.56), and having the baby skin-to-skin after birth (AOR 2.21, 95% CI 1.52-3.19). To further improve childbirth care in Rwanda and care for women according to their preferences, it is important to make sure that the childbirth care includes the following quality aspects in national and clinical guidelines: build confidence, provide good information, treat women and families with respect, provide good professional support during childbirth and put the newborn baby skin-to-skin with its mother early after birth.

Family members' experiences of being cared for by nurses and physicians in Norwegian intensive care units: a phenomenological hermeneutical study.

PubMed

Frivold, Gro; Dale, Bjørg; Slettebø, Åshild

2015-08-01

When patients are admitted to intensive care units, families are affected. This study aimed to illuminate the meaning of being taken care of by nurses and physicians for relatives in Norwegian intensive care units. Thirteen relatives of critically ill patients treated in intensive care units in southern Norway were interviewed in autumn 2013. Interview data were analysed using a phenomenological hermeneutical method inspired by the philosopher Paul Ricoeur. Two main themes emerged: being in a receiving role and being in a participating role. The receiving role implies experiences of informational and supportive care from nurses and physicians. The participating role implies relatives' experiences of feeling included and being able to participate in caring activities and decision-making processes. The meaning of being a relative in ICU is experienced as being in a receiving role, and at the same time as being in a participating role. Quality in relations is described as crucial when relatives share their experiences of care by nurses and physicians in the ICU. Those who experienced informational and supportive care, and who had the ability to participate, expressed feelings of gratitude and confidence in the healthcare system. In contrast, those who did not experience such care, especially in terms of informational care expressed feelings of frustration, confusion and loss of confidence. However, patient treatment and care outweighed relatives' own feelings. Copyright © 2015 Elsevier Ltd. All rights reserved.

Experiences with and attitudes toward death and dying among homeless persons.

PubMed

Song, John; Ratner, Edward R; Bartels, Dianne M; Alderton, Lucy; Hudson, Brenda; Ahluwalia, Jasjit S

2007-04-01

Homeless persons face many barriers to health care, have few resources, and experience high death rates. They live lives of disenfranchisement and neglect. Few studies have explored their experiences and attitudes toward death and dying. Unfortunately, studies done in other populations may not apply to homeless persons. Exploring these experiences and attitudes may provide insight into life, health care, and end-of-life (EOL) concerns of this population. To explore the experiences and attitudes toward death and dying among homeless persons. Qualitative study utilizing focus groups. Fifty-three homeless persons recruited from homeless service agencies. In-depth interviews, which were audiotaped and transcribed. We present seven themes, some of which are previously unreported. Homeless persons described many significant experiences with death and dying, and many participants suffered losses while very young. These encounters influenced participants' attitudes toward risks and risky behavior: e.g., for some, these experiences provided justification for high-risk behaviors and influenced their behaviors while living on the streets. For others, they may be associated with their homelessness. Finally, these experiences informed their attitudes toward death and dying as well as EOL care; homeless persons believe that care will be poor at the EOL. Findings from this study have implications for addressing social services, health promotion, prevention, and EOL care for homeless persons, as well as for others who are poor and disenfranchised.

Experiences With and Attitudes Toward Death and Dying Among Homeless Persons

PubMed Central

Ratner, Edward R; Bartels, Dianne M.; Alderton, Lucy; Hudson, Brenda; Ahluwalia, Jasjit S.

2007-01-01

Background Homeless persons face many barriers to health care, have few resources, and experience high death rates. They live lives of disenfranchisement and neglect. Few studies have explored their experiences and attitudes toward death and dying. Unfortunately, studies done in other populations may not apply to homeless persons. Exploring these experiences and attitudes may provide insight into life, health care, and end-of-life (EOL) concerns of this population. Objective To explore the experiences and attitudes toward death and dying among homeless persons. Design Qualitative study utilizing focus groups. Participants Fifty-three homeless persons recruited from homeless service agencies. Measurements In-depth interviews, which were audiotaped and transcribed. Results We present seven themes, some of which are previously unreported. Homeless persons described many significant experiences with death and dying, and many participants suffered losses while very young. These encounters influenced participants’ attitudes toward risks and risky behavior: e.g., for some, these experiences provided justification for high-risk behaviors and influenced their behaviors while living on the streets. For others, they may be associated with their homelessness. Finally, these experiences informed their attitudes toward death and dying as well as EOL care; homeless persons believe that care will be poor at the EOL. Conclusions Findings from this study have implications for addressing social services, health promotion, prevention, and EOL care for homeless persons, as well as for others who are poor and disenfranchised. PMID:17372788

High-quality chronic care delivery improves experiences of chronically ill patients receiving care

PubMed Central

Cramm, Jane Murray; Nieboer, Anna Petra

2013-01-01

Objective Investigate whether high-quality chronic care delivery improved the experiences of patients. Design This study had a longitudinal design. Setting and Participants We surveyed professionals and patients in 17 disease management programs targeting patients with cardiovascular diseases, chronic obstructive pulmonary disease, heart failure, stroke, comorbidity and eating disorders. Main Outcome Measures Patients completed questionnaires including the Patient Assessment of Chronic Illness Care (PACIC) [T1 (2010), 2637/4576 (58%); T2 (2011), 2314/4330 (53%)]. Professionals' Assessment of Chronic Illness Care (ACIC) scores [T1, 150/274 (55%); T2, 225/325 (68%)] were used as a context variable for care delivery. We used two-tailed, paired t-tests to investigate improvements in chronic illness care quality and patients' experiences with chronic care delivery. We employed multilevel analyses to investigate the predictive role of chronic care delivery quality in improving patients' experiences with care delivery. Results Overall, care quality and patients' experiences with chronic illness care delivery significantly improved. PACIC scores improved significantly from 2.89 at T1 to 2.96 at T2 and ACIC-S scores improved significantly from 6.83 at T1 to 7.18 at T2. After adjusting for patients' experiences with care delivery at T1, age, educational level, marital status, gender and mental and physical quality of life, analyses showed that the quality of chronic care delivery at T1 (P < 0.001) and changes in care delivery quality (P < 0.001) predicted patients' experiences with chronic care delivery at T2. Conclusion This research showed that care quality and changes therein predict more positive experiences of patients with various chronic conditions over time. PMID:24123243

Older persons’ and their families’ experience with live-in foreign home care workers. A grounded theory study

PubMed

Petry, Heidi; Naef, Rahel; Rüesch, Peter; Mahrer-Imhof, Romy; Dreizler, Jutta

2016-11-01

Background: Live-in arrangements with migrant care workers have considerably increased over the last years since they allow older frail persons to age-in-place despite functional limitations. However, little is known about the ramifications live-in care arrangements for families. Aim: The aim of the study was to investigate families’ experience with live-in migrant care workers and indicators of quality from their perspective. Method: Constructivist grounded theory study with 22 families who were recruited via care agencies in the German-speaking part of Switzerland and participated in 29 individual or dyadic interviews. Results: Live-in care by migrant care workers has potentially positive ramifications for older persons and their families, but only so if families, first, reach a consensus about the need for the employment of migrant care workers; second, experience them as competent; and third, mutually forge relationships and negotiate daily life. A successful care arrangement occurs when there is a relational fit among those involved, which leaves families feeling cared for, safe and relieved. They experience a renewed stability in their family system, enriching relationships, and assuredness about the quality present in the care situation. Conclusions: A successful care arrangement is the result of relationships that have been actively created and a negotiated shared existence in a family-like network. It has a positive effect on the well-being of those receiving care and their family members. The family-like network needs competent support.

Separate and Cumulative Effects of Adverse Childhood Experiences in Predicting Adult Health and Health Care Utilization

ERIC Educational Resources Information Center

Chartier, Mariette J.; Walker, John R.; Naimark, Barbara

2010-01-01

Objectives: Objectives of this population-based study were: (1) to examine the relative contribution of childhood abuse and other adverse childhood experiences to poor adult health and increased health care utilization and (2) to examine the cumulative effects of adverse childhood experiences on adult health and health care utilization. Methods:…

Obese older adults report high satisfaction and positive experiences with care

PubMed Central

2014-01-01

Background Obese, older adults often have multiple chronic conditions resulting in multiple health care encounters. However, their satisfaction and experiences with care are not well understood. The objective of this study was to examine the independent impact of obesity on patient satisfaction and experiences with care in adults 65 years of age and older with Medigap insurance. Methods Surveys were mailed to 53,286 randomly chosen adults with an AARP® Medicare Supplement Insurance Plan insured by UnitedHealthcare Insurance Company (for New York residents, UnitedHealthcare Insurance Company of New York) in 10 states. Following adjustment for non-response bias, multivariate regression modeling was used to adjust for demographic, socioeconomic and health status differences to estimate the independent impact of weight on satisfaction and experiences with care. Outcome variables included four global and four composite measures of satisfaction and experiences with care. Results 21.4% of the respondents were obese. Relative to normal weight, obesity was significantly associated with higher patient satisfaction and better experiences with care in seven of the eight ratings measured. Conclusions Obese individuals were more satisfied and had better experiences with care. Obese individuals had more office visits and discussions about nutrition, exercise and medical checks. This may have led to increased attentiveness to care, explaining the increase in satisfaction and better experiences with care. Given the high level of satisfaction and experiences with care in older, obese adults, opportunities exist for clinicians to address weight concerns in this population. PMID:24885429

Attitudes and experiences of nurses toward death and caring for dying patients in Turkey.

PubMed

Cevik, Banu; Kav, Sultan

2013-01-01

Caring of the dying patients and facing the death can be a stressful and difficult experience for nurses. Besides personal and professional experiences, nurses' own attitudes toward death may affect the care given to dying individuals. The aim of this study was to examine Turkish nurses' attitudes toward and experiences with death and caring for dying patients. A descriptive, cross-sectional study was conducted at 2 university hospitals and 1 state hospital located in Ankara, Turkey. Data were collected via sociodemographics form, the Death Attitude Profile-Revised, and Frommelt's Attitude Toward Caring for Dying Patients. The attitudes of Turkish nurses toward death and caring for dying patients are less positive than the reported attitudes of nurses in other studies. Significant relationships were found among level of education, willingness to care for dying patients, and scores on Frommelt's Attitude Toward Caring for Dying Patients and on Death Attitude Profile-Revised subscales (P < .05). Although the majority of nurses (85%) stated that they had received education on end of life, most of them (82%) were not comfortable talking about death. A lack of education and experience may contribute to the negative attitudes. Providing a reflective narrative environment in which nurses can express their personal feelings about death and dying could be a potentially effective approach. This study highlights the need for further educational research and development of better educational programs to help nurses to explore and understand their attitudes toward death, overcome fears, increase communication skills, and enhance coping strategies.

Dentists' attitude to provision of care for people with learning disabilities in Udaipur, India.

PubMed

Nagarajappa, Ramesh; Tak, Mridula; Sharda, Archana J; Asawa, Kailash; Jalihal, Sagar; Kakatkar, Gauri

2013-03-01

This study determines and compares the attitudes of dentists to the provision of care for people with learning disabilities according to gender, qualification, previous experience of treating patients with learning disabilities and work experience of dentists. A cross-sectional study was conducted among 247 dentists (166 men and 81 women) using a pretested structured questionnaire. This questionnaire assessed the respondent's attitude towards learning-disabled patients in five categories: beliefs about treating them, their capabilities, discrimination against these patients, their social behaviour and quality of care to be received by these patients. The information on dentist's gender, qualification, work experience and previous experience of treating patients with learning disabilities was also collected through questionnaire. The Student's t-test and anova test were used for statistical analysis. The mean attitude score was found to be 71.13 ± 8.97. A statistically significant difference was found in the mean attitude scores of dentists with work experience (p = 0.000). Study subjects with postgraduate qualification and previous experience of treating patients with learning disabilities had significantly greater mean attitude score than their counterparts (p = 0.000). The overall attitude of dentists towards provision of care for people with learning disabilities was favourable, which increased with higher qualification and past experience. © 2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

"Couch Surfing" of Latino Foster Care Alumni: Reliance on Peers as Social Capital

ERIC Educational Resources Information Center

Perez, Beatrix F.; Romo, Harriett D.

2011-01-01

Youth exiting foster care often experience difficulties transitioning into adulthood. This paper focuses on Latino foster care youth in a major southwestern U.S. city and addresses the importance of peer networks as a crucial form of social capital as youth leave foster care. Case studies illustrate experiences of foster care alumni ranging in age…

A Comparison of Three Types of Day Care and Nursery School-Home Care.

ERIC Educational Resources Information Center

Prescott, Elizabeth

A study was conducted comparing young children's experiences in three types of day care--closed structure, open structure and family--with their experiences in home care supplemented by part-time nursery school. A total of 112 children, aged 2 to 5, were observed, each for 180-200 minutes. Eighty-four were selected from 15 day care centers, half…

Volunteering to Care for People with Severe Mental Illness: A Qualitative Study of the Significance of Professional and Private Life Experience.

PubMed

Ørtenblad, Lisbeth; Væggemose, Ulla; Gissel, Lene; Nissen, Nina Konstantin

2018-02-06

Challenges in recruiting volunteers encountered by psychiatric services are barely elucidated despite a general societal increase in volunteering. The aim of the study was to explore the significance of professional and private life experiences in willingness to volunteer to care for people with severe mental illness. Focus group interviews with volunteers in the Community Family Programme was conducted, followed by thematic analysis. All interviewees had professional and/or private experience of SMI, which had a major influence on their initial willingness to volunteer. Volunteering was an opportunity to pass on their experiences and to care for SMI people in ways that were not possible in their professions. The interviewees did not distinguish between the influences of professional and/or private life experiences on their willingness to volunteer. The study demonstrates the importance of professional and/or private life experiences in initial considerations about volunteering for mental health care. The consequences for recruitment practices are discussed.

Patient experiences of in-hospital preparations for follow-up care at home.

PubMed

Keller, Gretchen; Merchant, Alefia; Common, Carol; Laizner, Andrea M

2017-06-01

To examine patient experiences of hospital-based discharge preparation for referral for follow-up home care services. To identify aspects of discharge preparation that will assist patients with their transition from hospital-based care to home-based follow-up care. To improve patients' transitions from hospital-based care to community-based home care, hospitals incorporate home care referral processes into discharge planning. This includes patient preparation for follow-up home care services. While there is evidence to support that such preparation needs to be more patient-centred to be effective, there is little knowledge of patient experiences of preparation that would guide improvements. Qualitative descriptive study. The study was carried out at a supra-regional hospital in Eastern Canada. Findings are based on thematic content analysis of 13 semi-structured interviews of patients requiring home care after hospitalisation on a medical or surgical unit. Most interviews were held within one week of discharge. Patient experiences were associated with patient attitudes and levels of engagement in preparation. Attitudes and levels of engagement were seen as related to one another. Those who 'didn't really think about it', had low engagement, while those with the attitude 'guide me', looked for partnership. Those who had an attitude of 'this is what I want', had a very high level of engagement. Previous experience with home care services influenced patients' level of trust in the health care system, and ultimately shaped their attitudes towards and levels of engagement in preparation. Patient preparation for follow-up home care can be improved by assessing their knowledge of and previous experiences with home care. Patients recognised as using a proactive approach may be highly vulnerable. © 2016 John Wiley & Sons Ltd.

Influence of Structured Group Experience on Moral Judgments of Preschoolers.

ERIC Educational Resources Information Center

Moran, James D., III; O'Brien, Gayle

This study examines the influence of social experiences received in a group-care setting on the development of moral reasoning in young children. Thirty-five children approximately 4 years old, participated in the study. Twenty of the subjects attended day care or nursery school; the remaining 15 did not attend any group-care programs. Each child…

Culture care meanings and experiences of postpartum depression among Jordanian Australian women: a transcultural study.

PubMed

Nahas, V; Amasheh, N

1999-01-01

This study discovers, describes, and explains the personal experiences, perceptions, and care meanings of Jordanian women who have suffered postpartum depression. Most postpartum cases often are misdiagnosed as exclusively psychological and untreated by health care professionals without consideration to the cultural meanings of this problem. Understanding the experiences of these women is important, as their expressions often are contextually and culturally influenced. Using Leininger's Theory of Culture Care Diversity and Universality, a purposive sample of 22 Jordanian women diagnosed with postpartum depression, living in Sydney, were interviewed. The ethnonursing research method and data analysis procedures were used. Results revealed that Jordanian mothers experienced severe loss of control over emotions of loneliness, hopelessness, and feelings of being a bad mother. Three major themes focusing on the care meanings and experiences of Jordanian women are discussed: (a) Care means strong family support and kinship during the postpartum period, (b) care is carrying out and fulfilling traditional gender roles as mother and wife, and (c) care is preservation of Jordanian childbearing customs as expressed in the celebration of the birth of the baby.

A national evaluation of homeless and nonhomeless veterans' experiences with primary care.

PubMed

Jones, Audrey L; Hausmann, Leslie R M; Haas, Gretchen L; Mor, Maria K; Cashy, John P; Schaefer, James H; Gordon, Adam J

2017-05-01

Persons who are homeless, particularly those with mental health and/or substance use disorders (MHSUDs), often do not access or receive continuous primary care services. In addition, negative experiences with primary care might contribute to homeless persons' avoidance and early termination of MHSUD treatment. The patient-centered medical home (PCMH) model aims to address care fragmentation and improve patient experiences. How homeless persons with MHSUDs experience care within PCMHs is unknown. This study compared the primary care experiences of homeless and nonhomeless veterans with MHSUDs receiving care in the Veterans Health Administration's medical home environment, called Patient Aligned Care Teams. The sample included VHA outpatients who responded to the national 2013 PCMH-Survey of Health Care Experiences of Patients (PCMH-SHEP) and had a past-year MSHUD diagnosis. Veterans with evidence of homelessness (henceforth "homeless") were identified through VHA administrative records. PCMH-SHEP survey respondents included 67,666 veterans with MHSUDs (9.2% homeless). Compared with their nonhomeless counterparts, homeless veterans were younger, more likely to be non-Hispanic Black and nonmarried, had less education, and were more likely to live in urban areas. Homeless veterans had elevated rates of most MHSUDs assessed, indicating significant co-occurrence. After controlling for these differences, homeless veterans reported more negative and fewer positive experiences with communication; more negative provider ratings; and more negative experiences with comprehensiveness, care coordination, medication decision-making, and self-management support than nonhomeless veterans. Homeless persons with MHSUDs may need specific services that mitigate negative care experiences and encourage their continuation in longitudinal primary care services. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Educational Experiences of Emancipated Foster Youth: An Exploratory Study

ERIC Educational Resources Information Center

Stunkard, Cynthia Joyce

2013-01-01

The data obtained in this qualitative study focused on the educational experiences of youth formerly in foster care after graduation from high school from the viewpoint of the youth. Data were gathered from interviews from 10 participants. Themes included: (a) How do youth emancipated from foster care perceive their educational experiences? (b)…

The experiences of pediatric social workers providing end-of-life care.

PubMed

Muskat, Barbara; Brownstone, David; Greenblatt, Andrea

2017-07-01

Pediatric social workers working in acute care hospital settings may care for children and their families in end-of-life circumstances. This qualitative study is part of a larger study focusing on the experiences of health care providers working with dying children. This study consisted of 9 semi-structured interviews of acute care pediatric social workers who work with dying children and their families. Themes included the role of social work with dying children, the impact of their work and coping strategies. Authors suggest a hospital-worker partnership in supporting staff and promotion of supportive resources.

The health care experience of patients with cancer during the last year of life: Analysis of the SEER-CAHPS data set.

PubMed

Halpern, Michael T; Urato, Matthew P; Kent, Erin E

2017-01-01

Providing high-quality medical care for individuals with cancer during their last year of life involves a range of challenges. An important component of high-quality care during this critical period is ensuring optimal patient satisfaction. The objective of the current study was to assess factors influencing health care ratings among individuals with cancer within 1 year before death. The current study used the Surveillance, Epidemiology, and End Results (SEER)-Consumer Assessment of Healthcare Providers and Systems (CAHPS) data set, a new data resource linking patient-reported information from the CAHPS Medicare Survey with clinical information from the National Cancer Institute's SEER program. The study included 5102 Medicare beneficiaries diagnosed with cancer who completed CAHPS between 1998 and 2011 within 1 year before their death. Multivariable logistic regression analyses examined associations between patient demographic and insurance characteristics with 9 measures of health care experience. Patients with higher general or mental health status were significantly more likely to indicate excellent experience with nearly all measures examined. Sex, race/ethnicity, and education also were found to be significant predictors for certain ratings. Greater time before death predicted an increased likelihood of higher ratings for health plan and specialist physician. Clinical characteristics were found to have few significant associations with experience of care. Individuals in fee-for-service Medicare plans (vs Medicare Advantage) had a greater likelihood of excellent experience with health plans, getting care quickly, and getting needed care. Among patients with cancer within 1 year before death, experience with health plans, physicians, and medical care were found to be associated with sociodemographic, insurance, and clinical characteristics. These findings provide guidance for the development of programs to improve the experience of care among individuals with cancer. Cancer 2017;123:336-344. © 2016 American Cancer Society. © 2016 American Cancer Society. This article has been contributed to by US Government employees and their work is in the public domain in the USA.

Experience of Primary Care among Homeless Individuals with Mental Health Conditions

PubMed Central

Chrystal, Joya G.; Glover, Dawn L.; Young, Alexander S.; Whelan, Fiona; Austin, Erika L.; Johnson, Nancy K.; Pollio, David E.; Holt, Cheryl L.; Stringfellow, Erin; Gordon, Adam J.; Kim, Theresa A.; Daigle, Shanette G.; Steward, Jocelyn L.; Kertesz, Stefan G

2015-01-01

The delivery of primary care to homeless individuals with mental health conditions presents unique challenges. To inform healthcare improvement, we studied predictors of favorable primary care experience among homeless persons with mental health conditions treated at sites that varied in degree of homeless-specific service tailoring. This was a multi-site, survey-based comparison of primary care experiences at three mainstream primary care clinics of the Veterans Administration (VA), one homeless-tailored VA clinic, and one tailored non-VA healthcare program. Persons who accessed primary care service two or more times from July 2008 through June 2010 (N = 366) were randomly sampled. Predictor variables included patient and organization characteristics suggested by the patient perception model developed by Sofaer and Firminger (2005), with an emphasis on mental health. The primary care experience was assessed with the Primary Care Quality-Homeless (PCQ-H) questionnaire, a validated survey instrument. Multiple regression identified predictors of positive experiences (i.e. higher PCQ-H total score). Significant predictors of a positive experience included a site offering tailored service design, perceived choice among providers, and currently domiciled status. There was an interaction effect between site and severe psychiatric symptoms. For persons with severe psychiatric symptoms, a homeless-tailored service design was significantly associated with a more favorable primary care experience. For persons without severe psychiatric symptoms, this difference was not significant. This study supports the importance of tailored healthcare delivery designed for homeless persons’ needs, with such services potentially holding special relevance for persons with mental health conditions. To improve patient experience among the homeless, organizations may want to deliver services that are tailored to homelessness and offer a choice of providers. PMID:25659142

Experience of primary care among homeless individuals with mental health conditions.

PubMed

Chrystal, Joya G; Glover, Dawn L; Young, Alexander S; Whelan, Fiona; Austin, Erika L; Johnson, Nancy K; Pollio, David E; Holt, Cheryl L; Stringfellow, Erin; Gordon, Adam J; Kim, Theresa A; Daigle, Shanette G; Steward, Jocelyn L; Kertesz, Stefan G

2015-01-01

The delivery of primary care to homeless individuals with mental health conditions presents unique challenges. To inform healthcare improvement, we studied predictors of favorable primary care experience among homeless persons with mental health conditions treated at sites that varied in degree of homeless-specific service tailoring. This was a multi-site, survey-based comparison of primary care experiences at three mainstream primary care clinics of the Veterans Administration (VA), one homeless-tailored VA clinic, and one tailored non-VA healthcare program. Persons who accessed primary care service two or more times from July 2008 through June 2010 (N = 366) were randomly sampled. Predictor variables included patient and organization characteristics suggested by the patient perception model developed by Sofaer and Firminger (2005), with an emphasis on mental health. The primary care experience was assessed with the Primary Care Quality-Homeless (PCQ-H) questionnaire, a validated survey instrument. Multiple regression identified predictors of positive experiences (i.e. higher PCQ-H total score). Significant predictors of a positive experience included a site offering tailored service design, perceived choice among providers, and currently domiciled status. There was an interaction effect between site and severe psychiatric symptoms. For persons with severe psychiatric symptoms, a homeless-tailored service design was significantly associated with a more favorable primary care experience. For persons without severe psychiatric symptoms, this difference was not significant. This study supports the importance of tailored healthcare delivery designed for homeless persons' needs, with such services potentially holding special relevance for persons with mental health conditions. To improve patient experience among the homeless, organizations may want to deliver services that are tailored to homelessness and offer a choice of providers.

Informing primary care reform in Greece: patient expectations and experiences (the QUALICOPC study).

PubMed

Lionis, Christos; Papadakis, Sophia; Tatsi, Chrysanthi; Bertsias, Antonis; Duijker, George; Mekouris, Prodromos-Bodosakis; Boerma, Wienke; Schäfer, Willemijn

2017-04-05

Primary health care is the cornerstone of a high quality health care system. Greece has been actively attempting to reform health care services in order to improve heath outcomes and reduce health care spending. Patient-centered approaches to health care delivery have been increasingly acknowledged for their value informing quality improvement activities. This paper reports the quality of primary health care services in Greece as perceived by patients and aspects of health care delivery that are valued by patients. This study was conducted as part of the Quality and Costs of Primary Care in Europe (QUALICOPC) study. A cross-sectional sample of patients were recruited from general practitioner's offices in Greece and surveyed. Patients rated five features of person-focused primary care: accessibility; continuity and coordination; comprehensiveness; patient activation; and doctor-patient communication. One tenth of the patients ranked the importance of each feature on a scale of one to four, and nine tenths of patients scored their experiences of care received. Comparisons were made between patients with and without chronic disease. The sample included 220 general practitioners from both public and private sector. A total of 1964 patients that completed the experience questionnaire and 219 patients that completed the patient values questionnaire were analyzed. Patients overall report a positive experiences with the general practice they visited. Several gaps were identified in particular in terms of wait times for appointments, general practitioner access to patient medical history, delivery of preventative services, patient involvement in decision-making. Patients with chronic disease report better experience than respondents without a chronic condition, however these patient groups report the same values in terms of qualities of the primary care system that are important to them. Data gathered may be used to improve the quality of primary health care services in Greece through an increased focus on patient-centered approaches. Our study has identified several gaps as well as factors within the primary care health system that patient's perceive as most important which can be used to prioritize quality improvement activities, especially within the austerity period. Study findings may also have application to other countries with similar context and infrastructure.

The Effect of Primary Care Provider Turnover on Patient Experience of Care and Ambulatory Quality of Care.

PubMed

Reddy, Ashok; Pollack, Craig E; Asch, David A; Canamucio, Anne; Werner, Rachel M

2015-07-01

Primary care provider (PCP) turnover is common and can disrupt patient continuity of care. Little is known about the effect of PCP turnover on patient care experience and quality of care. To measure the effect of PCP turnover on patient experiences of care and ambulatory care quality. Observational, retrospective cohort study of a nationwide sample of primary care patients in the Veterans Health Administration (VHA). We included all patients enrolled in primary care at the VHA between 2010 and 2012 included in 1 of 2 national data sets used to measure our outcome variables: 326,374 patients in the Survey of Healthcare Experiences of Patients (SHEP; used to measure patient experience of care) associated with 8441 PCPs and 184,501 patients in the External Peer Review Program (EPRP; used to measure ambulatory care quality) associated with 6973 PCPs. Whether a patient experienced PCP turnover, defined as a patient whose provider (physician, nurse practitioner, or physician assistant) had left the VHA (ie, had no patient encounters for 12 months). Five patient care experience measures (from SHEP) and 11 measures of quality of ambulatory care (from EPRP). Nine percent of patients experienced a PCP turnover in our study sample. Primary care provider turnover was associated with a worse rating in each domain of patient care experience. Turnover was associated with a reduced likelihood of having a positive rating of their personal physician of 68.2% vs 74.6% (adjusted percentage point difference, -5.3; 95% CI, -6.0 to -4.7) and a reduced likelihood of getting care quickly of 36.5% vs 38.5% (adjusted percentage point difference, -1.1; 95% CI, -2.1 to -0.1). In contrast, PCP turnover was not associated with lower quality of ambulatory care except for a lower likelihood of controlling blood pressure of 78.7% vs 80.4% (adjusted percentage point difference, -1.44; 95% CI, -2.2 to -0.7). In 9 measures of ambulatory care quality, the difference between patients who experienced no PCP turnover and those who had a PCP turnover was less than 1 percentage point. These effects were moderated by the patients' continuity with their PCP prior to turnover, with a larger detrimental effect of PCP turnover among those with higher continuity prior to the turnover. Primary care provider turnover was associated with worse patient experiences of care but did not have a major effect on ambulatory care quality.

Lesbian, gay, bisexual, and transgender parents seeking health care for their children: a systematic review of the literature.

PubMed

Shields, Linda; Zappia, Tess; Blackwood, Diana; Watkins, Rochelle; Wardrop, Joan; Chapman, Rose

2012-12-01

Few studies have examined the issues faced by lesbian, gay, bisexual, and transgender (LGBT)-parented families in relation to their access to and satisfaction with healthcare services for their children. It is thought that LGBT individuals have experienced negative interactions with the healthcare environment. To systematically review the literature investigating the experience of LGBT parents seeking health care for their children. A search of the following databases: Cochrane Library, CINAHL, Embase, Google Scholar, Medline, PsychInfo, Science Direct, Sociological Abstracts, Proquest, Scopus, and Web of Science was conducted. Using the PRISMA flow chart and processes of the United Kingdom Centre for Reviews and Dissemination, we selected and analysed relevant studies. Four studies that met the inclusion criteria were identified. Studies showed that while the experience of LGBT parents seeking health care was largely positive, strategies need to be implemented to improve the quality of healthcare services for LGBT families and ensure that their needs are met. Although many LGBT parents have positive experiences of health care, some still experience discrimination and prejudice. Specific educational interventions are needed to support LGBT parents seeking health care for their children. Further research is required to explore LGBT-parented families' experiences of healthcare services, and this should include children's experiences. © 2012 Sigma Theta Tau International.

The Association of Proxy Care Engagement with Proxy Reports of Patient Experience and Quality of Life.

PubMed

Roydhouse, Jessica K; Gutman, Roee; Keating, Nancy L; Mor, Vincent; Wilson, Ira B

2018-05-27

To assess the association of proxy-specific covariates with proxy-reported patient cancer care experience, quality rating, and quality of life. Secondary analysis of data from the Cancer Care Outcomes Research and Surveillance (CanCORS) study. Cross-sectional observational study. The respondents were proxies for patients with incident colorectal or lung cancer. Analyses used linear regression models and adjusted for patient sociodemographic and clinical characteristics. Outcomes included patients' experiences with medical care, nursing care, and care coordination, overall quality ratings, and physical and mental health, all scored on 0-100 scales (0 = worst, 100 = best). Independent variables included the proxy's relationship with the patient and engagement in patient care. Of 1,011 proxies, most were the patient's spouse (50 percent) or child (36 percent). Although most proxies (66 percent) always attended medical visits, 3 percent reported never attending. After adjustment, on average children reported worse experiences and poorer quality care than spouses (4-9 points lower across outcomes). Proxies who never attended medical visits reported significantly worse medical care (-11 points, 95 percent CI = -18 to -3) and care coordination (-13 points, 95 percent CI = -20 to -6). Collecting data on proxy engagement in care is warranted if proxy responses are used. © Health Research and Educational Trust.

Development of a survey instrument to measure patient experience of integrated care.

PubMed

Walker, Kara Odom; Stewart, Anita L; Grumbach, Kevin

2016-06-01

Healthcare systems are working to move towards more integrated, patient-centered care. This study describes the development and testing of a multidimensional self-report measure of patients' experiences of integrated care. Random-digit-dial telephone survey in 2012 of 317 adults aged 40 years or older in the San Francisco region who had used healthcare at least twice in the past 12 months. One-time cross-sectional survey; psychometric evaluation to confirm dimensions and create multi-item scales. Survey data were analyzed using VARCLUS and confirmatory factor analysis and internal consistency reliability testing. Scales measuring five domains were confirmed: coordination within and between care teams, navigation (arranging appointments and visits), communication between specialist and primary care doctor, and communication between primary care doctor and specialist. Four of these demonstrated excellent internal consistency reliability. Mean scale scores indicated low levels of integration. These scales measuring integrated care capture meaningful domains of patients' experiences of health care. The low levels of care integration reported by patients in the study sample suggest that these types of measures should be considered in ongoing evaluations of health system performance and improvement. Further research should examine whether differences in patient experience of integrated care are associated with differences in the processes and outcomes of care received.

Experiences of four parents with physical therapy and early mobility of their children in a pediatric critical care unit: A case series.

PubMed

Parisien, Rachel B; Gillanders, Kirstie; Hennessy, Erin K; Herterich, Lisa; Saunders, Kendra; Lati, Jamil; Dos Santos, Stephanie; Hassall, Alison; O'Brien, Kelly K

2016-05-31

The aim of this study was to conduct a preliminary investigation into parents' experiences of physical therapy and early mobility (EM) for their children in a pediatric critical care unit (PCCU). We conducted a series of four qualitative case studies using in-depth semi-structured face-to-face interviews. We recruited parents of children who had undergone surgery and received at least one EM physical therapy intervention while intubated. We conducted a thematic analysis of transcribed interviews to illuminate the factors that influenced EM experiences. Four parents participated in the study. We developed an overview of Parental Experiences with Physical Therapy and Early Mobility in a PCCU, which includes four themes that parents believed influenced their experiences: (1) environmental factors; (2) awareness of physical therapist and health care professional (HCP) roles; (3) communication among parents and HCPs; and (4) parental participation in their child's EM, within the overarching parental experiences in the PCCU. This study affords a preliminary understanding of parents' experiences with physical therapy and EM in a PCCU setting. Results provide an important foundation for future research on mobility in the context of pediatric critical care research and practice.

Prenatal care services in the public and private arena.

PubMed

Blackwell, Deborah A

2002-12-01

This exploratory study described the prenatal care experience in the public and private arena from the perceptions of childbearing women using interpretive interactionism. A face-to-face interview comprised of eight open-ended questions was used to obtain pregnant women's perceptions of their prenatal care experience and prenatal care needs. The purposive sample consisted of six women who received private prenatal care and 14 women who received public prenatal care. Five essential elements of the prenatal care experience were identified. Prenatal care was viewed as a cooperative effort between informal self-care and formal care by health professionals. Issues related to individuality and normality were important considerations in the delivery of prenatal care. Controversy exists over the effectiveness of prenatal care in preventing poor outcomes, as the definition of what constitutes adequate prenatal care remains unclear. Advanced practice nurses (APNs) continue to play a pivotal role in the provision of prenatal care services. The expanded knowledge and skills possessed by APNs place them in a pivotal position to develop and implement individualized, developmentally appropriate prenatal care that the women in this study so desperately wanted. In addition, they can assist women in continuing the health promoting behaviors initiated prenatally through out their lifespan.

Defining Priorities to Improve Patient Experience in Non-Muscle Invasive Bladder Cancer.

PubMed

Garg, Tullika; Connors, Jill Nault; Ladd, Ilene G; Bogaczyk, Tyler L; Larson, Sharon L

2018-01-20

Although approximately 75% of bladder cancers are non-muscle invasive (NMIBC) at diagnosis, most research tends to focus on invasive disease (e.g., experiences related to radical cystectomy and urinary diversion). There is a lack of studies on quality of life, and especially qualitative research, in bladder cancer generally. As a result, relatively little is known about the experiences and needs of NMIBC patients. To understand patient experience, define care priorities, and identify targets for care improvement in NMIBC across the cancer continuum. Through focus groups, patients treated for NMIBC (stage

Work experience, work environment, and blood exposure among home care and hospice nurses.

PubMed

Leiss, Jack K

2012-01-01

Blood exposure rates among home care and hospice nurses (RNs) in the United States are markedly lower for nurses with more home care/hospice experience, whether or not they have more total years of nursing experience (i.e., in other work environments). This study examined whether the protective effect of home care/hospice experience was greater for nurses who worked under three types of circumstances that are typical of the home care/hospice work environment and conducive to blood exposure. A mail survey was conducted in 2006 among home care/hospice nurses in North Carolina, a largely rural state in the southeastern U.S. The adjusted response rate was 69% (n=833). Blood exposure rates were higher among nurses with ≤5 years' experience in home care/hospice. Contrary to expectations, the protective effect of more experience was greater among nurses who did not have limited access to safety devices/personal protective equipment, did not have to rush during home visits, and did not often visit homes with unrestrained pets, unruly children, poor lighting, or extreme clutter. These results suggest that characteristics of the home care/hospice work environment limit nurses' ability to use their experience to prevent blood exposure.

Midwives' and women's views on accessing dental care during pregnancy: an Australian qualitative study.

PubMed

Lim, M; Riggs, E; Shankumar, R; Marwaha, P; Kilpatrick, N

2018-04-16

Maternal behaviours during pregnancy are likely to play a significant role in the development of dental caries in children. Although midwives are well placed to discuss oral health and provide information to women, dental attendance by women during pregnancy is minimal. This study aimed to explore midwives' experience of facilitating pregnant women's access to dental care and to document women's experience of receiving dental information and care during pregnancy. Focus groups with midwives and telephone interviews with women who were referred to Monash Health Dental Services were conducted to explore their perspectives and experiences. The qualitative data was thematically analysed. Three focus groups with 13 midwives and telephone interviews with eight women who recently gave birth were conducted. Three key themes were identified: maternal oral health knowledge; barriers to accessing dental information and care during pregnancy; and suggested recommendations. This study highlighted the barriers that exist for midwives to discuss oral health with women and refer women to dental care, and women's experiences of accessing dental care during pregnancy. Ongoing collaboration between the maternity and dental services is required to strengthen midwives' knowledge, confidence and practise in supporting women to access dental care during pregnancy. © 2018 Australian Dental Association.

Caring for Dying Patients in the Nursing Home: Voices From Frontline Nursing Home Staff

PubMed Central

Cagle, John G.; Unroe, Kathleen T.; Bunting, Morgan; Bernard, Brittany L.; Miller, Susan C.

2017-01-01

Context Nursing homes are an important site for end-of-life care, yet little is known about the perspectives of the frontline staff who provide a majority of this care. Objective To describe, from the staff perspective, positive/negative experiences related to caring for dying residents. Methods Qualitative analysis using survey data from staff working in 52 Indiana nursing homes. Results A total of 707 frontline staff who provide nursing, nurse aide, and social work services responded to open-ended prompts. Study data included responses to open-ended prompts asking participants to describe one positive experience and one negative experience caring for a dying patient. A thematic content analysis was conducted using the constant-comparative method. Respondents were largely female (93%), white (78%), 31–50 years (42%), and 53% had >5 years of nursing home work experience. Experiences were described from three perspectives: 1) first-hand experiences, 2) observed experiences of dying patients, and 3) observed experiences of family members. Selected themes for positive experiences include the following: creating close bonds; good patient care; involvement of hospice; being prepared; and good communication. Selected themes for negative experiences consisted of the following: challenging aspects of care; unacknowledged death; feeling helpless; uncertainty; absent family; painful emotions; and family discord. Conclusion Findings reveal the richness and many complexities of providing end-of-life care in nursing homes and have implications for improving staff knowledge, coordination of care with hospice, and social support for patients. PMID:27815169

Comfort experience in palliative care: a phenomenological study.

PubMed

Coelho, Adriana; Parola, Vitor; Escobar-Bravo, Miguel; Apóstolo, João

2016-08-02

Palliative care aims to provide maximum comfort to the patient. However it is unknown what factors facilitate or hinder the experience of comfort, from the perspective of inpatients of palliative care units. This lack of knowledge hinders the development of comfort interventions adjusted to these patients. The aim of this research is to describe the comfort and discomfort experienced by inpatients at palliative care units. A phenomenological descriptive study was undertaken. Ten inpatients were recruited from a Spanish palliative care unit and seven from a Portuguese palliative care unit. Data were collected using individual interviews and analysed following the method of Giorgi. Four themes reflect the essence of the lived experience: The Palliative Care as a response to the patient's needs with advanced disease, attempt to naturalize advanced disease, confrontation with their own vulnerability, openness to the spiritual dimension. Informants revealed that they experience comfort through humanized care, differentiated environment, symptomatic control, hope and relationships. The discomfort emerges from the losses and powerlessness against their situation. Even if such findings may seem intuitive, documenting them is essential because it invites us to reflect on our convictions about what it means to be comfortable for these patients, and allows incorporating this information in the design of focused interventions to maximize the comfort experience.

Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers.

PubMed

Sarmento, Vera P; Gysels, Marjolein; Higginson, Irene J; Gomes, Barbara

2017-12-01

To understand patients and family caregivers' experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users. We performed a meta-ethnography of qualitative evidence following PRISMA recommendations for reporting systematic reviews. The studies were retrieved in 5 electronic databases (MEDLINE, EMBASE, PsycInfo, BNI, CINAHL) using 3 terms and its equivalents ('Palliative', 'Home care', 'Qualitative research') combined with 'AND', complemented with other search strategies. We included original qualitative studies exploring experiences of adult patients and/or their family caregivers (≥18 years) facing life-limiting diseases with palliative care needs, being cared for at home by specialist or intermediate home palliative care services. 28 papers reporting 19 studies were included, with 814 participants. Of these, 765 were family caregivers and 90% were affected by advanced cancer. According to participants' accounts, there are 2 overarching components of home palliative care: presence (24/7 availability and home visits) and competence (effective symptom control and skilful communication), contributing to meet the core need for security. Feeling secure is central to the benefits experienced with each component, allowing patients and family caregivers to focus on the dual process of living life and preparing death at home. Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Do nursing home chain size and proprietary status affect experiences with care?

PubMed Central

You, Kai; Li, Yue; Intrator, Orna; Stevenson, David; Hirth, Richard; Grabowski, David; Banaszak-Holl, Jane

2015-01-01

Background In 2012, over half of nursing homes were operated by corporate chains. Facilities owned by the largest for-profit chains were reported to have lower quality of care. However, it is unknown how nursing home chain ownerships are related with experiences of care. Objectives To study the relationship between nursing home chain characteristics (chain size and profit status) with patients' family member reported ratings on experiences with care. Data Sources and Study Design Maryland nursing home care experience reports, the Online Survey, Certification, And Reporting (OSCAR) files, and Area Resource Files are used. Our sample consists of all non-governmental nursing homes in Maryland from 2007 to 2010. Consumer ratings were reported for: overall care; recommendation of the facility; staff performance; care provided; food and meals; physical environment; and autonomy and personal rights. We identified chain characteristics from OSCAR, and estimated multivariate random effect linear models to test the effects of chain ownership on care experience ratings. Results Independent nonprofit nursing homes have the highest overall rating score of 8.9, followed by 8.6 for facilities in small nonprofit chains, and 8.5 for independent for-profit facilities. Facilities in small, medium and large for-profit chains have even lower overall ratings of 8.2, 7.9, and 8.0, respectively. We find similar patterns of differences in terms of recommendation rate, and important areas such as staff communication and quality of care. Conclusions Evidence suggests that Maryland nursing homes affiliated with large- and medium- for-profit chains had lower ratings of family reported experience with care. PMID:26765147

Interactional aspects of care during hospitalization: perspectives of family caregivers of psychiatrically ill in a tertiary care setting in India.

PubMed

Dinakaran, P; Mehrotra, Seema; Bharath, Srikala

2014-12-01

There are very few studies on user-perspectives about mental health care services that explore perspectives of family caregivers in India. An exploratory study was undertaken to understand the perceived importance of various aspects of interactions with mental health service providers during hospitalization, from the perspectives of family caregivers. In addition, it also aimed at documenting their actual experience of interactional aspects of care during the hospitalization of their relatives. The study was conducted on fifty family caregivers of patients with varied psychiatric diagnoses hospitalized in a tertiary psychiatric care setting in South India. Measures of Interactional aspects of care were developed to assess perceived importance of six different interactional domains of care and the actual experience of care in these domains. Provision of informational inputs and addressing of concerns raised emerged as the domains of care given highest importance. The item pertaining to 'sharing with the caregiver about different alternatives for treatment' received negative ratings in terms of actual experience by maximum number of participants (18%). Significant differences on perceived importance of four domains of interactional aspects of care (dignity, confidentiality and fairness, addressing concerns raised, informational inputs and prompt attention and consistent care) emerged between caregiver subgroups based on educational level of the caregiver, socio-economic status, hospitalization history and broad diagnostic categories. In addition, the care givers of patients with psychoses assigned significantly more positive ratings on actual experience for all the domains of interactional aspects of care. The findings have implications for further research and practice. Copyright © 2014 Elsevier B.V. All rights reserved.

Meanings and experiential outcomes of bodily care in a specialist palliative context.

PubMed

Håkanson, Cecilia; Öhlén, Joakim

2015-06-01

The objective of this study was to enhance the depth of existing knowledge about meanings and experiential outcomes of bodily care in the context of an inpatient specialist palliative setting. Interpretative phenomenology was chosen as the study sought to explore individuals' lived experiences related to bodily care. Nine participants (five women, four men) of various ages and with various metastasized cancers and bodily-care needs, all from one specialist palliative care ward, participated. Data were collected with repeated narrative interviews and supplementary participating observations. Analysis was informed by van Manen's approach. The following meanings and experiential outcomes of bodily care were revealed by our study: maintaining and losing body capability, breaching borders of bodily integrity, being comforted and relieved in bodily-care situations, and being left in distress with unmet needs. These meanings overlap and shape the nature of each other and involve comforting and distressing experiences related to what can be described as conditional dimensions: the particular situation, one's own experiences of the body, and healthcare professionals' approaches. The results, based on specialist palliative care patients' experiences, outline the meanings and outcomes that relate to the quintessence and complexity of palliative care, deriving from dying persons' blend of both basic and symptom-oriented bodily-care needs. Moreover, the results outline how these two dimensions of care equally influence whether comfort and well-being are facilitated or not. Considering this, specialist palliative care may consider how to best integrate and acknowledge the value of skilled basic nursing care as part of and complementary to expertise in symptom relief during the trajectories of illness and dying.

A metasynthesis study of family caregivers' transition experiences caring for community-dwelling persons with advanced cancer at the end of life.

PubMed

Duggleby, Wendy; Tycholiz, Jamie; Holtslander, Lorraine; Hudson, Peter; Nekolaichuk, Cheryl; Mirhosseini, Mehrnoush; Parmar, Jasneet; Chambers, Thane; Alook, Angele; Swindle, Jennifer

2017-07-01

Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. Sandelowski and Barroso's methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. A total of 72 studies were included in the metasynthesis. Family caregivers experience a "life transition" whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. The findings provide a framework to guide the development of supportive programs and future research.

Experiences of attending day care services designed for people with dementia - a qualitative study with individual interviews.

PubMed

Strandenæs, Margit Gausdal; Lund, Anne; Rokstad, Anne Marie Mork

2018-06-01

Day care is assumed to promote independence in home-dwelling people with dementia, increase well-being and enhance social stimulation. Few studies have directly engaged people with dementia to better understand the benefits and impacts of such services. The aim of this study was to explore attendees' experiences with day care designed for people with dementia. This study had a qualitative descriptive design and included individual interviews with 17 users attending day care. The analysis was undertaken using content analyses. The participants reported that day care had a positive influence on their physical functioning, cognition, well-being, and situation at home because they were provided with social stimulation, meals, and activities. Day care contributed to the maintenance of a rhythm and structure in everyday life. Furthermore, the staff contributed to making the day care a safe place to be and enhanced a sense of belonging. This study reveals the positive impact of day care on the daily lives of people with dementia because this service contributes to the enhancement of activities and social support, prevents isolation, and enhances practical and cognitive functioning as experienced by the users. The staff has a major impact on the experience of the participants in the day care.

Collecting and Analyzing Patient Experiences of Health Care From Social Media.

PubMed

Rastegar-Mojarad, Majid; Ye, Zhan; Wall, Daniel; Murali, Narayana; Lin, Simon

2015-07-02

Social Media, such as Yelp, provides rich information of consumer experience. Previous studies suggest that Yelp can serve as a new source to study patient experience. However, the lack of a corpus of patient reviews causes a major bottleneck for applying computational techniques. The objective of this study is to create a corpus of patient experience (COPE) and report descriptive statistics to characterize COPE. Yelp reviews about health care-related businesses were extracted from the Yelp Academic Dataset. Natural language processing (NLP) tools were used to split reviews into sentences, extract noun phrases and adjectives from each sentence, and generate parse trees and dependency trees for each sentence. Sentiment analysis techniques and Hadoop were used to calculate a sentiment score of each sentence and for parallel processing, respectively. COPE contains 79,173 sentences from 6914 patient reviews of 985 health care facilities near 30 universities in the United States. We found that patients wrote longer reviews when they rated the facility poorly (1 or 2 stars). We demonstrated that the computed sentiment scores correlated well with consumer-generated ratings. A consumer vocabulary to describe their health care experience was constructed by a statistical analysis of word counts and co-occurrences in COPE. A corpus called COPE was built as an initial step to utilize social media to understand patient experiences at health care facilities. The corpus is available to download and COPE can be used in future studies to extract knowledge of patients' experiences from their perspectives. Such information can subsequently inform and provide opportunity to improve the quality of health care.

Does clinical supervision of healthcare professionals improve effectiveness of care and patient experience? A systematic review.

PubMed

Snowdon, David A; Leggat, Sandra G; Taylor, Nicholas F

2017-11-28

To ensure quality of care delivery clinical supervision has been implemented in health services. While clinical supervision of health professionals has been shown to improve patient safety, its effect on other dimensions of quality of care is unknown. The purpose of this systematic review is to determine whether clinical supervision of health professionals improves effectiveness of care and patient experience. Databases MEDLINE, PsychINFO, CINAHL, EMBASE and AMED were searched from earliest date available. Additional studies were identified by searching of reference lists and citation tracking. Two reviewers independently applied inclusion and exclusion criteria. The quality of each study was rated using the Medical Education Research Study Quality Instrument. Data were extracted on effectiveness of care (process of care and patient health outcomes) and patient experience. Seventeen studies across multiple health professions (medical (n = 4), nursing (n = 7), allied health (n = 2) and combination of nursing, medical and/or allied health (n = 4)) met the inclusion criteria. The clinical heterogeneity of the included studies precluded meta-analysis. Twelve of 14 studies investigating 38,483 episodes of care found that clinical supervision improved the process of care. This effect was most predominant in cardiopulmonary resuscitation and African health settings. Three of six studies investigating 1756 patients found that clinical supervision improved patient health outcomes, namely neurological recovery post cardiopulmonary resuscitation (n = 1) and psychological symptom severity (n = 2). None of three studies investigating 1856 patients found that clinical supervision had an effect on patient experience. Clinical supervision of health professionals is associated with effectiveness of care. The review found significant improvement in the process of care that may improve compliance with processes that are associated with enhanced patient health outcomes. While few studies found a direct effect on patient health outcomes, when provided to mental health professionals clinical supervision may be associated with a reduction in psychological symptoms of patients diagnosed with a mental illness. There was no association found between clinical supervision and the patient experience. CRD42015029643 .

Cross-cultural comparison of long-term care in the United States and Finland: Research done through a short-term study-abroad experience.

PubMed

Kruger, Tina M; Gilland, Sarah; Frank, Jacquelyn B; Murphy, Bridget C; English, Courtney; Meade, Jana; Morrow, Kaylee; Rush, Evan

2017-01-01

In May 2014, a short-term study-abroad experience was conducted in Finland through a course offered at Indiana State University (ISU). Students and faculty from ISU and Eastern Illinois University participated in the experience, which was created to facilitate a cross-cultural comparison of long-term-care settings in the United States and Finland. With its outstanding system of caring for the health and social needs of its aging populace, Finland is a logical model to examine when considering ways to improve the quality of life for older adults who require care in the United States . Those participating in the course visited a series of long-term-care facilities in the region surrounding Terre Haute, Indiana, then travelled to Lappeenranta, Finland to visit parallel sites. Through limited-participation observation and semistructured interviews, similarities and differences in experiences, educations, and policies affecting long-term care workers in the United States and Finland were identified and are described here.

Nursing students' experiences caring for dying patients.

PubMed

Beck, C T

1997-11-01

Since the 1960s nurse educators have been searching for the most effective approach to prepare nursing students for care of the dying. Studies investigating the effectiveness of death education programs for nursing students have reported inconsistent findings. A phenomenological study was conducted to explore the meaning of 26 undergraduate nursing students' experiences in caring for dying patients. The nursing students' written descriptions of their experiences were analyzed using Colaizzi's (1978) phenomenological method. Six themes emerged from this analysis. While caring for dying patients, nursing students experienced a gamut of emotions such as fear, sadness, frustration, and anxiety. Contemplation of the patient's life and death occurred as the students cared for their patients. In addition to providing physical, emotional, and spiritual support for dying patients, an integral part of nursing students' care involved supporting the patients' families. Helplessness was experienced by the students regarding their role as patient advocates. While caring for dying patients, nursing students' learning fluorished. Educational strategies for preparing nursing students to care for the dying are addressed based on the findings of this qualitative study.

A path analysis study of factors influencing hospital staff perceptions of quality of care factors associated with patient satisfaction and patient experience.

PubMed

Leggat, Sandra G; Karimi, Leila; Bartram, Timothy

2017-11-16

Hospital staff are interested in information on patient satisfaction and patient experience that can help them improve quality of care. Staff perceptions of quality of care have been identified as useful proxies when patient data are not available. This study explores the organizational factors and staff attitudes that influence staff perceptions of the quality of the care they provide in relation to patient satisfaction and patient experience. Cross sectional survey completed by 258 staff of a large multi-campus, integrated metropolitan hospital in Australia. Structured equation modelling was used to analyse the data. Our data suggest that different perceived organizational factors and staff attitudes contribute to different pathways for patient satisfaction and patient experience indicators. Hospital staff in our sample were more likely to indicate they provided the care that would result in higher patient satisfaction if they felt empowered within a psychologically safe environment. Conversely their views on patient experience were related to their commitment towards their hospital. There was no relationship between the staff perceptions of patient satisfaction and the staff response to the friends and family test. This study provides empirical evidence that staff perceptions of the quality of care they provide that is seen to be related to patient satisfaction and patient experience are enacted through different pathways that reflect differing perceptions of organizational factors and workplace psychological attitudes.

Mixed-methods investigation of women's experiences with second-trimester abortion care in the Midwest and Northeast United States.

PubMed

Blanchard, Kelly; Meadows, Jill L; Gutierrez, Hialy R; Hannum, Curtiss Ps; Douglas-Durham, Ella F; Dennis, Amanda J

2017-12-01

We studied women's experiences seeking and receiving second-trimester abortion care in two geographically and legislatively different settings to inform ways to improve abortion care access and services. We conducted in-depth interviews with women who obtained second-trimester abortion care. Themes from the interviews were then used to inform a self-administered survey, which was completed by 108 women who received second-trimester abortion care in the Northeast and Midwest. We calculated descriptive statistics and used chi-squared and t-tests to compare responses. We interviewed eight women and surveyed 108 women. Most interviewees and 65.2% of survey respondents reported difficulties accessing care. Although most interview and survey respondents had insurance, a slight majority reported difficulty funding care. All interviewees and 57.9% of survey respondents reported positive experiences with providers, with many interviewees and 62.0% of survey respondents saying their abortion care was better than their usual health care. Most interviewees and 75.8% of survey respondents reported pain as low to moderate, and the majority of participants reported it was the same or less than expected. Knowledge about abortion restrictions was low. Most interviewees and 68.4% survey respondents disagreed with restrictions on insurance coverage of abortion. Common recommendations to improve experiences were to ensure travel and financial support and to decrease wait times at clinics. There were few regional differences among outcomes. Women seeking second-trimester abortion in these locations reported positive abortion experiences. However, they had to overcome significant obstacles to obtain care. This is the first study to systematically research women's second-trimester care experiences in two different regions of the United States. Regardless of location, women experienced barriers due to policies that impose gestational age restrictions, limit provider availability (consequently increasing wait times), and increase costs. Policy change to reduce these barriers is critical to improve access to and experiences with second trimester abortion care. Copyright © 2017 Elsevier Inc. All rights reserved.

"Looking and Listening-In": A Methodological Approach to Generating Insights into Infants' Experiences of Early Childhood Education and Care Settings

ERIC Educational Resources Information Center

Sumsion, Jennifer; Goodfellow, Joy

2012-01-01

In this article, we describe an observational approach, "looking and listening-in," that we have used to try to understand the experience of an infant in an Australian family day-care home. The article is drawn from a larger study of infants' experiences of early childhood education and care settings. In keeping with the mosaic…

Between violation and competent care--lived experiences of dependency on care in the ICU.

PubMed

Lykkegaard, Kristina; Delmar, Charlotte

2015-01-01

This study explores the perceived meaning of dependency on care as experienced by intensive care patients. Research from non-intensive settings shows that dependency is often experienced negatively, but literature on the subject experienced by patients in the ICU is sparse. The study is based on in-depth qualitative semi-structured interviews of lived experience with three former patients admitted to an intensive care unit at a Danish university hospital. The in-depth interviews have been characterized as narratives. The main inspiration for the analysis method is Ricoeur's phenomenological hermeneutical interpretation theory. The study has found that dependency is experienced as difficult, and the relationship with the nurses seems to be ambivalent. The good relationship is experienced to make dependency easier, whereas negative experiences make it harder to cope with dependency. The participants deal with dependency by accepting negative experiences in gratitude for having recovered from critical illness. The findings might be influenced by studies being conducted in a western country setting where independence is valued. They can be used as means of reflection on nursing practice and matters such as communication and patient participation.

A Qualitative Study of the Maternity Care Experiences of Women with Obesity: "More than Just a Number on the Scale".

PubMed

DeJoy, Sharon Bernecki; Bittner, Krystle; Mandel, Deborah

2016-01-01

The prevalence of obesity among pregnant women in the United States is high. Obesity can have long-term health consequences for both women and their offspring, so high-quality perinatal care for women with obesity is essential. However, stigmatizing encounters with health care professionals can decrease quality and promote avoidance of care. The purpose of this study was to explore the experiences of women with obesity in the maternity care system in the United States. In-depth telephone interviews were conducted with 16 women with a body mass index of 30 or greater. The authors used an inductive analytical process to translate women's experiences into themes. Women with obesity reported diverse maternity care experiences, with some reporting appropriate and satisfactory care, while most reported at least one negative encounter over the course of perinatal care. Three major themes emerged from the analysis: personalized care, depersonalized care, and setting the tone. Interactions with providers during pregnancy had psychological and emotional effects on women with obesity and influenced the content and perceived quality of their care. Further research is required to explore this phenomenon and its implications for care of women during pregnancy and birth outcomes. In the meantime, providers may wish to consider greater sensitivity to the needs of women with obesity during the perinatal period. © 2016 by the American College of Nurse-Midwives.

Usual source of care and the quality of medical care experiences: a cross-sectional survey of patients from a Taiwanese community.

PubMed

Tsai, Jenna; Shi, Leiyu; Yu, Wei-Lung; Lebrun, Lydie A

2010-07-01

This study used a recent patient survey to examine the relationship between having a usual source of care (USC) and the quality of ambulatory medical care experiences in Taiwan, where there is universal health insurance coverage. The study design was a cross-sectional survey of 879 patients in Taichung County, Taiwan. Children and adults visiting hospital-based physicians were included. Quality of care was measured using items from the Primary Care Assessment Tool (PCAT), representing 7 ambulatory medical care domains: first contact (ie, access and utilization), longitudinality (ie, ongoing care), coordination (ie, referrals and information systems), comprehensiveness (ie, services available and provided), family centeredness, community orientation, and cultural competence. USC was defined based on responses to 3 survey items from the PCAT. Having a USC was significantly associated with higher quality of medical care experiences. Specifically, having a USC was associated with improved accessibility and utilization, ongoing care, coordination of referrals, and healthcare providers' family centeredness and cultural competence. However, having a USC was not strongly related with comprehensiveness of services, coordination of information systems, or healthcare providers' community orientation. In a region with universal health insurance, patients with a USC reported higher quality of medical care experiences compared with those without a USC. Beyond the provision of health insurance coverage, efforts to improve quality of care should include policies promoting USC.

Measuring client experiences in long-term care in the Netherlands: a pilot study with the Consumer Quality Index Long-term Care.

PubMed

Triemstra, Mattanja; Winters, Sjenny; Kool, Rudolf B; Wiegers, Therese A

2010-04-12

This study aims to describe the development, testing and optimization of a new standard instrument, the Consumer Quality Index (CQ-index) Long-term Care, for measuring client experiences with long-term care in the Netherlands. Three versions of the CQ-index questionnaires and protocols for study sampling and data collection were developed, designed for interviews with residents of nursing or residential care homes and postal surveys among representatives of psychogeriatric residents and homecare clients. From July to November 2006 a pilot study was conducted among 2,697 clients of 68 nursing or residential care homes, 2,164 representatives of clients in 57 psychogeriatric care institutions, and 1,462 clients of 19 homecare organizations. We performed psychometric analyses and descriptive analyses, and evaluated the pilot study. The pilot study showed the feasibility and usability of the instruments, supported the multidimensionality of the questionnaires and showed first findings on client experiences and possibilities for quality improvement. Nine scales applied to all care settings: shared decision making, attitude and courtesy, information, body care, competence and safety of care, activities, autonomy, mental well-being, and availability of personnel. The pilot resulted in three optimized questionnaires and recommendations for nationwide implementation. The CQ-index Long-term Care provides a good basis to investigate the quality of nursing homes, residential care homes and homecare from the clients' perspective. This standardized instrument enables a nationwide comparison of the quality of long-term care for the purpose of transparency and quality assurance.

Transitioning from acute to primary health care nursing: an integrative review of the literature.

PubMed

Ashley, Christine; Halcomb, Elizabeth; Brown, Angela

2016-08-01

This paper seeks to explore the transition experiences of acute care nurses entering employment in primary health care settings. Internationally the provision of care in primary health care settings is increasing. Nurses are moving from acute care settings to meet the growing demand for a primary health care workforce. While there is significant research relating to new graduate transition experiences, little is known about the transition experience from acute care into primary health care employment. An integrative review, guided by Whittemore and Knafl's (2005) approach, was undertaken. Following a systematic literature search eight studies met the inclusion criteria. Papers which met the study criteria were identified and assessed against the inclusion and exclusion criteria. Papers were then subjected to methodological quality appraisal. Thematic analysis was undertaken to identify key themes within the data. Eight papers met the selection criteria. All described nurses transitioning to either community or home nursing settings. Three themes were identified: (1) a conceptual understanding of transition, (2) role losses and gains and (3) barriers and enablers. There is a lack of research specifically exploring the transitioning of acute care nurses to primary health care settings. To better understand this process, and to support the growth of the primary health care workforce there is an urgent need for further well-designed research. There is an increasing demand for the employment of nurses in primary health care settings. To recruit experienced nurses it is logical that many nurses will transition into primary health care from employment in the acute sector. To optimise retention and enhance the transition experience of these nurses it is important to understand the transition experience. © 2016 John Wiley & Sons Ltd.

Development and validation of the Consumer Quality index instrument to measure the experience and priority of chronic dialysis patients.

PubMed

van der Veer, Sabine N; Jager, Kitty J; Visserman, Ella; Beekman, Robert J; Boeschoten, Els W; de Keizer, Nicolette F; Heuveling, Lara; Stronks, Karien; Arah, Onyebuchi A

2012-08-01

Patient experience is an established indicator of quality of care. Validated tools that measure both experiences and priorities are lacking for chronic dialysis care, hampering identification of negative experiences that patients actually rate important. We developed two Consumer Quality (CQ) index questionnaires, one for in-centre haemodialysis (CHD) and the other for peritoneal dialysis and home haemodialysis (PHHD) care. The instruments were validated using exploratory factor analyses, reliability analysis of identified scales and assessing the association between reliable scales and global ratings. We investigated opportunities for improvement by combining suboptimal experience with patient priority. Sixteen dialysis centres participated in our study. The pilot CQ index for CHD care consisted of 71 questions. Based on data of 592 respondents, we identified 42 core experience items in 10 scales with Cronbach's α ranging from 0.38 to 0.88; five were reliable (α ≥ 0.70). The instrument identified information on centres' fire procedures as the aspect of care exhibiting the biggest opportunity for improvement. The pilot CQ index PHHD comprised 56 questions. The response of 248 patients yielded 31 core experience items in nine scales with Cronbach's α ranging between 0.53 and 0.85; six were reliable. Information on kidney transplantation during pre-dialysis showed most room for improvement. However, for both types of care, opportunities for improvement were mostly limited. The CQ index reliably and validly captures dialysis patient experience. Overall, most care aspects showed limited room for improvement, mainly because patients participating in our study rated their experience to be optimal. To evaluate items with high priority, but with which relatively few patients have experience, more qualitative instruments should be considered.

Patients' preferences for primary health care - a systematic literature review of discrete choice experiments.

PubMed

Kleij, Kim-Sarah; Tangermann, Ulla; Amelung, Volker E; Krauth, Christian

2017-07-11

Primary care is a key element of health care systems and addresses the main health problems of the population. Due to the demographic change, primary care even gains in importance. The knowledge of the patients' preferences can help policy makers as well as physicians to set priorities in their effort to make health care delivery more responsive to patients' needs. Our objective was to describe which aspects of primary care were included in preference studies and which of them were the most preferred aspects. In order to elicit the preferences for primary care, a systematic literature search was conducted. Two researchers searched three electronic databases (PubMed, Scopus, and PsycINFO) and conducted a narrative synthesis. Inclusion criteria were: focus on primary health care delivery, discrete choice experiment as elicitation method, and studies published between 2006 and 2015 in English language. We identified 18 studies that elicited either the patients' or the population's preferences for primary care based on a discrete choice experiment. Altogether the studies used 16 structure attributes, ten process attributes and four outcome attributes. The most commonly applied structure attribute was "Waiting time till appointment", the most frequently used process attribute was "Shared decision making / professional's attention paid to your views". "Receiving the 'best' treatment" was the most commonly applied outcome attribute. Process attributes were most often the ones of highest importance for patients or the population. The attributes and attribute levels used in the discrete choice experiments were identified by literature research, qualitative research, expert interviews, or the analysis of policy documents. The results of the DCE studies show different preferences for primary health care. The diversity of the results may have several reasons, such as the method of analysis, the selection procedure of the attributes and their levels or the specific research question of the study. As the results of discrete choice experiments depend on many different factors, it is important for a better comprehensibility of the studies to transparently report the steps undertaken in a study as well as the interim results regarding the identification of attributes and levels.

Pre-hospital burn mission as a unique experience: a qualitative study.

PubMed

Froutan, Razieh; Khankeh, Hamid Reza; Fallahi, Masoud; Ahmadi, Fazlollah; Norouzi, Kian

2014-12-01

A thorough understanding of experiences related to pre-hospital emergency care of burns is a prerequisite of skill promotion for medical personnel. The aim of the present study was to evaluate the experiences of pre-hospital emergency personnel during burn accidents. The present qualitative study was performed using a content analysis method. In total, 18 Iranian emergency care personnel participated in the study. A purposeful sampling method was applied until reaching data saturation. Data were collected using semi-structured interviews and field observations. Afterwards, the gathered data were analyzed through face content analysis. By analyzing 498 primary codes, four main categories; the nature of burn care, tension at the accident scene, gradual job 'burnout', and insufficient information, were extracted from the experiences of pre-hospital emergency personnel during burn care. These categories each included several sub-categories, which were classified according to their significant characteristics. This study showed that different factors affect the quality of pre-hospital clinical services for burns. Authorities and health system administrators should consider the physical and psychological health of their staff, and assign policies to improve the quality of pre-hospital medical care. According to the present results, it is recommended that the process of pre-hospital emergency care for burns be investigated further. Copyright © 2014 Elsevier Ltd and ISBI. All rights reserved.

Seeking health care through international medical tourism.

PubMed

Eissler, Lee Ann; Casken, John

2013-06-01

The purpose of this study was the exploration of international travel experiences for the purpose of medical or dental care from the perspective of patients from Alaska and to develop insight and understanding of the essence of the phenomenon of medical tourism. The study is conceptually oriented within a model of health-seeking behavior. Using a qualitative design, 15 Alaska medical tourists were individually interviewed. The data were analyzed using a hermeneutic process of inquiry to uncover the meaning of the experience. Six themes reflecting the experiences of Alaska medical tourists emerged: "my motivation," "I did the research," "the medical care I need," "follow-up care," "the advice I give," and "in the future." Subthemes further categorized data for increased understanding of the phenomenon. The thematic analysis provides insight into the experience and reflects a modern approach to health-seeking behavior through international medical tourism. The results of this study provide increased understanding of the experience of obtaining health care internationally from the patient perspective. Improved understanding of medical tourism provides additional information about a contemporary approach to health-seeking behavior. Results of this study will aid nursing professionals in counseling regarding medical tourism options and providing follow-up health care after medical tourism. Nurses will be able to actively participate in global health policy discussions regarding medical tourism trends. © 2013 Sigma Theta Tau International.

Meaning in family caregiving for people with dementia: a narrative study about relationships, values, and motivation, and how day care influences these factors.

PubMed

Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork

2017-01-01

In addition to care-related burdens, most caregivers of a person with dementia perceive a variety of positive and satisfying experiences, such as feeling needed and useful in their family caregiving role. "Meaning-focused coping" describes both positive and negative emotions in periods with high levels of stress. Day care service may have the potential to increase caregivers' positive experiences and meaning-focused coping, and positively influence interpersonal relationships between those giving care and those receiving care. The aim of this study was to gain knowledge about family caregivers' experiences of meaning in their caring role. Additionally, the influence of day care services on caregivers' experiences and motivation in their caregiving role is explored. A qualitative design based on individual interviews was used. The interviews were analyzed using a narrative method and a case study approach. Family caregivers' roles and coping strategies were related to their relational ties. Caregivers had to make decisions about whether to enhance, maintain, or let go of emotional ties to find a good balance between meeting their own needs and the needs of the person with dementia. Family caregivers reported that day care positively influenced their "relationship-oriented coping" and experience of meaning. Finding meaning in the role of a family caregiver for persons with dementia is closely connected to the caregivers' own values and goals. Finding a balance between attending to their own needs and the needs of the person with dementia is crucial. Day care has the potential to increase family caregivers' motivation to care by supporting their capacity to meet their own needs, cooperate and communicate with the person with dementia, and make competent and autonomous choices, thus increasing their feeling of mastery.

A systematic review of low back pain and sciatica patients' expectations and experiences of health care.

PubMed

Hopayian, Kevork; Notley, Caitlin

2014-08-01

Previous systematic reviews of patients' experience of health services have used mixed qualitative and quantitative studies. This review focused on qualitative studies, which are more suitable for capturing experience, using modern methods of synthesis of qualitative studies. To describe the experience of health care of low back pain and sciatica patients and the sources of satisfaction or dissatisfaction with special reference to patients who do not receive a diagnosis. A systematic review of qualitative studies. Primary qualitative studies identified from Medline, Embase, CINAHL, and Psychinfo databases. Conceptual themes of patients' experiences. Data collection and analysis were through thematic content analysis. Two reviewers independently screened titles and collected and analyzed data. The authors were in receipt of a Primary Care Research Bursary from National Health Service Suffolk and Norfolk Research Departments, a not-for-profit organization. Twenty-eight articles met the inclusion criteria. Most studies were of high quality. Nine themes emerged: the process and content of care, relationships and interpersonal skills, personalized care, information, the outcome of care, the importance of a diagnosis, delegitimation, recognizing the expert, and service matters. How care was given mattered greatly to patients, with importance given to receiving a perceived full assessment, consideration for the individual's context, good relationships, empathy, and the sharing of information. These aspects of care facilitated the acceptance by some of the limitations of health care and were spread across disciplines. Not having a diagnosis made coping more difficult for some but for others led to delegitimation, a feeling of not being believed. Service matters such as cost and waiting time received little mention. Although much research into the development of chronic low back pain (LBP) has focused on the patient, this review suggests that research into aspects of care also warrant research. The benefits of generic principles of care, such as personalization and communication, are important to patients with LBP and sciatica; so, practitioners may help their patients by paying as much attention to them as to specific interventions. When neither cure nor a diagnostic label is forthcoming, generic skills remain important for patient satisfaction. Copyright © 2014 Elsevier Inc. All rights reserved.

The experiences of midwives and nurses collaborating to provide birthing care: a systematic review.

PubMed

Macdonald, Danielle; Snelgrove-Clarke, Erna; Campbell-Yeo, Marsha; Aston, Megan; Helwig, Melissa; Baker, Kathy A

2015-11-01

Collaboration has been associated with improved health outcomes in maternity care. Collaborative relationships between midwives and physicians have been a focus of literature regarding collaboration in maternity care. However despite the front line role of nurses in the provision of maternity care, there has not yet been a systematic review conducted about the experiences of midwives and nurses collaborating to provide birthing care. The objective of this review was to identify, appraise and synthesize qualitative evidence on the experiences of midwives and nurses collaborating to provide birthing care.Specifically, the review question was: what are the experiences of midwives and nurses collaborating to provide birthing care? This review considered studies that included educated and licensed midwives and nurses with any length of practice. Nurses who work in labor and delivery, postpartum care, prenatal care, public health and community health were included in this systematic review.This review considered studies that investigated the experiences of midwives and nurses collaborating during the provision of birthing care. Experiences, of any duration, included any interactions between midwives and nurses working in collaboration to provide birthing care.Birthing care referred to: (a) supportive care throughout the pregnancy, labor, delivery and postpartum, (b) administrative tasks throughout the pregnancy, labor, delivery and postpartum, and (c) clinical skills throughout the pregnancy, labor, delivery and postpartum. The postpartum period included the six weeks after delivery.The review considered English language studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.This review considered qualitative studies that explored the experiences of collaboration in areas where midwives and nurses work together. Examples of these areas included: hospitals, birth centers, client homes, health clinics and other public or community health settings. These settings were located in any country, cultural context, or geographical location. A three-step search strategy was used to identify relevant published and unpublished studies. English papers from 1981 onwards were considered. The following databases were searched: Anthrosource, CENTRAL (The Cochrane Library), CINAHL, EMBASE, PsycINFO, PubMed, Social Services Abstracts and Sociological Abstracts. In addition to the databases, several grey literature sources were searched. Papers that were selected for retrieval were independently assessed for inclusion in the review by two JBI-trained reviewers. The two reviewers used a standardized critical appraisal instrument from the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Qualitative data were extracted from papers included in the review using the standardized data extraction tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Once qualitative studies were assessed using the the Joanna Briggs Institute Qualitative Assessment and Review Instrument critical appraisal tool, findings of the included studies were extracted. These findings were aggregated into categories according to their similarity in meaning. These categories were then subjected to a meta-synthesis to produce a comprehensive set of synthesized findings. Five studies were included in the review. Thirty-eight findings were extracted from the included studies and were aggregated into five categories. The five categories were synthesized into two synthesized findings. The two synthesized findings were:Synthesized finding1: Negative experiences of collaboration between nurses and midwives may be influenced by distrust, lack of clear roles, or unprofessional or inconsiderate behavior.Synthesized finding 2: If midwives and nurses have positive experiences collaborating thenthere is hope that the challenges of collaboration can be overcome. Qualitative evidence about the experiences of midwives and nurses collaborating to provide birthing care was identified, appraised and synthesized. Two synthesized findings were created from the findings of the five included studies. Midwives and nurses had negative experiences of collaboration which may be influenced by: distrust, unclear roles, or a lack of professionalism or consideration. Midwives and nurses had positive experiences of teamwork which can be a source of hope for overcoming the challenges of sharing care.There is clearly a gap in the literature about the collaborative experiences of midwives and nurses, given that only five studies were located for inclusion in the systematic review. More qualitative research exploring collaboration as a process and the interactional dynamics of midwives and nurses in a variety of practice and professional contexts is required.Distrust, unclear roles, and lack of professionalism and consideration must all be addressed. Strategies that address and minimize the occurrences of these three elements need to be developed and implemented in an effort to reduce negative collaborative experiences for midwives and nurses. Postive experiences of teamwork must be acknowleged and celebrated, and the challenges that sharing care present must be understood as a part of the collaborative process.More qualitative research is required to explore the collaborative process between midwives and nurses. Further exploration of their interactional dynamics, their relationship between power and collaboration, and the experiences of collaboration in a variety of professional and practice contexts is recommended.

Hospital care following emergency admission: a critical incident case study of the experiences of patients with advanced lung cancer and Chronic Obstructive Pulmonary Disease.

PubMed

Bailey, Cara; Hewison, Alistair; Karasouli, Eleni; Staniszewska, Sophie; Munday, Daniel

2016-08-01

To explore the experiences of patients with advanced Chronic Obstructive Pulmonary Disease (COPD) and lung cancer, their carers and healthcare professionals following emergency admission to acute care hospital. Emergency admissions of people with lung cancer and COPD have increased and there is global concern about the number of patients who die in hospital. The experience of patients with advanced lung cancer and COPD admitted to hospital as an emergency when nearing the end of life has not previously been investigated. Qualitative critical incident case study. Semistructured interviews were conducted with 39 patients (15 with COPD and 24 with lung cancer), 20 informal carers and 50 healthcare professionals, exploring patients' experiences of emergency hospital admission. Interviews took place after admission and following discharge. Participants nominated relatives and healthcare professionals for interview. Data were analysed thematically. Patients were satisfied with their 'emergency' care but not the care they received once their initial symptoms had been stabilised. The poorer quality care they experienced was characterised by a lack of attention to their fundamental needs, lack of involvement of the family, poor communication about care plans and a lack of continuity between primary and secondary care. A conceptual model of 'spectacular' and 'subtacular' trajectories of care was used to relate the findings to the wider context of health care provision. The complex nature of illness for patients with advanced respiratory disease makes emergency hospital admissions likely. Whilst patients (with COPD and lung cancer) were satisfied with care in the acute 'spectacular' phase of their admission, more attention needs to be given to the continuing care needs of patients in the 'subtacular' phase. This is the first study to explore the patient experience of acute care following an emergency admission and identifies where there is potential for care to be improved. © 2016 John Wiley & Sons Ltd.

Equity in patient experiences of primary care in community health centers using primary care assessment tool: a comparison of rural-to-urban migrants and urban locals in Guangdong, China.

PubMed

Zhong, Chenwen; Kuang, Li; Li, Lina; Liang, Yuan; Mei, Jie; Li, Li

2018-04-27

The equity of rural-to-urban migrants' health care utilization is already on China's agenda. The Chinese government has been embarking on efforts to improve the financial and geographical accessibility of health care for migrants by strengthening primary care services and providing universal coverage. Patient experiences are equally vital to migrants' health care utilization. To our knowledge, no studies have focused on equity in the patient experiences between migrants and locals. Based on a patient survey from Guangdong, China, which has a large number of rural-to-urban migrants, our study assessed the equity in the primary care patient experiences between rural-to-urban migrants and urban locals in the same health insurance context, since different forms of insurance can affect the patient experiences of primary care. We stratified our samples by different insurance types into three layers. We assessed primary care patient experiences using a validated Chinese version of the Primary Care Assessment Tool (PCAT), including eight primary care attributes. A 'PCAT total score' was calculated. Data were collected through face-to-face and one-on-one surveys in 2014. Propensity score matching (PSM) was used for each layer to generate comparable samples between rural-to-urban migrants and urban locals. Based on the matched dataset, a t-test was employed to compare the primary care patient experiences of the two groups. Using PSM, 220 patients in the rural-to-urban migrants group were matched to 220 patients in the urban locals group. After the matching, the observed confounding variables were balanced, and the PCAT scores were almost equal between the two groups. The only slight differences existed in the Urban Employee Basic Medical Insurance layer and in the without basic medical insurance coverage layer. Equity in the primary care patient experiences between rural-to-urban migrants and urban locals seems to have been achieved to some extent. However, there is room for improvement in the equity of coordination of care and comprehensiveness. Policy makers should consider strengthening these two dimensions by integrating the health care system. More attention should be focused on helping migrants break down language and cultural barriers and improving the patient-physician communication process.

Health Care Professionals' Death Attitudes, Experiences, and Advance Directive Communication Behavior

ERIC Educational Resources Information Center

Black, Kathy

2007-01-01

The study surveyed 135 health care professionals (74 nurses, 32 physicians, and 29 social workers) to examine their personal death attitudes and experiences in relation to their reported advance directive communication practice behavior. Negative correlations were found between collaborating with other health care professionals regarding the…

Rural-to-Urban Migrants' Experiences with Primary Care under Different Types of Medical Institutions in Guangzhou, China

PubMed Central

Zeng, Jiazhi; Shi, Leiyu; Zou, Xia; Chen, Wen; Ling, Li

2015-01-01

Objectives China is facing the unprecedented challenge of rapidly increasing rural-to-urban migration. Migrants are in a vulnerable state when they attempt to access to primary care services. This study was designed to explore rural-to-urban migrants’ experiences in primary care, comparing their quality of primary care experiences under different types of medical institutions in Guangzhou, China. Methods The study employed a cross-sectional survey of 736 rural-to-urban migrants in Guangzhou, China in 2014. A validated Chinese version of Primary Care Assessment Tool—Adult Short Version (PCAT-AS), representing 10 primary care domains was used to collect information on migrants’ quality of primary care experiences. These domains include first contact (utilization), first contact (accessibility), ongoing care, coordination (referrals), coordination (information systems), comprehensiveness (services available), comprehensiveness (services provided), family-centeredness, community orientation and culturally competent. These measures were used to assess the quality of primary care performance as reported from patients’ perspective. Analysis of covariance was conducted for comparison on PCAT scores among migrants accessing primary care in tertiary hospitals, municipal hospitals, community health centers/community health stations, and township health centers/rural health stations. Multiple linear regression models were used to explore factors associated with PCAT total scores. Results After adjustments were made, migrants accessing primary care in tertiary hospitals (25.49) reported the highest PCAT total scores, followed by municipal hospitals (25.02), community health centers/community health stations (24.24), and township health centers/rural health stations (24.18). Tertiary hospital users reported significantly better performance in first contact (utilization), first contact (accessibility), coordination (information system), comprehensiveness (service available), and cultural competence. Community health center/community health station users reported significantly better experience in the community orientation domain. Township health center/rural health station users expressed significantly better experience in the ongoing care domain. There were no statistically significant differences across settings in the ongoing care, comprehensiveness (services provided), and family-centeredness domains. Multiple linear regression models showed that factors positively associated with higher PCAT total scores also included insurance covering parts of healthcare payment (P<0.001). Conclusions This study highlights the need for improvement in primary care provided by primary care institutions for rural-to-urban migrants. Relevant policies related to medical insurance should be implemented for providing affordable healthcare services for migrants accessing primary care. PMID:26474161

The Effect of Primary Care Provider Turnover on Patient Experience of Care and Ambulatory Quality of Care

PubMed Central

Reddy, Ashok; Pollack, Craig E.; Asch, David A.; Canamucio, Anne; Werner, Rachel M.

2017-01-01

IMPORTANCE Primary care provider (PCP) turnover is common and can disrupt patient continuity of care. Little is known about the effect of PCP turnover on patient care experience and quality of care. OBJECTIVE To measure the effect of PCP turnover on patient experiences of care and ambulatory care quality. DESIGN, SETTING, AND PARTICIPANTS Observational, retrospective cohort study of a nationwide sample of primary care patients in the Veterans Health Administration (VHA). We included all patients enrolled in primary care at the VHA between 2010 and 2012 included in 1 of 2 national data sets used to measure our outcome variables: 326 374 patients in the Survey of Healthcare Experiences of Patients (SHEP; used to measure patient experience of care) associated with 8441 PCPs and 184 501 patients in the External Peer Review Program (EPRP; used to measure ambulatory care quality) associated with 6973 PCPs. EXPOSURES Whether a patient experienced PCP turnover, defined as a patient whose provider (physician, nurse practitioner, or physician assistant) had left the VHA (ie, had no patient encounters for 12 months). MAIN OUTCOMES AND MEASURES Five patient care experience measures (from SHEP) and 11 measures of quality of ambulatory care (from EPRP). RESULTS Nine percent of patients experienced a PCP turnover in our study sample. Primary care provider turnover was associated with a worse rating in each domain of patient care experience. Turnover was associated with a reduced likelihood of having a positive rating of their personal physician of 68.2% vs 74.6% (adjusted percentage point difference, −5.3; 95% CI, −6.0 to −4.7) and a reduced likelihood of getting care quickly of 36.5% vs 38.5% (adjusted percentage point difference, −1.1; 95% CI, −2.1 to −0.1). In contrast, PCP turnover was not associated with lower quality of ambulatory care except for a lower likelihood of controlling blood pressure of 78.7% vs 80.4% (adjusted percentage point difference, −1.44; 95% CI, −2.2 to −0.7). In 9 measures of ambulatory care quality, the difference between patients who experienced no PCP turnover and those who had a PCP turnover was less than 1 percentage point. These effects were moderated by the patients’ continuity with their PCP prior to turnover, with a larger detrimental effect of PCP turnover among those with higher continuity prior to the turnover. CONCLUSIONS AND RELEVANCE Primary care provider turnover was associated with worse patient experiences of care but did not have a major effect on ambulatory care quality. PMID:25985320

"What happens behind the curtains?" An exploration of ICU nurses' experiences of post mortem care on patients who have died in intensive care.

PubMed

de Swardt, Carien; Fouché, Nicola

2017-12-01

The aim of this study was to explore the experiences of intensive care nurses performing post mortem care on patients who had died in an intensive care unit at a private hospital in Cape Town. The study further sets out to identify educational needs and to offer recommendations that may address these needs for this sample of nurses. A qualitative research design using a descriptive method was used to explore the experiences of a purposive heterogeneous sample of six nurses who were working in an intensive care unit in a private hospital in Cape Town. A semi-structured interview which was audio-taped and transcribed verbatim was employed to collect data. Colaizzi's (1978) seven step inductive method was used to formulate naïve themes. Following participant feedback, three main themes emerged: care of the dead body, detachment and thanatophobia. Safeguarding the integrity and physical appearance of the dead body was the major finding and of the utmost priority for the participants in this study. Regardless of how the nurses felt about death, providing professional and quality care to the dead body and the family was seen as significantly important. The nurses, whilst performing post mortem care, experienced detachment from various relationships. This comprised of the nurse detaching him/herself professionally and emotionally from the dead patient, the family and him/herself from the death experience. This 'unspoken' experience of thanatophobia became apparent when the nurses were confronted by the reality of their own deaths. In a technological society, where answers to many questions can be pursued through science, understanding the experience of death, as opposed to dying, may be logically incomprehensible. Death remains one of the most traumatic events experienced by the patient and their family, and in some instances nurses themselves. The study has drawn attention to the nurses' experiences and in doing so; the emotional and educational needs have been identified, and in part, pedagogical offerings are recommended. Copyright © 2017 Elsevier Ltd. All rights reserved.

The association between spiritual well-being and burnout in intensive care unit nurses: A descriptive study.

PubMed

Kim, Hyun Sook; Yeom, Hye-Ah

2018-06-01

To describe the spiritual well-being and burnout of intensive care unit nurses and examine the relationship between these factors. This was a cross-sectional descriptive study. The participants were 318 intensive care unit recruited from three university hospitals in South Korea. The survey questionnaire included demographic information, work-related characteristics and end-of-life care experience, along with the Spiritual Well-Being Scale and Burnout Questionnaire. The data were analysed using descriptive statistics, t-tests, ANOVA with Scheffé test and a multiple regression analysis. The burnout level among intensive care unit nurses was 3.15 out of 5. A higher level of burnout was significantly associated with younger age, lower education level, single marital status, having no religion, less work experience and previous end-of-life care experience. Higher levels of spiritual well-being were associated with lower levels of burnout, even after controlling for the general characteristics in the regression model. Intensive care unit nurses experience a high level of burnout in general. Increased spiritual well-being might reduce burnout among intensive care unit nurses. Younger and less experienced nurses should receive more attention as a vulnerable group with lower spirituality and greater burnout in intensive care unit settings. Copyright © 2017 Elsevier Ltd. All rights reserved.

Medical Home Implementation Gaps for Seniors: Perceptions and Experiences of Primary Care Medical Practices.

PubMed

Hoff, Timothy; DePuccio, Matthew

2018-07-01

The study objective was to better understand specific implementation gaps for various aspects of patient-centered medical home (PCMH) care delivered to seniors. The study illuminates the physician and staff experience by focusing on how individuals make sense of and respond behaviorally to aspects of PCMH implementation. Qualitative data from 51 in-depth, semi-structured interviews across six different National Committee for Quality Assurance (NCQA)-accredited primary care practices were collected and analyzed. Physicians and staff identified PCMH implementation gaps for their seniors: (a) performing in-depth clinical assessments, (b) identifying seniors' life needs and linking them with community resources, and (c) care management and coordination, in particular self-management support for seniors. Prior experiences trying to perform these aspects of PCMH care for older adults produced collective understandings that led to inaction and avoidance by medical practices around the first two gaps, and proactive behavior that took strategic advantage of external incentives for addressing the third gap. Greater understanding of physician and staff's PCMH implementation experiences, and the learning that accumulates from these experiences, allows for a deeper understanding of how primary care practices choose to enact the medical home model for seniors on an everyday basis.

Customer care in the NHS.

PubMed

Ruddick, Fred

2015-01-20

Viewing individuals in need of NHS care as customers has the potential to refocus the way their care is delivered. This article highlights some of the benefits of reframing the nurse-patient relationship in terms of customer care, and draws parallels between good customer care and the provision of high quality patient care in the NHS. It explores lessons to be learned from those who have studied the customer experience, which can be adapted to enhance the customer care experience within the health service. Developing professional expertise in the knowledge and skills that underpin good-quality interpersonal encounters is essential to improve the customer experience in health care and should be prioritised alongside the development of more technical skills. Creating a culture where emotional intelligence, caring and compassion are essential requirements for all nursing staff will improve patient satisfaction.

Patient Experiences of Decentralized HIV Treatment and Care in Plateau State, North Central Nigeria: A Qualitative Study

PubMed Central

Kolawole, Grace O.; Gilbert, Hannah N.; Dadem, Nancin Y.; Genberg, Becky L.; Agbaji, Oche O.

2017-01-01

Background. Decentralization of care and treatment for HIV infection in Africa makes services available in local health facilities. Decentralization has been associated with improved retention and comparable or superior treatment outcomes, but patient experiences are not well understood. Methods. We conducted a qualitative study of patient experiences in decentralized HIV care in Plateau State, north central Nigeria. Five decentralized care sites in the Plateau State Decentralization Initiative were purposefully selected. Ninety-three patients and 16 providers at these sites participated in individual interviews and focus groups. Data collection activities were audio-recorded and transcribed. Transcripts were inductively content analyzed to derive descriptive categories representing patient experiences of decentralized care. Results. Patient participants in this study experienced the transition to decentralized care as a series of “trade-offs.” Advantages cited included saving time and money on travel to clinic visits, avoiding dangers on the road, and the “family-like atmosphere” found in some decentralized clinics. Disadvantages were loss of access to ancillary services, reduced opportunities for interaction with providers, and increased risk of disclosure. Participants preferred decentralized services overall. Conclusion. Difficulty and cost of travel remain a fundamental barrier to accessing HIV care outside urban centers, suggesting increased availability of community-based services will be enthusiastically received. PMID:28331636

Patient Experiences of Decentralized HIV Treatment and Care in Plateau State, North Central Nigeria: A Qualitative Study.

PubMed

Kolawole, Grace O; Gilbert, Hannah N; Dadem, Nancin Y; Genberg, Becky L; Agaba, Patricia A; Okonkwo, Prosper; Agbaji, Oche O; Ware, Norma C

2017-01-01

Background. Decentralization of care and treatment for HIV infection in Africa makes services available in local health facilities. Decentralization has been associated with improved retention and comparable or superior treatment outcomes, but patient experiences are not well understood. Methods. We conducted a qualitative study of patient experiences in decentralized HIV care in Plateau State, north central Nigeria. Five decentralized care sites in the Plateau State Decentralization Initiative were purposefully selected. Ninety-three patients and 16 providers at these sites participated in individual interviews and focus groups. Data collection activities were audio-recorded and transcribed. Transcripts were inductively content analyzed to derive descriptive categories representing patient experiences of decentralized care. Results. Patient participants in this study experienced the transition to decentralized care as a series of "trade-offs." Advantages cited included saving time and money on travel to clinic visits, avoiding dangers on the road, and the "family-like atmosphere" found in some decentralized clinics. Disadvantages were loss of access to ancillary services, reduced opportunities for interaction with providers, and increased risk of disclosure. Participants preferred decentralized services overall. Conclusion. Difficulty and cost of travel remain a fundamental barrier to accessing HIV care outside urban centers, suggesting increased availability of community-based services will be enthusiastically received.

A qualitative descriptive study of the group prenatal care experience: perceptions of women with low-risk pregnancies and their midwives.

PubMed

McDonald, Sarah D; Sword, Wendy; Eryuzlu, Leyla E; Biringer, Anne B

2014-09-26

Group prenatal care (GPC) originated in 1994 as an innovative model of prenatal care delivery. In GPC, eight to twelve pregnant women of similar gestational age meet with a health care provider to receive their prenatal check-up and education in a group setting. GPC offers significant health benefits in comparison to traditional, one-on-one prenatal care. Women in GPC actively engage in their healthcare and experience a supportive network with one another. The purpose of this study was to better understand the GPC experience of women and care providers in a lower risk group of women than often has been previously studied. This qualitative descriptive study collected data through three focus group interviews--two with women who had completed GPC at a midwifery clinic in Ontario, Canada and one with the midwives at the clinic. Data was analyzed through open coding to identify themes. Nine women and five midwives participated in the focus groups, from which eight categories as well as further subcategories were identified: The women and midwives noted reasons for participating (connections, education, efficiency). Participants suggested both benefits (learning from the group, normalizing the pregnancy experience, preparedness for labour and delivery, and improved relationships as all contributing to positive health outcomes) and concerns with GPC (e.g. sufficient time with the midwife) which generally diminished with experience. Suggestions for change focused on content, environment, partners, and access to the midwives. Challenges to providing GPC included scheduling and systems-level issues such as funding and regulation. Flexibility and commitment to the model facilitated it. Comparison with other models of care identified less of a relationship with the midwife, but more information received. In promoting GPC, women would emphasize the philosophy of care to other women and the midwives would promote the reduction in workload and women's independence to colleagues. Overall, women and midwives expressed a high level of satisfaction with their GPC experience. This study gained insight into previously unexplored areas of the GPC experience, perceptions of processes that contribute to positive health outcomes, strategies to promote GPC and elements that enhance the feasibility of GPC.

Continuing professional development for volunteers working in palliative care in a tertiary care cancer institute in India: a cross-sectional observational study of educational needs.

PubMed

Deodhar, Jayita Kedar; Muckaden, Mary Ann

2015-01-01

Training programs for volunteers prior to their working in palliative care are well-established in India. However, few studies report on continuing professional development programs for this group. To conduct a preliminary assessment of educational needs of volunteers working in palliative care for developing a structured formal continuing professional development program for this group. Cross-sectional observational study conducted in the Department of Palliative Medicine of a tertiary care cancer institute in India. Participant volunteers completed a questionnaire, noting previous training, years of experience, and a comprehensive list of topics for inclusion in this program, rated in order of importance according to them. Descriptive statistics for overall data and Chi-square tests for categorical variables for group comparisons were applied using Statistical Package for Social Sciences version 18. Fourteen out of 17 volunteers completed the questionnaire, seven having 5-10-years experience in working in palliative care. A need for continuing professional development program was felt by all participants. Communication skills, more for children and elderly specific issues were given highest priority. Spiritual-existential aspects and self-care were rated lower in importance than psychological, physical, and social aspects in palliative care. More experienced volunteers (>5 years of experience) felt the need for self-care as a topic in the program than those with less (<5-years experience) (P < 0.05). Understanding palliative care volunteers' educational needs is essential for developing a structured formal continuing professional development program and should include self-care as a significant component.

The experience of nurses in care for culturally diverse families: A qualitative meta-synthesis 1

PubMed Central

Murcia, Saidy Eliana Arias; Lopez, Lucero

2016-01-01

Abstract Objective: to understand the experience of nurses in care delivery to culturally diverse families. Method: qualitative meta-synthesis. Exhaustive search in seven databases, three repositories and a manual search in references without time limit, in English, Spanish and Portuguese, resulting in 1609 potentially relevant studies. These were assessed based on the title, summary and full text, determining the final inclusion of 14 studies. Two independent reviewers used the Critical Appraisal Skills Programme (CASP) to assess the quality. The interpretative synthesis implied permanent contrast and consensus among the authors, revealing four categories and one meta-theme. Results: "taking care of a culturally diverse family, the experience of crossing a tightrope". Conclusion: the experience of nurses in care delivery to culturally diverse families is demanding and challenging because it imprints a constant tension among barriers, cultural manifestations and the ethical responsibility of care, incipiently revealing elements of cultural competency. The omission of information in the participants' reports in the studies represents a limitation. The findings offer a baseline for professionals and organizations to focus their intervention efforts on the continuing barriers in care delivery to culturally diverse families and strengthens the need for cultural competency training for nurses. PMID:27384469

Mental health service users' experiences of diabetes care by Mental Health Nurses: an exploratory study.

PubMed

Nash, M

2014-10-01

This paper is a report of a study exploring mental health service users' (MHSUs') experiences of diabetes care. Diabetes is a growing clinical concern in mental health nursing practice. However, little is known about MHSUs' experience of diabetes care. This is a descriptive qualitative study. Semi-structured telephone interviews were held between June and October 2011, with seven MHSUs who had diabetes. Participants reported experiences of stigma and diagnostic overshadowing (DO) when reporting symptoms of diabetes or when feeling unwell. Participants also encountered a split between their mental health and diabetes care needs, which resulted in a lack of holistic or integrated care. All participants mentioned experiencing complications of diabetes even to the extent of diabetic ketoacidosis. Mental health nurses (MHNs) must critically reflect on their attitudes towards service users that report physical symptoms to ensure that stigma and DO do not constitute barriers to appropriate screening and treatment. The complex relationship that exists between mental illness and diabetes requires MHNs to ensure physical and mental health care are wholly integrated and not split. Education needs are apparent so that symptoms and complications can be recognized and treated accordingly. © 2014 John Wiley & Sons Ltd.

Convergent Validity of the Early Memory Index in Two Primary Care Samples.

PubMed

Porcerelli, John H; Cogan, Rosemary; Melchior, Katherine A; Jasinski, Matthew J; Richardson, Laura; Fowler, Shannon; Morris, Pierre; Murdoch, William

2016-01-01

Karliner, Westrich, Shedler, and Mayman (1996) developed the Early Memory Index (EMI) to assess mental health, narrative coherence, and traumatic experiences in reports of early memories. We assessed the convergent validity of EMI scales with data from 103 women from an urban primary care clinic (Study 1) and data from 48 women and 24 men from a suburban primary care clinic (Study 2). Patients provided early memory narratives and completed self-report measures of psychopathology, trauma, and health care utilization. In both studies, lower scores on the Mental Health scale and higher scores on the Traumatic Experiences scale were related to higher scores on measures of psychopathology and childhood trauma. Less consistent associations were found between the Mental Health and Traumatic Experiences scores and measures of health care utilization. The Narrative Coherence scale showed inconsistent relationships across measures in both samples. In analyses assessing the overall fit between hypothesized and actual correlations between EMI scores and measures of psychopathology, severity of trauma symptoms, and health care utilization, the Mental Health scale of the EMI demonstrated stronger convergent validity than the EMI Traumatic Experiences scale. The results provide support for the convergent validity of the Mental Health scale of the EMI.

Leading processes of patient care and treatment in hierarchical healthcare organizations in Sweden--process managers' experiences.

PubMed

Nilsson, Kerstin; Sandoff, Mette

2015-01-01

The purpose of this study is to gain better understanding of the roles and functions of process managers by describing Swedish process managers' experiences of leading processes involving patient care and treatment when working in a hierarchical health-care organization. This study is based on an explorative design. The data were gathered from interviews with 12 process managers at three Swedish hospitals. These data underwent qualitative and interpretative analysis with a modified editing style. The process managers' experiences of leading processes in a hierarchical health-care organization are described under three themes: having or not having a mandate, exposure to conflict situations and leading process development. The results indicate a need for clarity regarding process manager's responsibility and work content, which need to be communicated to all managers and staff involved in the patient care and treatment process, irrespective of department. There also needs to be an emphasis on realistic expectations and orientation of the goals that are an intrinsic part of the task of being a process manager. Generalizations from the results of the qualitative interview studies are limited, but a deeper understanding of the phenomenon was reached, which, in turn, can be transferred to similar settings. This study contributes qualitative descriptions of leading care and treatment processes in a functional, hierarchical health-care organization from process managers' experiences, a subject that has not been investigated earlier.

How nurses and their work environment affect patient experiences of the quality of care: a qualitative study

PubMed Central

2014-01-01

Background Healthcare organisations monitor patient experiences in order to evaluate and improve the quality of care. Because nurses spend a lot of time with patients, they have a major impact on patient experiences. To improve patient experiences of the quality of care, nurses need to know what factors within the nursing work environment are of influence. The main focus of this research was to comprehend the views of Dutch nurses on how their work and their work environment contribute to positive patient experiences. Methods A descriptive qualitative research design was used to collect data. Four focus groups were conducted, one each with 6 or 7 registered nurses in mental health care, hospital care, home care and nursing home care. A total of 26 nurses were recruited through purposeful sampling. The interviews were audiotaped, transcribed and subjected to thematic analysis. Results The nurses mentioned essential elements that they believe would improve patient experiences of the quality of nursing care: clinically competent nurses, collaborative working relationships, autonomous nursing practice, adequate staffing, control over nursing practice, managerial support and patient-centred culture. They also mentioned several inhibiting factors, such as cost-effectiveness policy and transparency goals for external accountability. Nurses feel pressured to increase productivity and report a high administrative workload. They stated that these factors will not improve patient experiences of the quality of nursing care. Conclusions According to participants, a diverse range of elements affect patient experiences of the quality of nursing care. They believe that incorporating these elements into daily nursing practice would result in more positive patient experiences. However, nurses work in a healthcare context in which they have to reconcile cost-efficiency and accountability with their desire to provide nursing care that is based on patient needs and preferences, and they experience a conflict between these two approaches. Nurses must gain autonomy over their own practice in order to improve patient experiences. PMID:24923663

Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.

PubMed

Busolo, David; Woodgate, Roberta

2015-01-01

The objective of this review is to synthesize the best available evidence on palliative care experiences of adult cancer patients from ethnocultural groups.More specifically, this systematic review seeks to answer the following questions:1. What are the palliative care experiences of adult cancer patients from diverse ethnocultural groups?2. What meanings do adult patients with cancer from diverse ethnocultural groups assign to their experiences with palliative care? Globally, over 20.4 million people need palliative care services annually. The majority of these people (19 million) are adults, with 34% of them being patients diagnosed with cancer. With the current increase in the aging population, especially in developed countries, the number of adults requiring palliative care is expected to rise. Furthermore, how palliative care is offered and received continues to be shaped by culture and ethnicity. Likewise, culture and ethnicity influence how palliative care patients experience diseases like cancer, and seek and utilize palliative care services. Also, healthcare providers sometimes find it challenging to address the palliative care needs of patients from different ethnocultural groups. Sometimes these challenges are believed to be due to cultural incompetence of the care provider. When palliative care patients and their providers differ in their perception of care needs and how to address them, negative palliative care experiences are likely to ensue. Therefore, as the demand for palliative care increases, and ethnocultural factors continue to affect palliation, it is important to gain a better understanding of palliative care experiences of patients from different ethnocultural groups.The terms culture and ethnicity have been defined and used differently in literature which sometimes lead to confusion. Ethnicity has been defined as distinctive shared origins or social backgrounds and traditions of a group of people that are maintained between generations and bring about a sense of identity that may encompass a common language and religion. Ethnicity is fluid and should not be confused with nationality or migration or race. In this review, we define ethnicity in relation to the self-identification of participants in studies that will be included in the review.Culture refers to patterns of explanatory models, beliefs, values and customs. These patterns may be informed and expressed in things like diet, clothing or rituals, or in the form of language and social or political systems. Culture may be fluid because of developments in people's lives. In light of the aforementioned definitions, and recognizing the inconsistency in how these terms are sometimes used, the authors of this review define ethnocultural patients, as described in papers to be reviewed, as those who belong to an ethnic group by way of involvement, attachment, self-labelling or attitude towards the group, and who share cultural traditions, ancestry, language, nationality or country of origin.Palliative care in the context of cancer focuses on the improvement of the quality of life of patients by addressing their physical, emotional and spiritual needs, and by supporting their families. Palliative care is often associated with supportive and hospice care. Supportive care emphasizes meeting patients' needs such as physical, mental, social, psychological, emotional and material needs from the period before diagnosis, during diagnosis, treatment to the follow-up period in the cancer trajectory. Hospice care in the context of cancer aims to relieve patients' pain and suffering, and improve their quality of life. Hospice care includes palliative care services and other services such as case management, respite care and bereavement care. Hospice care focuses on patients with terminal illness (i.e. with expected survival of less than six months) and their families. Moreover, hospice care is facilitated by a multidisciplinary team of physicians, nurses, social workers, chaplains, home health aides and volunteers.Palliative care needs for cancer patients are numerous and may include needs related to activities of daily living, communication, sexuality, physical needs, psychological needs, fear, spiritual wellbeing, socioeconomic aspects and insufficiency of information. Cancer patients often report of suffering, pain and being in constant need of support. In dealing with their suffering, some patients seek internal motivation by looking at the disease as a life challenge. Other patients turn to external sources of motivation like religion, or peer and family support groups.Patients from different ethnocultural groups report similar as well as dissimilar palliative care needs and experiences. With respect to similarities, a study from the United States found that African American and Caucasian patients alike valued practical assistance from social groups. Participants from both ethnocultural groups valued friends and families that listened to their cancer-related concerns. Similarly, Turkish and Moroccan patients in a study conducted in Netherlands valued friends and family members that were there for them. Additionally, participants particularly of African American descent treasured positive attitudes from people around them and valued support from religion and faith communities. These sentiments are echoed in a palliative care study conducted in the United Kingdom. In the UK study, Caribbean Blacks and British White patients appreciated the significance of social networks and partner or spousal support in their cancer trajectory.In regards to unsupportive palliative care experiences, authors of the United States study report that African Americans and Caucasians had more similarities than differences. Firstly, both ethnocultural groups shared experiences of losing association with family and close friends after they learnt of the patients' diagnosis. These sentiments were also reported by Danish-born and immigrant patients in a study by Kristiansen and colleagues. Secondly, both African American and Caucasian patients felt responsible for the emotional wellbeing of their loved ones.When it comes to differences in palliative care needs and experiences, Grange and colleagues report that African American and Caucasian participants valued provision of housing which included daily patient care. Participants treasured the opportunity to either move or have family members move in and live with them. However, more African American than Caucasian participants had experiences of moving in with a family member. Important differences in unsupportive palliative care were also reported. Although both African Americans and Caucasians lost friends and family members following knowledge of the cancer diagnoses, more African Americans than Caucasians were likely to report losing friendship. Additionally, African Americans experienced diminished independence mainly because of overprotection from family and friends. Diminishing independence is echoed in the Dutch study involving Turkish and Moroccan patients. However, in the Dutch study, healthcare providers appeared to advocate for patients' independence which contradicted with the value placed by family members in protecting their loved one.In another American study, Latina women desired health-related information more often than their Caucasian American counterparts. The need for information by Latina women was irrespective of their socio-demographic factors, including level of education.The aforementioned similarities and differences in palliative care experiences call for further exploration of ethnocultural palliative care patients' experiences. A better understanding of their experiences will create avenues for finding better ways of providing palliative care, preventing psychological distress and improving quality of life and death.Understanding ethnocultural issues is important because the unique characteristics of ethnocultural groups often inform approaches to palliative care. Ethnocultural meanings of illness, suffering and dying define the theoretical underpinnings that patients and healthcare providers draw upon in their relations. Furthermore, Baker suggests that the provision and receipt of palliative care is more related to culture or ethnicity than to age, education, socioeconomic status or other variables. Moreover, culture affects communication, decision-making, response to symptoms, treatment choices and emotional expression at the end of life.Palliative care patients often regard recommendations from healthcare providers as very useful. Similarly, healthcare providers may find ethnocultural knowledge beneficial in the provision of palliative care. When ethnocultural knowledge is lacking, healthcare providers, especially those with minimal training on ethnocultural issues, may provide unsatisfactory palliative care. Similarly, when ethnocultural differences are overlooked or inadequately addressed, inferior care often occurs. Inferior care which may involve inequality in utilization of and access to palliative care services, pain and symptom management and location of death, is especially disturbing when adequate palliative care resources exist in some health institutions.Although qualitative and quantitative research has been conducted in this area, no systematic review compiling findings on ethnocultural patients' experiences of palliative care has been conducted or is underway as per the Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews or PROSPERO. The purpose of this systematic review is to summarize findings of qualitative studies that focus on ethnocultural patients' experience of palliative care. (ABSTRACT TRUNCATED)

Counseling Psychology Doctoral Students' Training Experiences in Primary Care Psychology

ERIC Educational Resources Information Center

Cox, Jared

2011-01-01

This qualitative study focused on counseling psychology doctoral students' perspectives regarding their practicum training experience in primary care psychology. The four participants included three females and one male. Semi-structured individual and focus group interviews were used to explore participants' experiences. The participants described…

Nurses, the Oppressed Oppressors: A Qualitative Study

PubMed Central

Rooddehghan, Zahra; ParsaYekta, Zohreh; Nasrabadi, Alireza Nikbakht

2015-01-01

Healthcare equity, defined as rightful and fair care provision, is a key objective in all health systems. Nurses commonly experience cases of equity/inequity when caring for patients. The present study was the first to explain nurses’ experience of equal care. A qualitative study sought to describe the experiences of 18 clinical nurses and nurse managers who were selected through purposive sampling. The inclusion criteria were the nurses’ familiarity with the subject of the study and willingness to participate. The data were collected through in-depth, unstructured, face-to-face interviews. The sampling continued up to data saturation. All the interviews were recorded and then transcribed word by word. The data were analyzed using thematic analysis. The major theme extracted in this study was the equation between submissiveness and oppression in nurses. It had two subthemes, namely the oppressed nurse and the oppressive nurse. The first subtheme comprised three categories including nurses’ occupational dissatisfaction, discrimination between nursing personnel, and favoring physicians over nurses. The second subtheme consisted of three categories, namely habit-oriented care provision, inappropriate care delegation, and care rationing while neglecting patient needs. When equal care provision was concerned, the participating nurses fluctuated between states of oppression and submissiveness. Hence, equal conditions for nurses are essential to equal care provision. In fact, fair behavior toward nurses would lead to equity nursing care provision and increase satisfaction with the healthcare system. PMID:26156912

Experiences of family physicians who practise primary care obstetrics in groups.

PubMed

Koppula, Sudha; Brown, Judith B; Jordan, John M

2011-02-01

The purpose of this study was to explore the experiences of family physicians in primary care obstetrical groups. Using a qualitative approach, in-depth interviews were conducted with 12 Edmonton family physicians who participated in primary care obstetrical groups. Experiences with respect to several aspects of group obstetrical practice were examined including advantages and challenges of primary care obstetrical groups, provision of patient care by a group, fit with other work commitments, and sustainability of the groups. Study data were audiotaped and transcribed verbatim. Independent and team analysis was iterative and interpretive. Primary care obstetrical groups were found to preserve a family physician's enjoyment of obstetrics and allowed for continuity of care. They afforded work-life balance, allowed for collaboration, and provided support and a social network for group members. Such groups were found to facilitate short-term family physician absences, although long-term absences (such as maternity leaves) were considered challenging. Participants described conflict within primary care obstetrical groups and considered sustainability to be a challenge. Family physicians' continued involvement in obstetrics could be facilitated by their participation in primary care obstetrical groups.

Experiences of Followers in the Development of the Leader-Follower Relationship in Long-Term Health Care: A Phenomenological Study

ERIC Educational Resources Information Center

Lucia, David

2010-01-01

This descriptive phenomenological study explored the perceptions and experiences of followers in the development of the leader-follower relationship, within a long-term health care environment. This study is also framed within the disciplinary context of human resource development (HRD). This study addressed the research question, "During your…

Perinatal Experiences of Women With Physical Disabilities and Their Recommendations for Clinicians

PubMed Central

Smeltzer, Suzanne C.; Mitra, Monika; Iezzoni, Lisa I.; Long-Bellil, Linda; Smith, Lauren D.

2016-01-01

Objective To explore the perinatal experiences of women with physical disabilities (WWPD) and their associated recommendations for maternity care clinicians to improve care. Design A mixed-method study was conducted using a semi-structured interview guide to identify the experiences of WWPD. This qualitative descriptive study is part of a larger study and was conducted to examine the perceptions of WWPD about their interactions with maternity care clinicians and their recommendations for maternity care clinicians to improve care. Participants Twenty-five women with physical disabilities who gave birth within the last 10 years and were 21–55 years of age were recruited and agreed to participate in the study. Methods Participants were asked about their interactions with clinicians during pregnancy and their recommendations for clinicians to improve perinatal care for women with physical disabilities. Transcribed interviews were analyzed using content analysis. Themes that emerged from analysis of the interviews were identified and coded. Kurasaski’s coding was used to establish the reliability of the coding. Results Three themes emerged from analysis of the interview data: clinicians’ lack of knowledge about pregnancy-related needs of WWPD; clinicians’ failure to consider knowledge, experience, and expertise of women about their own disabilities; and clinicians’ lack of awareness of reproductive concerns of WWPD. Women provided recommendations that warrant attention by clinicians who provide perinatal care for women who live with physical disabilities. Conclusion Participants experienced problematic interactions with clinicians related to pregnancy and identified recommendations for maternity care clinicians to address those problems with the goal of improving perinatal health care for WWPD. PMID:27619410

Doctors' engagements with patient experience surveys in primary and secondary care: a qualitative study.

PubMed

Farrington, Conor; Burt, Jenni; Boiko, Olga; Campbell, John; Roland, Martin

2017-06-01

Patient experience surveys are increasingly important in the measurement of, and attempts to improve, health-care quality. To date, little research has focused upon doctors' attitudes to surveys which give them personalized feedback. This paper explores doctors' perceptions of patient experience surveys in primary and secondary care settings in order to deepen understandings of how doctors view the plausibility of such surveys. We conducted a qualitative study with doctors in two regions of England, involving in-depth semi-structured interviews with doctors working in primary care (n = 21) and secondary care (n = 20) settings. The doctors in both settings had recently received individualized feedback from patient experience surveys. Doctors in both settings express strong personal commitments to incorporating patient feedback in quality improvement efforts. However, they also concurrently express strong negative views about the credibility of survey findings and patients' motivations and competence in providing feedback. Thus, individual doctors demonstrate contradictory views regarding the plausibility of patient surveys, leading to complex, varied and on balance negative engagements with patient feedback. Doctors' contradictory views towards patient experience surveys are likely to limit the impact of such surveys in quality improvement initiatives in primary and secondary care. We highlight the need for 'sensegiving' initiatives (i.e. attempts to influence perceptions by communicating particular ideas, narratives and visions) to engage with doctors regarding the plausibility of patient experience surveys. This study highlights the importance of engaging with doctors' views about patient experience surveys when developing quality improvement initiatives. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

Experiences of Turkish undergraduate nursing students in the intensive care unit.

PubMed

Tastan, Sevinc; Iyigun, Emine; Ayhan, Hatice; Hatipoglu, Sevgi

2015-01-01

Clinical practicum provides many opportunities for nursing students to learn more about their subject and develop essential nursing skills. In contrast, nursing students often have difficulties during their clinical practicum. This study aims to describe the clinical experiences of undergraduate nursing students in the intensive care unit. A descriptive qualitative approach was used in this study. The study was performed at a military medical academy between 1 March and 30 April 2008. The study was conducted with 15 fourth-year baccalaureate nursing students. Data were obtained through open-ended and in-depth audio-taped interviews, which lasted approximately 35-45 min. Themes emerged from the participants' descriptions of their experiences in the intensive care unit: anxiety, fear of doing harm, emotional connection and empathy, improving self-confidence, perceived responsibility for patients, prioritizing care of patients, preserving dignity, coping with confronting situations, and communication in the intensive care unit. The views and expectations of nursing students regarding intensive care practice are important for the organization of the nursing education environment. The nursing curriculum must be revised and developed according to the needs of students.

The weather-stains of care: interpreting the meaning of bad weather for front-line health care workers in rural long-term care.

PubMed

Joseph, Gillian M; Skinner, Mark W; Yantzi, Nicole M

2013-08-01

This paper addresses the gap in health services and policy research about the implications of everyday weather for health care work. Building on previous research on the weather-related challenges of caregiving in homes and communities, it examines the experiences of 'seasonal bad weather' for health care workers in long-term care institutions. It features a hermeneutic phenomenology analysis of six transcripts from interviews with nurses and personal support workers from a qualitative study of institutional long-term care work in rural Canada. Focussing on van Manen's existential themes of lived experience (body, relations, space, time), the analysis reveals important contradictions between the lived experiences of health care workers coping with bad weather and long-term care policies and practices that mitigate weather-related risk and vulnerability. The findings contribute to the growing concern for rural health issues particularly the neglected experiences of rural health providers and, in doing so, offer insight into the recent call for greater attention to the geographies of health care work. Copyright © 2012 Elsevier Ltd. All rights reserved.

Older depressed Latinos' experiences with primary care visits for personal, emotional and/or mental health problems: a qualitative analysis.

PubMed

Izquierdo, Adriana; Sarkisian, Catherine; Ryan, Gery; Wells, Kenneth B; Miranda, Jeanne

2014-01-01

To describe salient experiences with a primary care visit (eg, the context leading up to the visit, the experience and/or outcomes of that visit) for emotional, personal and/or mental health problems older Latinos with a history of depression and recent depressive symptoms and/or antidepressant medication use reported 10 years after enrollment into a randomized controlled trial of quality-improvement for depression in primary care. Secondary analysis of existing qualitative data from the second stage of the continuation study of Partners in Care (PIC). Latino ethnicity, aged > or =50 years, recent depressive symptoms and/or antidepressant medication use, and a recent primary care visit for mental health problems. Of 280 second-stage participants, 47 were eligible. Both stages of the continuation study included participants from the PIC parent study control and 2 intervention groups, and all had a history of depression. Data analyzed by a multidisciplinary team using grounded theory methodology. Five themes were identified: beliefs about the nature of depression; prior experiences with mental health disorders/treatments; sociocultural context (eg, social relationships, caregiving, the media); clinic-related features (eg, accessibility of providers, staff continuity, amount of visit time); and provider attributes (eg, interpersonal skills, holistic care approach). Findings emphasize the importance of key features for shaping the context leading up to primary care visits for help-seeking for mental health problems, and the experience and/or outcomes of those visits, among older depressed Latinos at long-term follow-up, and may help tailor chronic depression care for the clinical management of this vulnerable population.

Double deprivation: a phenomenological study into the experience of being a carer during a mental health crisis.

PubMed

Albert, Rikke; Simpson, Alan

2015-12-01

To explore carers' experience of caring during a mental health crisis. Community mental health care including crisis care relies increasingly on carers. The relationship between carers and professionals is at times fraught due to issues of what constitutes a crisis, confidentiality and a perception of lack of empathy. The caring experience can lead carers to feel isolated and neglected. A qualitative study with a phenomenological approach. Eight carers participated and were interviewed individually using a semi-structured approach. Analysis used the Interpretive Phenomenological Analysis method including transcribing of interviews, initial noting, searching for connections and patterns across the transcripts and cases. The themes were checked with the participants for their views on the emerging themes. The data were collected from November 2011-May 2012. Carers experienced 'double deprivation' by not receiving support from professionals and protecting their social network from the trauma of the crisis. The caring in crisis invoked complex feelings of guilt and loyalty which made discussing aggression difficult. Caring was described as a terrifying experience not just because of the aggression but also because of the perception of abandonment by professionals. The experience was an overwhelmingly negative one with a wish for acknowledgement of the crisis and support from mental health services. For most of the participants the caring during crisis was traumatic which left the carer feeling isolated and unsupported. The study should be used to help educate professionals on the complexities of caring during a crisis. © 2015 John Wiley & Sons Ltd.

Personal Characteristics and Experience of Primary Care Predicting Frequent Use of Emergency Department: A Prospective Cohort Study.

PubMed

Hudon, Catherine; Sanche, Steven; Haggerty, Jeannie L

2016-01-01

A small number of patients frequently using the emergency department (ED) account for a disproportionate amount of the total ED workload and are considered using this service inappropriately. The aim of this study was to identify prospectively personal characteristics and experience of organizational and relational dimensions of primary care that predict frequent use of ED. This study was conducted among parallel cohorts of the general population and primary care patients (N = 1,769). The measures were at baseline (T1), 12 (T2) and 24 months (T3): self-administered questionnaire on current health, health behaviours and primary care experience in the previous year. Use of medical services was confirmed using administrative databases. Mixed effect logistic regression modeling identified characteristics predicting frequent ED utilization. A higher likelihood of frequent ED utilization was predicted by lower socioeconomic status, higher disease burden, lower perceived organizational accessibility, higher number of reported healthcare coordination problems and not having a complete annual check-up, above and beyond adjustment for all independent variables. Personal characteristics such as low socioeconomic status and high disease burden as well as experience of organizational dimensions of primary care such as low accessibility, high healthcare coordination problems and low comprehensiveness of care are prospectively associated with frequent ED utilization. Interventions developed to prevent inappropriate ED visits, such as case management for example, should tailor low socioeconomic status and patients with high disease burden and should aim to improve experience of primary care regarding accessibility, coordination and comprehensiveness.

Maternal experiences of caring for an infant with neurological impairment after neonatal encephalopathy in Uganda: a qualitative study

PubMed Central

Nakamanya, Sarah; Siu, Godfrey E.; Lassman, Rachel; Seeley, Janet; Tann, Cally J.

2015-01-01

Abstract Purpose: The study investigated maternal experiences of caring for a child affected by neurological impairment after neonatal encephalopathy (NE) (“birth asphyxia”) in Uganda. Methods: Between September 2011 and October 2012 small group and one-on-one in-depths interviews were conducted with mothers recruited to the ABAaNA study examining outcomes from NE in Mulago hospital, Kampala. Data were analysed thematically with the aid of Nvivo 8 software. Findings: Mothers reported caring for an infant with impairment was often complicated by substantial social, emotional and financial difficulties and stigma. High levels of emotional distress, feelings of social isolation and fearfulness about the future were described. Maternal health-seeking ability was exacerbated by high transport costs, lack of paternal support and poor availability of rehabilitation and counselling services. Meeting and sharing experiences with similarly affected mothers was associated with more positive maternal caring experiences. Conclusion: Mothering a child with neurological impairment after NE is emotionally, physically and financially challenging but this may be partly mitigated by good social support and opportunities to share caring experiences with similarly affected mothers. A facilitated, participatory, community-based approach to rehabilitation training may have important impacts on maximising participation and improving the quality of life of affected mothers and infants.Implications for RehabilitationCaring for an infant with neurological impairment after NE in Uganda has substantial emotional, social and financial impacts on families and is associated with high levels of emotional stress, feelings of isolation and stigma amongst mothers.Improved social support and the opportunity to share experiences with other similarly affected mothers are associated with a more positive maternal caring experience. High transport costs, lack of paternal support and poor availability of counselling and support services were barriers to maternal healthcare seeking.Studies examining the feasibility, acceptability and impact of early intervention programmes are warranted to maximise participation and improve the quality of life for affected mothers and their infants. PMID:25323396

Young People's Satisfaction with Residential Care: Identifying Strengths and Weaknesses in Service Delivery

ERIC Educational Resources Information Center

Southwell, Jenni; Fraser, Elizabeth

2010-01-01

This paper presents findings from a landmark Australian study investigating the experiences and perspectives of young people in residential care. Data from a representative sample are analyzed to identify young people's satisfaction with various aspects of their residential care experience: their sense of safety, normality, support, comfort in…

Learning to Facilitate Advance Care Planning: The Novice Social Worker's Experience

ERIC Educational Resources Information Center

Washington, Karla; Bowland, Sharon; Mueggenburg, Kay; Pederson, Margaret; Otten, Sheila; Renn, Tanya

2014-01-01

Professional leaders have identified clear roles for social workers involved in advance care planning (ACP), a facilitated process whereby individuals identify their preferences for future medical care; yet information about effective teaching practices in this area is scant. This study reports on the experiences of 14 social workers who…

Strange and scary memories of the intensive care unit: a qualitative, longitudinal study inspired by Ricoeur's interpretation theory.

PubMed

Svenningsen, Helle; Egerod, Ingrid; Dreyer, Pia

2016-10-01

To describe the content of former intensive care unit patients' memories of delusions. Intensive care unit patients often have strange and frightening experiences during the critical stage of illness. Earlier studies have provided small-sample in-depth descriptions of patient experiences in intensive care unit, but large-scale studies are also needed to inform intensive care unit follow-up. The study had a qualitative design using phenomenological hermeneutic analysis inspired by Ricoeur's interpretive theory. Patients were assessed with Confusion Assessment Method of the Intensive Care Unit for delirium in intensive care unit, and after discharge, memories of delusions were described by 114 of 325 patients in face-to-face (after two weeks) and telephone interviews (after two and six months) using the Intensive Care Unit Memory Tool. Four themes emerged: the ever-present family, dynamic spaces, surviving challenges and constant motion. Memories of delusions were a vivid mix of fact and fiction, demonstrating dynamic shifts in time, place and motion, but not dependent on the presence of delirium assessed by Confusion Assessment Method of the Intensive Care Unit. Analysis based on Ricoeurian phenomenological hermeneutics provided insights into themes in intensive care unit patients' memories of delusions. More studies are needed to understand the meaning of memories of delusions, the commonality of themes and the association between delusions and delirium after an intensive care unit stay. Understanding patients' memories of delusions is beneficial to nurses caring for patients that are anxious, upset or agitated. It opens a window to the world of the patient who is unable to communicate due to intubation and general weakness. We recommend the provision of nurse-led intensive care unit follow-up enabling patients to describe and discuss their intensive care unit experiences. © 2016 John Wiley & Sons Ltd.

The patient experience in community mental health services for older people: a concept mapping approach to support the development of a new quality measure.

PubMed

Wilberforce, Mark; Batten, Eric; Challis, David; Davies, Linda; Kelly, Michael P; Roberts, Chris

2018-06-18

The patient experience is a crucial part of the measurement of service quality. However, instruments to evaluate experiential quality in the community mental health care of older adults are lacking. Before designing a new instrument, clarity is needed about what is to be measured, and how care experiences are articulated by patients. The study aimed to construct a framework to describe older patients' experience of community mental health and social care. Concept mapping blends structured qualitative data collection with quantitative analysis in a mixed method approach. Five activities were undertaken. Patients first identified sentences describing the care experience; a card-sort exercise then grouped these thematically; multidimensional analysis portrayed these data in a map of clusters; interpretation was by patient advisers; finally a new questionnaire was designed. The research involved 22 older people with mental health problems and 29 mental health practitioners, from one region of England. Sixty-seven statements were identified that described the care experience. Analysis of card sort data revealed seven clusters, which were interpreted by patient advisers to the study as: personal qualities and relationships; communication problems; feeling powerless; in-and-out care; bureaucracy; focus on life, not just mental health; and continuity of care. These themes and the component statements were used as a foundation for later work, developing a new measure of the care experience in mental health services for older people. Concept mapping has many strengths as an empirical and participant-driven means for underpinning new measurement instruments. A group of older people identified 67 candidate statements that could act as questionnaire items grouped within seven themes. Future research will establish the psychometric properties of the new measure.

An explorative study of experiences of healthcare providers posing as simulated care receivers in a 'care-ethical' lab.

PubMed

Vanlaere, Linus; Timmermann, Madeleine; Stevens, Marleen; Gastmans, Chris

2012-01-01

In recent approaches to ethics, the personal involvement of health care providers and their empathy are perceived as important elements of an overall ethical ability. Experiential working methods are used in ethics education to foster, inter alia, empathy. In 2008, the care-ethics lab 'sTimul' was founded in Flanders, Belgium, to provide training that focuses on improving care providers' ethical abilities through experiential working simulations. The curriculum of sTimul focuses on empathy sessions, aimed at care providers' empathic skills. The present study provides better insight into how experiential learning specifically targets the empathic abilities of care providers. Providing contrasting experiences that affect the care providers' self-reflection seems a crucial element in this study. Further research is needed to provide more insight into how empathy leads to long-term changes in behaviour.

Experiences of stigma, discrimination, care and support among people living with HIV: A four country study

PubMed Central

Neuman, Melissa; Obermeyer, Carla Makhlouf; Cherutich, Peter; Desclaux, Alice; Hardon, Anita; Ky-Zerbo, Odette; Namakhoma, Ireen; Wanyenze, Rhoda

2013-01-01

While it is widely agreed that HIV-related stigma may impede access to treatment and support, there is little evidence describing who is most likely to experience different forms of stigma and discrimination and how these affect disclosure and access to care. This study examined experiences of interpersonal discrimination, internalized stigma, and discrimination at health care facilities among HIV-positive adults aged 18 years and older utilizing health facilities in four countries in Sub-Saharan Africa (N=536). Prevalence of interpersonal discrimination across all countries was 34.6%, with women significantly more likely to experience interpersonal discrimination than men. Prevalences of internalized stigma varied across countries, ranging from 9.6% (Malawi) to 45.0% (Burkina Faso). Prevalence of health care discrimination was 10.4% across all countries. In multivariate analyses, we found positive, significant, and independent associations between disclosure and interpersonal discrimination and support group utilization, and positive associations between both internalized stigma and health care discrimination and referral for medications. PMID:23479002

The experience of sons caring for a parent with dementia.

PubMed

McDonnell, Eilis; Ryan, Assumpta A

2014-11-01

This study explored the experiences of sons caring for a parent with dementia. Individual, semi-structured interviews were conducted with a purposeful sample of sons (n = 13) in a rural part of Ireland. Interviews were audiotaped, transcribed verbatim and analysed for common themes. The key themes that emerged were 'the parental bond', 'a binding role', 'coordinating care and support' and a 'getting on with it' approach to care. The study highlighted the commitment of sons to their caregiving role and the strong sense of duty that motivated them to provide care. The findings suggested that while many aspects of the caregiving experience such as lack of information and support are gender neutral, there are differences in the caregiving experiences of men and women in how they view their relationship with their parent and in the management of their caregiving role that merit further investigation. © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

Outcome Evidence for Structured Pediatric to Adult Health Care Transition Interventions: A Systematic Review.

PubMed

Gabriel, Phabinly; McManus, Margaret; Rogers, Katherine; White, Patience

2017-09-01

To identify statistically significant positive outcomes in pediatric-to-adult transition studies using the triple aim framework of population health, consumer experience, and utilization and costs of care. Studies published between January 1995 and April 2016 were identified using the CINAHL, Ovid MEDLINE, PubMed, Scopus, and Web of Science databases. Included studies evaluated pre-evaluation and postevaluation data, intervention and comparison groups, and randomized clinic trials. The methodological strength of each study was assessed using the Effective Public Health Practice Project Quality Assessment Tool. Out of a total of 3844 articles, 43 met our inclusion criteria. Statistically significant positive outcomes were found in 28 studies, most often related to population health (20 studies), followed by consumer experience (8 studies), and service utilization (9 studies). Among studies with moderate to strong quality assessment ratings, the most common positive outcomes were adherence to care and utilization of ambulatory care in adult settings. Structured transition interventions often resulted in positive outcomes. Future evaluations should consider aligning with professional transition guidance; incorporating detailed intervention descriptions about transition planning, transfer, and integration into adult care; and measuring the triple aims of population health, experience, and costs of care. Copyright © 2017 Elsevier Inc. All rights reserved.

Patient Experience Shows Little Relationship with Hospital Quality Management Strategies

PubMed Central

Groene, Oliver; Arah, Onyebuchi A.; Klazinga, Niek S.; Wagner, Cordula; Bartels, Paul D.; Kristensen, Solvejg; Saillour, Florence; Thompson, Andrew; Thompson, Caroline A.; Pfaff, Holger; DerSarkissian, Maral; Sunol, Rosa

2015-01-01

Objectives Patient-reported experience measures are increasingly being used to routinely monitor the quality of care. With the increasing attention on such measures, hospital managers seek ways to systematically improve patient experience across hospital departments, in particular where outcomes are used for public reporting or reimbursement. However, it is currently unclear whether hospitals with more mature quality management systems or stronger focus on patient involvement and patient-centered care strategies perform better on patient-reported experience. We assessed the effect of such strategies on a range of patient-reported experience measures. Materials and Methods We employed a cross-sectional, multi-level study design randomly recruiting hospitals from the Czech Republic, France, Germany, Poland, Portugal, Spain, and Turkey between May 2011 and January 2012. Each hospital contributed patient level data for four conditions/pathways: acute myocardial infarction, stroke, hip fracture and deliveries. The outcome variables in this study were a set of patient-reported experience measures including a generic 6-item measure of patient experience (NORPEQ), a 3-item measure of patient-perceived discharge preparation (Health Care Transition Measure) and two single item measures of perceived involvement in care and hospital recommendation. Predictor variables included three hospital management strategies: maturity of the hospital quality management system, patient involvement in quality management functions and patient-centered care strategies. We used directed acyclic graphs to detail and guide the modeling of the complex relationships between predictor variables and outcome variables, and fitted multivariable linear mixed models with random intercept by hospital, and adjusted for fixed effects at the country level, hospital level and patient level. Results Overall, 74 hospitals and 276 hospital departments contributed data on 6,536 patients to this study (acute myocardial infarction n = 1,379, hip fracture n = 1,503, deliveries n = 2,088, stroke n = 1,566). Patients admitted for hip fracture and stroke had the lowest scores across the four patient-reported experience measures throughout. Patients admitted after acute myocardial infarction reported highest scores on patient experience and hospital recommendation; women after delivery reported highest scores for patient involvement and health care transition. We found no substantial associations between hospital-wide quality management strategies, patient involvement in quality management, or patient-centered care strategies with any of the patient-reported experience measures. Conclusion This is the largest study so far to assess the complex relationship between quality management strategies and patient experience with care. Our findings suggest absence of and wide variations in the institutionalization of strategies to engage patients in quality management, or implement strategies to improve patient-centeredness of care. Seemingly counterintuitive inverse associations could be capturing a scenario where hospitals with poorer quality management were beginning to improve their patient experience. The former suggests that patient-centered care is not yet sufficiently integrated in quality management, while the latter warrants a nuanced assessment of the motivation and impact of involving patients in the design and assessment of services. PMID:26151864

Patient Experience Shows Little Relationship with Hospital Quality Management Strategies.

PubMed

Groene, Oliver; Arah, Onyebuchi A; Klazinga, Niek S; Wagner, Cordula; Bartels, Paul D; Kristensen, Solvejg; Saillour, Florence; Thompson, Andrew; Thompson, Caroline A; Pfaff, Holger; DerSarkissian, Maral; Sunol, Rosa

2015-01-01

Patient-reported experience measures are increasingly being used to routinely monitor the quality of care. With the increasing attention on such measures, hospital managers seek ways to systematically improve patient experience across hospital departments, in particular where outcomes are used for public reporting or reimbursement. However, it is currently unclear whether hospitals with more mature quality management systems or stronger focus on patient involvement and patient-centered care strategies perform better on patient-reported experience. We assessed the effect of such strategies on a range of patient-reported experience measures. We employed a cross-sectional, multi-level study design randomly recruiting hospitals from the Czech Republic, France, Germany, Poland, Portugal, Spain, and Turkey between May 2011 and January 2012. Each hospital contributed patient level data for four conditions/pathways: acute myocardial infarction, stroke, hip fracture and deliveries. The outcome variables in this study were a set of patient-reported experience measures including a generic 6-item measure of patient experience (NORPEQ), a 3-item measure of patient-perceived discharge preparation (Health Care Transition Measure) and two single item measures of perceived involvement in care and hospital recommendation. Predictor variables included three hospital management strategies: maturity of the hospital quality management system, patient involvement in quality management functions and patient-centered care strategies. We used directed acyclic graphs to detail and guide the modeling of the complex relationships between predictor variables and outcome variables, and fitted multivariable linear mixed models with random intercept by hospital, and adjusted for fixed effects at the country level, hospital level and patient level. Overall, 74 hospitals and 276 hospital departments contributed data on 6,536 patients to this study (acute myocardial infarction n = 1,379, hip fracture n = 1,503, deliveries n = 2,088, stroke n = 1,566). Patients admitted for hip fracture and stroke had the lowest scores across the four patient-reported experience measures throughout. Patients admitted after acute myocardial infarction reported highest scores on patient experience and hospital recommendation; women after delivery reported highest scores for patient involvement and health care transition. We found no substantial associations between hospital-wide quality management strategies, patient involvement in quality management, or patient-centered care strategies with any of the patient-reported experience measures. This is the largest study so far to assess the complex relationship between quality management strategies and patient experience with care. Our findings suggest absence of and wide variations in the institutionalization of strategies to engage patients in quality management, or implement strategies to improve patient-centeredness of care. Seemingly counterintuitive inverse associations could be capturing a scenario where hospitals with poorer quality management were beginning to improve their patient experience. The former suggests that patient-centered care is not yet sufficiently integrated in quality management, while the latter warrants a nuanced assessment of the motivation and impact of involving patients in the design and assessment of services.

Experiences and perspectives of older people regarding advance care planning: A meta-synthesis of qualitative studies.

PubMed

Ke, Li-Shan; Huang, Xiaoyan; Hu, Wen-Yu; O'Connor, Margaret; Lee, Susan

2017-05-01

Studies have indicated that family members or health professionals may not know or predict their older relatives' or patients' health preferences. Although advance care planning is encouraged for older people to prepare end-of-life care, it is still challenging. To understand the experiences and perspectives of older people regarding advance care planning. A systematic review of qualitative studies and meta-synthesis was conducted. CINAHL, MEDLINE, EMBASE, and PsycINFO databases were searched. A total of 50 articles were critically appraised and a thematic synthesis was undertaken. Four themes were identified: life versus death, internal versus external, benefits versus burdens, and controlling versus being controlled. The view of life and death influenced older people's willingness to discuss their future. The characteristics, experiences, health status, family relationship, and available resources also affected their plans of advance care planning. Older people needed to balance the benefits and burdens of advance care planning, and then judge their own ability to make decisions about end-of-life care. Older people's perspectives and experiences of advance care planning were varied and often conflicted; cultural differences amplified variances among older people. Truthful information, available resources, and family support are needed to enable older people to maintain dignity at the end of life. The views of life and death for older people from different cultures should be compared to assist health professionals to understand older people's attitudes toward advance care planning, and thus to develop appropriate strategies to promote advance care planning in different cultures.

"You learn to go last": perceptions of prenatal care experiences among African-American women with limited incomes.

PubMed

Salm Ward, Trina C; Mazul, Mary; Ngui, Emmanuel M; Bridgewater, Farrin D; Harley, Amy E

2013-12-01

African American infants die at higher rates and are at greater risk of adverse birth outcomes than White infants in Milwaukee. Though self-reported experiences of racism have been linked to adverse health outcomes, limited research exists on the impact of racism on women's prenatal care experiences. The purpose of this study was to examine the experiences of racial discrimination during prenatal care from the perspectives of African American women in a low income Milwaukee neighborhood. Transcripts from six focus groups with twenty-nine women and two individual interviews were analyzed to identify important emergent themes. Validity was maintained using an audit trail, peer debriefing, and two individual member validation sessions. Participants identified three areas of perceived discrimination based on: (1) insurance or income status, (2) race, and (3) lifetime experiences of racial discrimination. Women described being treated differently by support staff and providers based on type of insurance (public versus private), including perceiving a lower quality of care at clinics that accepted public insurance. While some described personally-mediated racism, the majority of women described experiences that fit within a definition of institutionalized racism-in which the system was designed in a way that worked against their attempts to get quality prenatal care. Women also described lifetime experiences of racial discrimination. Our findings suggest that African American women with limited incomes perceive many provider practices and personal interactions during prenatal care as discriminatory. Future studies could explore the relationship between perceptions of discrimination and utilization of prenatal care.

Patient Reporting of Safety experiences in Organisational Care Transfers (PRoSOCT): a feasibility study of a patient reporting tool as a proactive approach to identifying latent conditions within healthcare systems

PubMed Central

Scott, Jason; Waring, Justin; Heavey, Emily; Dawson, Pamela

2014-01-01

Background It is increasingly recognised that patients can play a role in reporting safety incidents. Studies have tended to focus on patients within hospital settings, and on the reporting of patient safety incidents as defined within a medical model of safety. This study aims to determine the feasibility of collecting and using patient experiences of safety as a proactive approach to identifying latent conditions of safety as patients undergo organisational care transfers. Methods and analysis The study comprises three components: (1) patients’ experiences of safety relating to a care transfer, (2) patients’ receptiveness to reporting experiences of safety, (3) quality improvement using patient experiences of safety. (1) A safety survey and evaluation form will be distributed to patients discharged from 15 wards across four clinical areas (cardiac, care of older people, orthopaedics and stroke) over 1 year. Healthcare professionals involved in the care transfer will be provided with a regular summary of patient feedback. (2) Patients (n=36) who return an evaluation form will be sampled representatively based on the four clinical areas and interviewed about their experiences of healthcare and safety and completing the survey. (3) Healthcare professionals (n=75) will be invited to participate in semistructured interviews and focus groups to discuss their experiences with and perceptions of receiving and using patient feedback. Data analysis will explore the relationship between patient experiences of safety and other indicators and measures of quality and safety. Interview and focus group data will be thematically analysed and triangulated with all other data sources using a convergence coding matrix. Ethics and dissemination The study has been granted National Health Service (NHS) Research Ethics Committee approval. Patient experiences of safety will be disseminated to healthcare teams for the purpose of organisational development and quality improvement. Results will be disseminated to study participants as well as through peer-reviewed outputs. PMID:24833698

HIV patients' experiences with inpatient and outpatient care: results of a national survey.

PubMed

Wilson, Ira B; Ding, Lin; Hays, Ron D; Shapiro, Martin F; Bozzette, Samuel A; Cleary, Paul D

2002-12-01

Little is known about HIV patients' care experiences. To assess HIV patients' experiences with inpatient and outpatient care, and to assess the relationship and relative influence of patient characteristics and site of care on care experiences. Cohort study. Patients with HIV receiving care outside of emergency rooms, prisons, or the military throughout the continental United States. One thousand seventy-four patients provided ratings of an inpatient stay and 2204 rated an outpatient visit; 818 patients provided evaluations of both inpatient and outpatient care. A national probability sample of persons in care for HIV from the HIV Cost and Services Utilization Study. Outcome variables were rates of problems with, and global ratings of, inpatient and outpatient care. Mean problem rates were 20.9% and 8.4% (lower score means fewer problems) for inpatient and outpatient care, respectively. On 9 of 10 of the individual inpatient report items, 15% or more of respondents reported problems. Global ratings of inpatient and outpatient care were 65.3 and 75.0 (0-100 scale, higher scores indicate better ratings), respectively. In multivariable models that controlled for site effects, the only patient characteristic that was consistently associated with problem rates and global ratings of care was mental health (P <0.0001 for both inpatient and outpatient care). Models including site effects explained two to four times as much variance as models excluding site effects. Inpatients with HIV reported higher problem rates with inpatient than outpatient care. Better provider-patient communication during inpatient stays is needed. For both inpatient and outpatient care, quality improvement efforts may be most productively focused on providers and processes of care at sites rather than on specific patient subgroups.

Patient experiences of caring and person-centredness are associated with perceived nursing care quality.

PubMed

Edvardsson, David; Watt, Elizabeth; Pearce, Frances

2017-01-01

To explore the extent to which patient ratings of perceived caring and person-centredness are associated with perceived nursing care quality in an acute hospital sample of inpatients. Self-reported patient experiences have had limited attention in conceptualizations of healthcare quality as described in policy and national standards, as well as in health and nursing care practice. The impact of central nursing concepts such as caring and person-centredness on patient ratings of nursing care quality is largely unknown. A descriptive non-experimental correlational design was used to collect and analyse data from a sample of Australian acute hospital inpatients (n = 210) in December 2012. The study collected self-report patient data through a study survey including demographic data and the Caring Behaviours Inventory, the Person-centred Climate Questionnaire, the SF-36 and the Distress thermometer. Descriptive statistics together with Pearson correlation and hierarchical linear regression were used. Perceived caring behaviours of staff and the person-centredness of wards were significantly associated with nursing care quality as evidenced by Pearson correlations being significant and exceeding the pre-set cut-off of r > 0·5. Staff caring behaviours and ward person-centredness also accounted for more than half of the total variance in perceived nursing care quality as evidenced by the final regression model. Knowledgeable and communicable staff, timeliness of assistance and environmental support stood out as most significantly related to patient perceived nursing care quality. Patient experiences of caring and person-centredness seem to have an influential role in the extent to which patients experience the quality of nursing care. Knowledgeable and communicable staff, timeliness of assistance and environmental support stand out as most significantly related to patient-perceived nursing care quality. © 2016 John Wiley & Sons Ltd.

Arts-based palliative care training, education and staff development: A scoping review.

PubMed

Turton, Benjamin Mark; Williams, Sion; Burton, Christopher R; Williams, Lynne

2018-02-01

The experience of art offers an emerging field in healthcare staff development, much of which is appropriate to the practice of palliative care. The workings of aesthetic learning interventions such as interactive theatre in relation to palliative and end-of-life care staff development programmes are widely uncharted. To investigate the use of aesthetic learning interventions used in palliative and end-of-life care staff development programmes. Scoping review. Published literature from 1997 to 2015, MEDLINE, CINAHL and Applied Social Sciences Index and Abstracts, key journals and citation tracking. The review included 138 studies containing 60 types of art. Studies explored palliative care scenarios from a safe distance. Learning from art as experience involved the amalgamation of action, emotion and meaning. Art forms were used to transport healthcare professionals into an aesthetic learning experience that could be reflected in the lived experience of healthcare practice. The proposed learning included the development of practical and technical skills; empathy and compassion; awareness of self; awareness of others and the wider narrative of illness; and personal development. Aesthetic learning interventions might be helpful in the delivery of palliative care staff development programmes by offering another dimension to the learning experience. As researchers continue to find solutions to understanding the efficacy of such interventions, we argue that evaluating the contextual factors, including the interplay between the experience of the programme and its impact on the healthcare professional, will help identify how the programmes work and thus how they can contribute to improvements in palliative care.

The Lived Experiences of Nurses Caring For Dying Pediatric Patients.

PubMed

Curcio, Danna L

2017-01-01

Nurses and healthcare professionals may have difficulty adjusting to and comprehending their experiences when a patient’s life ends. This has the potential to interfere with patient care. Reflection on past events and actions enables critical discovery of strategies to benefit both nurses and patients. This qualitative phenomenological study explores the lived experiences of nurses caring for dying pediatric patients. The philosophical underpinning of Merleau-Ponty (2008), in combination with the research method of van Manen (1990), was used for this study. The Roy Adaptation Model (RAM) (Roy, 2009; Roy & Andrews, 1991) was the nursing model that guided the study to help understand that nurses are an adaptive system, using censoring as a compensatory adaptive process to help function for a purposeful cause. Nine female nurse participants with one to four years of experience were interviewed. The context of the experiences told by nurses caring for dying pediatric patents uncovered seven essential themes of empathy, feelings of ambivalence, inevitability, inspiration, relationship, self-preservation, and sorrow, and these themes demonstrated a connection formed between the nurse and the patient.

The experiences of families of critically ill patients in Greece: a social constructionist grounded theory study.

PubMed

Plakas, Sotirios; Cant, Bob; Taket, Ann

2009-02-01

The experiences of patients' families in intensive care units (ICUs) are of international concern. In Greece however, adequate attention has not been paid to this issue. To explore the experiences of critical care patients' families in Greece. The intensive care units of 3 general district hospitals in the area of Athens, Greece. The social constructionist version of grounded theory was used. In-depth interviews with 25 relatives of critically ill patients were carried out, and participant and non-participant observation was used to cross-validate the data obtained. Seven major categories were identified, with 32 components across all categories. The experiences of families revolved around the two core categories of "Intense Emotions" and "Vigilant Attendance". The study conceptualised two new categories in this field, "Religiosity" and "Loss of Intimacy" and enhanced the category "Vigilant Attendance". Three further categories were identified, namely "Caring", "Dignity" and "Information". The various interrelationships between the categories were also examined. The study has examined the experience of Greek patients' families from a qualitative perspective and suggests that major changes need to be made in terms of management and support.

Educational inequalities in patient-centred care: patients' preferences and experiences

PubMed Central

2012-01-01

Background Educational attainment is strongly related to specific health outcomes. The pathway in which individual patient-provider interactions contribute to (re)producing these inequalities has yet to be studied. In this article, the focus is on differences between less and more highly educated patients in their preferences for and experiences with patient-centred care., e.g. shared decision making, receiving understandable explanations and being able to ask questions. Methods Data are derived from several Consumer Quality-index (CQ-index) studies. The CQ-index is a family of standardized instruments which are used in the Netherlands to measure quality of care from the patient’s perspective. Results The educational level of patients is directly related to the degree of importance patients attribute to specific aspects of patient-centred care. It has a minor influence on the experienced level of shared decision making, but not on experiences regarding other aspects of patient-centred care. Conclusions All patients regard patient-centred care as important and report positive experiences. However, there is a discrepancy between patient preferences for patient-centred care on one hand and the care received on the other. Less educated patients might receive ‘too much’, and more highly educated patients ‘too little’ in the domains of communication, information and shared decision making. PMID:22900589

Patient Experience and Satisfaction with Inpatient Service: Development of Short Form Survey Instrument Measuring the Core Aspect of Inpatient Experience

PubMed Central

Wong, Eliza L. Y.; Coulter, Angela; Hewitson, Paul; Cheung, Annie W. L.; Yam, Carrie H. K.; Lui, Siu fai; Tam, Wilson W. S.; Yeoh, Eng-kiong

2015-01-01

Patient experience reflects quality of care from the patients’ perspective; therefore, patients’ experiences are important data in the evaluation of the quality of health services. The development of an abbreviated, reliable and valid instrument for measuring inpatients’ experience would reflect the key aspect of inpatient care from patients’ perspective as well as facilitate quality improvement by cultivating patient engagement and allow the trends in patient satisfaction and experience to be measured regularly. The study developed a short-form inpatient instrument and tested its ability to capture a core set of inpatients’ experiences. The Hong Kong Inpatient Experience Questionnaire (HKIEQ) was established in 2010; it is an adaptation of the General Inpatient Questionnaire of the Care Quality Commission created by the Picker Institute in United Kingdom. This study used a consensus conference and a cross-sectional validation survey to create and validate a short-form of the Hong Kong Inpatient Experience Questionnaire (SF-HKIEQ). The short-form, the SF-HKIEQ, consisted of 18 items derived from the HKIEQ. The 18 items mainly covered relational aspects of care under four dimensions of the patient’s journey: hospital staff, patient care and treatment, information on leaving the hospital, and overall impression. The SF-HKIEQ had a high degree of face validity, construct validity and internal reliability. The validated SF-HKIEQ reflects the relevant core aspects of inpatients’ experience in a hospital setting. It provides a quick reference tool for quality improvement purposes and a platform that allows both healthcare staff and patients to monitor the quality of hospital care over time. PMID:25860775

Elderly persons' experiences of striving to receive care on their own terms in nursing homes.

PubMed

Anderberg, Patrice; Berglund, Anna-Lena

2010-02-01

Elderly persons' participation in and decisions about their own care need more attention. The aim of this study was to gain a deeper understanding of elderly persons' experiences of care and help, and how their lives change in nursing homes. Fifteen elderly persons living in four nursing homes were interviewed about their experiences of needing care and help in their daily life. The interviews were analysed using van Manen's phenomenological approach. Elderly persons' experiences of care and help were described as: a balance between sorrow and relief, a struggle to maintain control and connectedness, managing to live in the present and yet worrying about the future, and an attempt to hide one's vulnerability in order to be accepted and create an inner calm in an exposed situation. In conclusion, important issues were raised concerning elderly persons' perspectives on care and help in daily life in nursing homes.

A threat to the understanding of oneself: Intensive care patients' experiences of dependency

PubMed Central

Lykkegaard, Kristina; Delmar, Charlotte

2013-01-01

This study examines the meaning of dependency on care as experienced by intensive care patients. Literature on the subject is sparse, but research from nonintensive settings shows that dependency is often experienced negatively. The study is based on in-depth qualitative semistructured interviews with three former patients characterized as narratives. The analysis is inspired by a phenomenological hermeneutical method. The study has found that dependency is experienced as difficult and that the experience seems to be attached to the relationship to oneself. Patients feel powerless and experience shame, their understanding of self is threatened, and they fight for independence in the course after intensive care. The findings might be influenced by the study being conducted in a Western country setting, where independence is valued. They can be used as means of reflection on nursing practice and matters such as communication and patient participation. PMID:23809023

A threat to the understanding of oneself: intensive care patients' experiences of dependency.

PubMed

Lykkegaard, Kristina; Delmar, Charlotte

2013-06-28

This study examines the meaning of dependency on care as experienced by intensive care patients. Literature on the subject is sparse, but research from nonintensive settings shows that dependency is often experienced negatively. The study is based on in-depth qualitative semistructured interviews with three former patients characterized as narratives. The analysis is inspired by a phenomenological hermeneutical method. The study has found that dependency is experienced as difficult and that the experience seems to be attached to the relationship to oneself. Patients feel powerless and experience shame, their understanding of self is threatened, and they fight for independence in the course after intensive care. The findings might be influenced by the study being conducted in a Western country setting, where independence is valued. They can be used as means of reflection on nursing practice and matters such as communication and patient participation.

South Africans' experiences of being old and of care and caring in a transitional period.

PubMed

Bohman, Doris M; van Wyk, Neltjie C; Ekman, Sirkka-Liisa

2011-09-01

This focused ethnographic study aimed to illuminate a group of South Africans' experiences of being old and of care and caring in a transitional period. With a growing number of older people in Africa, studies on the individual experiences may help to develop care which is more sensitively based on the needs for older people in a changing Southern Africa context. Data were collected through group and individual in-depth interviews and participant observations which involved 16 individuals, aged 52-76. Data were analysed using a qualitative content analysis. The study showed two interrelated themes reflections on life and ubuntu - an orientation towards others. Findings were discussed from the viewpoint of the theory of gerotranscendence, showing similarities as well as differences, possibly due to societal and cultural differences. Shortage of formal care for older people living in poor conditions in Southern Africa, gave rise to the discussion for the need of a contextualized development of gerontological care. To enhance knowledge on the theory of gerotranscendence and develop guidelines for nursing in home-based care/community-based care in a South African context may be a first step to support older people in their process towards gerotranscendence. © 2010 Blackwell Publishing Ltd.

Nurses' role transition from the clinical ward environment to the critical care environment.

PubMed

Gohery, Patricia; Meaney, Teresa

2013-12-01

To explore the experiences of nurses moving from the ward environment to the critical care environment. Critical care areas are employing nurses with no critical care experience due to staff shortage. There is a paucity of literature focusing on the experiences of nurses moving from the ward environment to the critical care environment. A Heideggerian phenomenology research approach was used in this study. In-depth semi structured interviews, supported with an interview guide, were conducted with nine critical care nurses. Data analysis was guided by Van Manen (1990) approach to phenomenological analysis. Four main themes emerged: The highs and lows, you need support, theory-practice gap, struggling with fear. The participants felt ill prepared and inexperienced to work within the stressful and technical environment of critical care due to insufficient education and support. The study findings indicated that a variety of feelings and emotions are experienced by ward nurses who move into the stressful and technical environment of critical care due to insufficient skills and knowledge. More education and support is required to improve this transition process. Copyright © 2013 Elsevier Ltd. All rights reserved.

User experience and care for older people transitioning from hospital to home: Patients' and carers' perspectives.

PubMed

Allen, Jacqueline; Hutchinson, Alison M; Brown, Rhonda; Livingston, Patricia M

2018-04-01

Transitioning from hospital to home is challenging for many older people living with chronic health conditions. Transitional care facilitates safe and timely transfer of patients between levels of care and across care settings and includes communication between practitioners, assessment and planning, preparation, medication reconciliation, follow-up care and self-management education. To date, there is limited understanding of how to actively involve care recipient service users in transitional care. This study was part of a larger research project. The objective of this article was to report the first study phase, in which we aimed to describe user experience pertaining to patients and carers. The study design was qualitative descriptive using interviews. Patients (n = 19) and carers (n = 7) participated in semi-structured interviews about their experience of transition from hospital to home in an urban Australian health-care setting. Interview data were analysed using thematic analysis. All participants reported that they needed to become independent in transition. Participants perceived a range of social processes supported their independence at home: supportive relationships with carers, caring relationships with health-care practitioners, seeking information, discussing and negotiating the transitional care plan and learning to self-care. Findings contribute to our understanding that quality transitional care should focus on patients' need to regain independence. Social processes supporting the capacities of patients and carers should be emphasized in future initiatives. Future transitional care interventions should emphasize strategies to enable negotiation for suitable supports and assist care recipients to overcome barriers identified in this study. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.

Do patient experiences on priority aspects of health care predict their global rating of quality of care? A study in five patient groups

PubMed Central

De Boer, Dolf; Delnoij, Diana; Rademakers, Jany

2010-01-01

Abstract Background  Patient‐given global ratings are frequently interpreted as summary measures of the patient perspective, with limited understanding of what these ratings summarize. Global ratings may be determined by patient experiences on priority aspects of care. Objectives  (i) identify patient priorities regarding elements of care for breast cancer, hip‐ or knee surgery, cataract surgery, rheumatoid arthritis and diabetes, (ii) establish whether experiences regarding priorities are associated with patient‐given global ratings, and (iii) determine whether patient experiences regarding priorities are better predictors of global ratings than experiences concerning less important aspects of care. Setting and participants  Data collected for the development of five consumer quality index surveys – disease‐specific questionnaires that capture patient experiences and priorities – were used. Results  Priorities varied: breast cancer patients for example, prioritized rapid access to care and diagnostics, while diabetics favoured dignity and appropriate frequency of tests. Experiences regarding priorities were inconsistently related to global ratings of care. Regression analyses indicated that demographics explain 2.4–8.4% of the variance in global rating. Introducing patient experiences regarding priorities increased the variance explained to 21.1–35.1%; models with less important aspects of care explained 11.8–23.2%. Conclusions  Some experiences regarding priorities are strongly related to the global rating while others are poorly related. Global ratings are marginally dependent on demographics, and experiences regarding priorities are somewhat better predictors of global rating than experiences regarding less important elements. As it remains to be fully determined what global ratings summarize, caution is warranted when using these ratings as summary measures. PMID:20550597

Stakeholder's experiences, expectations and decision making on reproductive care: An ethnographic study of three districts in northern Ghana

PubMed Central

Pavlova, Milena; Biesma, Regien; Groot, Wim

2017-01-01

Background In Ghana, priority-setting for reproductive health service interventions is known to be rudimentary with little wider stakeholder involvement. In recognizing the need for broad stakeholder engagement to advance reproductive care provision and utilization, it is necessary to jointly study the varied stakeholder views on reproductive care services. Methods We applied an ethnographic study approach where field data was collected between March-May 2015 in three rural districts of northern Ghana. Data was collected among women with recent births experiences (n = 90), health care providers (n = 16) and policy actors (n = 6). In-depth interviews and focus group discussions was applied to collect all data. Each stakeholder participant’s audio file was transcribed, and repeatedly read through to identify similar and divergent views in data. A coding scheme guided coding processes. All transcripts were then imported into QSR NVivo 11 for further analysis. Results Four themes emerged. Women participants accentuated that sex and sexuality values of men have changed over time, and drives gender roles, parity levels and decision making on reproductive care needs at community levels. Sexual stigma on reproductive care reduces the willingness of women to voice poor experiences related to their previous reproductive experiences. All stakeholders’ highlighted clinical treatments for post-abortion care are minimally covered under the fee exemption policy for antenatal and postnatal care. Policy processes on service delivery protocols still is top-down in Ghana. Conclusions Health teams working to improve sexual and reproductive health care must find suitable context strategies that effectively work to improve women reproductive care needs at their operational levels. Private sector participation and informal community support clutches are encouraged to advance the delivery of reproductive care services. PMID:29091916

Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.

PubMed

Norinder, Maria; Goliath, Ida; Alvariza, Anette

2017-06-01

Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care. Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description. Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals. Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

Stakeholder's experiences, expectations and decision making on reproductive care: An ethnographic study of three districts in northern Ghana.

PubMed

Ayanore, Martin Amogre; Pavlova, Milena; Biesma, Regien; Groot, Wim

2017-01-01

In Ghana, priority-setting for reproductive health service interventions is known to be rudimentary with little wider stakeholder involvement. In recognizing the need for broad stakeholder engagement to advance reproductive care provision and utilization, it is necessary to jointly study the varied stakeholder views on reproductive care services. We applied an ethnographic study approach where field data was collected between March-May 2015 in three rural districts of northern Ghana. Data was collected among women with recent births experiences (n = 90), health care providers (n = 16) and policy actors (n = 6). In-depth interviews and focus group discussions was applied to collect all data. Each stakeholder participant's audio file was transcribed, and repeatedly read through to identify similar and divergent views in data. A coding scheme guided coding processes. All transcripts were then imported into QSR NVivo 11 for further analysis. Four themes emerged. Women participants accentuated that sex and sexuality values of men have changed over time, and drives gender roles, parity levels and decision making on reproductive care needs at community levels. Sexual stigma on reproductive care reduces the willingness of women to voice poor experiences related to their previous reproductive experiences. All stakeholders' highlighted clinical treatments for post-abortion care are minimally covered under the fee exemption policy for antenatal and postnatal care. Policy processes on service delivery protocols still is top-down in Ghana. Health teams working to improve sexual and reproductive health care must find suitable context strategies that effectively work to improve women reproductive care needs at their operational levels. Private sector participation and informal community support clutches are encouraged to advance the delivery of reproductive care services.

Abused women's vulnerability in daily life and in contact with psychiatric care: In the light of a caring science perspective.

PubMed

Örmon, Karin; Hörberg, Ulrica

2017-08-01

The aim of the study is to deepen the understanding of abused women's vulnerability in relation to how the abuse and encounters with health care professionals affect life. A further aim is to highlight abused women's vulnerability with a caring science perspective. Experience of abuse has consequences for the mental health of women and girls. Abused women may experience health care as unsupportive, and as a result, often chose not to disclose their experiences of abuse. The results of two qualitative empirical studies were analysed along with a phenomenological meaning analysis in accordance with the methodological principles of Reflective Lifeworld Research. Living one's life with experiences of abuse implies vulnerability, which can prevent abused women from achieving good health. This vulnerability results from insecurity regarding identity, along with the sense that one could have been a different individual if it were not for the abuse and thereby have a more fair chance in life. Being cared for within general psychiatric care could further increase this vulnerability. The healthcare professional's ability to care for the women who have experienced abuse leads to either an encounter of trust or else further suffering for the women. A lifeworld-oriented caring science perspective as a foundation for care can contribute to care for abused women which reaches the existential dimensions of their vulnerability and vulnerable life situation. It is evident that healthcare professionals should deepen their understanding of how abused women live, within a general psychiatric context. This study enables a deeper understanding of abused women's vulnerability in relation to how the abuse and encounters with healthcare professionals affect life. © 2016 John Wiley & Sons Ltd.

Psychosocial Care Provided by Physicians and Nurses in Palliative Care: A Mixed Methods Study.

PubMed

Fan, Sheng-Yu; Lin, I-Mei; Hsieh, Jyh-Gang; Chang, Chih-Jung

2017-02-01

Psychosocial care is an important component of palliative care, which is also provided by physicians and nurses. The aim of this study was to explore the experiences of physicians and nurses in palliative care regarding the process of psychosocial care, the difficulties, and the support needs from "psychosocial care professionals." A two-phase mixed methods study was conducted. In the first phase, 16 physicians and nurses with palliative care experience were recruited. A semi-structured interview was used to collect data about their experience of providing psychosocial care, and these were analyzed using thematic analysis. In the second phase, 88 physicians and nurses completed an online survey that was developed from the qualitative results. Qualitative results revealed three themes: 1) the contents of psychosocial care included not only disease-related events but also emotional and family support, 2) providing psychosocial care was a dynamic process including assessment, interventions, and evaluation, and 3) there were difficulties from the participants themselves, patients and families, and the system. Participants also reflected on what they did and the influences of providing care on themselves. Quantitative results showed that the most common psychosocial care was discussion about the progress of the disease and future care plan; the difficulty was the long-term problems in families; and the psychosocial care professionals most needed were social workers and clinical/counseling psychologists. Understanding the process of psychosocial care and integrating it with specialized mental health care in a team could improve the quality of psychosocial care in palliative care. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

A descriptive study of the experiences of lesbian, gay and transgender parents accessing health services for their children.

PubMed

Chapman, Rose; Wardrop, Joan; Freeman, Phoenix; Zappia, Tess; Watkins, Rochelle; Shields, Linda

2012-04-01

To explore the experiences of lesbian, gay and transgender families accessing health care for their children. Although lesbian, gay and transgender families are becoming more common, little is known about their health-seeking experiences. These families may be fearful about disclosing their sexual orientation or gender identity to health professionals. As a result, lesbian, gay and transgender parents may not be receiving optimal care for their children. Descriptive qualitative study. Data were collected through semi-structured interviews with 11 lesbian, gay and transgender parents in Australia. Three themes were generated from the data: 'managing health care experiences', 'attitudes' and 'transforming bureaucracies'. Negative experiences included encountering homophobia or transphobia and being required to educate health professionals. Positive experiences occurred when both parents were acknowledged as having an equal say in their child's health care. Many health professionals lack the skill or knowledge to meet the needs of lesbian, gay and transgender families. Health services are required to ensure that all policies and procedures are inclusive of all family constellations and that staff receive relevant and up-to-date sensitivity training and create an environment that is respectful of all family groups. Adopting a philosophy of family centred care can enable health providers and health professionals to provide lesbian, gay and transgender families with inclusive non-discriminatory care. © 2012 Blackwell Publishing Ltd.

Intensity of interprofessional collaboration among intensive care nurses at a tertiary hospital.

PubMed

Serrano-Gemes, G; Rich-Ruiz, M

To measure the intensity of interprofessional collaboration (IPC) in nurses of an intensive care unit (ICU) at a tertiary hospital, to check differences between the dimensions of the Intensity of Interprofessional Collaboration Questionnaire, and to identify the influence of personal variables. A cross-sectional descriptive study was conducted with 63 intensive care nurses selected by simple random sampling. Explanatory variables: age, sex, years of experience in nursing, years of experience in critical care, workday type and work shift type; variable of outcome: IPC. The IPC was measured by: Intensity of Interprofessional Collaboration Questionnaire. Descriptive and bivariate statistical analysis (IPC and its dimensions with explanatory variables). 73.8% were women, with a mean age of 46.54 (±6.076) years. The average years experience in nursing and critical care was 23.03 (±6.24) and 14.25 (±8.532), respectively. 77% had a full time and 95.1% had a rotating shift. 62.3% obtained average IPC values. Statistically significant differences were found (P<.05) between IPC (overall score) and overall assessment with years of experience in critical care. This study shows average levels of IPC; the nurses with less experience in critical care obtained higher IPC and overall assessment scores. Copyright © 2016 Sociedad Española de Enfermería Intensiva y Unidades Coronarias (SEEIUC). Publicado por Elsevier España, S.L.U. All rights reserved.

Registered nurses' and older people's experiences of participation in nutritional care in nursing homes: a descriptive qualitative study.

PubMed

Sjögren Forss, Katarina; Nilsson, Jane; Borglin, Gunilla

2018-01-01

The evaluation and treatment of older people's nutritional care is generally viewed as a low priority by nurses. However, given that eating and drinking are fundamental human activities, the support and enhancement of an optimal nutritional status should be regarded as a vital part of nursing. Registered nurses must therefore be viewed as having an important role in assessing and evaluating the nutritional needs of older people as well as the ability to intervene in cases of malnutrition. This study aimed to illuminate the experience of participating in nutritional care from the perspectives of older people and registered nurses. A further aim is to illuminate the latter's experience of nutritional care per se. A qualitative, descriptive design was adopted. Data were collected through semi-structured interviews ( n  = 12) with eight registered nurses and four older persons (mean age 85.7 years) in a city in the southern part of Sweden. The subsequent analysis was conducted by content analysis. The analysis reflected three themes: 'participation in nutritional care equals information', 'nutritional care out of remit and competence' and 'nutritional care more than just choosing a flavour'. They were interpreted to illuminate the experience of participation in nutritional care from the perspective of older people and RNs, and the latter's experience of nutritional care in particular per se. Our findings indicate that a paternalistic attitude in care as well as asymmetry in the nurse-patient relationship are still common characteristics of modern clinical nursing practice for older people. Considering that participation should be central to nursing care, and despite the RN's awareness of the importance of involving the older persons in their nutritional care this was not reflected in reality. Strategies to involve older persons in their nutritional care in a nursing home context need to take into account that for this population participation might not always be experienced as an important part of nursing care.

The family experiences of in-hospital care questionnaire in severe traumatic brain injury (FECQ-TBI): a validation study.

PubMed

Anke, Audny; Manskow, Unn Sollid; Friborg, Oddgeir; Røe, Cecilie; Arntzen, Cathrine

2016-11-28

Family members are important for support and care of their close relative after severe traumas, and their experiences are vital health care quality indicators. The objective was to describe the development of the Family Experiences of in-hospital Care Questionnaire for family members of patients with severe Traumatic Brain Injury (FECQ-TBI), and to evaluate its psychometric properties and validity. The design of the study is a Norwegian multicentre study inviting 171 family members. The questionnaire developmental process included a literature review, use of an existing instrument (the parent experience of paediatric care questionnaire), focus group with close family members, as well as expert group judgments. Items asking for family care experiences related to acute wards and rehabilitation were included. Several items of the paediatric care questionnaire were removed or the wording of the items was changed to comply with the present purpose. Questions covering experiences with the inpatient rehabilitation period, the discharge phase, the family experiences with hospital facilities, the transfer between departments and the economic needs of the family were added. The developed questionnaire was mailed to the participants. Exploratory factor analyses were used to examine scale structure, in addition to screening for data quality, and analyses of internal consistency and validity. The questionnaire was returned by 122 (71%) of family members. Principal component analysis extracted six dimensions (eigenvalues > 1.0): acute organization and information (10 items), rehabilitation organization (13 items), rehabilitation information (6 items), discharge (4 items), hospital facilities-patients (4 items) and hospital facilities-family (2 items). Items related to the acute phase were comparable to items in the two dimensions of rehabilitation: organization and information. All six subscales had high Cronbach's alpha coefficients >0.80. The construct validity was confirmed. The FECQ-TBI assesses important aspects of in-hospital care in the acute and rehabilitation phases, as seen from a family perspective. The psychometric properties and the construct validity of the questionnaire were good, hence supporting the use of the FECQ-TBI to assess quality of care in rehabilitation departments.

Adoption and Usage of mHealth Technology on Quality and Experience of Care Provided by Frontline Workers: Observations From Rural India.

PubMed

Kaphle, Sangya; Chaturvedi, Sharad; Chaudhuri, Indrajit; Krishnan, Ram; Lesh, Neal

2015-05-28

mHealth apps are deployed with the aim of improving access, quality, and experience of health care. It is possible that any mHealth intervention can yield differential impacts for different types of users. Mediating and determining factors, including personal and socioeconomic factors, affect technology adoption, the way health workers leverage and use the technology, and subsequently the quality and experience of care they provide. To develop a framework to assess whether mHealth platforms affect the quality and experience of care provided by frontline workers, and whether these effects on quality and experience are different depending on the level of technology adoption and individual characteristics of the health worker. Literacy, education, age, and previous mobile experience are identified as individual factors that affect technology adoption and use, as well as factors that affect the quality and experience of care directly and via the technology. Formative research was conducted with 15 community health workers (CHWs) using CommCare, an mHealth app for maternal and newborn care, in Bihar, India. CHWs were first classified on the level of CommCare adoption using data from CommCareHQ and were then shadowed on home visits to evaluate their levels of technology proficiency, and the quality and experience of care provided. Regression techniques were employed to test the relationships. Out of all the CHWs, 2 of them refused to participate in the home visits, however, we did have information on their levels of technology adoption and background characteristics, which were included in the analysis as relevant. Level of technology adoption was important for both quality and experience of care. The quality score for high users of CommCare was higher by 33.4% (P=.04), on average, compared to low users of CommCare. Those who scored higher on CommCare proficiency also provided significantly higher quality and experience of care, where an additional point in CommCare proficiency score increased the quality score by around half a point (0.541, P=.07), and experience score by around a third of a point (0.308, P=.03). Age affected CommCare user type negatively, with an increase in age increasing the likelihood of belonging to a lower category of CommCare adoption (-0.105, P=.08). Other individual characteristics did not affect adoption or the predicted values estimating the relationship between adoption and quality and experience of care, although illiteracy was able to affect the relationship negatively. mHealth technology adoption by frontline workers can positively impact the quality and experience of care they provide. Individual characteristics, especially literacy and age, can be important elements affecting technology adoption and the way users leverage the technology for their work. Our formative study provides informed hypotheses and methods for further research.

Adoption and Usage of mHealth Technology on Quality and Experience of Care Provided by Frontline Workers: Observations From Rural India

PubMed Central

Chaturvedi, Sharad; Chaudhuri, Indrajit; Krishnan, Ram; Lesh, Neal

2015-01-01

Background mHealth apps are deployed with the aim of improving access, quality, and experience of health care. It is possible that any mHealth intervention can yield differential impacts for different types of users. Mediating and determining factors, including personal and socioeconomic factors, affect technology adoption, the way health workers leverage and use the technology, and subsequently the quality and experience of care they provide. Objective To develop a framework to assess whether mHealth platforms affect the quality and experience of care provided by frontline workers, and whether these effects on quality and experience are different depending on the level of technology adoption and individual characteristics of the health worker. Literacy, education, age, and previous mobile experience are identified as individual factors that affect technology adoption and use, as well as factors that affect the quality and experience of care directly and via the technology. Methods Formative research was conducted with 15 community health workers (CHWs) using CommCare, an mHealth app for maternal and newborn care, in Bihar, India. CHWs were first classified on the level of CommCare adoption using data from CommCareHQ and were then shadowed on home visits to evaluate their levels of technology proficiency, and the quality and experience of care provided. Regression techniques were employed to test the relationships. Out of all the CHWs, 2 of them refused to participate in the home visits, however, we did have information on their levels of technology adoption and background characteristics, which were included in the analysis as relevant. Results Level of technology adoption was important for both quality and experience of care. The quality score for high users of CommCare was higher by 33.4% (P=.04), on average, compared to low users of CommCare. Those who scored higher on CommCare proficiency also provided significantly higher quality and experience of care, where an additional point in CommCare proficiency score increased the quality score by around half a point (0.541, P=.07), and experience score by around a third of a point (0.308, P=.03). Age affected CommCare user type negatively, with an increase in age increasing the likelihood of belonging to a lower category of CommCare adoption (-0.105, P=.08). Other individual characteristics did not affect adoption or the predicted values estimating the relationship between adoption and quality and experience of care, although illiteracy was able to affect the relationship negatively. Conclusions mHealth technology adoption by frontline workers can positively impact the quality and experience of care they provide. Individual characteristics, especially literacy and age, can be important elements affecting technology adoption and the way users leverage the technology for their work. Our formative study provides informed hypotheses and methods for further research. PMID:26023001

General practitioners' views on leadership roles and challenges in primary health care: a qualitative study.

PubMed

Spehar, Ivan; Sjøvik, Hege; Karevold, Knut Ivar; Rosvold, Elin Olaug; Frich, Jan C

2017-03-01

To explore general practitioners' (GPs) views on leadership roles and leadership challenges in general practice and primary health care. We conducted focus groups (FGs) with 17 GPs. Norwegian primary health care. 17 GPs who attended a 5 d course on leadership in primary health care. Our study suggests that the GPs experience a need for more preparation and formal training for the leadership role, and that they experienced tensions between the clinical and leadership role. GPs recognized the need to take on leadership roles in primary care, but their lack of leadership training and credentials, and the way in which their practices were organized and financed were barriers towards their involvement. GPs experience tensions between the clinical and leadership role and note a lack of leadership training and awareness. There is a need for a more structured educational and career path for GPs, in which doctors are offered training and preparation in advance. KEY POINTS Little is known about doctors' experiences and views about leadership in general practice and primary health care. Our study suggests that: There is a lack of preparation and formal training for the leadership role. GPs experience tensions between the clinical and leadership role. GPs recognize leadership challenges at a system level and that doctors should take on leadership roles in primary health care.

General practitioners’ views on leadership roles and challenges in primary health care: a qualitative study

PubMed Central

Spehar, Ivan; Sjøvik, Hege; Karevold, Knut Ivar; Rosvold, Elin Olaug; Frich, Jan C.

2017-01-01

Objective To explore general practitioners’ (GPs) views on leadership roles and leadership challenges in general practice and primary health care. Design We conducted focus groups (FGs) with 17 GPs. Setting Norwegian primary health care. Subjects 17 GPs who attended a 5 d course on leadership in primary health care. Results Our study suggests that the GPs experience a need for more preparation and formal training for the leadership role, and that they experienced tensions between the clinical and leadership role. GPs recognized the need to take on leadership roles in primary care, but their lack of leadership training and credentials, and the way in which their practices were organized and financed were barriers towards their involvement. Conclusions GPs experience tensions between the clinical and leadership role and note a lack of leadership training and awareness. There is a need for a more structured educational and career path for GPs, in which doctors are offered training and preparation in advance. Key points Little is known about doctors’ experiences and views about leadership in general practice and primary health care. Our study suggests that: There is a lack of preparation and formal training for the leadership role. GPs experience tensions between the clinical and leadership role. GPs recognize leadership challenges at a system level and that doctors should take on leadership roles in primary health care. PMID:28277051

Direct Care Workers' Experiences of Grief and Needs for Support

ERIC Educational Resources Information Center

Gray, Jennifer A.; Kim, Jinsook

2017-01-01

Background: A paucity of information is available on direct care workers' (DCWs') experiences with loss when their clients (people with intellectual and developmental disabilities [I/DD]) die. This study explored DCWs' grief experiences, their coping methods and their needs for support. Methods: A thematic analysis approach was used to examine…

Focus groups to explore healthcare professionals' experiences of care coordination: towards a theoretical framework for the study of care coordination.

PubMed

Van Houdt, Sabine; Sermeus, Walter; Vanhaecht, Kris; De Lepeleire, Jan

2014-12-24

Strategies to improve care coordination between primary and hospital care do not always have the desired results. This is partly due to incomplete understanding of the key concepts of care coordination. An in-depth analysis of existing theoretical frameworks for the study of care coordination identified 14 interrelated key concepts. In another study, these 14 key concepts were further explored in patients' experiences. Additionally, "patient characteristics" was identified as a new key concept in patients' experiences and the previously identified key concept "quality of relationship" between healthcare professionals was extended to "quality of relationship" with the patient. Together, these 15 interrelated key concepts resulted in a new theoretical framework. The present study aimed at improving our understanding of the 15 previously identified key concepts and to explore potentially previous unidentified key concepts and the links between these by exploring how healthcare professionals experience care coordination. A qualitative design was used. Six focus groups were conducted including primary healthcare professionals involved in the care of patients who had breast cancer surgery at three hospitals in Belgium. Data were analyzed using constant comparative analysis. All 15 previously identified key concepts of care coordination were further explored in healthcare professionals' experiences. Links between these 15 concepts were identified, including 9 newly identified links. The concept "external factors" was linked with all 6 concepts relating to (inter)organizational mechanisms; "task characteristics", "structure", "knowledge and information technology", "administrative operational processes", "cultural factors" and "need for coordination". Five of these concepts related to 3 concepts of relational coordination; "roles", "quality of relationship" and "exchange of information". The concept of "task characteristics" was only linked with "roles" and "exchange of information". The concept "patient characteristics" related with the concepts "need for coordination" and "patient outcome". Outcome was influenced by "roles", "quality of relationship" and "exchange of information". External factors and the (inter)organizational mechanism should enhance "roles" and "quality of relationship" between healthcare professionals and with the patient as well as "exchange of information", and setting and sharing of common "goals" to improve care coordination and quality of care.

Experiences of Australian men diagnosed with advanced prostate cancer: a qualitative study

PubMed Central

Chambers, Suzanne K; Hyde, Melissa K; Laurie, Kirstyn; Legg, Melissa; Frydenberg, Mark; Davis, Ian D; Lowe, Anthony; Dunn, Jeff

2018-01-01

Objective To explore men’s lived experience of advanced prostate cancer (PCa) and preferences for support. Design Cross-sectional qualitative study applying open-ended surveys and interviews conducted between June and November 2016. Interviews audio-recorded and transcribed verbatim and analysed from an interpretive phenomenological perspective. Setting Australia, nation-wide. Participants 39 men diagnosed with advanced PCa (metastatic or castration-resistant biochemical progression) were surveyed with 28 men subsequently completing a semistructured in depth telephone interview. Results Thematic analysis of interviews identified two organising themes: lived experience and supportive care. Lived experience included six superordinate themes: regret about late diagnosis and treatment decisions, being discounted in the health system, fear/uncertainty about the future, acceptance of their situation, masculinity and treatment effects. Supportive care included five superordinate themes: communication, care coordination, accessible care, shared experience/peer support and involvement of their partner/family. Conclusions Life course and the health and social context of PCa influence men’s experiences of advanced disease. Multimodal interventions integrating peer support and specialist nurses are needed that more closely articulate with men’s expressed needs. PMID:29455168

Intentions to Quit Work among Care Staff Working in the Aged Care Sector

ERIC Educational Resources Information Center

Karantzas, Gery C.; Mellor, David; McCabe, Marita P.; Davison, Tanya E.; Beaton, Paul; Mrkic, Dejan

2012-01-01

Purpose of the Study: The aged care industry experiences high rates of staff turnover. Staff turnover has significant implications for the quality of care provided to care recipients and the financial costs to care agencies. In this study, we applied a model of intention to quit to identify the contextual and personal factors that shape aged care…

Case studies and role play: learning strategies in nursing.

PubMed

Cogo, Ana Luísa Petersen; Pai, Daiane Dal; Aliti, Graziella Badin; Hoefel, Heloísa Karnas; Azzolin, Karina de Oliveira; Busin, Lurdes; Unicovsky, Margarita Ana Rubin; Kruse, Maria Henriqueta Luce

2016-01-01

to report professors' experience in a public university of Southern region of Brazil using case studies and role play as learning strategies for nursing care of hospitalized adults. learning experience report from the Nursing Care of Adults I class of nursing undergraduate course. the development of case studies and role play considered health care needs from epidemiological profile of chronic noncommunicable diseases morbidity and mortality, nursing as an assisting method, and social aspects of hospitalized individuals. Role play planning was made by creating a stage in laboratory of practices and dialogues comprising students and professors interaction. case studies and role play encouraged students to active search for learning and brought theory closer to real health care situations.

Caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD.

PubMed

Ericson-Lidman, Eva; Larsson, Lise-Lotte Franklin; Norberg, Astrid

2014-06-01

Caring for people with dementia and working in dementia care is described as having both rewarding and unpleasant aspects and has been studied to a minor extent. This study aims to explore care providers' narrated experiences of caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD. Nine care providers were interviewed about their experiences, the interviews were recorded, transcribed and analysed using thematic analysis. The analysis revealed that participants were struggling to perform person-centred care, which meant trying to see the person behind the disease, dealing with troublesome situations in the daily care, a two-edged interaction with relatives, feelings of shortcomings and troubled conscience, and the need for improvements in dementia care. The analysis also revealed an ambiguous work situation, which meant a challenging value base, the differently judged work environment, feelings of job satisfaction and the need for a functional leadership and management. The results illuminate participants' positive as well as negative experiences and have identified areas requiring improvements. It seems of great importance to strive for a supportive and attendant leadership, a leadership which aims to empower care providers in their difficult work. Using conscience as a driving force together in the work group may benefit care providers' health. © 2013 Nordic College of Caring Science.

Listening to the voices of older patients: an existential-phenomenological approach to quality assurance.

PubMed

Koch, T; Webb, C; Williams, A M

1995-05-01

The motivation behind this study was a desire to gain access to the experiences of elderly people receiving nursing care in hospital. Previous experience with quantitative approaches to quality assurance had led to dissatisfaction with their neglect of the patient perspective or reliance on patient satisfaction questionnaires. An existential-phenomenological approach was used in an attempt to reconstruct patients' experiences as reported in their own words. Themes which emerged from the data and are reported here focus on 'routine geriatric care', 'care deprivation', 'depersonalization', and 'geriatric segregation'. The findings are discussed against the background of literature about nursing care of elderly people. It is suggested that in the setting studied, limitations posed by past management deficiencies, under-staffing and poor physical environment contributed to the situation reported. Trained nurses felt they worked hard to give the best care they could but, with a high ratio of untrained staff and lack of continuing education, they were aware that their levels of achievement were far from ideal. The study demonstrates that, with an appropriate methodology, it is possible to gain access to how patients' experience their care and in this sense the attempt to 'listen to the voices of patients' was successful and gives pointers to developing more patient-sensitive quality-assurance processes.

Weight stigma in maternity care: women’s experiences and care providers’ attitudes

PubMed Central

2013-01-01

Background Weight stigma is pervasive in Western society and in healthcare settings, and has a negative impact on victims’ psychological and physical health. In the context of an increasing focus on the management of overweight and obese women during and after pregnancy in research and clinical practice, the current studies aimed to examine the presence of weight stigma in maternity care. Addressing previous limitations in the weight stigma literature, this paper quantitatively explores the presence of weight stigma from both patient and care provider perspectives. Methods Study One investigated associations between pre-pregnancy body mass index (BMI) and experiences of maternity care from a state-wide, self-reported survey of 627 Australian women who gave birth in 2009. Study Two involved administration of an online survey to 248 Australian pre-service medical and maternity care providers, to investigate their perceptions of, and attitudes towards, providing care for pregnant patients of differing body sizes. Both studies used linear regression analyses. Results Women with a higher BMI were more likely to report negative experiences of care during pregnancy and after birth, compared to lower weight women. Pre-service maternity care providers perceived overweight and obese women as having poorer self-management behaviours, and reported less positive attitudes towards caring for overweight or obese pregnant women, than normal-weight pregnant women. Even care providers who reported few weight stigmatising attitudes responded less positively to overweight and obese pregnant women. Conclusions Overall, these results provide preliminary evidence that weight stigma is present in maternity care settings in Australia. They suggest a need for further research into the nature and consequences of weight stigma in maternity care, and for the inclusion of strategies to recognise and combat weight stigma in maternity care professionals’ training. PMID:23339533

First-line managers' experiences of alternative modes of funding in elderly care in Sweden.

PubMed

Antonsson, Helen; Korjonen, Susanne Eriksson; Rosengren, Kristina

2012-09-01

The aim of this study was to describe first-line managers' experiences of alternative modes of funding elderly care in two communities in western Sweden. A growing elderly population demands alternative modes of funding elderly care for better outcomes for patients and better efficiency as it is publicly funded through taxation. The study comprised a total of eight semi-structured interviews with first-line managers working within elderly care. The interviews were analysed using manifest qualitative content analysis. Respect for the individuals was a main concern in the study. One category, quality improvement, and four subcategories freedom of choice, organisational structure, quality awareness and market forces effects were identified to describe first-line managers' experiences of the operation of elderly care. Quality improvement was an important factor to deal with when elderly care was operated in different organisational perspectives, either private or public. The first-line manager is a key person for developing a learning organisation that encourages both staff, clients and their relatives to improve the organisation. Moreover, person-centred care strengthens the client's role in the organisation, which is in line with the government's goal for the quality improvement of elderly care. However, further research is needed on how quality improvement could be developed when different caregivers operate in the same market in order to improve care from the elderly perspective. This study highlights alternative modes of funding elderly care. The economical perspectives should not dominate without taking care of quality improvement when the operation of elderly care is planned and implemented. Strategies such as a learning organisational structure built on person-centred care could create quality improvement in elderly care. © 2012 Blackwell Publishing Ltd.

Weight stigma in maternity care: women's experiences and care providers' attitudes.

PubMed

Mulherin, Kate; Miller, Yvette D; Barlow, Fiona Kate; Diedrichs, Phillippa C; Thompson, Rachel

2013-01-22

Weight stigma is pervasive in Western society and in healthcare settings, and has a negative impact on victims' psychological and physical health. In the context of an increasing focus on the management of overweight and obese women during and after pregnancy in research and clinical practice, the current studies aimed to examine the presence of weight stigma in maternity care. Addressing previous limitations in the weight stigma literature, this paper quantitatively explores the presence of weight stigma from both patient and care provider perspectives. Study One investigated associations between pre-pregnancy body mass index (BMI) and experiences of maternity care from a state-wide, self-reported survey of 627 Australian women who gave birth in 2009. Study Two involved administration of an online survey to 248 Australian pre-service medical and maternity care providers, to investigate their perceptions of, and attitudes towards, providing care for pregnant patients of differing body sizes. Both studies used linear regression analyses. Women with a higher BMI were more likely to report negative experiences of care during pregnancy and after birth, compared to lower weight women. Pre-service maternity care providers perceived overweight and obese women as having poorer self-management behaviours, and reported less positive attitudes towards caring for overweight or obese pregnant women, than normal-weight pregnant women. Even care providers who reported few weight stigmatising attitudes responded less positively to overweight and obese pregnant women. Overall, these results provide preliminary evidence that weight stigma is present in maternity care settings in Australia. They suggest a need for further research into the nature and consequences of weight stigma in maternity care, and for the inclusion of strategies to recognise and combat weight stigma in maternity care professionals' training.

Undocumented immigration status and diabetes care among Mexican immigrants in two immigration "sanctuary" areas.

PubMed

Iten, A Elizabeth; Jacobs, Elizabeth A; Lahiff, Maureen; Fernández, Alicia

2014-04-01

The objective of this study is to investigate the relationship between immigration status and the patient experience of health care, diabetes self-management, and clinical outcomes among Mexican immigrants with diabetes receiving health care in two immigration sanctuary cities. We used data from the Immigration, Culture and Health Care study, a cross-sectional survey and medical record study of low-income patients with diabetes recruited from public hospitals and community clinics in the San Francisco Bay Area and Chicago. Undocumented Mexican, documented Mexican immigrants, and US-born Mexican-Americans' health care experiences, diabetes self-management, and clinical outcomes were compared using multivariate linear and logistic regressions. We found no significant differences in reports of physician communication, or in measures of diabetes management between undocumented and documented immigrants. All three groups had similar clinical outcomes in glycemic, systolic blood pressure, and lipid control. These results indicate that, at least in some settings, undocumented Mexican immigrants with diabetes can achieve similar clinical outcomes and report similar health care experiences as documented immigrants and US-born Mexican-Americans.

Reducing bottlenecks: professionals’ and adolescents’ experiences with transitional care delivery

PubMed Central

2014-01-01

Background The purpose of this study was to describe the interventions implemented in a quality improvement programme to improve transitional care and evaluate its effectiveness in reducing bottlenecks as perceived by professionals and improving chronically ill adolescents’ experiences with care delivery. Methods This longitudinal study was undertaken with adolescents and professionals who participated in the Dutch ‘On Your Own Feet Ahead!’ quality improvement programme. This programme followed the Breakthrough Series improvement and implementation strategy. A total of 102/128 (79.7%) professionals from 21 hospital teams filled out a questionnaire at the start of the programme (T0), and 79/123 (64.2%; five respondents had changed jobs) professionals completed the same questionnaire 1 year later (T1). Seventy-two (58.5%) professionals from 21 teams returned questionnaires at both time points. Of 389 and 430 participating adolescents, 36% and 41% returned questionnaires at T0 and T1, respectively. We used descriptive statistics and two-tailed, paired t-tests to investigate improvements in bottlenecks in transitional care (perceived by professionals) and care delivery (perceived by adolescents). Results Professionals observed improvement in all bottlenecks at T1 (vs. T0; p < 0.05), especially in the organisation of care, such as the presence of a joint mission between paediatric and adult care, coordination of care, and availability of more resources for joint care services. Within a 1-year period, the transition programme improved some aspects of patients’ experiences with care delivery, such as the provision of opportunities for adolescents to visit the clinic alone (p < 0.001) and to decide who should be present during consultations (p < 0.05). Conclusions This study demonstrated that transitional care interventions may improve the organisation and coordination of transitional care and better prepare adolescents for the transition to adult care within a 1-year period. By setting specific goals based on experiences with bottlenecks, the breakthrough approach helped to improve transitional care delivery for adolescents with chronic conditions. PMID:24485282

Prevalence and associated factors of domestic violence among pregnant women attending routine antenatal care in Nepal.

PubMed

Rishal, Poonam; Pun, Kunta Devi; Darj, Elisabeth; Joshi, Sunil Kumar; Bjørngaard, Johan Håkon; Swahnberg, Katarina; Schei, Berit; Lukasse, Mirjam

2017-08-01

The primary aim of this study was to assess the prevalence of domestic violence (DV) and its associated factors among pregnant women in Nepal. The secondary aims were to investigate disclosure of DV by women to health-care personnel and to assess whether health-care personnel had asked women about their experience of DV. This cross-sectional study included 2004 pregnant women between 12 and 28 weeks of gestation attending routine antenatal care at two hospitals in Nepal from August 2014 to November 2015. In this study, DV was defined as fear of a family member and/or an experience of physical, emotional or sexual violence. Associated risk factors were analysed using logistic regression analyses. Twenty-one per cent of the women had experienced DV; 12.5% experienced fear only, 3.6% violence only and 4.9% experienced both violence and fear. Less than 2% per cent reported physical violence during pregnancy. This study found that just 17.7% had ever been asked by health-care personnel about DV, and of the women who had reported DV, only 9.5% had disclosed their experience to health-care personnel. Women of young age and low socio-economic status were more likely to have experienced DV. Women who reported having their own income and the autonomy to use it were at significantly lower risk of DV compared to women with no income. A substantial proportion of women reported having experienced DV. Victims had rarely disclosed their experience of DV to health-care personnel. This study underlines the importance of integrating systematic assessment of DV in antenatal care.

Assessing the quality of bereavement care after perinatal death: development and piloting of a questionnaire to assess parents' experiences.

PubMed

Aiyelaagbe, Esther; Scott, Rebecca E; Holmes, Victoria; Lane, Emma; Heazell, Alexander E P

2017-10-01

Understanding parents' experience of care is essential to develop high-quality perinatal bereavement services. This study aimed at developing a questionnaire to identify parents' needs and record their experience of care. The patient experience questionnaire was developed by professionals and parents, and piloted in a tertiary maternity unit. Responses were received from 58 parents. Sensitivity and kindness of staff and time spent with their baby were ranked as 'very important' by 95% of parents. Care in these areas largely met their needs (90%), although 5% of respondents stated that partners could have been more involved. Between 8% and 15% of respondents did not feel that language used at the diagnosis of fetal death was sensitive, clear and unambiguous. Parents did not always receive written information about their care (5%) or post-mortem (13%). Analysis of bereaved parents' responses identified areas for improvement including greater involvement of partners and a need for timely information. Impact statement What is already known on this subject?: Good quality bereavement care after perinatal death reduces the negative emotional, psychological and social effects for parents. Description of parents' experiences is a potential means to improve the quality of perinatal bereavement care. What do the results of this study add?: Parents' needs and experiences of care after perinatal death were recorded using a patient-experience questionnaire designed by a multi-professional team and parents. Staff behaviour, particularly sensitivity and kindness was highly valued by parents. Giving both verbal and written information could be improved. Training is needed for professionals, particularly those who come into contact with bereaved parents less frequently. What are the implications of these findings for clinical practice and/or further research?: Description of parents' priorities and views can be used to identify areas for improvement in perinatal bereavement care. Parents' views should be regularly sought and used to develop local services in an iterative process.

Critical care nurses' experiences of caring for a dying child: A qualitative evidence synthesis.

PubMed

Grimston, Mitchell; Butler, Ashleigh E; Copnell, Beverley

2018-05-05

To synthesise qualitative research examining the experience of critical care nurses caring for a dying child. Caring for a dying child remains one of the most difficult aspects of nursing, potentially leading to personal and professional distress. A thorough understanding of this experience for critical care nurses allows for improved delivery of care and support for the nurse. A qualitative evidence synthesis was undertaken, informed by Thomas and Harden's thematic synthesis methodology. Studies were retrieved from CINAHL Plus, Scopus, OVID Medline and Embase, alongside hand-searching reference lists in February 2016. Two reviewers independently assessed each study using a multi-step screening process and performed critical appraisal of each included study. Data were extracted onto a pre-developed tool and analysed using thematic analysis. There is a blurred line between the role of the nurse as a person or a professional while caring for the child and family throughout hospitalisation and during and after the death. Each stage of care involves tasks and emotions that highlight the changing dominance of the nurse as either a person or professional. Personal, interpersonal and contextual factors affect delivery of care and impact of the death of the child on the critical care nurse. Reviewing individual and institutional practices could improve provision of care, inter-professional collaboration and support provided to staff involved. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Do Nursing Home Chain Size and Proprietary Status Affect Experiences With Care?

PubMed

You, Kai; Li, Yue; Intrator, Orna; Stevenson, David; Hirth, Richard; Grabowski, David; Banaszak-Holl, Jane

2016-03-01

In 2012, over half of nursing homes were operated by corporate chains. Facilities owned by the largest for-profit chains were reported to have lower quality of care. However, it is unknown how nursing home chain ownerships are related with experiences of care. To study the relationship between nursing home chain characteristics (chain size and profit status) with patients' family member reported ratings on experiences with care. Maryland nursing home care experience reports, the Online Survey, Certification, And Reporting (OSCAR) files, and Area Resource Files are used. Our sample consists of all nongovernmental nursing homes in Maryland from 2007 to 2010. Consumer ratings were reported for: overall care; recommendation of the facility; staff performance; care provided; food and meals; physical environment; and autonomy and personal rights. We identified chain characteristics from OSCAR, and estimated multivariate random effect linear models to test the effects of chain ownership on care experience ratings. Independent nonprofit nursing homes have the highest overall rating score of 8.9, followed by 8.6 for facilities in small nonprofit chains, and 8.5 for independent for-profit facilities. Facilities in small, medium, and large for-profit chains have even lower overall ratings of 8.2, 7.9, and 8.0, respectively. We find similar patterns of differences in terms of recommendation rate, and important areas such as staff communication and quality of care. Evidence suggests that Maryland nursing homes affiliated with large-for-profit and medium-for-profit chains had lower ratings of family reported experience with care.

A Scoping Review of Immigrant Experience of Health Care Access Barriers in Canada.

PubMed

Kalich, Angela; Heinemann, Lyn; Ghahari, Setareh

2016-06-01

Canadian population-based surveys report comparable access to health care services between immigrant and non-immigrant populations, yet other research reports immigrant-specific access barriers. A scoping review was conducted to explore research regarding Canadian immigrants' unique experiences in accessing health care, and was guided by the research question: "What is currently known about the barriers that adult immigrants face when accessing Canadian health care services?" The findings of this study suggest that there are unmet health care access needs specific to immigrants to Canada. In reviewing research of immigrants' health care experiences, the most common access barriers were found to be language barriers, barriers to information, and cultural differences. These findings, in addition to low cultural competency reported by interviewed health care workers in the reviewed articles, indicate inequities in access to Canadian health care services for immigrant populations. Suggestions for future research and programming are discussed.

Flemish palliative care nurses' attitudes toward euthanasia: a quantitative study.

PubMed

Gielen, Joris; van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert

2009-10-01

To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety. An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded. A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies. Flemish palliative care nurses' attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a 'palliative filter' a standard procedure in the case of a euthanasia request.

The experience of Chinese immigrant women in caring for a terminally ill family member in Australia.

PubMed

Heidenreich, Mary T; Koo, Fung Kuen; White, Kate

2014-01-01

The Chinese community, a heterogeneous, highly visible non-English speaking ethnic group in Australia, remains mostly hidden and underrepresented in palliative care service delivery along with participation in health research despite being the fastest growing such group in the country. There is a lack of Australian research information concerning the impact of migration on the caregiving experience of women carers within the Chinese cultural framework and the Australian palliative care context. This paper aims to explore the influence of Chinese cultural norms and immigration on the experience of immigrant women of Chinese ancestry caring for a terminally ill family member at home in Sydney. This study also seeks to identify factors that may present access barriers to palliative care support services. A qualitative approach was used in this study. Data were collected from semi-structured interviews with five home-based Chinese women carers and were analysed using thematic analysis. Findings identified that the participants found being a carer is a lonely and isolating experience. Sources of isolation and loneliness included social isolation experienced as a solitary carer without meaningful family and social relationships; loss of familiar cultural understandings and family values; and emotional isolators expressed in response to the physical and emotional role commitment and other constraints. The study results suggest the need for palliative care educational programmes designed to help nurses to understand the impact of cultural background within the palliative care context. Results also indicate that health care professionals should provide culturally appropriate and competent palliative care services, sensitive to the diverse socio-cultural influences and individual needs of Chinese migrants.

Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia.

PubMed

Crawford, K; Digby, R; Bloomer, M; Tan, H; Williams, A

2015-01-01

Transitioning from the primary caregiver to the visitor in a long-term care facility may be challenging for the caregiver; they are required to surrender their caring duties to the medical and nursing staff. The aim of this study was to explore the experiences of caregivers during their transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility. This study utilised a qualitative descriptive design. Twenty caregivers of people with dementia were recruited from the one Aged Rehabilitation and Geriatric Evaluation and Management facility, located in Victoria, Australia. Semi-structured interviews were used to explore the caregiver's experiences. Interviews were analysed using thematic analysis. The interview data revealed that the participants were undergoing similar experiences. The findings revealed that it was difficult for the caregiver to transition to their new role of visitor; negative reactions of grief, loss of motivation and loneliness were also coupled with positive feelings of relief and the reassurance that their relative or friend would be well cared for and safe within the long-term care facility. The findings offer insight into the experiences felt by caregivers when their relative or friend with dementia is admitted to hospital. Implications of this study include the need to improve the transition process for the caregiver by allowing them to be involved in the decision-making process, keeping them informed of care decisions, and importantly, providing emotional support to help the caregiver positively adapt to this transition.

Working and Providing Care: Increasing Student Engagement for Part-Time Community College Students

ERIC Educational Resources Information Center

Leingang, Daniel James

2017-01-01

The purpose of this study was to examine the relationship among external time obligations of work and care giving by part-time students, their participation within structured group learning experiences, and student engagement. The Structured Group Learning Experiences (SGLEs) explored within this study include community college programming…

Cultural Diversity and the Experiences of Alaska Native Nursing Students

ERIC Educational Resources Information Center

Gilmon, Margaret E.

2012-01-01

The purpose of this ethnonursing research study was to discover, describe, and systematically analyze the care expressions, practices, and patterns of Alaska Native nurses within the context of their nursing school experience. The goals of this study were to identify generic and professional care factors that promote the academic success of Alaska…

Police referrals to a psychiatric hospital: experiences of nurses caring for police-referred admissions.

PubMed

Maharaj, Reshin; O'Brien, Louise; Gillies, Donna; Andrew, Sharon

2013-08-01

Police are a major source of referral to psychiatric hospitals in industrialized countries with mental health legislation. However, little attention has been paid to nurses' experience of caring for police-referred patients to psychiatric hospitals. This study utilized a Heideggerian phenomenological framework to explore the experiences of nine nurses caring for patients referred by the police, through semistructured interviews. Two major themes emerged from the hermeneutic analyses of interviews conducted with nurse participants: (i) 'expecting "the worst" '; and (ii) 'balancing therapeutic care and forced treatment'. Expecting 'the worst' related to the perceptions nurse participants had about patients referred by the police. This included two sub-themes: (i) 'we are here to care for whoever they bring in'; and (ii) 'but who deserves care?' The second theme balancing therapeutic care and forced treatment included the sub-themes: (i) 'taking control, taking care'; and (ii) 'managing power'. The study raises ethical and skill challenges for nursing including struggling with the notion of who deserves care, and balancing the imperatives of legislation with the need to work within a therapeutic framework. © 2012 The Authors; International Journal of Mental Health Nursing © 2012 Australian College of Mental Health Nurses Inc.

Exploring the relationships between patient characteristics and their dialysis care experience.

PubMed

van der Veer, Sabine N; Arah, Onyebuchi A; Visserman, Ella; Bart, Hans A J; de Keizer, Nicolette F; Abu-Hanna, Ameen; Heuveling, Lara M; Stronks, Karien; Jager, Kitty J

2012-11-01

Previous studies have shown that it is possible for patient experience to be influenced by factors that are not attributable to health-care. Therefore, if patient experience is to be used as an accurate indicator of clinical performance, then it is important to understand its determinants. We used data from 840 dialysis patients who completed a validated patient experience survey. We created a potential theoretical framework based on available clinical knowledge to hypothesize the relationships between 13 demographic, socio-economic and health status factors and three outcome measures: global rating of the dialysis centre and the patient experience with the nephrologist's and nurses' care. The theoretical framework guided the selection of confounding variables for each determinant, which were then entered as terms in multivariable linear regression models. Patients who were of older age, of non-European decent, and who had a lower educational level, lower albumin level, with better self-rated health and who were without co-morbidities reported higher global ratings with the dialysis centre than their counterparts. Past myocardial infarction and better self-rated health were found to be determinants of a more positive experience while in the nephrologist's care. A more positive experience with nurses' care was associated with factors including older age, Dutch origin background, lower educational level, lower albumin levels and better self-rated health. Several characteristics of dialysis patients influence the way they rate and experience their care. When using the patient experience and ratings as indicators of clinical performance, they should be adjusted for such factors as identified in our study. This will facilitate a meaningful comparison of dialysis centres, and enable informed decision making by patients, insurers and policy makers.

Understanding the Essence of Caring from the Lived Experiences of Filipino Informatics Nurses.

PubMed

Macabasag, Romeo Luis A; Diño, Michael Joseph S

2018-04-01

Caring is considered a unique concept in nursing because it subsumes all intrinsic attributes of nursing as a human helping discipline. Scholars have argued that caring is usually seen as an encounter between nurses and patients, but how about nurses with minimal or absent nurse-patient encounters, like informatics nurses? In this study, we explored the meaning of the phenomenon of caring to present lived experiences of caring, namely caring as actions of coming in between; caring as expressed within embodied relations; and caring and the path traversed by informatics nurses. The informatics nurse-cyborg-patient triad speaks of Filipino informatics nurses' insightful understanding of the phenomenon of caring.

Exploring Nurse Communication About Spirituality.

PubMed

Wittenberg, Elaine; Ragan, Sandra L; Ferrell, Betty

2017-07-01

Although spiritual care is considered one of the pillars of palliative care, many health-care providers never receive formal training on how to communicate about spirituality with patients and families. The aim of this study was to explore the spiritual care experiences of oncology nurses in order to learn more about patient needs and nurse responses. A survey was circulated at a communication training course for oncology nurses in June 2015. Nurses recalled a care experience that included the initiation of a spiritual care topic and their response to the patient/family. Data were analyzed using thematic analysis. Nurses reported that communication about spirituality was primarily initiated by patients, rather than family members, and spiritual topics commonly emerged during the end of life or when patients experienced spiritual distress. Nurses' experiences highlighted the positive impact spiritual conversations had on the quality of patient care and its benefit to families. Spiritual communication was described as an important nursing role at the end of patients' lives, and nonverbal communication, listening, and discussing patients' emotions were emphasized as important and effective nurse communication skills during spiritual care conversations. Approximately one-third of nurses in the sample reported sharing their own personal spiritual or religious backgrounds with patients, and they reported that these sharing experiences strengthened their own faith. It is evident that patients want to discuss spiritual topics during care. Study findings illustrate the need to develop a spiritual communication curriculum and provide spiritual care communication training to clinicians.

A systematic review of evidence on the links between patient experience and clinical safety and effectiveness

PubMed Central

Doyle, Cathal; Lennox, Laura; Bell, Derek

2013-01-01

Objective To explore evidence on the links between patient experience and clinical safety and effectiveness outcomes. Design Systematic review. Setting A wide range of settings within primary and secondary care including hospitals and primary care centres. Participants A wide range of demographic groups and age groups. Primary and secondary outcome measures A broad range of patient safety and clinical effectiveness outcomes including mortality, physical symptoms, length of stay and adherence to treatment. Results This study, summarising evidence from 55 studies, indicates consistent positive associations between patient experience, patient safety and clinical effectiveness for a wide range of disease areas, settings, outcome measures and study designs. It demonstrates positive associations between patient experience and self-rated and objectively measured health outcomes; adherence to recommended clinical practice and medication; preventive care (such as health-promoting behaviour, use of screening services and immunisation); and resource use (such as hospitalisation, length of stay and primary-care visits). There is some evidence of positive associations between patient experience and measures of the technical quality of care and adverse events. Overall, it was more common to find positive associations between patient experience and patient safety and clinical effectiveness than no associations. Conclusions The data presented display that patient experience is positively associated with clinical effectiveness and patient safety, and support the case for the inclusion of patient experience as one of the central pillars of quality in healthcare. It supports the argument that the three dimensions of quality should be looked at as a group and not in isolation. Clinicians should resist sidelining patient experience as too subjective or mood-oriented, divorced from the ‘real’ clinical work of measuring safety and effectiveness. PMID:23293244

Examining the Relationship Between Perceived Quality of Care and Actual Quality of Care as Measured by 30-Day Readmission Rates.

PubMed

Salinas, Stanley R

To test the relationship between patient experience, as measured by the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS), and actual quality of care, as measured by 30-day readmission rates. Both HCAHPS data and outcome data reported to the Centers of Medicare & Medicaid Services (CMS). This secondary, nationwide (N = 4060), hospital-level study focused only on acute care hospitals. HCAHPS question 22 "Would you recommend this hospital to your friends and family?" was used to determine level of overall satisfaction, and 30-day readmission rates, as reported to the CMS, was used as a proxy for actual quality of care. A statistically significant relationship was found between patient experience and actual quality outcomes. The results of this study reinforce the inclusion of patient experience in Medicare's Value Based Purchasing program as a matter of good public policy.

Supervising Mentors' Lived Experience on Supervision in Teaching, Nursing and Social Care Education. A Participation-Oriented Phenomenological Study

ERIC Educational Resources Information Center

Lofmark, Anna; Morberg, Asa; Ohlund, Lennart S.; Ilicki, Julian

2009-01-01

Research concerning the supervisor role in separate educational programmes has been undertaken, but cross-professional studies are few. The aim of this study was to explore the lived experience of supervising mentors in Sweden during the practice-based, off-campus sections of the education in teaching, nursing, and social care. The study used a…

Rural patients' experiences of the open disclosure of adverse events.

PubMed

Piper, Donella; Iedema, Rick; Bower, Kate

2014-08-01

To analyse rural patients' and their families' experiences of open disclosure and offer recommendations to improve disclosure in rural areas. Retrospective qualitative study based on a subset of 13 semistructured, in-depth interviews with rural patients from a larger dataset. The larger data set form a nationwide, multisite, retrospective-qualitative study that included 100 semistructured, in-depth interviews with 119 patients and family members who were involved in high-severity health care incidents and incident disclosure. The larger study is known as the '100 Patient Stories' study. Interviews were transcribed verbatim and analysed by one analyst (D.P.) for recurrent experiences and concerns. Acute care. A sub-set of 13 of the 100 participants from the '100 Patient Stories' study who identified as experiencing an adverse incident in a rural or regional area. Patients' and family members' perceptions and experiences of health care incident disclosure, as expressed in interviews. Rural patients and clinicians experience additional challenges to metropolitan patients and clinicians in their experiences of health care incidents. These additional barriers include: a lack of resources at small hospitals; delays in diagnosis and transfer; distance between services; and a lack of communication between providers. These challenges impact not only upon how patients and their families experience incidents, but also how open disclosure is implemented. This analysis of 13 of the 100 Patient Stories interviews provides guidance to rural health services on how to conduct open disclosure. © 2014 National Rural Health Alliance Inc.

Retention in HIV care depends on patients' perceptions of the clinic experience.

PubMed

Wessinger, Matthew H; Hennink, Monique M; Kaiser, Bonnie N; Mangal, Jed P; Gokhale, Runa H; Ruchin, Lauren; Moanna, Abeer; Rimland, David; Farber, Eugene W; Marconi, Vincent C

2017-10-01

Institutional barriers in HIV primary care settings can contribute substantially to disparities in retention in HIV treatment and HIV-related outcomes. This qualitative study compared the perceptions of clinic experiences of persons living with HIV (PLWH) in a Veterans Affairs HIV primary care clinic setting who were retained in care with the experiences of those who were not retained in care. Qualitative data from 25 in-depth interviews were analyzed to identify facilitators and barriers to retention in HIV care. Results showed that participants not retained in care experienced barriers to retention involving dissatisfaction with clinic wait times, low confidence in clinicians, and customer service concerns. For participants retained in care, patience with procedural issues, confidence in clinicians, and interpersonal connections were factors that enhanced retention despite the fact that these participants recognized the same barriers as those who were not retained in care. These findings can inform interventions aimed at improving retention in HIV care.

Women with a BMI ≥ 30kg/m² and their experience of maternity care: A meta ethnographic synthesis.

PubMed

Jones, Catriona; Jomeen, Julie

2017-10-01

this paper is a report of a systematic review and meta-ethnography of the experiences of women with body mass index (BMI) ≥ 30kg/m² and their experience of maternity care. systematic review methods identified 12 qualitative studies about women's experiences of maternity care when their BMI ≥ 30kg/m². Findings from the identified studies were synthesised into themes, using metaethnography. SYNTHESIS AND FINDINGS: the meta-ethnography produced four key concepts; Initial encounters, Negotiating risk, Missing out and The positive intervention, which represent the experiences of maternity care for women with BMI ≥ 30kg/m² KEY CONCLUSION: many women with BMI ≥ 30kg/m² appear to be dissatisfied with the approaches taken to discuss weight status during maternity encounters. When weight is not addressed during these encounters women appear to be equally dissatisfied. The absence of open and honest discussions about weight, the feeling of being denied of a normal experience, and an over emphasis on the risks imposed upon pregnancy and childbirth by obesity, leave women feeling dissatisfied and disenfranchised. Sensitive care and practical advice about diet and exercise can help women move towards feeling more in control of their weight management. Crown Copyright © 2017. Published by Elsevier Ltd. All rights reserved.

The experience of providing end-of-life care to a relative with advanced dementia: an integrative literature review.

PubMed

Peacock, Shelley C

2013-04-01

The number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.

Effects of interdisciplinary teamwork on patient-reported experience of cancer care.

PubMed

Tremblay, Dominique; Roberge, Danièle; Touati, Nassera; Maunsell, Elizabeth; Berbiche, Djamal

2017-03-20

Interdisciplinary teamwork (ITW) is deemed necessary for quality cancer care practices. Nevertheless, variation in ITW intensity among cancer teams is understudied, and quantitative evidence of the effect of different ITW intensities among cancer teams on patients' perceived experience of care is limited. This study aims to compare patient-reported experience measures (PREMs) of cancer outpatients followed by teams characterized by high vs. low ITW intensity. The study is designed as an ex post facto quasi-experimental study. Participants (n = 1379) were recruited in nine outpatient oncology clinics characterized by different ITW intensities. ITW intensities were evaluated using the characteristics of structure (team composition and size) and process (interactions among team members), as per West's seminal work on team effectiveness. ITW intensity was dichotomized (high vs. low ITW intensity). PREMs were classified and measured using validated scales corresponding to six dimensions: Prompt access to care, Person-centred response, Quality of patient-professional communication, Quality of the care environment, Continuity of care, and Results of care. Dichotomous variables were created for each dimension (positive vs. less positive experience). Multiple logistic regression analyses were performed to assess the association between ITW intensities and the six PREMs dimensions, while controlling for patient and organizational characteristics. PROC GENMOD was used to fit logistic models for categorical variables. Outpatients treated by teams characterized by high ITW intensity reported almost four times more positive perceptions of Prompt access to care compared to patients treated by low ITW intensity teams (OR = 3.99; CI = 1.89-8.41). High ITW intensity also positively affected patients' perceptions of Quality of patient-professional communication (OR = 2.37; CI = 1.25-4.51), Person-centred response (OR = 2.11; CI = 1.05-4.24], and Continuity of care (OR = 2.18; CI = 1.07-4.45). No significant association was found between ITW intensity and perceived Results of care (OR = 1.31; CI = 0.68-2.52) or Quality of the care environment (OR = 0.66; CI = 0.31-1.39). This study provides empirical evidence, from the patient's perspective, that ITW intensity affects some critical aspects of patient-reported quality of care. Future research will allow explaining how and why ITW structure and processes may contribute to positive cancer care experiences.

Current Trends in Infant Care: An Indian Experience.

ERIC Educational Resources Information Center

Sharma, Neerja

1990-01-01

Discusses two studies of infant care in India. The first focused on fathers' infant caregiving practices, whereas the second focused on infant care practices in Punjabi families in which the grandmother lived with young parents. Discusses positive trends in infant care in India that were revealed by the studies. (BG)

Maternity health care: The experiences of Sub-Saharan African women in Sub-Saharan Africa and Australia.

PubMed

Mohale, Hlengiwe; Sweet, Linda; Graham, Kristen

2017-08-01

Increasing global migration is resulting in a culturally diverse population in the receiving countries. In Australia, it is estimated that at least four thousand Sub-Saharan African women give birth each year. To respond appropriately to the needs of these women, it is important to understand their experiences of maternity care. The study aimed to examine the maternity experiences of Sub-Saharan African women who had given birth in both Sub-Saharan Africa and in Australia. Using a qualitative approach, 14 semi-structured interviews with Sub-Saharan African women now living in Australia were conducted. Data was analysed using Braun and Clark's approach to thematic analysis. Four themes were identified; access to services including health education; birth environment and support; pain management; and perceptions of care. The participants experienced issues with access to maternity care whether they were located in Sub-Saharan Africa or Australia. The study draws on an existing conceptual framework on access to care to discuss the findings on how these women experienced maternity care. The study provides an understanding of Sub-Saharan African women's experiences of maternity care across countries. The findings indicate that these women have maternity health needs shaped by their sociocultural norms and beliefs related to pregnancy and childbirth. It is therefore arguable that enhancing maternity care can be achieved by improving women's health literacy through health education, having an affordable health care system, providing respectful and high quality midwifery care, using effective communication, and showing cultural sensitivity including family support for labouring women. Copyright © 2016 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.

The meaning and experience of bereavement support: A qualitative interview study of bereaved family caregivers.

PubMed

Kirby, Emma; Kenny, Katherine; Broom, Alex; MacArtney, John; Good, Phillip

2017-06-21

Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some-though not all-caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support. This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3-9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed. The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the "personal" character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support. Systematic pre-bereavement planning and careful communication about the services offered by palliative care bereavement support centers may improve receipt of support among bereaved family caregivers in need.

Attitudes, experiences, and beliefs affecting end-of-life decision-making among homeless individuals.

PubMed

Tarzian, Anita J; Neal, Maggie T; O'Neil, J Anne

2005-02-01

Individuals who are homeless may encounter various barriers to obtaining quality end-of-life (EOL) care, including access barriers, multiple sources of discrimination, and lack of knowledge among health care providers (HCPs) of their preferences and decision-making practices. Planning for death with individuals who have spent so much energy surviving requires an understanding of their experiences and preferences. This study sought to increase HCPs' awareness and understanding of homeless or similarly marginalized individuals' EOL experiences and treatment preferences. Focus groups were conducted with homeless individuals using a semi-structured interview guide to elicit participants' EOL experiences, decision-making practices, and personal treatment preferences. Five focus groups were conducted with 20 inner-city homeless individuals (4 per group) at a free urban health care clinic for homeless individuals in the United States. Sixteen of the 20 participants were African American; 4 were Caucasian. None were actively psychotic. All had experienced multiple losses and drug addiction. Five main themes emerged: valuing an individual's wishes; acknowledging emotions; the primacy of religious beliefs and spiritual experience; seeking relationship-centered care; and reframing advance care planning. The narrative process of this qualitative study uncovered an approach to EOL decision-making in which participants' reasoning was influenced by emotions, religious beliefs, and spiritual experience. Relationship-centered care, characterized by compassion and respectful, two-way communication, was obvious by its described absence--reasons for this are discussed. Recommendations for reframing advance care planning include ways for HCPs to transform advance care planning from that of a legal document to a process of goal-setting that is grounded in human connection, respect, and understanding.

Family members' involvement in psychiatric care: experiences of the healthcare professionals' approach and feeling of alienation.

PubMed

Ewertzon, M; Lützén, K; Svensson, E; Andershed, B

2010-06-01

The involvement of family members in psychiatric care is important for the recovery of persons with psychotic disorders and subsequently reduces the burden on the family. Earlier qualitative studies suggest that the participation of family members can be limited by how they experience the professionals' approach, which suggests a connection to the concept of alienation. Thus, the aim of this study was in a national sample investigate family members' experiences of the psychiatric health care professionals' approach. Data were collected by the Family Involvement and Alienation Questionnaire. The median level and quartiles were used to describe the distributions and data were analysed with non-parametric statistical methods. Seventy family members of persons receiving psychiatric care participated in the study. The results indicate that a majority of the participants respond that they have experiencing a negative approach from the professionals, indicating lack of confirmation and cooperation. The results also indicate that a majority of the participants felt powerlessness and social isolation in the care being provided, indicating feelings of alienation. A significant but weak association was found between the family members' experiences of the professionals' approach and their feelings of alienation.

The Experience of Paid Family-Care Workers of People with Dementia in South Korea.

PubMed

Kim, Jungmin; De Bellis, Anita Marie; Xiao, Lily Dongxia

2018-03-01

The South Korean government introduced the universal long-term care insurance program in 2008 that created a new employment category of "paid family-care worker" to assist the elderly with chronic illnesses including dementia. The aim of this study was to understand the lived experience of paid family-care workers of people with dementia in South Korea. The study was a qualitative research design underpinned by interpretive description principles involving eight paid family-care workers. The participants were recruited by attaching the advertisement flyer in a notice board of an educational facility for paid family-care workers. Paid family-care workers struggled to manage the behavioral and psychological symptoms of their care recipients. Their workloads created physical, emotional, social, and financial burdens. However, the care-giving activities were encouraged through their sense of responsibility, filial piety, and personal religious beliefs. Financial subsidies from the government and help received from others were also identified as encouragements. The education course provided to them assisted them to improve their dementia-care capabilities. Understanding paid family-care workers' lived experience in dementia care in South Korea assists with the identification of their educational needs and level of support they require to improve dementia care in the home care environment. A number of suggestions are made to increase paid family-care workers' knowledge, clinical skills, and job satisfaction to reduce their burdens and work-related incidents, such as challenging behaviors from those being cared for. Copyright © 2018. Published by Elsevier B.V.

Working with local nurses to promote hospital-nursing care during humanitarian assignments overseas: experiences from the perspectives of nurses.

PubMed

Tjoflåt, Ingrid; Karlsen, Bjørg; Saetre Hansen, Britt

2016-06-01

To describe how Norwegian expatriate nurses engaged in humanitarian assignments overseas experience working with the local nurses promoting nursing care in the hospital ward. Western countries have a long tradition of providing nurses with expert knowledge in nursing care for humanitarian projects and international work overseas. Studies from humanitarian mission revealed that health workers rarely acknowledge or use the local knowledge. However, there is a lack of studies highlighting expatriate nurses' experiences working with local nurses to promote nursing care in the hospital ward. This study applies a descriptive explorative qualitative design. The data were collected in 2013 by means of seven semi-structured interviews and analysed using qualitative content analysis. The data analyses revealed three themes related to the expatriate nurses' experiences of working with the local nurses to promote nursing care in the hospital ward: (1) Breaking the code, (2) Colliding worlds and (3) Challenges in sharing knowledge. The findings reflect different challenges when working with the local nurses. Findings indicate valuable knowledge gained about local nursing care and the local health and educational system. They also demonstrate challenges for the expatriate nurses related to the local nursing standard in the wards and using the local nurses' experiences and knowledge when working together. The findings can inform nurses, humanitarian organisations and institutions working overseas regarding the recruitment and the preparation of nurses who want to work cross- culturally or in humanitarian missions overseas. © 2016 John Wiley & Sons Ltd.

Issues experienced while administering care to patients with dementia in acute care hospitals: A study based on focus group interviews

PubMed Central

Fukuda, Risa; Shimizu, Yasuko

2015-01-01

Objective Dementia is a major public health problem. More and more patients with dementia are being admitted to acute care hospitals for treatment of comorbidities. Issues associated with care of patients with dementia in acute care hospitals have not been adequately clarified. This study aimed to explore the challenges nurses face in providing care to patients with dementia in acute care hospitals in Japan. Methods This was a qualitative study using focus group interviews (FGIs). The setting was six acute hospitals with surgical and medical wards in the western region of Japan. Participants were nurses in surgical and internal medicine wards, excluding intensive care units. Nurses with less than 3 years working experience, those without experience in dementia patient care in their currently assigned ward, and head nurses were excluded from participation. FGIs were used to collect data from February to December 2008. Interviews were scheduled for 1–1.5 h. The qualitative synthesis method was used for data analysis. Results In total, 50 nurses with an average experience of 9.8 years participated. Eight focus groups were formed. Issues in administering care to patients with dementia at acute care hospitals were divided into seven groups. Three of these groups, that is, problematic patient behaviors, recurrent problem, and problems affecting many people equally, interact to result in a burdensome cycle. This cycle is exacerbated by lack of nursing experience and lack of organization in hospitals. In coping with this cycle, the nurses develop protection plans for themselves and for the hospital. Conclusions The two main issues experienced by nurses while administering care to patients with dementia in acute care hospitals were as follows: (a) the various problems and difficulties faced by nurses were interactive and caused a burdensome cycle, and (b) nurses do their best to adapt to these conditions despite feeling conflicted. PMID:25716983

Having a baby in the new land: a qualitative exploration of the experiences of Asian migrants in rural Tasmania, Australia.

PubMed

Hoang, H T; Le, Q; Kilpatrick, S

2009-01-01

Australia is a land of cultural diversity. Cultural differences in maternity care may result in conflict between migrants and healthcare providers, especially when migrants have minimal English language knowledge. The aim of the study was to investigate Asian migrant women's child-birth experiences in a rural Australian context. The study consisted of semi-structured interviews conducted with 10 Asian migrant women living in rural Tasmania to explore their childbirth experiences and the barriers they faced in accessing maternal care in the new land. The data were analysed using grounded theory and three main categories were identified: 'migrants with traditional practices in the new land', 'support and postnatal experiences' and 'barriers to accessing maternal care'. The findings revealed that Asian migrants in Tasmania faced language and cultural barriers when dealing with the new healthcare system. Because some Asian migrants retain traditional views and practices for maternity care, confusion and conflicting expectations may occur. Family and community play an important role in supporting migrant women through their maternity care. Providing interpreting services, social support for migrant women and improving the cross-cultural training for healthcare providers were recommended to improve available maternal care services.

Despite Increased Insurance Coverage, Nonwhite Sexual Minorities Still Experience Disparities In Access To Care.

PubMed

Hsieh, Ning; Ruther, Matt

2017-10-01

Previous studies suggest that members of sexual minority groups have poorer access to health services than heterosexuals. However, few studies have examined how sexual orientation interacts with gender and race to affect health care experience. Moreover, little is known about the role in health care disparities played by economic strains such as unemployment and poverty, which may result from prejudice and discrimination based on sexual orientation. Using data for 2013-15 from the National Health Interview Survey, we found that most members of sexual minority groups no longer have higher uninsurance rates than heterosexuals, but many continue to experience poorer access to high-quality care. Gay nonwhite men, bisexual white women, and bisexual and lesbian nonwhite women are disadvantaged in multiple aspects of access, compared to straight white men. Only some of these disparities are attributable to economic factors, which implies that noneconomic barriers to care are substantial. Our results suggest that the intersection of multiple social identities can reveal important gaps in health care experience. Making culturally sensitive services available may be key to closing the gaps. Project HOPE—The People-to-People Health Foundation, Inc.

"It's not about treatment, it's how to improve your life": The lived experience of occupational therapy in palliative care.

PubMed

Badger, Sarah; Macleod, Rod; Honey, Anne

2016-06-01

A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness and focus on occupation. However, there is a limited understanding of how occupational therapy contributes to the end-of-life experience, which is crucial to providing optimal care. The aim of this study is to investigate the lived experience of occupational therapy in palliative care for people with a life-threatening illness. A hermeneutic interpretive phenomenological approach was adopted. Semi-structured interviews were conducted with eight participants recruited from inpatient and outpatient sectors of a specialist palliative care hospital in Sydney, Australia. The two themes developed from participant responses were: (1) occupational therapy provides comfort and safety and (2) trusting the occupational therapist to know what is needed. This study gives insight into the ways in which people with a life-threatening illness experience occupational therapy in palliative care. In addition, it provides a starting point to guide practice that is attentive to the needs of people with a life-threatening illness at end-of-life, thus enhancing client-centered care.

Patients with acute abdominal pain describe their experiences of fundamental care across the acute care episode: a multi-stage qualitative case study.

PubMed

Jangland, Eva; Kitson, Alison; Muntlin Athlin, Åsa

2016-04-01

To explore how patients with acute abdominal pain describe their experiences of fundamental care across the acute care episode. Acute abdominal pain is one of the most common conditions to present in the acute care setting. Little is known about how patients' fundamental care needs are managed from presentation to post discharge. A multi-stage qualitative case study using the Fundamentals of Care framework as the overarching theoretical and explanatory mechanism. Repeated reflective interviews were conducted with five adult patients over a 6-month period in 2013 at a university hospital in Sweden. The interviews (n = 14) were analysed using directed content analysis. Patients' experiences across the acute care episode are presented as five patient narratives and synthesized into five descriptions of the entire hospital journey. The patients talked about the fundamentals of care and had vivid accounts of what they meant to them. The experiences of each of the patients were influenced by the extent to which they felt engaged with the health professionals. The ability to engage or build a rapport was identified as a central component across the fundamental care elements, but it varied in visibility. Consistent pain management, comfort, timely and accurate information, choice and dignity and relationships were identified as essential fundamental care needs of patients experiencing acute abdominal pain regardless of setting, diagnosis, or demographic variables. These were variously achieved and the patients' narratives raised areas for improvement in several areas. © 2016 John Wiley & Sons Ltd.

Nursing students' perceptions of their clinical learning environment in placements outside traditional hospital settings.

PubMed

Bjørk, Ida T; Berntsen, Karin; Brynildsen, Grethe; Hestetun, Margrete

2014-10-01

To explore students' opinions of the learning environment during clinical placement in settings outside traditional hospital settings. Clinical placement experiences may influence positively on nursing students attitudes towards the clinical setting in question. Most studies exploring the quality of clinical placements have targeted students' experience in hospital settings. The number of studies exploring students' experiences of the learning environment in healthcare settings outside of the hospital venue does not match the growing importance of such settings in the delivery of health care, nor the growing number of nurses needed in these venues. A survey design was used. The Clinical Learning Environment Inventory was administered to two cohorts of undergraduate nursing students (n = 184) after clinical placement in mental health care, home care and nursing home care. Nursing students' overall contentment with the learning environment was quite similar across all three placement areas. Students in mental health care had significantly higher scores on the subscale individualisation, and older students had significantly higher scores on the total scale. Compared with other studies where the Clinical Learning Environment Inventory has been used, the students' total scores in this study are similar or higher than scores in studies including students from hospital settings. Results from this study negate the negative views on clinical placements outside the hospital setting, especially those related to placements in nursing homes and mental healthcare settings. Students' experience of the learning environment during placements in mental health care, home care and nursing homes indicates the relevance of clinical education in settings outside the hospital setting. © 2014 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.

Nursing students' perceptions of their clinical learning environment in placements outside traditional hospital settings

PubMed Central

Bjørk, Ida T; Berntsen, Karin; Brynildsen, Grethe; Hestetun, Margrete

2014-01-01

Aims and objectives To explore students' opinions of the learning environment during clinical placement in settings outside traditional hospital settings. Background Clinical placement experiences may influence positively on nursing students attitudes towards the clinical setting in question. Most studies exploring the quality of clinical placements have targeted students' experience in hospital settings. The number of studies exploring students' experiences of the learning environment in healthcare settings outside of the hospital venue does not match the growing importance of such settings in the delivery of health care, nor the growing number of nurses needed in these venues. Design A survey design was used. Method The Clinical Learning Environment Inventory was administered to two cohorts of undergraduate nursing students (n = 184) after clinical placement in mental health care, home care and nursing home care. Results Nursing students' overall contentment with the learning environment was quite similar across all three placement areas. Students in mental health care had significantly higher scores on the subscale individualisation, and older students had significantly higher scores on the total scale. Compared with other studies where the Clinical Learning Environment Inventory has been used, the students' total scores in this study are similar or higher than scores in studies including students from hospital settings. Conclusion Results from this study negate the negative views on clinical placements outside the hospital setting, especially those related to placements in nursing homes and mental healthcare settings. Relevance to clinical practice Students' experience of the learning environment during placements in mental health care, home care and nursing homes indicates the relevance of clinical education in settings outside the hospital setting. PMID:24460862

Paediatric end-of-life care needs in Switzerland: current practices, and perspectives from parents and professionals. A study protocol.

PubMed

Bergstraesser, Eva; Zimmermann, Karin; Eskola, Katri; Luck, Patricia; Ramelet, Anne-Sylvie; Cignacco, Eva

2015-08-01

To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. In Switzerland, paediatric palliative care is usually provided by teams, who may not necessarily have specific training. There is a lack of systematic data about specific aspects of care at the end of a child's life, such as symptom management, involvement of parents in decision-making and family-centred care and experiences and needs of parents, and perspectives of healthcare professionals. This retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry. The PELICAN study consists of three observational parts, PELICAN I describes practices of end-of-life care (defined as the last 4 weeks of life) in the hospital and home care setting of children (0-18 years) who died in the years 2011-2012 due to a cardiac, neurological or oncological disease, or who died in the neonatal period. PELICAN II assesses the experiences and needs of parents during the end-of-life phase of their child. PELICAN III focuses on healthcare professionals and explores their perspectives concerning the provision of end-of-life care. This first study across Switzerland will provide comprehensive insight into the current end-of-life care in children with distinct diagnoses and the perspectives of affected parents and health professionals. The results may facilitate the development and implementation of programmes for end-of-life care in children across Switzerland, building on real experiences and needs. ClinicalTrials.gov Identifier: NCT01983852. © 2015 John Wiley & Sons Ltd.

The Burden of Care: Mothers' Experiences of Children with Congenital Heart Disease.

PubMed

Sabzevari, Sakinne; Nematollahi, Monirsadat; Mirzaei, Tayebeh; Ravari, Ali

2016-10-01

Mothers play a key role in caring for their sick children. Their experiences of care were influenced by culture, rules, and the system of health and care services. There are few studies on maternal care of children with congenital heart disease. Also, each of them has studied a particular aspect of care. The present research aimed to understand care experiences of mothers of children with congenital heart disease. A conventional content analysis was used to obtain rich data. The goal of content analysis is "to provide knowledge and deeper understanding of the phenomenon under the study". The study was conducted in Kerman, Iran in 2014, on mothers of children with CHD. The purposive sampling technique was used to select the participants. Participants were 14 mothers of children with CHD and one father and one nurse of open heart surgery unit, from two hospitals affiliated with Kerman University of Medical Sciences. Eighteen semi-structured interviews were constructed. Data were analyzed using conventional content analysis. MAXQDA 2007 software (VERBI GmbH, Berlin, Germany) was used to classify and manage the coding. Constant comparative method was done for data analysis. The reliability and validity of the findings, including the credibility, confirm ability, dependability, and transferability, were assessed. According to the content analysis, the main theme was the catastrophic burden of child care on mothers that included three categories: 1) the tension resulting from the disease, 2) involvement with internal thoughts, and 3) difficulties of care process. The results of this study may help health care professionals to provide supportive and educational packages to the patients, mothers and Family members until improving the management of patient's care.

The experience of adverse childhood experiences and dental care in childhood.

PubMed

Crouch, Elizabeth; Radcliff, Elizabeth; Nelson, Joni; Strompolis, Melissa; Martin, Amy

2018-06-06

Routine preventive dental care is important to overall child health and well-being. However, the experience of adversity in childhood may prevent children from getting adequate preventive care. This study seeks to explore how the prevalence of adverse childhood experiences (ACEs) and the role of a protective adult may be associated with dental care utilization in childhood. Data from the 2016 South Carolina Behavioral Risk Factor Surveillance System (SC BRFSS), which interviews adults eighteen year of age and older, were used in this study. Dental care utilization in childhood was measured as the adult retrospectively reported frequency of dental care in childhood: at least once every 2 years (adequate dental care) or less often than every 2 years (inadequate dental care). ACEs were determined by asking about each of respondent's childhood exposure to eleven childhood experiences, including divorce, parental incarceration, domestic violence, drug and alcohol abuse, mental illness and emotional, physical or sexual abuse. The presence of a protective adult in childhood included respondents who had an adult who made them feel safe and protected during childhood. Descriptive and bivariate statistics explored differences in the adequacy of child dental care by ACE exposure, the presence of a protective adult and selected demographic characteristics. Multivariate regression models were used to examine the impact of counts and types of ACEs and the presence of a protective adult with inadequate childhood dental care. The unweighted study sample included 7079 respondents ageing from 18 to 79 years of age Sampling weights were used for all analyses. Among all respondents, 71.7% reported receiving adequate dental care during childhood; 28.3% responded that they received inadequate dental care. Adjusting for sociodemographic characteristics, respondents who experienced four or more ACEs had a higher likelihood of inadequate dental care than respondents who reported no ACEs (aOR 2.79; 95% CI 2.77-2.82). The odds of reporting inadequate dental care were lower among those grew up with an adult who made them feel safe and protected (aOR 0.38; 95% CI 0.37-0.39). The presence of protective factors may mitigate the effects of ACEs on paediatric dental care. This research contributes to the literature through the further identification of the role of dentists in identifying signs of abuse and neglect. © 2018 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Nurses' experiences of practice and political reform in long-term aged care in Australia: implications for the retention of nursing personnel.

PubMed

Venturato, Lorraine; Kellett, Ursula; Windsor, Carol

2007-01-01

The aim of the study was to explore registered nurses' experiences in long-term aged care in light of the political reform of aged care services in Australia. In Australia, the aged care industry has undergone a lengthy period of political and structural reform. Despite reviews into various aspects of these reforms, there has been little consideration of the effect these are having on the practice experiences and retention of nursing staff in long-term care. In this critical hermeneutic study, 14 nurses from long-term care facilities in Australia were interviewed about their experiences during the reform period. The data revealed a sense of tension and conflict between nurses' traditional values, roles and responsibilities and those supported by the reforms. Nurses struggled to re-negotiate both their practice roles and values as the reforms were implemented and the system evolved. Nursing management support was an important aspect in mediating the effect of reforms on nursing staff. This research highlights both the tensions experienced by nurses in long-term aged care in Australia and the need to re-negotiate nursing roles, responsibilities and values within an evolving care system. This research supports a role for sensitive and proactive nursing management during periods of industry reform as a retention strategy for qualified nursing personnel.

A descriptive phenomenology study of newcomers’ experience of maternity care services: Chinese women’s perspectives

PubMed Central

2014-01-01

Background Maternity health care available in Canada is based on the needs of women born in Canada and often lacks the flexibility to meet the needs of immigrant women. The purpose of this study was to explore immigrant Chinese women’s experiences in accessing maternity care, the utilization of maternity health services, and the obstacles they perceived in Canada. Methods This descriptive phenomenology study used in-depth semi-structured interviews to examine immigrant Chinese women’s experiences. Fifteen participants were recruited from the Chinese community in Toronto, Canada by using purposive sampling. The interviews were digitally recorded and transcribed verbatim into written Chinese. The transcripts were analyzed using Colaizzi’s (1978) phenomenological method. Results Six themes were extracted from the interviews: (1) preference for linguistically and culturally competent healthcare providers, with obstetricians over midwives, (2) strategies to deal with the inconvenience of the Canadian healthcare system (3) multiple resources to obtain pregnancy information, (4) the merits of the Canadian healthcare system, (5) the need for culturally sensitive care, and (6) the emergence of alternative supports and the use of private services. Conclusions The findings provide new knowledge and understanding of immigrant Chinese women’s experiences in accessing maternity health services within a large metropolitan Canadian city. Participants described two unique experiences within the themes: preference for linguistically and culturally competent healthcare providers, with obstetricians over midwives, and the emergence of alternative supports and the use of private services. Few studies of immigrant maternity service access have identified these experiences which may be linked to cultural difference. Further investigation with women from different cultural backgrounds is needed to develop a comprehensive understanding of immigrant women’s experiences with maternity care. PMID:24602231

Interprofessional Graduate Students' Perspectives on Caring for Vulnerable Populations.

PubMed

Wright, Patricia Moyle; Hanson, Mary Jane S

The purpose of this focus group study was to explore graduate students' clinical experiences with vulnerable populations, perceived barriers to care, and ethical issues related to caring for disenfranchised groups. Furthermore, based on their experiences, the students were asked to share suggestions for curricular changes that could enhance care for vulnerable populations through interdisciplinary collaboration and multidisciplinary projects. The responses of the participants add to what is known about the care of vulnerable populations, offering a first-hand description of students' preparation for work with vulnerable populations and the interdisciplinary team.

Point-of-Care Testing in Bathhouses: A Narrative Inquiry into the Experience of Receiving a Positive Preliminary HIV Test Result.

PubMed

Genoway, Shyla; Caine, Vera; Singh, Ameeta E; Estefan, Andrew

2016-01-01

With a call to increase the accessibility of HIV testing, point-of-care testing for HIV is being readily adopted, but little attention has been paid to the experiences of people being tested at HIV point-of-care sites. Some testing environments, such as bathhouses, promote testing for HIV in higher-risk groups. In this narrative inquiry study we explored the experiences of people testing positive for HIV through point-of-care while at a bathhouse. Three narrative threads for reconsidering the practice were identified: (a) seeing complexities, understanding testing decisions in relation to time, place, and social context; (b) recognizing the impact and significance of secret and silent stories; and (c) tentative and tension-filled connections to care. It is important to understand testing experiences across time, place, and in diverse social contexts. These experiences are embedded within the larger life histories of people and raise questions about adequate support, follow-up, and counseling. Copyright © 2016 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.

A comparison of experiences of training emergency care in military exercises and competences among conscript nurses with different levels of education.

PubMed

Johansson, Anders; Odén, Anders; Dahlgren, Lars-Owe; Sjöström, Björn

2007-10-01

The military emergency care education of nurses is primarily concerned with the treatment of soldiers with combat-related injuries. Even though great progress has been made in military medicine, there is still the pedagogical question of what emergency care education for military nurses should contain and how it should be taught. The aim of this study was to describe and compare experiences of training emergency care in military exercises among conscript nurses with different levels of education. A descriptive study was performed to describe and compare experiences of training emergency care in military exercises among conscript nurses with different levels of education in nursing. There were statistical differences between nurses with general nursing education and nurses with a general nursing education and supplementary education. A reasonable implication of the differences is that the curriculum must be designed differently depending on the educational background of the students. Hence, there is an interaction between background characteristics, e.g., the level of previous education and differences pertaining to clinical experience of the participants, and the impact of the exercise itself.

The benefits of co-location in primary care practices: the perspectives of general practitioners and patients in 34 countries.

PubMed

Bonciani, M; Schäfer, W; Barsanti, S; Heinemann, S; Groenewegen, P P

2018-02-21

There is no clear evidence as to whether the co-location of primary care professionals in the same facility positively influences their way of working and the quality of healthcare as perceived by patients. The aim of this study was to identify the relationships between general practitioner (GP) co-location with other GPs and/or other professionals and the GP outcomes and patients' experiences. We wanted to test whether GP co-location is related to a broader range of services provided, the use of clinical governance tools and inter-professional collaboration, and whether the patients of co-located GPs perceive a better quality of care in terms of accessibility, comprehensiveness and continuity of care with their GPs. The source of data was the QUALICOPC study (Quality and Costs of Primary Care in Europe), which involved surveys of GPs and their patients in 34 countries, mostly in Europe. In order to study the relationships between GP co-location and both GPs' outcomes and patients' experience, multilevel linear regression analysis was carried out. The GP questionnaire was filled in by 7183 GPs and the patient experience questionnaire by 61,931 patients. Being co-located with at least one other professional is the most common situation of the GPs involved in the study. Compared with single-handed GP practices, GP co-location are positively associated with the GP outcomes. Considering the patients' perspective, comprehensiveness of care has the strongest negative relationship of GP co-location of all the dimensions of patient experiences analysed. The paper highlights that GP mono- and multi-disciplinary co-location is related to positive outcomes at a GP level, such as a broader provision of technical procedures, increased collaboration among different providers and wider coordination with secondary care. However, GP co-location, particularly in a multidisciplinary setting, is related to less positive patient experiences, especially in countries with health systems characterised by a weak primary care structure.

A health economic model for the development and evaluation of innovations in aged care: an application to consumer-directed care-study protocol.

PubMed

Ratcliffe, Julie; Lancsar, Emily; Luszcz, Mary; Crotty, Maria; Gray, Len; Paterson, Jan; Cameron, Ian D

2014-06-25

Consumer-directed care is currently being embraced within Australia and internationally as a means of promoting autonomy and choice in the delivery of health and aged care services. Despite its wide proliferation little research has been conducted to date to assess the views and preferences of older people for consumer-directed care or to assess the costs and benefits of such an approach relative to existing models of service delivery. A comprehensive health economic model will be developed and applied to the evolution, implementation and evaluation of consumer-directed care in an Australian community aged care setting. A mixed methods approach comprising qualitative interviews and a discrete choice experiment will determine the attitudes and preferences of older people and their informal carers for consumer-directed care. The results of the qualitative interviews and the discrete choice experiment will inform the introduction of a new consumer-directed care innovation in service delivery. The cost-effectiveness of consumer-directed care will be evaluated by comparing incremental changes in resource use, costs and health and quality of life outcomes relative to traditional services. The discrete choice experiment will be repeated at the end of the implementation period to determine the extent to which attitudes and preferences change as a consequence of experience of consumer-directed care. The proposed framework will have wide applicability in the future development and economic evaluation of new innovations across the health and aged care sectors. The study is approved by Flinders University Social and Behavioural Research Ethics Committee (Project No. 6114/SBREC). Findings from the qualitative interviews, discrete choice experiments and the economic evaluation will be reported at a workshop of stakeholders to be held in 2015 and will be documented in reports and in peer reviewed journal articles. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Outcomes of Integrated Behavioral Health with Primary Care.

PubMed

Balasubramanian, Bijal A; Cohen, Deborah J; Jetelina, Katelyn K; Dickinson, L Miriam; Davis, Melinda; Gunn, Rose; Gowen, Kris; deGruy, Frank V; Miller, Benjamin F; Green, Larry A

2017-01-01

Integrating behavioral health and primary care is beneficial to patients and health systems. However, for integration to be widely adopted, studies demonstrating its benefits in community practices are needed. The objective of this study was to evaluate effect of integrated care, adapted to local contexts, on depression severity and patients' experience of care. This study used a convergent mixed-methods design, merging findings from a quasi-experimental study with patient interviews conducted as part of Advancing Care Together, a community demonstration project that created an innovation incubator for practices implementing evidence-based integration strategies. The study included 475 patients with a 9-item Patient Health Questionnaire (PHQ-9) score ≥10 at baseline, from 5 practices. Statistically significant reductions in mean PHQ-9 scores were observed in all practices, ranging from 2.72 to 6.46 points. Clinically, 50% of patients had a ≥5-point reduction in PHQ-9 score and 32% had a ≥50% reduction. This finding was corroborated by patient interviews that demonstrated positive experiences with behavioral health clinicians and acquiring new skills to cope with adverse situations at work and home. Integrating behavioral health and primary care, when adapted to fit into community practices, reduced depression severity and enhanced patients' experience of care. Integration is a worthwhile investment; clinical leaders, policymakers, and payers should support integration in their communities. © Copyright 2017 by the American Board of Family Medicine.

The patient experience of intensive care: a meta-synthesis of Nordic studies.

PubMed

Egerod, Ingrid; Bergbom, Ingegerd; Lindahl, Berit; Henricson, Maria; Granberg-Axell, Anetth; Storli, Sissel Lisa

2015-08-01

Sedation practices in the intensive care unit have evolved from deep sedation and paralysis toward lighter sedation and better pain management. The new paradigm of sedation has enabled early mobilization and optimized mechanical ventilator weaning. Intensive care units in the Nordic countries have been particularly close to goals of lighter or no sedation and a more humane approach to intensive care. The aim of our study was to systematically review and reinterpret newer Nordic studies of the patient experience of intensive care to obtain a contemporary description of human suffering during life-threatening illness. We conducted a meta-synthesis in which we collected, assessed, and analyzed published qualitative studies with the goal of synthesizing these findings into a new whole. Analysis was based on the scientific approach of Gadamerian hermeneutics. Nordic intensive care units. Patients in Nordic intensive care units. We performed a literature search of qualitative studies of the patient experience of intensive care based on Nordic publications in 2000-2013. We searched the following databases: PubMed, CINAHL, Scopus, and PsycINFO. Each original paper was assessed by all authors using the Critical Appraisal Skills Program instrument for qualitative research. We included 22 studies, all of which provided direct patient quotes. The overarching theme was identified as: The patient experience when existence itself is at stake. We constructed an organizing framework for analysis using the main perspectives represented in the included studies: body, mind, relationships, and ICU-environment. Final analysis and interpretation resulted in the unfolding of four themes: existing in liminality, existing in unboundedness, existing in mystery, and existing on the threshold. Our main finding was that human suffering during intensive care is still evident although sedation is lighter and the environment is more humane. Our interpretation suggested that patients with life-threatening illness descend into a liminal state, where they face the choice of life or death. Caring nurses and family members play an important role in assisting the patient to transition back to life. Copyright © 2015 Elsevier Ltd. All rights reserved.

Beyond fighting fires and chasing tails? Chronic illness care plans in Ontario, Canada.

PubMed

Russell, Grant; Thille, Patricia; Hogg, William; Lemelin, Jacques

2008-01-01

Recent work has conceptualized new models for the primary care management of patients with chronic illness. This study investigated the experience of family physicians and patients with a chronic illness management initiative that involved the joint formulation of comprehensive individual patient care plans. A qualitative evaluation, framed by phenomenology, immediately followed a randomized controlled trial examining the effect of external facilitators in enhancing the delivery of chronic condition care planning in primary care. The study, set in Ontario family practices, used semistructured in-depth interviews with a purposive sample of 13 family physicians, 20 patients, and all 3 study facilitators. Analysis used independent transcript review and constant comparative methods. Despite the intervention being grounded in patient-centered principles, family physicians generally viewed chronic illness management from a predominantly biomedical perspective. Only a few enthusiasts viewed systematic care planning as a new approach to managing patients with chronic illness. Most family physicians found the strategy to be difficult to implement within existing organizational and financial constraints. For these participants, care planning conflicted with preexisting concepts of their role and of their patient's abilities to become partners in care. The few patients who noticed the process spoke favorably about their experience. Although the experiences of the enthusiastic family physicians were encouraging, we found important individual-level barriers to chronic illness management in primary care. These issues seemed to transcend existing organizational and resource constraints.

Palliative care for patients with Parkinson's disease: study protocol for a mixed methods study.

PubMed

Lennaerts, Herma; Groot, Marieke; Steppe, Maxime; van der Steen, Jenny T; Van den Brand, Marieke; van Amelsvoort, Dorian; Vissers, Kris; Munneke, Marten; Bloem, Bastiaan R

2017-11-25

Parkinson's disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and - if needed - the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD. We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5-15 patients with PD and their family caregiver will be followed prospectively for 8-12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver. This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

Help bring back the celebration of life: A community-based participatory study of rural Aboriginal women’s maternity experiences and outcomes

PubMed Central

2013-01-01

Background Despite clear evidence regarding how social determinants of health and structural inequities shape health, Aboriginal women’s birth outcomes are not adequately understood as arising from the historical, economic and social circumstances of their lives. The purpose of this study was to understand rural Aboriginal women’s experiences of maternity care and factors shaping those experiences. Methods Aboriginal women from the Nuxalk, Haida and 'Namgis First Nations and academics from the University of British Columbia in nursing, medicine and counselling psychology used ethnographic methods within a participatory action research framework. We interviewed over 100 women, and involved additional community members through interviews and community meetings. Data were analyzed within each community and across communities. Results Most participants described distressing experiences during pregnancy and birthing as they grappled with diminishing local maternity care choices, racism and challenging economic circumstances. Rural Aboriginal women’s birthing experiences are shaped by the intersections among rural circumstances, the effects of historical and ongoing colonization, and concurrent efforts toward self-determination and more vibrant cultures and communities. Conclusion Women’s experiences and birth outcomes could be significantly improved if health care providers learned about and accounted for Aboriginal people’s varied encounters with historical and ongoing colonization that unequivocally shapes health and health care. Practitioners who better understand Aboriginal women’s birth outcomes in context can better care in every interaction, particularly by enhancing women’s power, choice, and control over their experiences. Efforts to improve maternity care that account for the social and historical production of health inequities are crucial. PMID:23360168

The Continuity of Care Experience in Australian midwifery education-What have we achieved?

PubMed

Tierney, Olivia; Sweet, Linda; Houston, Don; Ebert, Lyn

2017-06-01

The Continuity of Care Experience is a mandated workplace based component of midwifery education in Australia. Since its inclusion in midwifery clinical education, the pedagogical approaches used across Australia have varied. The purpose of this integrative review is to determine the outcomes of the Continuity of Care Experience as an educational model. A search for relevant research literature was undertaken in 2015 using a range of databases and by examining relevant bibliographies. Articles published in English, which provided information about the outcomes of Continuity of Care Experiences for midwifery education were included. A total of 20 studies were selected. The included studies were primarily exploratory and descriptive. Studies reported the value that both students and women place on the relationship they developed. This relationship resulted in opportunities that enhanced student learning by providing a context in which clinical practice learning was optimized. Challenges identified included managing time and workload pressures for students in relation to the CCE, inconsistencies in academic use of the experience, and variations in how the healthcare system influences the continuity experience. No research was found that reports on the educational model in terms of defining learning objectives and assessment of outcomes. This represents an important omission in mandating this clinical practice model in midwifery curricula without sufficient guidance to unify and maximize learning for students. Research is required to explore the educational intent and assessment methods of the Continuity of Care Experience as an educational model. Copyright © 2016 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.

[Childhood Experiences of Adolescents in Boarding Schools. A Comparison with Adolescents in Residential Care and with the General Population].

PubMed

Rau, Thea; Ohlert, Jeannine; Fegert, Jörg M; Andresen, Sabine; Pohling, Andrea; Allroggen, Marc

2018-01-01

Childhood Experiences of Adolescents in Boarding Schools. A Comparison with Adolescents in Residential Care and with the General Population Various studies indicate that students in boarding schools experience a lot of violence during their accommodation. However, it is not proved whether adolescents in boarding schools are also a burdensome group regarding early childhood experiences such as neglect and abuse. The aim of the study was to find out more about the experiences of adolescents in boarding schools and to determine whether there are differences between adolescents in residential care and between the general population. Furthermore, it should be examined whether boys and girls differ in their experiences. In the study, adolescents of boarding schools and of residential care all over Germany, starting at the age of 15 (n = 322), were asked regarding physical and emotional neglect/abuse, light/severe parent violence, negative/positive educational behavior of the parents. The results show that students in boarding schools were less likely to be affected by childhood maltreatment and more likely to have experienced positive parental behavior compared to children in residential care. Compared to the general population, students in boarding schools were more often and more severely affected by parental violence. Moreover, girls had experienced parental violence more often than boys. The results indicate that in boarding schools there is a need for support offers for adolescents with a history of violent experiences and that the risk group should be identified directly at the admission to the school.

Health Care Experiences and Perceived Barriers to Health Care Access: A Qualitative Study Among African Migrants in Guangzhou, Guangdong Province, China

PubMed Central

Brown, Katherine B.; Yu, Fan; Yang, Jingqi; Wang, Jason; Schrock, Joshua M.; Bodomo, Adams B.; Yang, Ligang; Yang, Bin; Nehl, Eric J.; Tucker, Joseph D.; Wong, Frank Y.

2014-01-01

Guangzhou, one of China's largest cities and a main trading port in South China, has attracted many African businessmen and traders migrating to the city for financial gains. Previous research has explored the cultural and economic roles of this newly emerging population; however, little is known about their health care experiences while in China. Semi-structured interviews and focus groups were used to assess health care experiences and perceived barriers to health care access among African migrants in Guangzhou, China. Overall, African migrants experienced various barriers to accessing health care and were dissatisfied with local health services. The principal barriers to care reported included affordability, legal issues, language barriers, and cultural differences. Facing multiple barriers, African migrants have limited access to care in Guangzhou. Local health settings are not accustomed to the African migrant population, suggesting that providing linguistically and culturally appropriate services may improve access to care for the migrants. PMID:25294415

HIV Stigma, Retention in Care, and Adherence Among Older Black Women Living With HIV.

PubMed

Sangaramoorthy, Thurka; Jamison, Amelia M; Dyer, Typhanye V

Stigma is recognized as a barrier to the prevention, care, and treatment of HIV, including engagement in the HIV care continuum. HIV stigma in older Black women may be compounded by preexisting social inequities based on gender, age, and race. Using semi-structured interviews and survey questionnaires, we explore experiences of HIV stigma, retention in care, and antiretroviral therapy (ART) adherence in 35 older Black women with HIV from Prince George's County, Maryland. Study findings indicated that older Black women experienced high levels of HIV stigma, retention in care, and ART adherence. Findings suggest that experiences of HIV stigma were intensified for older Black women due to multiple stigmatized social positions. Participants also reported experiences of marginalization in health care that hindered retention in care and ART adherence. Interventions aimed at improving HIV prevention, care, and treatment outcomes should incorporate HIV stigma reduction strategies as core elements. Copyright © 2017 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.

Transitions in the communication experiences of tracheostomised patients in intensive care: a qualitative descriptive study.

PubMed

Flinterud, Stine Irene; Andershed, Birgitta

2015-08-01

To describe how tracheostomised patients in intensive care experience acts of communication and to better understand their experiences in the context of the transitions theory. Waking up in an intensive care unit unable to speak because of mechanical ventilation can be challenging. Communication aids are available, but patients still report difficulties communicating. Investigating how mechanically ventilated patients experience communication in the context of the transitions theory might elucidate new ways of supporting them during their transitions while being ventilated. A qualitative, descriptive design. Eleven patients who had previously been tracheostomised in an intensive care unit were included in this quality improvement project conducted in a university hospital in Norway. Participants were tracheostomised from 3-27 days. Semistructured interviews were conducted from June 2013-August 2013, 3-18 months after hospital discharge. Transcripts were analysed using inductive content analysis. Participants reported a great diversity of emotions and experiences attempting to communicate while being tracheostomised. One overarching theme emerging from the analysis was the 'Experience of caring and understanding despite having uncomfortable feelings due to troublesome communication.' The theme consists of three categories. The category 'Emotionally challenging' shows that patients struggled initially. With time, their coping improved, as revealed in the category 'The experience changes with time.' Despite difficulties, participants described positive experiences, as shown in the category 'Successful communication.' The importance of patients experiencing caring and understanding despite their difficult situation constitutes the core finding. The findings suggest that participants went through different transitions. Some reached the end of their transition, experiencing increased stability. Despite challenges with communication, participants reported that caring and safety provided by health care professionals were significant experiences. They viewed nonverbal communication as being very important. © 2015 John Wiley & Sons Ltd.

Self-Healing and Self-Care for Nurses.

PubMed

Crane, Patricia J; Ward, Suzanne F

2016-11-01

The potential effects of self-care techniques to increase nurses' effectiveness and influence positive patient care outcomes have often been underestimated. Today, nurses experience increased stress as a result of more work hours and greater patient loads. Research studies demonstrate the value to an organization and to individuals of educating nurses about self-care. Studies also show that how being aware of individual reaction patterns is vital to learning more effective coping mechanisms. In this article, we discuss the aspects of body, mind, emotions, and spirit as they relate to self-care; present self-care change techniques; and offer some practical self-care exercises. Most self-care skills can be learned and implemented in a short period of time. Nurses are encouraged to experiment with the various techniques to determine the most effective ones for them. Copyright © 2016 AORN, Inc. Published by Elsevier Inc. All rights reserved.

Nurses' Learning Experiences with the Kinaesthetics Care Concept Training in a Nursing Home: A Qualitative Descriptive Study

ERIC Educational Resources Information Center

Fringer, André; Huth, Martina; Hantikainen, Virpi

2015-01-01

In geriatric care, movement support skills of nurses are often limited, resulting in unnecessary functional decline of older adult residents and physical strain of nurses. Kinaesthetics training aims to improve movement competences of nurses and residents. The aim of this qualitative descriptive study is to describe nursing teams' experience with…

A Qualitative Study on Women’s Experiences of Intrapartum Nursing Care at Tamale Teaching Hospital (TTH), Ghana

PubMed Central

Afaya, Agani; Yakong, Vida N.; Afaya, Richard A.; Salia, Solomon M.; Adatara, Peter; Kuug, Anthony K; Nyande, Flex K.

2017-01-01

Introduction: Labor and delivery process is an exciting, anxiety-provoking, but rewarding time for a woman and her family after successful delivery of a newborn. The intrapartum period is the time where mothers expect more care. Taking care of a mother through delivery with no side effects is the task of a professional midwife who is trained with the skill to take the responsibility of caring for mothers and babies. Therefore, the aim of this study was to explore mother’s experiences regarding quality of intrapartum nursing/midwifery care. Methods: Focused ethnographic study was employed. Data were collected from May to June 2016 TTH, Ghana using semi structured interview guide. Purposive sampling was employed to recruit 20 participants. Eight individual interviews were conducted in the post natal ward after 48 hours of delivery, followed by three focus group discussions two weeks after delivery when mothers visited post natal clinic. Interviews lasted for about 30-45 minutes during each session. Data were analyzed using thematic analysis. Results: The average age of women were 29 years with ranging from 19-43 years. Participants’ experiences of nursing/midwifery care during birth were influenced by reception and respect, provision of information, technical skill, providers’ behavior, pain management and availability of nurses/midwives. Conclusion: The study findings have revealed that women’s experience of care is affected by a wide range of determinants. Therefore, maternal health programs and policies in Ghana must take into account women’s perspective on the care they need and their feedback on services they receive. Nursing education should re-enforce communication/relational skills. PMID:29302570

Lived Experience of Caregivers of Family-Centered Care in the Neonatal Intensive Care Unit: “Evocation of Being at Home”

PubMed Central

Hadian Shirazi, Zahra; Sharif, Farkhondeh; Rakhshan, Mahnaz; Pishva, Narjes; Jahanpour, Faezeh

2016-01-01

Background In recent decades, family-centered care (FCC) has come to be known, accepted, and reported as the best care strategy for admitted children and their families. However, in spite of the increasing application of this approach, the experiences of the caregivers have not yet been studied. Objectives The present study aimed at the description and interpretation of the FCC experience in two neonatal intensive care units (NICU) at Shiraz University of Medical Sciences. Methods This study was conducted through the hermeneutic phenomenological approach. Semi-structured interviews were conducted with 17 professional and familial caregivers, and their interactions were observed in three work shifts. The interviews were audiotaped and transcribed verbatim. After observations, field notes were also written. Finally, the data were analyzed through van Manen’s methodology. Results One of the essential themes that emerged in this study was the “evocation of being at home” among familial and even professional caregivers. This theme had three subthemes: i.e., “meta-family interaction,” “comprehensive support,” and “reconstruction of a normal family.” Accordingly, FCC eliminated borders between professional and non-professional caregivers and built close relationships among them in the NICU. It also provided for the needs of neonates, their families, and even professional caregivers through perceived and received support. Conclusions Parents of the neonates admitted to the NICU experience hard moments. They not only play the role of primary caregivers, but they also receive the care. Focusing on the different meanings of this care from the caregivers’ points of view and having managers provide certain requirements can guarantee the establishment of comprehensive care for clients and proper support for the staff in this unit. PMID:28203324

Lived Experience of Caregivers of Family-Centered Care in the Neonatal Intensive Care Unit: "Evocation of Being at Home".

PubMed

Hadian Shirazi, Zahra; Sharif, Farkhondeh; Rakhshan, Mahnaz; Pishva, Narjes; Jahanpour, Faezeh

2016-10-01

In recent decades, family-centered care (FCC) has come to be known, accepted, and reported as the best care strategy for admitted children and their families. However, in spite of the increasing application of this approach, the experiences of the caregivers have not yet been studied. The present study aimed at the description and interpretation of the FCC experience in two neonatal intensive care units (NICU) at Shiraz University of Medical Sciences. This study was conducted through the hermeneutic phenomenological approach. Semi-structured interviews were conducted with 17 professional and familial caregivers, and their interactions were observed in three work shifts. The interviews were audiotaped and transcribed verbatim. After observations, field notes were also written. Finally, the data were analyzed through van Manen's methodology. One of the essential themes that emerged in this study was the "evocation of being at home" among familial and even professional caregivers. This theme had three subthemes: i.e., "meta-family interaction," "comprehensive support," and "reconstruction of a normal family." Accordingly, FCC eliminated borders between professional and non-professional caregivers and built close relationships among them in the NICU. It also provided for the needs of neonates, their families, and even professional caregivers through perceived and received support. Parents of the neonates admitted to the NICU experience hard moments. They not only play the role of primary caregivers, but they also receive the care. Focusing on the different meanings of this care from the caregivers' points of view and having managers provide certain requirements can guarantee the establishment of comprehensive care for clients and proper support for the staff in this unit.

The uniqueness of elderly care: registered nurses' experience as preceptors during clinical practice in nursing homes and home-based care.

PubMed

Carlson, Elisabeth; Bengtsson, Mariette

2014-04-01

The expected shortage of registered nurses with an advanced degree as specialists in geriatric care or gerontology is imminent. Previous studies report that clinical practice where student nurses are supervised by registered nurses has a direct impact on how students perceive nursing as a profession and future career choice. Considering the anticipated need for well-educated and specialised nurses it is therefore, relevant as well as necessary to describe clinical learning with a focus on preceptorship in geriatric nursing care. This paper is a report of a study describing registered nurses' experience of precepting undergraduate student nurses during clinical practice in nursing homes and home-based care. A qualitative design, based on seven focus group interviews, was employed with 30 registered nurses with preceptor experience from nursing homes and home-based care for the elderly. Our findings present three precepting strategies that are unique to elderly care: preparing students for end of life care, facilitating a respectful approach to the older person and promoting creativity and independent work. The findings are discussed using a socio-cultural perspective and illustrate how communities of elderly practice can be valuable learning environments. © 2013.

Using Infant Massage Following a Mother's Unfavorable Neonatal Intensive Care Unit Experiences: A Case Study

ERIC Educational Resources Information Center

Lappin, Grace

2005-01-01

The purpose of this case study was to explore the synchronous behaviors enacted by mother and infant with blindness. In the study, a mother's less than optimal experience with the neonatal intensive care unit (NICU) had a profound effect not only on her and her infant son, who was born 3 months prematurely and was visually impaired, but also on…

Factors influencing oncology nurses' approaches to accommodating cultural needs in palliative care.

PubMed

Huang, Ya-Ling; Yates, Patsy; Prior, Deborah

2009-12-01

The purpose of this study is to explore the social construction of cultural issues in palliative care amongst oncology nurses. Australia is a nation composed of people from different cultural origins with diverse linguistic, spiritual, religious and social backgrounds. The challenge of working with an increasingly culturally diverse population is a common theme expressed by many healthcare professionals from a variety of countries. Grounded theory was used to investigate the processes by which nurses provide nursing care to cancer patients from diverse cultural backgrounds. Semi-structured interviews with seven Australian oncology nurses provided the data for the study; the data was analysed using grounded theory data analysis techniques. The core category emerging from the study was that of accommodating cultural needs. This paper focuses on describing the series of subcategories that were identified as factors which could influence the process by which nurses would accommodate cultural needs. These factors included nurses' views and understandings of culture and cultural mores, their philosophy of cultural care, nurses' previous experiences with people from other cultures and organisational approaches to culture and cultural care. This study demonstrated that previous experiences with people from other cultures and organisational approaches to culture and cultural care often influenced nurses' views and understandings of culture and cultural mores and their beliefs, attitudes and behaviours in providing cultural care. Relevance to clinical practice. It is imperative to appreciate how nurses' experiences with people from other cultures can be recognised and built upon or, if necessary, challenged. Furthermore, nurses' cultural competence and experiences with people from other cultures need to be further investigated in clinical practice.

Public involvement in research within care homes: benefits and challenges in the APPROACH study.

PubMed

Froggatt, Katherine; Goodman, Claire; Morbey, Hazel; Davies, Sue L; Masey, Helen; Dickinson, Angela; Martin, Wendy; Victor, Christina

2016-12-01

Public involvement in research (PIR) can improve research design and recruitment. Less is known about how PIR enhances the experience of participation and enriches the data collection process. In a study to evaluate how UK care homes and primary health-care services achieve integrated working to promote older people's health, PIR was integrated throughout the research processes. This paper aims to present one way in which PIR has been integrated into the design and delivery of a multisite research study based in care homes. A prospective case study design, with an embedded qualitative evaluation of PIR activity. Data collection was undertaken in six care homes in three sites in England. Six PIR members participated: all had prior personal or work experience in care homes. Qualitative data collection involved discussion groups, and site-specific meetings to review experiences of participation, benefits and challenges, and completion of structured fieldwork notes after each care home visit. PIR members supported recruitment, resident and staff interviews and participated in data interpretation. Benefits of PIR work were resident engagement that minimized distress and made best use of limited research resources. Challenges concerned communication and scheduling. Researcher support for PIR involvement was resource intensive. Clearly defined roles with identified training and support facilitated involvement in different aspects of the data collection process. This can also ensure that vulnerable older people who participate in research have a positive experience that reinforces the value of their views. © 2015 The Authors Health Expectations Published by John Wiley & Sons Ltd.

'Every pregnant woman needs a midwife'--the experiences of HIV affected women in maternity care.

PubMed

Kelly, Carmel; Alderdice, Fiona; Lohan, Maria; Spence, Dale

2013-02-01

'Every pregnant woman needs a midwife'-the experiences of HIV affected women in Northern Ireland. to explore HIV positive women's experiences of pregnancy and maternity care, with a focus on their interactions with midwives. a prospective qualitative study. regional HIV unit in Northern Ireland. 22 interviews were conducted with 10 women at different stages of their reproductive trajectories. the pervasive presence of HIV related stigma threatened the women's experience of pregnancy and care. The key staff attributes that facilitated a positive experience were knowledge and experience, empathy and understanding of their unique needs and continuity of care. pregnancy in the context of HIV, whilst offering a much needed sense of normality, also increases woman's sense of anxiety and vulnerability and therefore the need for supportive interventions that affirm normality is intensified. A maternity team approach, with a focus on providing 'balanced care' could meet all of the woman and child's medical needs, whilst also emphasising the normalcy of pregnancy. Crown Copyright © 2012. Published by Elsevier Ltd. All rights reserved.

Assessing Patient-Centered Communication in Cancer Care: Stakeholder Perspectives

PubMed Central

Mazor, Kathleen M.; Gaglio, Bridget; Nekhlyudov, Larissa; Alexander, Gwen L.; Stark, Azadeh; Hornbrook, Mark C.; Walsh, Kathleen; Boggs, Jennifer; Lemay, Celeste A.; Firneno, Cassandra; Biggins, Colleen; Blosky, Mary Ann; Arora, Neeraj K.

2013-01-01

Purpose: Patient-centered communication is critical to quality cancer care. Effective communication can help patients and family members cope with cancer, make informed decisions, and effectively manage their care; suboptimal communication can contribute to care breakdowns and undermine clinician-patient relationships. The study purpose was to explore stakeholders' views on the feasibility and acceptability of collecting self-reported patient and family perceptions of communication experiences while receiving cancer care. The results were intended to inform the design, development, and implementation of a structured and generalizable patient-level reporting system. Methods: This was a formative, qualitative study that used semistructured interviews with cancer patients, family members, clinicians, and leaders of health care organizations. The constant comparative method was used to identify major themes in the interview transcripts. Results: A total of 106 stakeholders were interviewed. Thematic saturation was achieved. All stakeholders recognized the importance of communication and endorsed efforts to improve communication during cancer care. Patients, clinicians, and leaders expressed concerns about the potential consequences of reports of suboptimal communication experiences, such as damage to the clinician-patient relationship, and the need for effective improvement strategies. Patients and family members would report good communication experiences in order to encourage such practices. Practical and logistic issues were identified. Conclusion: Patient reports of their communication experiences during cancer care could increase understanding of the communication process, stimulate improvements, inform interventions, and provide a basis for evaluating changes in communication practices. This qualitative study provides a foundation for the design and pilot testing of such a patient reporting system. PMID:23943884

Mothers' experience of caring for a child with early onset scoliosis: A qualitative descriptive study.

PubMed

Lauder, Bonnie; Sinclair, Peter M; Maguire, Jane

2018-04-01

This study aimed to identify and describe the experience of parents of children diagnosed with early onset scoliosis living in Australia. Chronic childhood disease has a major impact on health-related quality of life. Caring for a child with a chronic illness is well documented but the specific experiences of parents who care for children with early onset scoliosis, a rare but devastating illness, has not been explored. Numerous studies have described the interrelated psychological, financial, social, physical and logistical factors that impact the experience of the caregiver role with various diseases, but in the case of early onset scoliosis, limited studies have been conducted about the parental experience. A qualitative descriptive design was used. A snowball sampling technique assisted in the recruitment. Parents invited to the study included mothers, fathers and guardians. Data were collected through semistructured interviews and transcribed verbatim. Transcripts were analysed thematically. Data collection complied with the Consolidated criteria for reporting qualitative research guidelines. Twelve mothers of children with early onset scoliosis were interviewed, as only mothers consented to participate. Four major themes emerged: emotional rollercoaster ride, a lack of resources, money talks and pervasive burden. Factors that impacted on the participants' ability to confront, manage and endure caring for a child with early onset scoliosis emerged from the data. The findings suggest there are multiple factors that influence the experience of mothers' caring for a child with early onset scoliosis. The recognition and appropriate management of these factors by healthcare professionals have the potential to improve the quality of life of parents who care for a child with early onset scoliosis. Healthcare professionals have first-line contact with parents of children with early onset scoliosis and are well placed to provide parents with evidence-based education and increased support. © 2018 John Wiley & Sons Ltd.

Community pharmacists' experiences in mental illness and addictions care: a qualitative study.

PubMed

Murphy, Andrea L; Phelan, Heather; Haslam, Scott; Martin-Misener, Ruth; Kutcher, Stan P; Gardner, David M

2016-01-28

Community pharmacists are accessible health care professionals who encounter people with lived experience of mental illness and addictions in daily practice. Although some existing research supports that community pharmacists' interventions result in improved patient mental health outcomes, gaps in knowledge regarding the pharmacists' experiences with service provision to this population remain. Improving knowledge regarding the pharmacists' experiences with mental illness and addictions service provision can facilitate a better understanding of their perspectives and be used to inform the development and implementation of interventions delivered by community pharmacists for people with lived experience of mental illness and addictions in communities. We conducted a qualitative study using a directed content analysis and the Theoretical Domains Framework as part of our underlying theory of behaviour change and our analytic framework for theme development. The Theoretical Domains Framework facilitates understanding of behaviours of health care professionals and implementation challenges and opportunities for interventions in health care. Thematic analysis co-occurred throughout the process of the directed content analysis. We recruited community pharmacists, with experience dispensing psychotropics, at a minimum, through multiple mechanisms (e.g., professional associations) in a convenience sampling approach. Potential participants were offered the option of focus groups or interviews. Data were collected from one focus group and two interviews involving six pharmacists. Theoretical Domains Framework coding was primarily weighted in two domains: social/professional role and identity and environmental context and resources. We identified five main themes in the experiences of pharmacists in mental illness and addictions care: competing interests, demands, and time; relationships, rapport, and trust; stigma; collaboration and triage; and role expectations and clarity. Pharmacists are not practicing to their full scope of practice in mental illness and addictions care for several reasons including limitations within the work environment and lack of structures and processes in place to be fully engaged as health care professionals. More research and policy work are needed to examine better integration of pharmacists as members of the mental health care team in communities.

Who wants to work with older people? Swedish student nurses' willingness to work in elderly care--a questionnaire study.

PubMed

Carlson, Elisabeth; Idvall, Ewa

2015-07-01

The aging population is a globally recognized challenge for the health care service. The growing number of older people will probably lead to increased demands for nurses working in elderly care. Clinical practice has been shown to have an impact on how student nurses perceive a particular field of nursing. To compare perceptions of the clinical learning environment in nursing homes among students considering a career in aged care or not, and to examine the difference in age, gender and previous working experience as health care assistants in elderly care between the two groups. This was a cross-sectional study using the Swedish version of the Clinical Learning Environment and Nurse Teacher evaluation scale. Consecutive sampling was performed over three semesters from September 2011 to December 2012. The survey was conducted with 183 student nurses. Mann-Whitney U-test was used to examine differences in relation to two groups namely student nurses who did or did not consider to work in elderly care. A chi-square test of independence was performed to examine the difference in age, gender and previous working experience between the two groups. The analysis leaned towards an overall positive evaluation of the clinical learning environment with more positive values for students considering a career. There were no significant differences between younger students (18-23) and older students (24-50) regarding willingness to work in elderly care or not. Neither was any significant difference displayed between students, based on gender nor for previous work experience. Age, gender and previous work experiences as health care assistants did not impact on students' willingness to work in elderly care. Future studies need to acknowledge the complexity of why student nurses choose a particular pathway in nursing by longitudinal studies following cohorts of students during the course of the nursing programme. Copyright © 2015 Elsevier Ltd. All rights reserved.

Communication During Palliative Care and End of Life: Perceptions of Experienced Pediatric Oncology Nurses.

PubMed

Montgomery, Kathleen E; Sawin, Kathleen J; Hendricks-Ferguson, Verna

Communication between patients, families, and healthcare providers is a central component of end-of-life care. Nurse communication during palliative care (PC) and end of life (EOL) is a phenomenon with limited research. It is unclear how the level of nursing experience influences the perspectives of nurses communicating during EOL. The aim of this study is to describe the commonalities of experienced nurses' perceptions of communicating during PC and EOL and perceptions of barriers and facilitators to effective communication. This study was part of a larger multisite study that used a qualitative, empirical phenomenology design and represents focus group data gathered from pediatric oncology nurses with more than 5 years of experience or who were advanced practice nurses not involved in the direct evaluation of other nurses. Five core themes with corresponding themes and subthemes were identified. The core themes included (a) Evolution of PC/EOL, (b) Skill of Knowing, (c) Expanded Essence of Caring, (d) Experienced Nurse as Committed Advocate, and (e) Valuing Individual Response to Grief. Findings reflect how the concept of experience transcended the 5 core themes and captured how experience provided nurses the know-how to fulfill the roles of communication, caring, and advocacy for children and families. Enhancing nurse communication skills during EOL requires opportunities to gain experience coupled with clinical strategies, such as standardized curricula, simulation, competency-based orientation programs, mentorship, and peer support.

Quasi-experiments to establish causal effects of HIV care and treatment and to improve the cascade of care

PubMed Central

Bor, Jacob; Geldsetzer, Pascal; Venkataramani, Atheendar; Bärnighausen, Till

2015-01-01

Purpose of review Randomized, population-representative trials of clinical interventions are rare. Quasi-experiments have been used successfully to generate causal evidence on the cascade of HIV care in a broad range of real-world settings. Recent findings Quasi-experiments exploit exogenous, or quasi-random, variation occurring naturally in the world or because of an administrative rule or policy change to estimate causal effects. Well designed quasi-experiments have greater internal validity than typical observational research designs. At the same time, quasi-experiments may also have potential for greater external validity than experiments and can be implemented when randomized clinical trials are infeasible or unethical. Quasi-experimental studies have established the causal effects of HIV testing and initiation of antiretroviral therapy on health, economic outcomes and sexual behaviors, as well as indirect effects on other community members. Recent quasi-experiments have evaluated specific interventions to improve patient performance in the cascade of care, providing causal evidence to optimize clinical management of HIV. Summary Quasi-experiments have generated important data on the real-world impacts of HIV testing and treatment and on interventions to improve the cascade of care. With the growth in large-scale clinical and administrative data, quasi-experiments enable rigorous evaluation of policies implemented in real-world settings. PMID:26371463

Quasi-experiments to establish causal effects of HIV care and treatment and to improve the cascade of care.

PubMed

Bor, Jacob; Geldsetzer, Pascal; Venkataramani, Atheendar; Bärnighausen, Till

2015-11-01

Randomized, population-representative trials of clinical interventions are rare. Quasi-experiments have been used successfully to generate causal evidence on the cascade of HIV care in a broad range of real-world settings. Quasi-experiments exploit exogenous, or quasi-random, variation occurring naturally in the world or because of an administrative rule or policy change to estimate causal effects. Well designed quasi-experiments have greater internal validity than typical observational research designs. At the same time, quasi-experiments may also have potential for greater external validity than experiments and can be implemented when randomized clinical trials are infeasible or unethical. Quasi-experimental studies have established the causal effects of HIV testing and initiation of antiretroviral therapy on health, economic outcomes and sexual behaviors, as well as indirect effects on other community members. Recent quasi-experiments have evaluated specific interventions to improve patient performance in the cascade of care, providing causal evidence to optimize clinical management of HIV. Quasi-experiments have generated important data on the real-world impacts of HIV testing and treatment and on interventions to improve the cascade of care. With the growth in large-scale clinical and administrative data, quasi-experiments enable rigorous evaluation of policies implemented in real-world settings.

Roles and Educational Effects of Clinical Case Studies in Home Medical Care.

PubMed

Ohsawa, Tomoji; Shimazoe, Takao

2017-01-01

Due to the progression of aging in Japan, pharmacists need to participate in home medical care. To enable pharmacists with no previous experience to participate in home medical care of patients with various diseases in the home environment, it is necessary to adopt an approach of training them in advance. It is thought useful for such clinical training to include patient case studies, which may facilitate the training of pharmacists for home medical care through simulated experience. "The working group to create home clinical cases for education" was launched by a group of university faculty, who have educational knowledge, and trained pharmacists who work with the patients at home. The home care cases were compiled by the university faculty members and the home care practice pharmacists. Working pharmacists and students at pharmaceutical college studied the same case studies of home medical care, and their self-evaluations were compared. They showed that the students rated themselves higher than the pharmacists. One of the reasons was the systematic education of the case studies. The clinical case studies are a good educational tool to promote home care medicine in pharmacies and university pharmaceutical colleges.

A qualitative study exploring how Somali women exposed to female genital mutilation experience and perceive antenatal and intrapartum care in England.

PubMed

Moxey, Jordan M; Jones, Laura L

2016-01-07

To explore how Somali women exposed to female genital mutilation experience and perceive antenatal and intrapartum care in England. We explored women's perceptions of deinfibulation, caesarean section and vaginal delivery; their experiences of care during pregnancy and labour; and factors that affect ability to access these services, in order to make recommendations about future practice. A descriptive, exploratory qualitative study using face-to-face semistructured interviews. Interviews were audio-recorded, transcribed and data were analysed using a thematic approach. An interpreter was used when required (n=3). Participants recruited from 2 community centres in Birmingham, England. Convenience and snowball sample of 10 Somali women resident in Birmingham, who had accessed antenatal care services in England within the past 5 years. 3 core themes were interpreted: (1) Experiences of female genital mutilation during life, pregnancy and labour: Female genital mutilation had a significant physical and psychological impact, influencing decisions to undergo deinfibulation or caesarean section. Women delayed deinfibulation until labour to avoid undergoing multiple operations if an episiotomy was anticipated. (2) Experience of care from midwives: Awareness of female genital mutilation from midwives led to open communication and stronger relationships with women, resulting in more positive experiences. (3) Adaptation to English life: Good language skills and social support networks enabled women to access these services, while unfavourable social factors (eg, inability to drive) impeded. Female genital mutilation impacts Somali women's experiences of antenatal and intrapartum care. This study suggests that midwives should routinely ask Somali women about female genital mutilation to encourage open communication and facilitate more positive experiences. As antenatal deinfibulation is unpopular, we should consider developing strategies to promote deinfibulation to non-pregnant women, to align with current guidelines. Women with unfavourable social factors may require additional support to improve access to English antenatal care services. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Experience of hypertensive patients with self-management of health care.

PubMed

Balduino, Anice de Fátima Ahmad; Mantovani, Maria de Fátima; Lacerda, Maria Ribeiro; Marin, Maria José Sanches; Wal, Marilene Loewen

2016-11-01

The aim of this study was to interpret how hypertensive patients experience health care self-management. Hypertension is one of the most prevalent chronic diseases worldwide. The involvement of individuals in the management of their health care to treat this disease is fundamental, with aid and advice from healthcare professionals, especially nurses, so that hypertensive patients can effectively self-manage their health care. Qualitative study. Hypertensive patients were recruited using theoretical sampling. The study sample consisted of 28 hypertensive patients aged 18-59 years who were registered in the e-Health programme of the Ministry of Health. Data were collected and analyzed between September 2012-October 2014 using a semi-structured interview based on the methodological framework of the constructivist grounded theory. The participants' statements depicted an outline of their experience with the disease: the beginning of the illness; understanding the disease process; incorporating behaviour for self-management of the disease; experiencing attitudes and actions in the control and treatment of the disease; and being treated in the public healthcare system. A central phenomenon emerged, namely hypertensive patients' experience of self-management of health care. This phenomenon has paths, actions and interactions. When patients discover that they have the disease and become aware of the disease process, they assume the identity of being hypertensive and become proactive in their health care and in living with their families and in communities. © 2016 John Wiley & Sons Ltd.

A meta-ethnography of the acculturation and socialization experiences of migrant care workers.

PubMed

Ho, Ken H M; Chiang, Vico C L

2015-02-01

To report a meta-ethnography of qualitative research studies exploring the acculturation and socialization experiences of migrant care workers. Migrant care workers are increasingly participating in health and social care in developed countries. There is a need to understand this increasingly socioculturally diversified workforce. A comprehensive search through 12 databases and a manual search of journals related to transculture for studies on socialization and acculturation experiences (published 1993-2013) was completed. The inclusion criteria were peer-reviewed studies on the acculturation or socialization experiences of migrant care workers published in English in any country, using a qualitative or mixed-methods approach. This meta-ethnography employed the seven-phase Noblit and Hare method with reciprocal translation, refutational synthesis and lines-of-argument to synthesize qualitative studies. Three main themes were identified: (a) schema for the migration dream: optimism; (b) the reality of the migration dream: so close, yet so far; and (c) resilience: from chaos to order. A general framework of motivated psychosocial and behavioural adaptation was proposed. This meta-ethnography also revealed the vulnerabilities of migrant nurses in the process of acculturation and socialization. The general framework of behavioural and psychosocial adaptation revealed factors that impede and facilitate behavioural and psychosocial changes. Strategies to enrich external and internal resources should be targeted at encouraging multiculturalism and at improving the psychosocial resources of migrant care workers. It is suggested that research investigating the prominence of nursing vulnerabilities be conducted. © 2014 John Wiley & Sons Ltd.

Providing Quality Early Care and Education to Young Children Who Experience Maltreatment: A Review of the Literature

ERIC Educational Resources Information Center

Dinehart, Laura H.; Katz, Lynne F.; Manfra, Louis; Ullery, Mary Anne

2013-01-01

The current paper highlights the few studies that examine the role of early care and education on the developmental and early academic outcomes of children who experience maltreatment. First, we argue that children who experience maltreatment are at significant risk for poor developmental outcomes as a result of the chronic exposure to stress that…

Living at the farm, innovative nursing home care for people with dementia - study protocol of an observational longitudinal study.

PubMed

de Boer, B; Hamers, J P H; Beerens, H C; Zwakhalen, S M G; Tan, F E S; Verbeek, H

2015-11-02

In nursing home care, new care environments directed towards small-scale and homelike environments are developing. The green care farm, which provides 24-h nursing home care for people with dementia, is one such new care environment. Knowledge is needed on the relation between environmental features of green care farms such as nature, domesticity and offering care in small groups and the influence on the daily lives of residents. The aim of this study is to explore (1) the daily lives of residents, (2) the quality of care and (3) the experiences of caregivers on green care farms compared with other nursing home care environments. An observational longitudinal study including a baseline and a six-month follow-up measurement is carried out. Four types of nursing home care environments are included: (1) large scale nursing home ward, (2) small scale living facility on the terrain of a larger nursing home (3) stand-alone small scale living facility and (4) green care farm. Quality of care is examined through structure, process and outcome indicators. The primary outcome measure is the daily life of residents, assessed by ecological momentary assessments. Aspects of daily life include (1) activity (activity performed by the resident, the engagement in this activity and the degree of physical effort); (2) physical environment (the location of the resident and the interaction with the physical environment); (3) social environment (the level and type of social interaction, and with whom this social interaction took place) and (4) psychological well-being (mood and agitation). In addition, social engagement, quality of life, behavioral symptoms and agitation are evaluated through questionnaires. Furthermore, demographics, cognitive impairment, functional dependence and the severity of dementia are assessed. Semi-structured interviews are performed with caregivers regarding their experiences with the different nursing home care environments. This is the first study investigating green care farms providing 24-h nursing home care for people with dementia. The study provides valuable insight into the daily lives of residents, the quality of care, and the experiences of caregivers at green care farms in comparison with other nursing home care environments including small-scale care environments and large scale nursing home wards.

'Death is difficult in any language': A qualitative study of palliative care professionals' experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds.

PubMed

Green, Anna; Jerzmanowska, Natalia; Green, Marguerite; Lobb, Elizabeth A

2018-05-01

Ethnic minority patients have unique challenges in accessing health services. These include language difficulties, unfamiliarity with the health system, lower rates of cancer screening and survival, higher rates of reported side effects from cancer treatment and poorer quality of life. Little is known about this patient group when transitioning to palliative care. To elicit the experiences of palliative care health professionals when providing care for patients from culturally and linguistically diverse backgrounds which differ from mainstream Australian language and culture. An emergent qualitative design, informed by theoretical and procedural direction from grounded theory research. Four focus groups held with palliative care staff ( n = 28) in a single specialist palliative care service in Australia. The following themes emerged: (1) determining the rules of engagement around discussion of diagnosis and prognosis, (2) navigating the challenge of language to patient understanding, (3) understanding migration experiences to establish trust, (4) maintaining the balance between patient safety and comfort care, (5) providing a good death experience through accommodation of beliefs, and (6) navigating the important role of family members while privileging patient preferences. Underlying provider perceptions of caring for patients was that death is difficult in any language. Care was conceptualised as considering cultural and linguistic backgrounds within individualistic care. Understanding the migration experience and building trust were key elements of this individualised approach. Acknowledgement of the key role played by families in patient care and safety are strategies to minimise barriers and understand the concerns of this patient group.

Using photovoice to explore patient perceptions of patient-centered care in the Veterans Affairs health care system

PubMed Central

Balbale, Salva Najib; Morris, Megan A.; LaVela, Sherri L.

2015-01-01

Background Accounting for patient views and context is essential in evaluating and improving patient-centered care initiatives, yet few studies have examined the patient perspective. In the Veterans Affairs (VA) Health Care System, several VA facilities have transitioned from traditionally disease- or problem-based care to patient-centered care. We used photovoice to explore perceptions and experiences related to patient-centered care among Veterans receiving care in VA facilities that have implemented patient-centered care initiatives. Design Participants were provided prompts to facilitate their photography, and were asked to capture salient features in their environment that may describe their experiences and perceptions related to patient-centered care. Follow-up interviews were conducted with each participant to learn more about their photographs and intended meanings. Participant demographic data were also collected. Results Twenty-two Veteran patients (n=22) across two VA sites participated in the photovoice protocol. Participants defined patient-centered care broadly as caring for a person as a whole while accommodating for individual needs and concerns. Participant-generated photography and interview data revealed various contextual factors influencing patient-centered care perceptions, including patient-provider communication and relationships, physical and social environments of care, and accessibility of care. Conclusions This study contributes to the growing knowledge base around patient views and preferences regarding their care, care quality, and environments of care. Factors that shaped patient-centered care perceptions and the patient experience included communication with providers and staff, décor and signage, accessibility and transportation, programs and services offered, and informational resources. Our findings may be integrated into system redesign innovations and care design strategies that embody what is most meaningful to patients. PMID:24452963

Using photovoice to explore patient perceptions of patient-centered care in the Veterans Affairs Health Care System.

PubMed

Balbale, Salva Najib; Morris, Megan A; LaVela, Sherri L

2014-01-01

Accounting for patient views and context is essential in evaluating and improving patient-centered care initiatives, yet few studies have examined the patient perspective. In the Veterans Affairs (VA) Health Care System, several VA facilities have transitioned from traditionally disease- or problem-based care to patient-centered care. We used photovoice to explore perceptions and experiences related to patient-centered care among Veterans receiving care in VA facilities that have implemented patient-centered care initiatives. Participants were provided prompts to facilitate their photography, and were asked to capture salient features in their environment that may describe their experiences and perceptions related to patient-centered care. Follow-up interviews were conducted with each participant to learn more about their photographs and intended meanings. Participant demographic data were also collected. Twenty-two Veteran patients (n = 22) across two VA sites participated in the photovoice protocol. Participants defined patient-centered care broadly as caring for a person as a whole while accommodating for individual needs and concerns. Participant-generated photography and interview data revealed various contextual factors influencing patient-centered care perceptions, including patient-provider communication and relationships, physical and social environments of care, and accessibility of care. This study contributes to the growing knowledge base around patient views and preferences regarding their care, care quality, and environments of care. Factors that shaped patient-centered care perceptions and the patient experience included communication with providers and staff, décor and signage, accessibility and transportation, programs and services offered, and informational resources. Our findings may be integrated into system redesign innovations and care design strategies that embody what is most meaningful to patients.

Cancer Care Experiences and the Use of Complementary and Alternative Medicine at End of Life in Nova Scotia’s Black Communities

PubMed Central

Maddalena, Victor J.; Bernard, Wanda Thomas; Etowa, Josephine; Murdoch, Sharon Davis; Smith, Donna; Jarvis, Phyllis Marsh

2016-01-01

Purpose This qualitative study examines the meanings that African Canadians living in Nova Scotia, Canada, ascribe to their experiences with cancer, family caregiving, and their use of complementary and alternative medicine (CAM) at end of life. Design Case study methodology using in-depth interviews were used to examine the experiences of caregivers of decedents who died from cancer in three families. Findings For many African Canadians end of life is characterized by care provided by family and friends in the home setting, community involvement, a focus on spirituality, and an avoidance of institutionalized health services. Caregivers and their families experience multiple challenges (and multiple demands). There is evidence to suggest that the use of CAM and home remedies at end of life are common. Discussion The delivery of palliative care to African Canadian families should consider and support their preference to provide end-of-life care in the home setting. PMID:20220031

Invisible realities: Caring for older Moroccan migrants with dementia in Belgium.

PubMed

Berdai Chaouni, Saloua; De Donder, Liesbeth

2018-01-01

The number of older Moroccan migrants reaching the age of high risk for dementia is increasing in Belgium. Yet no study has been performed to explore how Moroccan families facing dementia experience and manage the condition. The study employed a qualitative design using semi-structured interviews with 12 informal and 13 formal caregivers to answer this research question. Findings indicate that the experience of dementia includes several invisible realities that challenge the informal and formal caregivers: (1) the invisibility of dementia as a condition; (2) the invisible subtleties of the informal care execution; (3) the invisibility and inaccessibility of care services as explanation for these family's non-use of available services; and (4) the overlooking of culture, migration and religion as invisible influencers of the overall dementia experience. A better understanding of these hidden realities of migrant older people with dementia and their caregivers could lead to interventions to provide effective and tailored person-centred care that is sensitive to the individual's life experiences, culture and religious background.

When East meets West: intensive care unit experiences among first-generation Chinese American parents.

PubMed

Lee, Shih-Yu; Weiss, Sandra J

2009-01-01

To explore the experiences of first-generation Chinese American parents while their infants are cared for in intensive care units (ICUs). Because the study focus was on understanding the experiences of parents, a phenomenological approach was used, with open-ended questions that encouraged participants to describe events they perceived to be important. The data analysis procedure suggested by van Manen was used for the qualitative data analysis. A convenience sample of 25 first-generation Chinese American families, with infants hospitalized in the intensive care units of three teaching hospitals in the San Francisco area. Seven themes were identified: perceived incompetence, self-blame, blame from others, filial piety, lack of support in the US, communication issues, and cultural differences. Both fathers and mothers experienced stress related to all identified themes. Findings suggest the need for more resources to educate and support families as well as culturally competent care within pediatric ICUs. Further study is critical to understand how the Chinese American's personal and family characteristics may influence stress perceptions when coping with their children's hospitalization. This study can help healthcare providers to understand Chinese American parents' perceptions while their infants are hospitalized in the ICU, which can enhance cultural competence care services.

The role of hospitals in bridging the care continuum: a systematic review of coordination of care and follow-up for adults with chronic conditions.

PubMed

De Regge, Melissa; De Pourcq, Kaat; Meijboom, Bert; Trybou, Jeroen; Mortier, Eric; Eeckloo, Kristof

2017-08-09

Multiple studies have investigated the outcome of integrated care programs for chronically ill patients. However, few studies have addressed the specific role hospitals can play in the downstream collaboration for chronic disease management. Our objective here is to provide a comprehensive overview of the role of the hospitals by synthesizing the advantages and disadvantages of hospital interference in the chronic discourse for chronically ill patients found in published empirical studies. Systematic literature review. Two reviewers independently investigated relevant studies using a standardized search strategy. Thirty-two articles were included in the systematic review. Overall, the quality of the included studies is high. Four important themes were identified: the impact of transitional care interventions initiated from the hospital's side, the role of specialized care settings, the comparison of inpatient and outpatient care, and the effect of chronic care coordination on the experience of patients. Our results show that hospitals can play an important role in transitional care interventions and the coordination of chronic care with better outcomes for the patients by taking a leading role in integrated care programs. Above that, the patient experiences are positively influenced by the coordinating role of a specialist. Specialized care settings, as components of the hospital, facilitate the coordination of the care processes. In the future, specialized care centers and primary care could play a more extensive role in care for chronic patients by collaborating.

The lived experience of parents of children admitted to the pediatric intensive care unit in Lebanon.

PubMed

Majdalani, Marianne N; Doumit, Myrna A A; Rahi, Amal C

2014-02-01

Family caregivers have a significant responsibility in the care of their child in the Pediatric Intensive Care Unit (PICU). Parents staying with their child in the PICU have particular needs that should be acknowledged and responded to by clinicians. Several studies have been conducted in the USA and Europe to try to understand the experience of family caregivers of children admitted to the Pediatric Intensive Care Unit. There are no such studies in Lebanon or the Middle East where the culture and support systems differ from other countries. To understand the lived experience of Lebanese parents of children admitted to the PICU in a tertiary hospital in Beirut. Phenomenological study. The study followed purposeful sampling in which 10 parents (mother or father) of children admitted to PICU were interviewed. Data were analyzed following the hermeneutical process as described by Diekelmann and Ironside (1998). A constitutive pattern "Journey into the unknown" which constitutes an overarching theme and four major themes with subthemes emerged from the data. These were: We are human beings with dignity "; "looking for a healthier environment"; Dependence on God and "The need to be in the loop" reveal the parents' journey into the unknown. This qualitative study adds to the knowledge that would help health care workers understand the experience of Lebanese parents with a child in PICU and to highlight the significance of this experience to them. The findings could be used to inform the development of a PICU parental satisfaction instrument for the sample group. Copyright © 2013 Elsevier Ltd. All rights reserved.

Nursing staff's experiences of working in an evidence-based designed ICU patient room-An interview study.

PubMed

Sundberg, Fredrika; Olausson, Sepideh; Fridh, Isabell; Lindahl, Berit

2017-12-01

It has been known for centuries that environment in healthcare has an impact, but despite this, environment has been overshadowed by technological and medical progress, especially in intensive care. Evidence-based design is a concept concerning integrating knowledge from various research disciplines and its application to healing environments. The aim was to explore the experiences of nursing staff of working in an evidence-based designed ICU patient room. Interviews were carried out with eight critical care nurses and five assistant nurses and then subjected to qualitative content analysis. The experience of working in an evidence-based designed intensive care unit patient room was that the room stimulates alertness and promotes wellbeing in the nursing staff, fostering their caring activities but also that the interior design of the medical and technical equipment challenges nursing actions. The room explored in this study had been rebuilt in order to create and evaluate a healing environment. This study showed that the new environment had a great impact on the caring staffs' wellbeing and their caring behaviour. At a time when turnover in nurses is high and sick leave is increasing, these findings show the importance of interior design ofintensive care units. Copyright © 2017 Elsevier Ltd. All rights reserved.

Tailored expectant management in couples with unexplained infertility does not influence their experiences with the quality of fertility care.

PubMed

Kersten, F A M; Hermens, R P G M; Braat, D D M; Tepe, E; Sluijmer, A; Kuchenbecker, W K; Van den Boogaard, N; Mol, B W J; Goddijn, M; Nelen, W L D M

2016-01-01

Do couples who were eligible for tailored expectant management (TEM) and did not start treatment within 6 months after the fertility work-up, have different experiences with the quality of care than couples that were also eligible for TEM but started treatment right after the fertility work-up? Tailored expectant management of at least 6 months in couples with unexplained infertility is not associated with the experiences with quality of care or trust in their physician. In couples with unexplained infertility and a good prognosis of natural conception within 1 year, expectant management for 6-12 months does not compromise ongoing birth rates and is equally as effective as starting medically assisted reproduction immediately. Therefore, TEM is recommended by various international clinical guidelines. Implementation of TEM is still not optimal because of existing barriers on both patient and professional level. An important barrier is the hesitance of professionals to counsel their patients for TEM because they fear that patients will be dissatisfied with care. However, if and how adherence to TEM actually affects the couples' experience with care is unknown. Experiences with the quality care can be measured by evaluating the patient-centredness of care and the patients' trust in their physician. This is a retrospective cross-sectional study. A survey with written questionnaires was performed among all couples who participated in the retrospective audit of guideline adherence on TEM in 25 Dutch clinics. Couples were eligible to participate if they were diagnosed with unexplained infertility and had a good prognosis (>30%) of natural conception within 1 year based on the Hunault prediction model. We used patient's questionnaires to collect data on the couples' experience with the quality of care and possible confounders for their experiences other than having undergone TEM or not. Multilevel regression analyses were performed to investigate case-mix adjusted association of TEM with the patient-centredness of care (PCQ-Infertility) and the patients' trust in their physician (Wake Forest Trust Scale). Couples who adhered to TEM experienced the quality of care on the same level as couples who were exposed to early treatment, i.e. started fertility treatment within 6 months after fertility work-up. There were no associations between adherence to TEM and the patient-centredness of care or the patients' trust in their physician. Because this study is retrospective, recall bias might occur. Furthermore, we were unable to measure the difference in experience with care over time. Therefore, our results have to be interpreted carefully. Prospective research on couples undergoing TEM have to be performed to provide more detailed insight in the patients' experiences with the decision making process and subsequently the expectant period. Tackling the barriers surrounding TEM, i.e. better counselling and more patient information material, could further improve patient experiences with the quality of care for couples who are advised TEM. Supported by Netherlands Organisation for Health Research and Development (ZonMW). ZonMW had no role in designing the study, data collection, analysis and interpretation of data or writing of the report. Competing interests: none. www.trialregister.nl NTR3405. © The Author 2015. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Professional Experiences of International Medical Graduates Practicing Primary Care in the United States

PubMed Central

Nunez-Smith, Marcella; Bernheim, Susannah May; Berg, David; Gozu, Aysegul; Curry, Leslie Ann

2010-01-01

Background International medical graduates (IMGs) comprise approximately 25% of the US physician workforce, with significant representation in primary care and care of vulnerable populations. Despite the central role of IMGs in the US healthcare system, understanding of their professional experiences is limited. Objective To characterize the professional experiences of non-US born IMGs from limited-resource nations practicing primary care in the US. Design Qualitative study based on in-depth in-person interviews. Participants Purposeful sample of IMGs (n = 25) diverse in country of origin, length of practice in the US, specialty (internal medicine, family medicine and pediatrics), age and gender. Participants were currently practicing primary care physicians in New York, New Jersey or Connecticut. Approach A standardized interview guide was used to explore professional experiences of IMGs. Key Results Four recurrent and unifying themes characterize these experiences: 1) IMGs experience both overt and subtle forms of workplace bias and discrimination; 2) IMGs recognize professional limitations as part of “the deal”; 3) IMGs describe challenges in the transition to the culture and practice of medicine in the US; 4) IMGs bring unique skills and advantages to the workplace. Conclusions Our data reveal that IMGs face workplace challenges throughout their careers. Despite diversity in professional background and demographic characteristics, IMGs in our study reported common experiences in the transition to and practice of medicine in the US. Findings suggest that both workforce and workplace interventions are needed to enable IMG physicians to sustain their essential and growing role in the US healthcare system. Finally, commonalities with experiences of other minority groups within the US healthcare system suggest that optimizing IMGs’ experiences may also improve the experiences of an increasingly diverse healthcare workforce. PMID:20502974

Professional experiences of international medical graduates practicing primary care in the United States.

PubMed

Chen, Peggy Guey-Chi; Nunez-Smith, Marcella; Bernheim, Susannah May; Berg, David; Gozu, Aysegul; Curry, Leslie Ann

2010-09-01

International medical graduates (IMGs) comprise approximately 25% of the US physician workforce, with significant representation in primary care and care of vulnerable populations. Despite the central role of IMGs in the US healthcare system, understanding of their professional experiences is limited. To characterize the professional experiences of non-US born IMGs from limited-resource nations practicing primary care in the US. Qualitative study based on in-depth in-person interviews. Purposeful sample of IMGs (n = 25) diverse in country of origin, length of practice in the US, specialty (internal medicine, family medicine and pediatrics), age and gender. Participants were currently practicing primary care physicians in New York, New Jersey or Connecticut. A standardized interview guide was used to explore professional experiences of IMGs. Four recurrent and unifying themes characterize these experiences: 1) IMGs experience both overt and subtle forms of workplace bias and discrimination; 2) IMGs recognize professional limitations as part of "the deal"; 3) IMGs describe challenges in the transition to the culture and practice of medicine in the US; 4) IMGs bring unique skills and advantages to the workplace. Our data reveal that IMGs face workplace challenges throughout their careers. Despite diversity in professional background and demographic characteristics, IMGs in our study reported common experiences in the transition to and practice of medicine in the US. Findings suggest that both workforce and workplace interventions are needed to enable IMG physicians to sustain their essential and growing role in the US healthcare system. Finally, commonalities with experiences of other minority groups within the US healthcare system suggest that optimizing IMGs' experiences may also improve the experiences of an increasingly diverse healthcare workforce.

Women’s Experiences of Group Prenatal Care

PubMed Central

Novick, Gina; Sadler, Lois S.; Kennedy, Holly Powell; Cohen, Sally S.; Groce, Nora E.; Knafl, Kathleen A.

2011-01-01

Group prenatal care (GPNC) is an innovative alternative to individual prenatal care. In this longitudinal study we used ethnographic methods to explore African American and Hispanic women’s experiences of receiving GPNC in two urban clinics. Methods included individual, in-depth, semistructured interviews of women and group leaders in GPNC, participant observation of GPNC sessions, and medical record review. GPNC offered positive experiences and met many of the women’s expressed preferences regarding prenatal care. Six themes were identified, which represented separate aspects of women’s experiences: investment, collaborative venture, a social gathering, relationships with boundaries, learning in the group, and changing self. Taken together, the themes conveyed the overall experience of GPNC. Women were especially enthusiastic about learning in groups, about their relationships with group leaders, and about having their pregnancy-related changes and fears normalized. There were also important boundaries on relationships between participants, and some women wished for greater privacy during physical examinations. PMID:20693516

The Burden of Care: Mothers’ Experiences of Children with Congenital Heart Disease

PubMed Central

Sabzevari, Sakinne; Nematollahi, Monirsadat; Mirzaei, Tayebeh; Ravari, Ali

2016-01-01

ABSTRACT Background: Mothers play a key role in caring for their sick children. Their experiences of care were influenced by culture, rules, and the system of health and care services. There are few studies on maternal care of children with congenital heart disease. Also, each of them has studied a particular aspect of care. The present research aimed to understand care experiences of mothers of children with congenital heart disease. Methods: A conventional content analysis was used to obtain rich data. The goal of content analysis is “to provide knowledge and deeper understanding of the phenomenon under the study”. The study was conducted in Kerman, Iran in 2014, on mothers of children with CHD. The purposive sampling technique was used to select the participants. Participants were 14 mothers of children with CHD and one father and one nurse of open heart surgery unit, from two hospitals affiliated with Kerman University of Medical Sciences. Eighteen semi-structured interviews were constructed. Data were analyzed using conventional content analysis. MAXQDA 2007 software (VERBI GmbH, Berlin, Germany) was used to classify and manage the coding. Constant comparative method was done for data analysis. The reliability and validity of the findings, including the credibility, confirm ability, dependability, and transferability, were assessed. Results: According to the content analysis, the main theme was the catastrophic burden of child care on mothers that included three categories: 1) the tension resulting from the disease, 2) involvement with internal thoughts, and 3) difficulties of care process Conclusion: The results of this study may help health care professionals to provide supportive and educational packages to the patients, mothers and Family members until improving the management of patient’s care. PMID:27713900

Lived experience of women with gestational diabetes mellitus living in China: a qualitative interview study.

PubMed

Ge, Li; Wikby, Kerstin; Rask, Mikael

2017-11-28

To explore the lived experience of women with gestational diabetes mellitus (GDM) living in China in order to add knowledge about how the Chinese women suffer from GDM. A qualitative interpretive interview study. Data were collected with a snowball sampling technique. Phenomenological hermeneutics was used as the analysis method based on Ricoeur's phenomenological hermeneutical interpretation theory. The study was performed at the participants' work places, or at the obstetric clinics or wards at two provincial hospitals and one municipal hospital in the southeast of China. Inclusion criteria were age ≥18 years, diagnosis of GDM without other pregnancy complications, in 34th gestational weeks-postpartum 4th weeks and speaking Mandarin Chinese without speech impediment. 62 women, who met the inclusion criteria, took part in the study. The lived experience of the women with GDM living in China was formulated into a main theme: 'longing for caring care'. The main theme was derived from four themes: being stricken by GDM, wishing to receive caring GDM care, being left alone to struggle with GDM and trying to adjust and adapt to life with GDM. The eagerness for caring care in China was highlighted. The lack of caring care could be one of the possible reasons why the professional-patient relations were deteriorating in China. It could be useful for health providers and health policymakers to receive education and training about caring care. Using the health metaphor of balance and 'patient participation' and 'patient-centred' approaches may benefit women with GDM and thus improve the quality of care in China. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

The challenges of caring in a technological environment: critical care nurses' experiences.

PubMed

McGrath, Mary

2008-04-01

This paper presents and discusses the findings from a phenomenological study which illuminated the lived experiences of experienced critical care nurses caring within a technological environment. While nursing practice is interwoven with technology, much of the literature in this area is speculative. Moreover, there is a debate as to whether and how 'high tech' and 'high touch' are reconcilable; this orientation is referred to as the optimism vs. pessimism debate. On a personal level, the motivation for this study came from the author's 13 years' experience in the critical care area. Following ethical approval, 10 experienced nurses from two cardiothoracic critical care units in Ireland participated in the study. A Heideggerian phenomenological methodology was used. Data collection consisted of unstructured interviews. A method of data analysis described by Walters was used. The findings provide research-based evidence to illuminate further the optimistic/pessimistic debate on technology in nursing. While the study demonstrates that the debate is far from resolved, it reveals a new finding: life-saving technology that supports the lives of critically ill patients can bring experienced nurses very close to their patients/families. The three main themes that emerged: 'alien environment', 'pulling together' and 'sharing the journey' were linked by a common thread of caring. Experienced critical care nurses are able to transcend the obtrusive nature of technology to deliver expert caring to their patients. However, the journey to proficiency in technology is very demanding and novice nurses have difficulty in caring with technology. Relevance to clinical practice. It is recommended that more emphasis be placed on supporting, assisting and educating inexperienced nurses in the critical care area and that the use of technology in nursing be given serious consideration.

Recovery, work-life balance and work experiences important to self-rated health: A questionnaire study on salutogenic work factors among Swedish primary health care employees

PubMed Central

Ejlertsson, Lina; Heijbel, Bodil; Ejlertsson, Göran; Andersson, Ingemar

2018-01-01

BACKGROUND: There is a lack of information on positive work factors among health care workers. OBJECTIVE: To explore salutogenic work-related factors among primary health care employees. METHOD: Questionnaire to all employees (n = 599) from different professions in public and private primary health care centers in one health care district in Sweden. The questionnaire, which had a salutogenic perspective, included information on self-rated health from the previously validated SHIS (Salutogenic Health Indicator Scale), psychosocial work environment and experiences, recovery, leadership, social climate, reflection and work-life balance. RESULTS: The response rate was 84%. A multivariable linear regression model, with SHIS as the dependent variable, showed three significant predictors. Recovery had the highest relationship to SHIS (β= 0.34), followed by experience of work-life balance (β= 0.25) and work experiences (β= 0.20). Increased experience of recovery during working hours related to higher self-rated health independent of recovery outside work. CONCLUSION: Individual experiences of work, work-life balance and, most importantly, recovery seem to be essential areas for health promotion. Recovery outside the workplace has been studied previously, but since recovery during work was shown to be of great importance in relation to higher self-rated health, more research is needed to explore different recovery strategies in the workplace. PMID:29439377

Service quality and patient experiences of ambulatory care in a specialized clinic vs. a general hospital.

PubMed

De Regge, Melissa; De Groote, Hélène; Trybou, Jeroen; Gemmel, Paul; Brugada, Pedro

2017-04-01

Health care organizations are constantly looking for ways to establish a differential advantage to attract customers. To this end, service quality has become an important differentiator in the strategy of health care organizations. In this study, we compared the service quality and patient experience in an ambulatory care setting of a physician-owned specialized facility with that of a general hospital. A comparative case study with a mixed method design was employed. Data were gathered through a survey on health service quality and patient experience, completed with observations, walkthroughs, and photographic material. Service quality and patient experiences are high in both the investigated health care facilities. A significant distinction can be made between the two facilities in terms of interpersonal quality (p = 0.001) and environmental quality (P ≤ 0.001), in favor of the medical center. The difference in environmental quality is also indicated by the scores given by participants who had been in both facilities. Qualitative analysis showed higher administrative quality in the medical center. Environmental quality and patient experience can predict the interpersonal quality; for environmental quality, interpersonal quality and age are significant predictors. Service quality and patient experiences are high in both facilities. The medical center has higher service quality for interpersonal and environmental service quality and is more process-centered.

Recovery, work-life balance and work experiences important to self-rated health: A questionnaire study on salutogenic work factors among Swedish primary health care employees.

PubMed

Ejlertsson, Lina; Heijbel, Bodil; Ejlertsson, Göran; Andersson, Ingemar

2018-01-01

There is a lack of information on positive work factors among health care workers. To explore salutogenic work-related factors among primary health care employees. Questionnaire to all employees (n = 599) from different professions in public and private primary health care centers in one health care district in Sweden. The questionnaire, which had a salutogenic perspective, included information on self-rated health from the previously validated SHIS (Salutogenic Health Indicator Scale), psychosocial work environment and experiences, recovery, leadership, social climate, reflection and work-life balance. The response rate was 84%. A multivariable linear regression model, with SHIS as the dependent variable, showed three significant predictors. Recovery had the highest relationship to SHIS (β= 0.34), followed by experience of work-life balance (β= 0.25) and work experiences (β= 0.20). Increased experience of recovery during working hours related to higher self-rated health independent of recovery outside work. Individual experiences of work, work-life balance and, most importantly, recovery seem to be essential areas for health promotion. Recovery outside the workplace has been studied previously, but since recovery during work was shown to be of great importance in relation to higher self-rated health, more research is needed to explore different recovery strategies in the workplace.

Flow situations during everyday practice in a medical hospital ward. Results from a study based on experience sampling method.

PubMed

Bringsén, Asa; Ejlertsson, Göran; Andersson, Ingemar H

2011-02-02

Nursing is a constant balance between strain and stimulation and work and health research with a positive reference point has been recommended. A health-promoting circumstance for subjective experience is flow, which is a psychological state, when individuals concurrently experience happiness, motivation and cognitive efficiency. Flow situations can be identified through individuals' estimates of perceived challenge and skills. There is, to the best of our knowledge, no published study of flow among health care staff. The aim of this study was to identify flow-situations and study work-related activities and individual factors associated with flow situations, during everyday practice at a medical emergency ward in Sweden, in order to increase the knowledge on salutogenic health-promoting factors. The respondents consisted of 17 assistant nurses and 14 registered nurses, who randomly and repeatedly answered a small questionnaire, through an experience sampling method, during everyday nursing practice. The study resulted in 497 observations. Flow situations were defined as an exact match between a high challenge and skill estimation and logistic regression models were used to study different variables association to flow situations. The health care staff spent most of its working time in individual nursing care and administrative and communicative duties. The assistant nurses were more often occupied in individual nursing care, while the registered nurses were more involved in medical care and administrative and communicative duties. The study resulted in 11.5% observations of flow situations but the relative number of flow situations varied between none to 55% among the participants. Flow situations were positively related to medical care activities and individual cognitive resources. Taking a break was also positively associated with flow situations among the assistant nurses. The result showed opportunities for work-related interventions, with an adherent increase in flow situations, opportunity for experience of flow and work-related health among the nursing staff in general and among the assistant nurses in particular.

Activating people to address their health care needs: learning from people with lived experience of chronic illnesses.

PubMed

Stanhope, Victoria; Henwood, Benjamin F

2014-08-01

One of the primary goals of health care reform is improving the quality and reducing the costs of care for people with co-morbid mental health and physical health conditions. One strategy is to integrate primary and behavioral health care through care coordination and patient activation. This qualitative study using community based participatory research methods informs the development of integrated care by presenting the perspectives of those with lived experience of chronic illnesses and homelessness. Themes presented include the internal and external barriers to addressing health needs and the key role of peer support in overcoming these barriers.

Seeking maternal care at times of conflict: the case of Lebanon.

PubMed

Kabakian-Khasholian, Tamar; Shayboub, Rawan; El-Kak, Faysal

2013-01-01

Providing quality maternity care within the emergency care packages for internally displaced populations in war-affected areas is somewhat challenging, although very essential. In this retrospective study, we describe the experiences and health care seeking behaviors of 1,015 pregnant and postpartum women during the 2006 war in Lebanon. Women reported interruptions in regular maternity care and experienced more complications during this period. Availability of health services and experiences of complications were the most important determinants of health care seeking behaviors. Maternal health services should be a part of any comprehensive emergency responsiveness plan, catering to women's needs in war-affected areas.

A qualitative study exploring the value of a catheter passport.

PubMed

Jaeger, Melanie De; Fox, Fiona; Cooney, Geraldine; Robinson, Jacqueline

2017-08-10

Many patients leaving hospital with a catheter do not have sufficient information to self-care and can experience physical and psychological difficulties. This study aimed to explore how a patient-held catheter passport affects the experiences of patients leaving hospital with a urethral catheter, the hospital nurses who discharge them and the community nurses who provide ongoing care for them. Qualitative methods used included interviews, focus groups and questionnaires, and thematic analysis. Three major themes were reported-informing patients, informing nurses; improving catheter care, promoting self-management; and supporting transition. The catheter passport can bridge the existing information gap, improve care, promote self-care and help patients adjust to their catheter, especially if complemented by ongoing input from a nurse or other health professional.

The contribution of undergraduate palliative care education: does it influence the clinical patient's care?

PubMed

Centeno, Carlos; Rodríguez-Núñez, Alfredo

2015-12-01

The aim of this 2-year systematic review is to understand how learner assessment and curriculum evaluation of education in palliative care is being undertaken and to examine whether current undergraduate education influences the clinical patient's care. Almost half of the 30 studies reviewed used a qualitative approach to evaluate learning experiences. Only three of them were controlled studies and a further one was a cohort study.When students openly express themselves, they agree that there is 'something' deep as regards the core or the essence of medical practice or nursing. They feel that they become better professionals and better prepared for the patients, not only in terms of end of life care, but also as regards care, irrespective of the phase of the disease.The inclusion of palliative care in undergraduate education is a way of providing knowledge, skill, and competences about palliative care (especially communication) and also improving attitudes toward caring in advanced disease and at the end of life. Different methods of experiential learning, even brief experiences, which bring students into close contact with palliative care clinical cases or patients, are providing better results. From research studies, there is only indirect evidence that palliative care training at university leads to better clinical care of patients. In the future, long-term cohort or controlled studies might answer that question.

The patient's experience of temporary paralysis from spinal anaesthesia, a part of total knee replacement.

PubMed

Bager, Louise; Konradsen, Hanne; Dreyer, Pia Sander

2015-12-01

The aim of this study was to describe the meaning of being temporary paralysed from spinal anaesthesia when undergoing total knee replacement. Total knee arthroplasty is a common procedure, and regional anaesthesia is used as a method for anaesthetising the patient. The experience is highly individual in substance and duration, and it can extend far beyond care settings as intraoperative care and the postanaesthesia care unit that have been investigated so far. A qualitative phenomenological hermeneutic design was chosen to gain a deeper understanding of the experience of spinal anaesthesia, as a part of having a total knee replacement. Twelve patients were interviewed in March 2014 after undergoing an elective total knee arthroplasty under spinal anaesthesia. The interviews were analysed with a Ricoeur-inspired interpretation method. Three themes were derived from the interviews: 'anaesthesia--an unavoidable necessity', 'an unrecognisable and incomprehensible body' and 'the body returns--joy and agony'. The results reveal that trust in the health care personnel and knowledge of the course of events play a key role in the experience. The trust can be breached by unforeseen events, or if the patient's experiences were not taken into account. The ability of the health care personnel to be in contact, share relevant knowledge with- and compensate for the patient is crucial in the prevention of negative experiences. The results of this study contribute to insights and deeper knowledge that can enhance staff's ability to provide care for patients undergoing total knee arthroplasty in spinal anaesthesia. The results provide perspectives that argue for care in accordance to individual needs. © 2015 John Wiley & Sons Ltd.

Simulation experience enhances physical therapist student confidence in managing a patient in the critical care environment.

PubMed

Ohtake, Patricia J; Lazarus, Marcilene; Schillo, Rebecca; Rosen, Michael

2013-02-01

Rehabilitation of patients in critical care environments improves functional outcomes. This finding has led to increased implementation of intensive care unit (ICU) rehabilitation programs, including early mobility, and an associated increased demand for physical therapists practicing in ICUs. Unfortunately, many physical therapists report being inadequately prepared to work in this high-risk environment. Simulation provides focused, deliberate practice in safe, controlled learning environments and may be a method to initiate academic preparation of physical therapists for ICU practice. The purpose of this study was to examine the effect of participation in simulation-based management of a patient with critical illness in an ICU setting on levels of confidence and satisfaction in physical therapist students. A one-group, pretest-posttest, quasi-experimental design was used. Physical therapist students (N=43) participated in a critical care simulation experience requiring technical (assessing bed mobility and pulmonary status), behavioral (patient and interprofessional communication), and cognitive (recognizing a patient status change and initiating appropriate responses) skill performance. Student confidence and satisfaction were surveyed before and after the simulation experience. Students' confidence in their technical, behavioral, and cognitive skill performance increased from "somewhat confident" to "confident" following the critical care simulation experience. Student satisfaction was highly positive, with strong agreement the simulation experience was valuable, reinforced course content, and was a useful educational tool. Limitations of the study were the small sample from one university and a control group was not included. Incorporating a simulated, interprofessional critical care experience into a required clinical course improved physical therapist student confidence in technical, behavioral, and cognitive performance measures and was associated with high student satisfaction. Using simulation, students were introduced to the critical care environment, which may increase interest in working in this practice area.

Trauma patient discharge and care transition experiences: Identifying opportunities for quality improvement in trauma centres.

PubMed

Gotlib Conn, Lesley; Zwaiman, Ashley; DasGupta, Tracey; Hales, Brigette; Watamaniuk, Aaron; Nathens, Avery B

2018-01-01

Challenges delivering quality care are especially salient during hospital discharge and care transitions. Severely injured patients discharged from a trauma centre will go either home, to rehabilitation or another acute care hospital with complex management needs. This purpose of this study was to explore the experiences of trauma patients and families treated in a regional academic trauma centre to better understand and improve their discharge and care transition experiences. A qualitative study using inductive thematic analysis was conducted between March and October 2016. Telephone interviews were conducted with trauma patients and/or a family member after discharge from the trauma centre. Data collection and analysis were completed inductively and iteratively consistent with a qualitative approach. Twenty-four interviews included 19 patients and 7 family members. Participants' experiences drew attention to discharge and transfer processes that either (1) Fostered quality discharge or (2) Impeded quality discharge. Fostering quality discharge was ward staff preparation efforts; establishing effective care continuity; and, adequate emotional support. Impeding discharge quality was perceived pressure to leave the hospital; imposed transfer decisions; and, sub-optimal communication and coordination around discharge. Patient-provider communication was viewed to be driven by system, rather than patient need. Inter-facility information gaps raised concern about receiving facilities' ability to care for injured patients. The quality of trauma patient discharge and transition experiences is undermined by system- and ward-level processes that compete, rather than align, in producing high quality patient-centred discharge. Local improvement solutions focused on modifiable factors within the trauma centre include patient-oriented discharge education and patient navigation; however, these approaches alone may be insufficient to enhance patient experiences. Trauma patients encounter complex barriers to quality discharge that likely require a comprehensive, multimodal intervention. Copyright © 2017 Elsevier Ltd. All rights reserved.

The relationship between voice climate and patients’ experience of timely care in primary care clinics

PubMed Central

Nembhard, Ingrid M.; Yuan, Christina T.; Shabanova, Veronika; Cleary, Paul D.

2017-01-01

Background Aspects of the patient care experience, despite being central to quality care, are often problematic. In particular, patients frequently report problems with timeliness of care. As yet, research offers little insight on setting characteristics that contribute to patients’ experience of timely care. Purpose The aims of this study were to assess the relationship between organizational climate and patients’ reports of timely care in primary care clinics and to broadly examine the link between staff’s work environment and patient care experiences. We test hypotheses about the relationship between voice climate—staff feeling safe to speak up about issues—and reported timeliness of care, consistency in reported voice climate across professions, and how climate differences for various professions relate to timely care. Methodology We conducted a cross-sectional study of employees (n = 1,121) and patients (n = 8,164) affiliated with 37 clinics participating in a statewide reporting initiative. Employees were surveyed about clinics’ voice climate, and patients were surveyed about the timeliness of care. Hypotheses were tested using analysis of variance and generalized estimating equations. Findings Clinical and administrative staff (e.g., nurses and office assistants) reported clinics’ climates to be significantly less supportive of voice than did clinical leaders (e.g., physicians). The greater the difference in reported support for voice between professional groups, the less patients reported experiencing timely care in three respects: obtaining an appointment, seeing the doctor within 15 minutes of appointment time, and receiving test results. In clinics where staff reported climates supportive of voice, patients indicated receiving more timely care. Clinical leaders’ reports of voice climate had no relationship to reported timeliness of care. Practical Implications Our findings suggest the importance of clinics developing a strong climate for voice, particularly for clinical and administrative staff, to support better service quality for patients. PMID:24589927

International Female Students' Experiences of Navigating the Canadian Health Care System in a Small Town Setting

ERIC Educational Resources Information Center

Burgess, K.; McKenzie, W.; Fehr, F.

2016-01-01

This pilot study explored the international female (IF) students' (n = 17) lived experiences of health care accessibility while studying in a small town in Canada. Analysis guided by a phenomenological method resulted in three major themes--(1) after arriving to attend university, IF students experienced challenges in staying healthy, such as…

One- to Three-Year-Old Children's Experience of Subjective Wellbeing in Day Care

ERIC Educational Resources Information Center

Seland, Monica; Sandseter, Ellen Beate Hansen; Bratterud, Åse

2015-01-01

The aim of the study on which this paper is based was to explore in which situations and contexts Norwegian 1-3-year-olds experience subjective wellbeing in day care. The data in this study was collected through qualitative phenomenological observations of 18 children, and an inductive process of analysis was conducted. The results show that…

Parents' Experiences during Their Infant's Transition from Neonatal Intensive Care Unit to Home: A Qualitative Study

ERIC Educational Resources Information Center

Hutchinson, Sharon W.; Spillet, Marydee A.; Cronin, Mary

2012-01-01

Limited literature exists which examines how parents of infants hospitalized in the Neonatal Intensive Care Unit (NICU) transition from their infant's NICU hospital stay to home. This study examines the question, "What are the experiences of parents during their infant's transition from the NICU to home?" Grounded theory methods served as the…

'Making the move': relatives' experiences of the transition to a care home.

PubMed

Davies, Sue; Nolan, Mike

2004-11-01

Despite a growing awareness of the significance of helping a relative to relocate to a care home as a key phase in the caregiving career, relatively few studies in the UK have explored this experience in depth. The research on which the present paper is based sought to better understand experiences of nursing home placement from the viewpoint of relatives. The study was informed by a constructivist perspective. Data were collected in 37 semi-structured interviews involving 48 people who had assisted a close relative to move into a nursing home. Data analysis revealed three phases of the transition from the relatives' perspective: 'making the best of it'; 'making the move'; and 'making it better'. The relatives' experiences across these phases were understood in terms of five continua, reflecting the extent to which they felt they were: operating 'under pressure' or not; 'working together' or 'working alone'; 'supported' or 'unsupported', both practically and emotionally; 'in the know' or 'working in the dark'; and 'in control of events' or not. This paper reports on the findings which relate to the second phase of the transition, 'making the move', which relates to experiences around the time of relocation to the care home environment. The findings suggest that health and social care practitioners have enormous potential to influence relatives' experiences of nursing home entry. Experiences are enhanced if family carers perceive that they are able to work in partnership with care staff in order to ease the transition for the older person.

Between violation and competent care—Lived experiences of dependency on care in the ICU

PubMed Central

Lykkegaard, Kristina; Delmar, Charlotte

2015-01-01

This study explores the perceived meaning of dependency on care as experienced by intensive care patients. Research from non-intensive settings shows that dependency is often experienced negatively, but literature on the subject experienced by patients in the ICU is sparse. The study is based on in-depth qualitative semi-structured interviews of lived experience with three former patients admitted to an intensive care unit at a Danish university hospital. The in-depth interviews have been characterized as narratives. The main inspiration for the analysis method is Ricoeur's phenomenological hermeneutical interpretation theory. The study has found that dependency is experienced as difficult, and the relationship with the nurses seems to be ambivalent. The good relationship is experienced to make dependency easier, whereas negative experiences make it harder to cope with dependency. The participants deal with dependency by accepting negative experiences in gratitude for having recovered from critical illness. The findings might be influenced by studies being conducted in a western country setting where independence is valued. They can be used as means of reflection on nursing practice and matters such as communication and patient participation. PMID:25765881

Health and social care professionals' attitudes to interprofessional working and interprofessional education: A literature review.

PubMed

O'Carroll, Veronica; McSwiggan, Linda; Campbell, Martin

2016-01-01

The healthcare setting is a rich learning environment for students to experience interprofessional working (IPW) and interprofessional education (IPE). However, opportunities for IPE are limited, and student experiences of effective IPW are varied. This raises the question of how IPW and IPE are valued by health or social care professionals. A search of the literature was carried out to identify studies of health and social care staff attitudes to IPW and IPE. This review provides a summary of the main factors found to influence attitudes and the strengths and limitations of these studies. Professional background and prior IPE experience were identified as the influencing factors for which there is most evidence. The main limitations of the studies accessed included a focus on the value of IPE for staff, as opposed to students, and a limited number of studies considering the relationship between attitudes to IPW and the value placed on IPE. It is important that health and social care professionals lead by example by working collaboratively and providing students with opportunities for IPE. Identifying the variables influencing attitudes to IPW and IPE may assist in improving IPW and experiences of IPE for students learning in the healthcare setting.

Family members' lived experiences of everyday life after intensive care treatment of a loved one: a phenomenological hermeneutical study.

PubMed

Frivold, Gro; Slettebø, Åshild; Dale, Bjørg

2016-02-01

To illuminate relatives' experiences of everyday life after a loved one's stay in an intensive care unit. Relatives of intensive care patients experience considerable stress that can have a long-lasting effect on their everyday lives. Relatives frequently report anxiety, depression and complicated grief as a result of their experiences in the intensive care unit. A qualitative design was chosen. Thirteen relatives were interviewed 3 months to 1 year after the discharge or death of an intensive care unit patient. A phenomenological hermeneutical method was used to explore family members' lived experiences upon returning home after their loved ones' stay in the intensive care unit. Two themes emerged from the analysis of the data: (1) changes in everyday life and emotional reactions, and (2) managing changes and need of support and follow-up from the ICU. Family members experience changes in emotions, roles and responsibilities after returning home. They must maintain control of themselves and adapt to the changes to face the future. They cope by using their personal resources and support from others. Some are in further need of follow-up from the intensive care unit staff. Nursing education could focus increasingly more on the significance of communication and personal support, which helps family members cope during patients' stay and experience a sense of personal strength when returning home. Further research should address how to identify and support those with special needs after the intensive care unit stay. © 2016 John Wiley & Sons Ltd.

Empowerment, environment and person-centred care: A qualitative study exploring the hospital experience for adults with cognitive impairment.

PubMed

Prato, Laura; Lindley, Lyndsay; Boyles, Miriam; Robinson, Louise; Abley, Clare

2018-01-01

It is acknowledged that there are many challenges to ensuring a positive hospital experience for patients with cognitive impairment. The study ('Improving hospital care for adults with cognitive impairment') aimed to explore the positive and negative experiences of older adults with cognitive impairment (dementia and delirium) and their relatives and/or carers, during an acute hospital stay, from admission to discharge, using a qualitative, case study methodology. Six participants with cognitive impairment, eight relatives and 59 members of the health care team were recruited. Data was collected via ethnographic, observational periods at each stage of the hospital journey and through the use of semi-structured interviews with relatives, carers and health care staff including: medical staff; nursing staff; physiotherapists and ward managers. Interpretive phenomenological analysis was used to facilitate data analysis. 52 hours 55 minutes of ethnographic observations and 18 interviews with ward staff and relatives were undertaken. Three superordinate themes emerged from the data as crucial in determining the quality of the hospital experience: valuing the person; activities of empowerment and disempowerment and the interaction of environment with patient well-being. Whether the patient's hospital experience was positive or negative was powerfully influenced by family involvement and ward staff actions and communication. Participants identified a requirement for a ward based activity service for patients with cognitive impairment. Further research must be undertaken focusing on the development of ward based activities for patients with cognitive impairment, alongside a move towards care which explores measures to improve and expand relative involvement in hospital care.

Living through pelvic radiotherapy:A mixed method study of self-care activities and distressful symptoms.

PubMed

Jakobsson, Sofie; Ekman, Tor; Ahlberg, Karin

2015-06-01

To explore patients' experience of their illness when undergoing pelvic radiotherapy by describing the presence and severity of distressful symptoms and to explore initiated self-care activities in response to illness and symptoms. A mixed-method study was performed which included a core qualitative dataset and a supplementary quantitative dataset. Twenty-nine women undergoing five weeks of radiotherapy were prospectively interviewed during five weeks of treatment in order to capture experiences, distressful symptoms and quality of life during treatment. Grounded theory formed collection and analysis of the qualitative dataset and statistics were used to analyze the quantitative dataset. A maintained self-identity was concluded as being central during the trajectory of treatment. Initiated self-care activities served to alleviate physical, emotional, and social suffering; helping the respondents keep their integrity and sense of self. Previous life experiences influenced the process of being able to maintain self-identity. The gastrointestinal symptoms and pain caused most distress. In order to be able to maintain self-identity patients endure treatment by focusing on symptoms, on getting cured and on their self-image. Several distressful symptoms implied social limitations and a sense that the body would not take the strain. The result of this study can help health care professionals to gain a better understanding of the struggle to endure pelvic radiotherapy. Further, health care professionals should be more proactive in alleviating their patients' distressful symptoms. The results imply that previous life experiences should precede initiated interventions because these life experiences affect the patients' self-care activities. Copyright © 2014 Elsevier Ltd. All rights reserved.

Experiences of Community-Living Older Adults Receiving Integrated Care Based on the Chronic Care Model: A Qualitative Study

PubMed Central

Spoorenberg, Sophie L. W.; Wynia, Klaske; Fokkens, Andrea S.; Slotman, Karin; Kremer, Hubertus P. H.; Reijneveld, Sijmen A.

2015-01-01

Background Integrated care models aim to solve the problem of fragmented and poorly coordinated care in current healthcare systems. These models aim to be patient-centered by providing continuous and coordinated care and by considering the needs and preferences of patients. The objective of this study was to evaluate the opinions and experiences of community-living older adults with regard to integrated care and support, along with the extent to which it meets their health and social needs. Methods Semi-structured interviews were conducted with 23 older adults receiving integrated care and support through “Embrace,” an integrated care model for community-living older adults that is based on the Chronic Care Model and a population health management model. Embrace is currently fully operational in the northern region of the Netherlands. Data analysis was based on the grounded theory approach. Results Responses of participants concerned two focus areas: 1) Experiences with aging, with the themes “Struggling with health,” “Increasing dependency,” “Decreasing social interaction,” “Loss of control,” and “Fears;” and 2) Experiences with Embrace, with the themes “Relationship with the case manager,” “Interactions,” and “Feeling in control, safe, and secure”. The prospect of becoming dependent and losing control was a key concept in the lives of the older adults interviewed. Embrace reinforced the participants’ ability to stay in control, even if they were dependent on others. Furthermore, participants felt safe and secure, in contrast to the fears of increasing dependency within the standard care system. Conclusion The results indicate that integrated care and support provided through Embrace met the health and social needs of older adults, who were coping with the consequences of aging. PMID:26489096

Experiences of Community-Living Older Adults Receiving Integrated Care Based on the Chronic Care Model: A Qualitative Study.

PubMed

Spoorenberg, Sophie L W; Wynia, Klaske; Fokkens, Andrea S; Slotman, Karin; Kremer, Hubertus P H; Reijneveld, Sijmen A

2015-01-01

Integrated care models aim to solve the problem of fragmented and poorly coordinated care in current healthcare systems. These models aim to be patient-centered by providing continuous and coordinated care and by considering the needs and preferences of patients. The objective of this study was to evaluate the opinions and experiences of community-living older adults with regard to integrated care and support, along with the extent to which it meets their health and social needs. Semi-structured interviews were conducted with 23 older adults receiving integrated care and support through "Embrace," an integrated care model for community-living older adults that is based on the Chronic Care Model and a population health management model. Embrace is currently fully operational in the northern region of the Netherlands. Data analysis was based on the grounded theory approach. Responses of participants concerned two focus areas: 1) Experiences with aging, with the themes "Struggling with health," "Increasing dependency," "Decreasing social interaction," "Loss of control," and "Fears;" and 2) Experiences with Embrace, with the themes "Relationship with the case manager," "Interactions," and "Feeling in control, safe, and secure". The prospect of becoming dependent and losing control was a key concept in the lives of the older adults interviewed. Embrace reinforced the participants' ability to stay in control, even if they were dependent on others. Furthermore, participants felt safe and secure, in contrast to the fears of increasing dependency within the standard care system. The results indicate that integrated care and support provided through Embrace met the health and social needs of older adults, who were coping with the consequences of aging.

Dignity of older people in a nursing home: narratives of care providers.

PubMed

Jakobsen, Rita; Sørlie, Venke

2010-05-01

The purpose of this study was to illuminate the ethically difficult situations experienced by care providers working in a nursing home. Individual interviews using a narrative approach were conducted. A phenomenological-hermeneutic method developed for researching life experience was applied in the analysis. The findings showed that care providers experience ethical challenges in their everyday work. The informants in this study found the balance between the ideal, autonomy and dignity to be a daily problem. They defined the culture they work in as not supportive. They also thought they were not being seen and heard in situations where they disagree with the basic values of the organization. The results are discussed in terms of Habermas's understanding of modern society. Care settings for elderly people obviously present ethical challenges, particularly in the case of those suffering from dementia. The care provider participants in this study expressed frustration and feelings of powerlessness. It is possible to understand their experiences in terms of Habermas's theory of modern society and the concept of the system's colonization of the life world.

Patients' experiences and satisfaction about care provided by male nurses in medical surgical units in Islamabad, Pakistan: A pilot study.

PubMed

Younas, Ahtisham; Sundus, Amara

2018-01-01

Nursing is predominantly a female profession and caring has been considered an attribute of female nurses, which could imply a noncaring image of male nurses. To determine patients' experiences and satisfaction from care provided by male nurses in a private hospital in Islamabad, Pakistan. This cross-sectional study included a purposive sample of 50 patients admitted to medical surgical units for at least 2 days and who had at least three professional interactions with a male nurse. The Newcastle Satisfaction with Nursing Scale was used for data collection. Descriptive statistics were used for data analysis. The total score for experience and satisfaction was 81 and 51, respectively. A statistically significant difference existed between experience and satisfaction scores of male and female participants, indicating that males were more pleased and satisfied with their experience of receiving care from male nurses compared to the female participants. The male nurses were concerned for their patients, they were knowledgeable about the patients' condition and care, and provided them with clear explanations of the medical and nursing procedures. However, they seem to lack interpersonal relationship with patients and did not take initiative in understanding their patients. © 2017 Wiley Periodicals, Inc.

Organizational and Market Influences on Physician Performance on Patient Experience Measures

PubMed Central

Rodriguez, Hector P; von Glahn, Ted; Rogers, William H; Safran, Dana Gelb

2009-01-01

Objective To examine the extent to which medical group and market factors are related to individual primary care physician (PCP) performance on patient experience measures. Data Sources This study employs Clinician and Group CAHPS survey data (n=105,663) from 2,099 adult PCPs belonging to 34 diverse medical groups across California. Medical group directors were interviewed to assess the magnitude and nature of financial incentives directed at individual physicians and the adoption of patient experience improvement strategies. Primary care services area (PCSA) data were used to characterize the market environment of physician practices. Study Design We used multilevel models to estimate the relationship between medical group and market factors and physician performance on each Clinician and Group CAHPS measure. Models statistically controlled for respondent characteristics and accounted for the clustering of respondents within physicians, physicians within medical groups, and medical groups within PCSAs using random effects. Principal Findings Compared with physicians belonging to independent practice associations, physicians belonging to integrated medical groups had better performance on the communication (p=.007) and care coordination (p=.03) measures. Physicians belonging to medical groups with greater numbers of PCPs had better performance on all measures. The use of patient experience improvement strategies was not associated with performance. Greater emphasis on productivity and efficiency criteria in individual physician financial incentive formulae was associated with worse access to care (p=.04). Physicians located in PCSAs with higher area-level deprivation had worse performance on the access to care (p=.04) and care coordination (p<.001) measures. Conclusions Physicians from integrated medical groups and groups with greater numbers of PCPs performed better on several patient experience measures, suggesting that organized care processes adopted by these groups may enhance patients' experiences. Physicians practicing in markets with high concentrations of vulnerable populations may be disadvantaged by constraints that affect performance. Future studies should clarify the extent to which performance deficits associated with area-level deprivation are modifiable. PMID:19674429

A mixed-methods examination of communication between oncologists and primary care providers among primary care physicians in underserved communities.

PubMed

Shen, Megan Johnson; Binz-Scharf, Maria; D'Agostino, Tom; Blakeney, Natasha; Weiss, Elisa; Michaels, Margo; Patel, Shilpa; McKee, M Diane; Bylund, Carma L

2015-03-15

Research has demonstrated that communication and care coordination improve cancer patient outcomes. To improve communication and care coordination, it is important to understand primary care providers' (PCPs') perceptions of communication with oncologists as well as PCPs' communication needs. A mixed-methods approach was used in the present study. In the qualitative phase of the study, 18 PCPs practicing in underserved, minority communities were interviewed about their experiences communicating with oncologists. In the quantitative phase of the study, 128 PCPs completed an online survey about their preferences, experiences, and satisfaction with communication with oncologists. Results indicated a PCP-oncologist gap in communication occurred between diagnosis and treatment. PCPs wanted more communication with oncologists, updates on their patients' prognosis throughout treatment, and to be contacted via telephone or email and saw their role as crucial in providing supportive care for their patients. Although PCPs recognize that they play a critical, proactive role in supporting patients throughout the continuum of their cancer care experience, existing norms regarding postreferral engagement and oncologist-PCP communication often hinder activation of this role among PCPs. Expected standards regarding the method, frequency, and quality of postreferral communication should be jointly articulated and made accountable between PCPs and oncologists to help improve cancer patients' quality of care, particularly in minority communities. © 2014 American Cancer Society.

To be a trained and supported volunteer in palliative care - a phenomenological study.

PubMed

Söderhamn, Ulrika; Flateland, Sylvi; Fensli, Marthe; Skaar, Ragnhild

2017-03-14

It has been found that including volunteers in palliative care is a positive contribution to seriously ill patients. It is, however, recommended that the volunteers are trained and supported. The aim of this study was to describe a group of trained and supported volunteers' lived experiences as volunteers in palliative care within the community health care services. This study adopted a descriptive phenomenological approach featuring individual interviews with nine volunteers. The interviews were analysed using the descriptive phenomenological research method according to Giorgi. Being a volunteer in palliative care was both a positive and meaningful experience. It was a privilege being able to help those in need, which yielded positive returns. As a volunteer, it was important to be present for the ill persons and to follow them in their various physical and psychical states, which also implied that the volunteer had to face and deal with challenging situations. However, volunteers stated it was crucial to possess knowledge and life experience, as well as a clarified role, and they stressed the importance of being followed up by a mentor. The findings showed that trained and supported volunteers among seriously ill or dying people within the realm of community health care services play an independent and important role in the palliative care team. A coordinator in palliative care is especially suitable for training and supporting the volunteers.

Access to and Satisfaction with Prenatal Care Among Pregnant Women with Physical Disabilities: Findings from a National Survey.

PubMed

Mitra, Monika; Akobirshoev, Ilhom; Moring, Nechama Sammet; Long-Bellil, Linda; Smeltzer, Suzanne C; Smith, Lauren D; Iezzoni, Lisa I

2017-12-01

Previous qualitative studies suggest that women with physical disabilities face disability-specific barriers and challenges related to prenatal care accessibility and quality. This study aims to examine the pregnancy and prenatal care experiences and needs of U.S. mothers with physical disabilities and their perceptions of their interactions with their maternity care clinicians. We conducted the first survey of maternity care access and experiences of women with physical disabilities from 37 states. The survey was disseminated in partnership with disability community agencies and via social media and targeted U.S. women with a range of physical disabilities who had given birth in the past 10 years. The survey included questions regarding prenatal care quality and childbirth and labor experiences. A total of 126 women with various physical disability types from 37 states completed the survey. Almost half of the respondents (53.2%) reported that their physical disability was a big factor in their selection of a maternity care provider and 40.3% of women reported that their prenatal care provider knew little or nothing about the impact of their physical disability on their pregnancy. Controlling for maternal demographic characteristics and use of mobility equipment, women who reported that their prenatal care provider lacked knowledge of disability and those who felt they were not given adequate information were more likely to report unmet needs for prenatal care. The findings from this study suggest the need for training and education for clinicians regarding the prenatal care needs of women with physical disabilities.

Resident challenges with daily life in Chinese long-term care facilities: A qualitative pilot study.

PubMed

Song, Yuting; Scales, Kezia; Anderson, Ruth A; Wu, Bei; Corazzini, Kirsten N

As traditional family-based care in China declines, the demand for residential care increases. Knowledge of residents' experiences with long-term care (LTC) facilities is essential to improving quality of care. This pilot study aimed to describe residents' experiences in LTC facilities, particularly as it related to physical function. Semi-structured open-ended interviews were conducted in two facilities with residents stratified by three functional levels (n = 5). Directed content analysis was guided by the Adaptive Leadership Framework. A two-cycle coding approach was used with a first-cycle descriptive coding and second-cycle dramaturgical coding. Interviews provided examples of challenges faced by residents in meeting their daily care needs. Five themes emerged: staff care, care from family members, physical environment, other residents in the facility, and personal strategies. Findings demonstrate the significance of organizational context for care quality and reveal foci for future research. Copyright © 2017 Elsevier Inc. All rights reserved.

Care and cultural context of Lebanese Muslim immigrants: using Leininger's theory.

PubMed

Luna, L

1994-01-01

The purpose of this ethnonursing study was to describe and analyze the meanings and experiences of care for Lebanese Muslims as influenced by cultural context in selected natural and community settings. Leininger's theory of Cultural Care Diversity and Universality served as the conceptualizing frame-work for the study. Research questions focused on discovering the meanings and experiences of care as influenced by world view, social structure, and cultural context in the hospital, clinic, and home. Ethno-nursing research methods were used with key and general informants in an urban US community. The majority of informants were new immigrants living less than 10 years in the US. Universal themes of care that were similar in the three contexts reflected care as a religious obligation in Islam, care as equal but different gender role responsibilities, and care as individual and collective meanings of honor. This article also presents findings related to gender role responsibilities. Nursing decisions and actions using Leininger's three modes were identified to achieve culturally congruent nursing care.

Enhancing resilience in registered aged care nurses.

PubMed

Cameron, Fiona; Brownie, Sonya

2010-06-01

To identify the factors that impact the resilience of registered aged care nurses, that is their capacity to adapt to the physical, mental and emotional demands of working in aged care facilities. This study explored the lived experience of nine registered nurses working in residential aged care facilities on the Sunshine Coast, Queensland, who were asked to reflect on the phenomenon of resilience in the workplace. This study found that clinical expertise, a sense of purpose in a holistic care environment, a positive attitude and work-life balance are important determinants of resilience in aged care nurses. Resilience in nurses in residential aged care facilities is enhanced when they are able to maintain long-term, meaningful relationships with residents. Collegial support that provides opportunities to debrief and validate experiences as well as the use of humour to defuse stress promotes well-being and builds resilience in the workplace.

Exploring Nurses’ Knowledge and Experiences Related to Trauma-Informed Care

PubMed Central

Stokes, Yehudis; Jacob, Jean-Daniel; Gifford, Wendy; Squires, Janet; Vandyk, Amanda

2017-01-01

Trauma-informed care is an emerging concept that acknowledges the lasting effects of trauma. Nurses are uniquely positioned to play an integral role in the advancement of trauma-informed care. However, knowledge related to trauma-informed care in nursing practice remains limited. The purpose of this article is to present the results of a qualitative study which explored nurses’ understandings and experiences related to trauma-informed care. Seven semistructured interviews were conducted with nurses and four categories emerged from the analysis: (a) Conceptualizing Trauma and Trauma-Informed Care, (b) Nursing Care and Trauma, (c) Context of Trauma-Informed Care, and (d) Dynamics of the Nurse–Patient Relationship in the Face of Trauma. These findings highlight important considerations for trauma-informed care including the complex dynamics of trauma that affect care, the need to push knowledge about trauma beyond mental health care, and noteworthy parallels between nursing care and trauma-informed care. PMID:29085862

Exploring Nurses' Knowledge and Experiences Related to Trauma-Informed Care.

PubMed

Stokes, Yehudis; Jacob, Jean-Daniel; Gifford, Wendy; Squires, Janet; Vandyk, Amanda

2017-01-01

Trauma-informed care is an emerging concept that acknowledges the lasting effects of trauma. Nurses are uniquely positioned to play an integral role in the advancement of trauma-informed care. However, knowledge related to trauma-informed care in nursing practice remains limited. The purpose of this article is to present the results of a qualitative study which explored nurses' understandings and experiences related to trauma-informed care. Seven semistructured interviews were conducted with nurses and four categories emerged from the analysis: (a) Conceptualizing Trauma and Trauma-Informed Care, (b) Nursing Care and Trauma, (c) Context of Trauma-Informed Care, and (d) Dynamics of the Nurse-Patient Relationship in the Face of Trauma. These findings highlight important considerations for trauma-informed care including the complex dynamics of trauma that affect care, the need to push knowledge about trauma beyond mental health care, and noteworthy parallels between nursing care and trauma-informed care.

Caesarean section deliveries: Experiences of mothers of midwifery care at a public hospital in Nelson Mandela Bay.

PubMed

Jikijela, Thobeka P; James, Sindiwe; Sonti, Balandeli S I

2018-01-30

The rate of caesarean section deliveries has increased globally and mothers are faced with challenges of postoperative recovery and caring thereof. Midwives have a duty to assist these mothers to self-care. The objective was to explore and describe experiences of post-caesarean section delivered mothers of midwifery care at a public hospital in Nelson Mandela Bay. A qualitative, descriptive and explorative research design was used in the study. Data were collected from 11 purposively criterion-selected mothers who had a caesarean section delivery. One-on-one semi-structured interviews were conducted in the post-natal wards. Research ethics, namely autonomy, beneficence, justice and informed consent, were adopted in the study. All participants were informed of their right to withdraw from the study at any stage without penalties. Interviews were analysed using Tesch's method of data analysis. Three main themes were identified as experiences of: diverse pain, physical limitation and frustration and health care services as different. Experiences of mothers following a caesarean section delivery with midwifery services at a public hospital in Nelson Mandela Bay were explored and described as diverse. A need for adequate pain management as well as assistance and breastfeeding support to mothers following caesarean delivery was identified as crucial to promote a good mother-to-child relationship.

"Sometimes I've gone home feeling that my voice hasn't been heard": a focus group study exploring the views and experiences of health care assistants when caring for dying residents.

PubMed

Fryer, Susan; Bellamy, Gary; Morgan, Tessa; Gott, Merryn

2016-08-19

In most developed countries, Health Care Assistants comprise a significant, and growing, proportion of the residential aged care workforce. Despite the fact that they provide the majority of direct care for residents, little is known about a key care aspect of their work, namely their experience of caring for dying residents. Twenty-six Health Care Assistants working in aged residential care facilities in Auckland, New Zealand participated in six focus group discussions. Focus groups were designed to explore the experiences of Health Care Assistants caring for imminently dying residents in aged care facilities and to identify barriers and facilitators to their work in this area. The focus groups were digitally recorded, transcribed verbatim and analysed using a general inductive approach. Participants confirmed that Health Care Assistants provide the majority of hands on care to dying residents and believed they had a valuable role to play at this time due to their unique 'familial' relationship with residents and families. However, it was apparent that a number of barriers existed to them maximising their contribution to supporting dying residents, most notably the lack of value placed on their knowledge and experience by other members of the multidisciplinary team. Whilst a need for additional palliative and end of life care education was identified, a preference was identified for hands on education delivered by peers, rather than the didactic education they currently receive. Given ageing populations internationally coupled with a constrained health budget, the role of Health Care Assistants in most developed countries is likely to become even more significant in the short to medium term. This study makes a unique contribution to the international literature by identifying the barriers to caring for dying residents experienced by this valuable sector of the aged care workforce. These data have the potential to inform new, innovative, interventions to address the urgent need identified to improve palliative and end of life care management in aged care internationally.

Experiences of security and continuity of care: Patients' and families' narratives about the work of specialized palliative home care teams.

PubMed

Klarare, Anna; Rasmussen, Birgit H; Fossum, Bjöörn; Fürst, Carl Johan; Hansson, Johan; Hagelin, Carina Lundh

2017-04-01

Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care. Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC). A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes. Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions. Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

Child Care and the Development of Behavior Problems among Economically Disadvantaged Children in Middle Childhood

ERIC Educational Resources Information Center

Votruba-Drzal, Elizabeth; Coley, Rebekah Levine; Maldonado-Carreno, Carolina; Li-Grining, Christine P.; Chase-Lansdale, P. Lindsay

2010-01-01

Research examining the longer term influences of child care on children's development has expanded in recent years, but few studies have considered low-income children's experiences in community care arrangements. Using data from the Three-City Study (N = 349), the present investigation examines the influences of child care quality, extent and…

Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD)

ERIC Educational Resources Information Center

Warfield, Marji Erickson; Crossman, Morgan K.; Delahaye, Jennifer; Der Weerd, Emma; Kuhlthau, Karen A.

2015-01-01

We conducted in-depth case studies of 10 health care professionals who actively provide primary medical care to adults with autism spectrum disorders. The study sought to understand their experiences in providing this care, the training they had received, the training they lack and their suggestions for encouraging more physicians to provide this…

Death and caring for dying patients: exploring first-year nursing students' descriptive experiences.

PubMed

Ek, Kristina; Westin, Lars; Prahl, Charlotte; Osterlind, Jane; Strang, Susann; Bergh, Ingrid; Hammarlund, Kina

2014-10-01

To describe first-year nursing students' experiences of witnessing death and providing end-of-life care. This study is part of a larger longitudinal project. Interviews (n=17) were conducted with nursing students at the end of their first year of education. To analyse the interviews (lived-experience descriptions), a thematic analysis, 'a search for meaning' ( Van Manen, 1997 ) was applied. The results are presented within the framework of four separate themes: (1) The thought of death is more frightening than the actual experience, (2) Daring to approach the dying patient and offering something of oneself, (3) The experience of not sufficing in the face of death and (4) Being confronted with one's own feelings. Nursing students require continuous support and opportunity to reflect and discuss their experiences about caring for dying patients and confronting death throughout the entirety of their education. In addition, teachers and clinical supervisors need to give support using reflective practice to help students to develop confidence in their capacity for caring for dying patients.

Service seeking experiences of college-aged sexual and intimate partner violence victims with a mental health and/or behavioral disability.

PubMed

Nichols, Emily M; Bonomi, Amy; Kammes, Rebecca; Miller, Elizabeth

2018-02-15

To examine mental health service experiences following sexual violence (SV) and intimate partner violence (IPV) victimization among college women with a disability. College women (n = 27, ages 19 to 24) with a disability who experienced at least one SV/IPV occurrence; interviewed July/August 2016. Qualitative study using in-depth interviews, with thematic analysis. Women tended to wait several months (or did not seek care at all) following SV/IPV, because they downplayed their experience (e.g., not wanting to label an experience as "rape"). Those seeking services primarily did so because of escalating mental health concerns. Among service seekers, women were satisfied when professionals validated their experiences/concerns; and were dissatisfied when faced with extended wait time for care and/or professionals unskilled with SV/IPV and mental health. However, women still sought care following negative experiences. Improved access to integrated care for SV/IPV and mental health, along with skilled professionals, is essential.

Spirituality and spiritual care in and around childbirth.

PubMed

Crowther, Susan; Hall, Jennifer

2015-06-01

Emerging evidence points to childbirth as a spiritually felt meaningful occasion. Although growing literature and development of guidelines charge the midwife to provide spiritual care felt spiritual experiences are not addressed. There is need to revisit contemporary approaches to spiritual care in midwifery lest something of significance becomes lost in policy rhetoric. The aim of this discussion paper is to bring to the surface what is meant by spiritual care and spiritual experiences, to increase awareness about spirituality in childbirth and midwifery and move beyond the constraints of structured defined protocols. The authors' own studies and other's research that focuses on the complex contextual experiences of childbirth related to spirituality are discussed in relation to the growing interest in spiritual care assessments and guidelines. There is a growing presence in the literature about how spirituality is a concern to the wellbeing of human beings. Although spirituality remains on the peripheral of current discourse about childbirth. Spiritual care guidelines are now being developed. However spiritual care guidelines do not appear to acknowledge the lived-experience of childbirth as spiritually meaningful. Introduction of spiritual care guidelines into midwifery practice do not address the spiritual meaningful significance of childbirth. If childbirth spirituality is relegated to a spiritual care tick box culture this would be a travesty. The depth of spirituality that inheres uniquely in the experience of childbirth would remain silenced and hidden. Spiritual experiences are felt and beckon sensitive and tactful practice beyond words and formulaic questions. Copyright © 2015 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.

Breast-feeding support in Ireland: a qualitative study of health-care professionals' and women's views.

PubMed

Whelan, Barbara; Kearney, John M

2015-08-01

To examine women's experience of professional support for breast-feeding and health-care professionals' experience of providing support. We conducted semi-structured qualitative interviews among women with experience of breast-feeding and health-care professionals with infant feeding roles. Interviews with women were designed to explore their experience of support for breast-feeding antenatally, in hospital and postnatally. Interviews with health-care professionals were designed to explore their views on their role and experience in providing breast-feeding support. Interview transcripts were analysed using content analysis and aspects of Grounded Theory. Overarching themes and categories within the two sets were identified. Urban and suburban areas of North Dublin, Ireland. Twenty-two women all of whom had experience of breast-feeding and fifty-eight health-care professionals. Two overarching themes emerged and in each of these a number of categories were developed: theme 1, facilitators to breast-feeding support, within which being facilitated to breast-feed, having the right person at the right time, being discerning and breast-feeding support groups were discussed; and theme 2, barriers to breast-feeding support, within which time, conflicting information, medicalisation of breast-feeding and the role of health-care professionals in providing support for breast-feeding were discussed. Breast-feeding is being placed within a medical model of care in Ireland which is dependent on health-care professionals. There is a need for training around breast-feeding for all health-care professionals; however, they are limited in their support due to external barriers such as lack of time. Alternative support such as peer support workers should be provided.

[Intuitive ability in nursing care].

PubMed

da Silva, Alcione Leite

2003-01-01

This study aimed to understand the intuitive ability of nursing professionals in caring. The study method was qualitative, adopting a descriptive exploratory approach. Sampling involved 87 female nursing professionals, being 31 nurses, 29 nursing technicians and 18 nursing auxiliaries. The result showed different levels of intuitive abilities, related to novice, standard, and veteran. The relation between the three levels of intuitive abilities and the corresponding figures in years, observed in a North American study, was not identified. The factors described as affecting the intuitive experience were both environmental and intra-interpersonal (personological). The experiences of the professionals portrayed the importance of intuition in nursing care, mainly in doubtful and conflicting situations and, in this sense, its vital function was decision-making towards better quality of nursing care.

The lived experiences of resilience in Iranian adolescents living in residential care facilities: A hermeneutic phenomenological study.

PubMed

Nourian, Manijeh; Shahbolaghi, Farahnaz Mohammadi; Tabrizi, Kian Nourozi; Rassouli, Maryam; Biglarrian, Akbar

2016-01-01

Resilience is one of the main factors affecting human health, and perceiving its meaning for high-risk adolescents is of particular importance in initiating preventive measures and providing resilience care. This qualitative study was conducted to explain the meaning of resilience in the lived experiences of Iranian adolescents living in governmental residential care facilities. This study was conducted using the hermeneutic phenomenological method. Semi-structured interviews were conducted with eight adolescents aged 13-17 living in governmental residential care facilities of Tehran province affiliated to the Welfare Organization of Iran who articulated their experiences of resilience. Sampling lasted from May 2014 to July 2015 and continued until new themes were no longer emerging. The researchers analyzed the verbatim transcripts using Van Manen's six-step method of phenomenology. The themes obtained in this study included "going through life's hardships," "aspiring for achievement," "self-protection," "self-reliance," and "spirituality." Our study indicates that the meaning of resilience coexists with self-reliance in adolescents' lived experiences. Adolescents look forward to a better future. They always trust God in the face of difficulties and experience resilience by keeping themselves physically and mentally away from difficulties. Adverse and bitter experiences of the past positively affected their positive view on life and its difficulties and also their resilience. The five themes that emerged from the findings describe the results in detail. The findings of this study enable nurses, health administrators, and healthcare providers working with adolescents to help this vulnerable group cope better with their stressful life conditions and improve their health through increasing their capacity for resilience.

The vulnerability of family caregivers in relation to vulnerability as understood by nurses.

PubMed

Sarvimäki, Anneli; Stenbock-Hult, Bettina; Sundell, Eija; Oesch-Börman, Christine

2017-03-01

In Finland, the care of older persons is shifting from institutional care to family care. Research shows that family caregivers experience their situation much in the same way as professional nurses. The nurses' experiences have been studied in terms of vulnerability, and the same perspective could deepen our understanding of family caregivers' experiences. The aim of this study was to gain knowledge of the vulnerability of older caregivers taking care of an ageing family member. The research questions were as follows: How do family caregivers experience vulnerability? How do their experiences relate to vulnerability as understood by nurses? The study was done as a secondary analysis of focus group interviews on the experiences and daily life of older family caregivers. Four caregivers had taken part in monthly interviews during a period of 10 months. The interviews were analysed by deductive and inductive content analysis. The results showed that the caregivers saw caregiving as part of being human. They experienced a variety of feelings and moral agony and were harmed physically, mentally and socially. They showed courage, protected themselves and recognised that being a caregiver also was a source of maturing and developing. These results corresponded with the nurses' understanding of vulnerability. Shame, the experience of duty as a burden, worry and loneliness were themes that were found only among the family caregivers. The use of a matrix may have restricted the analysis, but using it in an unconstrained way allowed for new themes to be created. The results indicate a common humanness and vulnerability in professional and family caregiving. They also show that family caregivers need more support both from society and professionals. © 2016 Nordic College of Caring Science.

Patients' experience of thirst while being conscious and mechanically ventilated in the intensive care unit.

PubMed

Kjeldsen, Caroline L; Hansen, Mette S; Jensen, Kamilla; Holm, Anna; Haahr, Anita; Dreyer, Pia

2018-03-01

Because of changes in sedation strategies, more patients in the intensive care unit (ICU) are conscious. Therefore, new and challenging tasks in nursing practice have emerged, which require a focus on the problems that patients experience. Thirst is one such major problem, arising because the mechanical ventilator prevents the patients from drinking when they have the urge to do so. To gain a deeper understanding of the patients' experiences and to contribute new knowledge in nursing care, this study focuses on the patients' experiences of thirst during mechanical ventilation (MV) while being conscious. To explore patients' experience of thirst while being conscious and mechanically ventilated. This hermeneutic study used qualitative interviews of 12 patients. Data were analyzed based on content analysis. Interviews were conducted between September and October 2014 in two large ICUs in Denmark. Four themes relating to the patients' experiences of thirst during MV were identified: a paramount thirst, a different sense in the mouth, deprivation of the opportunity to quench thirst and difficulties associated with thirst. Patients associate feelings of desperation, anxiety and powerlessness with the experience of thirst. These feelings have a negative impact on their psychological well-being. A strategy in the ICU that includes no sedation for critically ill patients in need of MV introduces new demands on the nurses who must care for patients who are struggling with thirst. This study shows that despite several practical attempts to relieve thirst, it remains a paramount problem for the patients. ICU nurses need to increase their focus on issues of thirst and dry mouth, which are two closely related issues for the patients. Communication may be a way to involve the patients, recognize and draw attention to their problem. © 2017 British Association of Critical Care Nurses.

[Study on incorporation of "management and guidance of home-visiting by a pharmacist" into a care plan -observation based on a survey of care managers-].

PubMed

Nanaumi, Yoko; Onda, Mitsuko; Sakurai, Hidehiko; Tanaka, Rie; Tsubota, Kenichi; Matoba, Shunya; Mukai, Yusuke; Arakawa, Yukio; Hayase, Yukitoshi

2010-11-01

A survey of care managers ("CMs") was conducted to identify top priority issues in promoting the management and guidance of home-visiting by a pharmacist ("management and guidance") by focusing on the experience in incorporating the management and guidance into a care plan and its relevant factors. Major survey items included (1) number of years working as a CM, (2) basic occupation, (3) experience in incorporating the management and guidance into care plans, (4) understanding the management and guidance content, and (5) an awareness of the need for pharmacists' involvement in care plans. A χ² test was conducted to determine if the experience in incorporating the management and guidance into care plans caused a difference in the distribution of the number of years as a CM, the basic occupation, understanding of the management and guidance content, and an awareness of the need for pharmacists' involvement in care plans. A regression analysis was conducted to determine the degree of association between the incorporation experience and each item. The numbers of years working as a CM, the basic occupation, understanding of the management and guidance content, and an awareness of the need for pharmacists' involvement in care plans, were found to be associated with the experience in incorporating the management and guidance into care plans. Understanding of the management and guidance content was most closely associated. To promote pharmacists' management and guidance for home-based care, CMs need to deepen their understanding of this service.

Improving care planning and coordination for service users with medical co-morbidity transitioning between tertiary medical and primary care services.

PubMed

Cranwell, K; Polacsek, M; McCann, T V

2017-08-01

WHAT IS KNOWN ON THE SUBJECT?: Mental health service users with medical co-morbidity frequently experience difficulties accessing and receiving appropriate treatment in emergency departments. Service users frequently experience fragmented care planning and coordinating between tertiary medical and primary care services. Little is known about mental health nurses' perspectives about how to address these problems. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Emergency department clinicians' poor communication and negative attitudes have adverse effects on service users and the quality of care they receive. The findings contribute to the international evidence about mental health nurses' perspectives of service users feeling confused and frustrated in this situation, and improving coordination and continuity of care, facilitating transitions and increasing family and caregiver participation. Intervention studies are needed to evaluate if adoption of these measures leads to sustainable improvements in care planning and coordination, and how service users with medical co-morbidity are treated in emergency departments in particular. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Effective planning and coordination of care are essential to enable smooth transitions between tertiary medical (emergency departments in particular) and primary care services for service users with medical co-morbidity. Ongoing professional development education and support is needed for emergency department clinicians. There is also a need to develop an organized and systemic approach to improving service users' experience in emergency departments. Introduction Mental health service users with medical co-morbidity frequently experience difficulties accessing appropriate treatment in medical hospitals, and often there is poor collaboration within and between services. Little is known about mental health nurses' perspectives on how to address these problems. Aim To explore mental health nurses' perspectives of the experience of service users with medical co-morbidity in tertiary medical services, and to identify how to improve care planning and coordination for service users transitioning between tertiary medical and primary care services. Method Embedded within an experience-based co-design study, focus group discussions were conducted with 17 emergency department nurses and other clinicians, in Melbourne, Australia. Results Three main themes were abstracted from the data: feeling confused and frustrated, enhancing service users' transition and experience and involving families and caregivers. Participants perceived the service user experience to be characterized by fear, confusion and a sense of not being listened to. They highlighted that service users' transition and experience could be enhanced by facilitating transitions and improving coordination and continuity of care. They also emphasized the need to increase family and caregiver participation. Conclusion Our findings contribute to knowledge about improving the way service users are treated in emergency departments and improving care planning and coordination; in particular, facilitating transitions, improving coordination and continuity of care and increasing family and caregiver participation. © 2016 The Authors. Journal of Psychiatric and Mental Health Nursing Published by John Wiley & Sons Ltd.

When open access might not work: Understanding patient attitudes in appointment scheduling.

PubMed

Finkelstein, Stacey R; Liu, Nan; Rosenthal, David; Poghosyan, Lusine

2017-01-25

Open-access (OA) systems aim to reduce delays to care. However, recent evidence suggests that OA systems might reduce patient satisfaction and result in poorer patient experiences due to patients' inability to obtain appointments with their usual care provider. We conducted a series of experiments to explore the role of risk attitudes, an individual difference variable that measures preferences for risky options, in patients' perception of OA systems. The aim of the study was to investigate the relationship between patient's risk attitudes and attitudes toward OA systems and demonstrate whether patients' attitudes toward OA systems will vary as a function of their risk attitudes. Three separate experiments were conducted to assess the relationship between patient risk attitudes and their attitudes about OA systems. Study 1 (patient population) explored the aforementioned relationship. We explored two potential moderators for this effect: how salient the tradeoff is between delays to care and quality of care (Study 2; online population) and the severity of the patient's health condition (Study 3; patient population). Compared to risk-averse patients, risk-seeking patients have more favorable attitudes toward OA systems (a 1-point increase in risk attitudes on a 7-point scale resulted in a 0.44-point boost in attitudes toward OA systems on a 7-point scale). This relationship holds even when the tradeoff between access to care and quality of care is made salient (e.g., a practice informs patients they can have a same-day appointment but are unlikely to see their regular provider) and when people consider having a minor health condition. This relationship is attenuated when patients imagine having a serious medical condition because speedy access to care becomes a top priority. Risk-seeking patients have more favorable attitudes toward OA systems. Risk-seeking patients are primarily driven by speed to access at the potential expense of continuity of care. Organizations that better understand patient motives in scheduling medical appointments can introduce more effective interventions and positively impact patient experiences of care.

Providing perinatal loss care: satisfying and dissatisfying aspects for midwives.

PubMed

Fenwick, Jennifer; Jennings, Belinda; Downie, Jill; Butt, Janice; Okanaga, Mayumi

2007-12-01

There is limited midwifery research that focuses on midwives experiences and attitudes to providing care for women who experience the death of a baby. There is also limited research investigating care components, and evidence to inform the basis of clinical practice in Australia and internationally. This paper presents the qualitative findings of a small study that aimed to investigate midwives experience, confidence and satisfaction with providing care for women who experienced perinatal loss. Eighty-three Western Australian midwives responded to an open ended question asking them to describe the most and least satisfying aspects of their role when providing care to women who experienced a perinatal loss. Thematic analysis was used to analyse the data. The analysis revealed that Australian midwives gained most satisfaction from providing skilled midwifery care that they considered made a difference to women. This was enabled when midwives were afforded the opportunity to provide continuity of midwifery carer to women throughout the labour, birth and early postnatal period. In terms of the least satisfying aspects of care, midwives identified that they struggled with the emotional commitment needed to provide perinatal loss care, as well as with how to communicate openly and share information with women. Within the context of the study setting, midwifery care for women following perinatal loss reflects the care components espoused in the literature. There are, however, organisational issues within health care that require commitment to continuity of care and further education of practitioners to enhance outcomes for clients.

Young women's recent experience of labour and birth care in Queensland.

PubMed

Redshaw, Maggie; Hennegan, Julie; Miller, Yvette

2014-07-01

young parenthood continues to be an issue of concern in terms of clinical and psychosocial outcomes for mothers and their babies, with higher rates of medical complications such as preterm labour and hypertensive disease and a higher risk of depression. The aim of this study was to investigate how young age impacts on women's experience of intrapartum care. secondary analysis of data collected in a population based survey of women who had recently given birth in Queensland, comparing clinical and interpersonal aspects of the intrapartum maternity care experience for 237 eligible women aged 15-20 years and 6534 aged more than 20 years. Descriptive and multivariate analyses were undertaken. in the univariate analysis a number of variables were significantly associated with clinical aspects of labour and birth and perceptions of care: young women were more likely to birth in a public facility, to travel for birth and to live in less economically advantaged areas, to have a normal vaginal birth and to have one carer through labour. They were also less likely to report being treated with respect and kindness and talked to in a way they could understand. In logistic regression models, after adjustment for parity, other socio-demographic factors and mode of birth, younger mothers were still more likely to birth in a public facility, to travel for birth, to be more critical about interpersonal and aspects of care and the hospital or birth centre environment. this study shows how experience of care during labour and birth is different for young women. Young women reported poorer quality interpersonal care which may well reflect an inferior care experience and stereotyping by health professionals, indicating a need for more effective staff engagement with young women at this time. Copyright © 2013 Elsevier Ltd. All rights reserved.

Through the Patients’ Eyes: The Experience of End-Stage Renal Disease Patients Concerning the Provided Nursing Care

PubMed Central

Stavropoulou, Areti; Grammatikopoulou, Maria G.; Rovithis, Michail; Kyriakidi, Konstantina; Pylarinou, Andriani; Markaki, Anastasia G.

2017-01-01

Chronic kidney disease is a condition that affects both the physical and mental abilities of patients. Nursing care is of pivotal importance, in particular when end-stage renal disease (ESRD) patients are concerned, since the quality of the provided care may severely influence the patient’s quality of life. This is why it is important to explore patient experiences concerning the rendered care. However, limited up-to-date studies have addressed this issue. The aim of the present study was to stress the experiences of ESRD patients concerning the provided nursing care in the hemodialysis unit at the University Hospital in Heraklion, Crete. A qualitative methodological approach was used, based on the principles of phenomenological epistemology. Semi-structured interviews were conducted, and open-ended questions were applied to record how patients experienced the rendered care during dialysis. The recorded data were analyzed via qualitative content analysis, which revealed three main themes: ‘Physical Care’, ‘Psychological Support’ and ‘Education’. Patients’ views were conceptualized into sub-themes within each main theme. The interviews revealed the varied and distinct views of ESRD patients, indicating that the rendered care should be individualized. PMID:28754014

Negotiating the (bio)medical gaze - Experiences of trans-specific healthcare in Sweden.

PubMed

Linander, Ida; Alm, Erika; Hammarström, Anne; Harryson, Lisa

2017-02-01

In Sweden as well as in other western countries persons with trans experiences have to go through a clinical evaluation in order to get access to gender-confirming medical procedures. The aim of this study is to analyse care-users' experiences of navigating and negotiating access to gender-confirming medical procedures in Sweden. Biomedicalisation is used as a theoretical framework in order to analyse how technoscientific and neoliberal developments are parts of constructing specific experiences within trans-specific care. Constructivist grounded theory was used to analyse 14 interviews with persons having experiences of, or considering seeking, trans-specific healthcare. The participants experienced trans-specific healthcare as difficult to navigate because of waiting times, lack of support, provider ignorance and relationships of dependency between healthcare-users and providers. These barriers pushed the users to take responsibility for the care process themselves, through ordering hormones from abroad, acquiring medical knowledge and finding alternative support. Based on the participants' experiences, it can be argued that the shift of responsibility from care-providers to users is connected to a lack of resources within trans-specific care, to neoliberal developments within the Swedish healthcare system, but also to discourses that frame taking charge of the care process as an indicator that a person is in need of or ready for care. Thus, access to gender-confirming medical procedures is stratified, based on the ability and opportunity to adopt a charge-taking role and on economic and geographic conditions. Based on the results and discussion, we conclude that trans-specific care ought to focus on supporting the care-seekers throughout the medical process, instead of the current focus on verifying the need for care. There is also a need for increased knowledge and financial resources. A separation between legal and medical gender reassignment could contribute to a better relationship between care-providers and care-users and increase the quality of care. Copyright © 2016 Elsevier Ltd. All rights reserved.

The meaning of a poor childbirth experience - A qualitative phenomenological study with women in Rwanda.

PubMed

Mukamurigo, Judith; Dencker, Anna; Ntaganira, Joseph; Berg, Marie

2017-01-01

Being pregnant and giving birth is a pivotal life event and one that a woman ordinarily remembers for most of her life. A negative childbirth experience can affect a woman's health well beyond the episode of the labour and birth itself. This study explored the meaning of a poor childbirth experience, as expressed by women who had given birth in Rwanda. In a cross-sectional household study conducted in Northern Province and in Kigali City, the capital of Rwanda, a structured questionnaire was answered by women who had given birth one to 13 months earlier. One question, answered by 898 women, asked them to rate their overall experience of childbirth from 0 (very bad) to 10 (very good). Of these, 28 women (3.1%) who had rated their childbirth experience as bad (≤ 4) were contacted for individual interviews. Seventeen of these women agreed to participate in individual in-depth interviews. The texts were analysed with a reflective lifeworld approach. The essential meaning of a "poor" childbirth experience was that the women had been exposed to disrespectful care, constituted by neglect, verbal or physical abuse, insufficient information, and denial of their husband as a companion. The actions of carers included abandonment, humiliation, shaming and insult, creating feelings of insecurity, fear and distrust in the women. Two of the women did not report any experience of poor care; their low rating was related to having suffered from medical complications. It is challenging that the main finding is that women are exposed to disrespectful care. In an effort to provide an equitable and high quality maternal health care system in Rwanda, there is a need to focus on activities to implement respectful, evidence-based care for all. One such activity is to develop and provide education programmes for midwives and nurses about professional behaviour when caring for and working with women during labour and birth.

The Lived Experience of the Adult African American Female Who Has Lived in Multiple Foster Care Placements

ERIC Educational Resources Information Center

Johnson, Avonda C.

2012-01-01

The purpose of the study was to examine and describe the lived experiences of the adult African American woman who had lived in multiple foster care placements. Eleven adult African American women ages 22-25 participated in semi-structured, face-to-face interviews to tell their stories and provide data of the memories of the experience. The…

[Making something more: a nursing student's experiences in nursing care within the family].

PubMed

Neman, F

1999-06-01

This study sought to understand how nursing students experience nursing care in the family context. Phenomenology was used to interpret data collected using interviews with the students. Four themes were uncovered and MAKING SOMETHING MORE emerged as the phenomenon who integrated the motivational situation perceived by the students, their feelings, their actions, and their reflections about the lived experience.

Stakeholders' views on maternity care shortcomings in rural Ghana: An ethnographic study among women, providers, public, and quasiprivate policy sector actors.

PubMed

Ayanore, Martin Amogre; Pavlova, Milena; Biesma, Regien; Groot, Wim

2018-01-01

Access to skilled provider and emergency obstetric care is not universal across all districts in Ghana. The lived experiences of 3 stakeholder groups on maternity care shortcomings in 3 rural Ghanaian districts are examined in this study. We applied an ethnographic study approach where field data were collected between March to May 2015 in 3 rural districts of northern Ghana. Data were collected among women with recent births experiences (n = 90), health care providers (n = 16), and policy actors (n = 6). Transcripts were read through to identify similar and divergent stakeholders' views. Significant expressions and experiences of stakeholders on maternity care shortcomings were extracted and evaluated to define key themes. Four themes emerged: social/community factors, payments for health care, facility level factors, and policy level factors. The results show that traditional women's roles divest time for maternity care. Poor transport arrangements, insufficient health workforce, health funding gaps, insurance reimbursements delays, and catastrophic health expenditures on travel and drugs are attested as major barriers across all stakeholder groups in all districts studied. The discussion of the study findings suggests it is important to ascertain the scale of informal payments and their impacts on health access. Investments in health workforce and reliable ambulatory service systems could help address poor referral difficulties in rural areas of the country. Social support for community initiatives that pool funds could provide extra resources and relieve cost access-related challenges for using maternity care in rural settings in Ghana. Copyright © 2017 John Wiley & Sons, Ltd.

Primary care providers' experiences caring for complex patients in primary care: a qualitative study.

PubMed

Loeb, Danielle F; Bayliss, Elizabeth A; Candrian, Carey; deGruy, Frank V; Binswanger, Ingrid A

2016-03-22

Complex patients are increasingly common in primary care and often have poor clinical outcomes. Healthcare system barriers to effective care for complex patients have been previously described, but less is known about the potential impact and meaning of caring for complex patients on a daily basis for primary care providers (PCPs). Our objective was to describe PCPs' experiences providing care for complex patients, including their experiences of health system barriers and facilitators and their strategies to enhance provision of effective care. Using a general inductive approach, our qualitative research study was guided by an interpretive epistemology, or way of knowing. Our method for understanding included semi-structured in-depth interviews with internal medicine PCPs from two university-based and three community health clinics. We developed an interview guide, which included questions on PCPs' experiences, perceived system barriers and facilitators, and strategies to improve their ability to effectively treat complex patients. To focus interviews on real cases, providers were asked to bring de-identified clinical notes from patients they considered complex to the interview. Interview transcripts were coded and analyzed to develop categories from the raw data, which were then conceptualized into broad themes after team-based discussion. PCPs (N = 15) described complex patients with multidimensional needs, such as socio-economic, medical, and mental health. A vision of optimal care emerged from the data, which included coordinating care, preventing hospitalizations, and developing patient trust. PCPs relied on professional values and individual care strategies to overcome local and system barriers. Team based approaches were endorsed to improve the management of complex patients. Given the barriers to effective care described by PCPs, individual PCP efforts alone are unlikely to meet the needs of complex patients. To fulfill PCP's expressed concepts of optimal care, implementation of effective systemic approaches should be considered.

Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis.

PubMed

Ngwenya, Nothando; Kenten, Charlotte; Jones, Louise; Gibson, Faith; Pearce, Susie; Flatley, Mary; Hough, Rachael; Stirling, L Caroline; Taylor, Rachel M; Wong, Geoff; Whelan, Jeremy

2017-06-01

To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.

[Transition - how adolescents with cystic fibrosis their parents experience the change from paediatric to adult care].

PubMed

Becher, Christine; Regamey, Nicolas; Spichiger, Elisabeth

2014-12-01

Cystic Fibrosis is the most common autosomal-recessive hereditary disease among white Europeans. The average survival of CF patients has increased to above 40 years and transition from paediatric to adult care has therefore become a significant issue. With this study, experiences of adolescents with CF and their parents with the transition from the paediatric to the adult care were explored. At a Swiss university CF centre, six adolescents and their mothers were recruited. Twelve narrative interviews were conducted on how the phase of transition was experienced. The transcribed interviews were analysed according to the method of hermeneutic phenomenology. Positive and negative experiences with long term routine care in the paediatric service, general themes of adolescence and the quality of the relationship with paediatric doctors influenced the families' experience during transition significantly. For mothers, insensitive information on the CF diagnosis might have influenced the transition experience. The adolescents welcomed an individualized and age appropriate care. Continuity in care, the announcement of, and involvement in the planning of the transfer were of great importance. The families particularly appreciated the timed adaptations of the transfer to individual needs. Flexibility and a strong collaboration between paediatric and adult CF teams are most relevant in the care of families.

Home to die from the intensive care unit: A qualitative descriptive study of the family's experience.

PubMed

Hutchinson, Amy L; Van Wissen, Kim A

2017-12-01

Many people would choose to die at home, and this can be an option for intensive care patients. However, there is limited exploration of the impact on the family. To gain insight into family members' experiences when an adult intensive care unit patient is taken home to die. Methodology is qualitative description, utilising purposeful sampling, unstructured interviews and thematic analysis. Four participants, from two different families were interviewed. The setting was a tertiary level Intensive Care Unit in New Zealand. The experience was described as a kaleidoscope of events with two main themes: 'value' family member's found in the patient going home, and their experience of the 'process'. 'Value' subthemes: going home being the patient's own decision, home as an end-of-life environment, and the patient's positive response to being at home. 'Process' subthemes: care and support received, stress of a family member being in intensive care, feeling that everything happened quickly, and concerns and uncertainties. Going home to die from the intensive care unit can be a positive but challenging experience for the family. Full collaboration between the patient, family and staff is essential, to ensure the family are appropriately supported. Copyright © 2017 Elsevier Ltd. All rights reserved.

Access, treatment and outcomes of care: a study of ethnic minorities in Europe.

PubMed

Hanssens, Lise G M; Detollenaere, Jens; Hardyns, Wim; Willems, Sara J T

2016-05-01

Recent research has shown that ethnic minorities still have less access to medical care and are less satisfied with the treatment they receive and the outcomes of the health care process. This article assesses how migrants in Europe experience access, treatment and outcomes in the European health care systems. Data were obtained from the QUALICOPC study (Quality and Costs of Primary Care in Europe). Regression analyses were used to estimate the access, treatment and outcomes of care for ethnic minorities. In several countries, migrants experience that the opening hours of their GP practice were too limited and indicate that the practice was too far away from their work or home (lower access). They are more likely to report negative patient-doctor communication and less continuity of care than native patients (worse treatment). In addition, they are less satisfied with the care they received and are more likely to postpone care (worse outcomes). In general, migrants are still disadvantaged during the health care process. However, our results also indicate that satisfaction with the health care process improves for second-generation migrants in comparison with first-generation migrants.

Cancer patients' respect experiences in relation to perceived communication behaviours from hospital staff: analysis of the 2012-2013 National Cancer Patient Experience Survey.

PubMed

Clucas, Claudine

2016-04-01

Respect experiences are poorly understood despite respect being central to professionalism in health care and patient well-being, and needed for optimal patient care. This study explores which patient-perceived communication behaviours from hospital staff contribute most to cancer patients' respect experiences and account for variation in their experience by socio-demographic and clinical characteristics. We present a secondary analysis of data from the 2012-2013 National Cancer Patient Experience Survey of 45,191 patients with a primary cancer diagnosis treated in English National Health Service trusts providing adult acute cancer services who provided data on experienced respect and dignity. Both autonomy-supportive and caring/emotionally sensitive behaviours were associated with reported respect, although the latter showed stronger associations and accounted for most differences in reports of respect between patient groups. Differences in respect were found by gender, race/ethnicity, age, the presence of long-standing conditions, treatment response, time since first treated for cancer (p < .001), employment and type of cancer (p < .05). The study questions the tendency to conceptualise respect primarily in terms of autonomy-supportive behaviours and shows the relative contribution of autonomy-supportive and caring/emotionally sensitive behaviours in explaining disparities in respect experiences. More attention should be paid to affective communication behaviours from hospital staff to reduce disparities in respect experiences.

A sanctuary of safety: A study of how patients with dual diagnosis experience caring conversations.

PubMed

Priebe, Åsa; Wiklund Gustin, Lena; Fredriksson, Lennart

2018-04-01

The prevalence of dual diagnosis, that is, the combination of psychiatric illnesses and substance use disorders, is high. As a vast majority of previous research in this context focusses on the effects of different treatment methods, rather than interpersonal issues, the purpose of the present study was to explore and illuminate in what way patients with a dual diagnosis experience conversations with nurses in an outpatient clinic to be caring. Five patients were interviewed regarding their experiences of caring conversations. The analysis and interpretation were inspired by a previously-used hermeneutical process. These yielded three themes: (i) reciprocity creates safety and communion; (ii) suffering is made visible and understandable; and (iii) self-esteem is restored. When synthesized, these themes gave rise to a main theme - a sanctuary of safety - where suffering is alleviated and dignity and self-esteem are restored. It is concluded that the caring conversation contributes to experiences of safeness. In this specific context, safety appears to be more fundamental than trust for patients' recoveries. The caring conversation also contributes to recovery, as it supports the individual's learning and understanding as a way to cope with problems, which also enables patients to make informed decisions about their own care. The caring conversation contributes to the alleviation of suffering and restoration of dignity and self-esteem for patients with a dual diagnosis. However, there is a need for further research focussing on how the caring conversation can contribute to psychiatric nurses' caring expertise. © 2017 Australian College of Mental Health Nurses Inc.

The Experience of Psychiatric Care of Adolescents with Anxiety-based School Refusal and of their Parents: A Qualitative Study.

PubMed

Sibeoni, Jordan; Orri, Massimiliano; Podlipski, Marc-Antoine; Labey, Mathilde; Campredon, Sophie; Gerardin, Priscille; Revah-Levy, Anne

2018-01-01

Anxiety-based school refusal in adolescence is a complex, sometimes difficult to treat disorder that can have serious academic and psychiatric consequences. The objective of this qualitative study was to explore how teens with this problem and their parents experience the psychiatric care received. This qualitative multicenter study took place in France, where we conducted semi-structured interviews with adolescents receiving psychiatric care for anxiety-based school refusal and with their parents. Data collection by purposive sampling continued until we reached theoretical sufficiency. Data analysis was thematic. This study included 20 adolescents aged 12 to 18 years and 21 parents. Two themes emerged from the analysis: (1) the goals of psychiatric care with two sub-themes, " self-transformation " and problem solving ; and, (2) the therapeutic levers identified as effective with two sub-themes: time and space and relationships . Our results show a divergence between parents and teens in their representations of care and especially of its goals. Therapeutic and research implications about the terms of return to school within psychiatric care and also the temporality of care are discussed.

End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia - A qualitative study.

PubMed

Ashton, Susan Elizabeth; Roe, Brenda; Jack, Barbara; McClelland, Bob

2016-09-01

End of life decisions for people with advanced dementia are reported as often being difficult for families as they attempt to make appropriate and justified decisions. To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia. Qualitative research including a series of single cases (close family relatives). A purposive sample of 12 family caregivers within a specialist dementia unit was interviewed about their experiences of advance care planning between August 2009 and February 2010. Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life. Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia. © The Author(s) 2014.

Care dependence: a struggle toward moments of respite.

PubMed

Eriksson, Monika; Andershed, Birgitta

2008-08-01

The purpose of this study was to describe people's experiences of being dependent on others for care in their final stage of life, as well as what they felt made their experience of being dependent easier or more difficult. The phenomenological-hermeneutical method was chosen, where data collection consisted of open-ended interviews with nine people undergoing palliative care at a hospice unit or at home. The meaning of being care dependent is described via the following themes: changed relationship with oneself and with others, striving to adapt oneself to the situation, obstacles, and opportunities along the way while dependent. The result is described as an effort, a journey from independence to moments where it was possible to rest and recuperate while struggling with care dependency. Nursing staff require knowledge and understanding of experiences with care dependency to make life easier for people during increasing dependency in the final stage of life.

Relational use of an electronic quality of life and practice support system in hospital palliative consult care: A pilot study.

PubMed

Krawczyk, Marian; Sawatzky, Richard

2018-03-08

This study is part of an overarching research initiative on the development and integration of an electronic Quality of Life and Practice Support System (QPSS) that uses patient-reported outcome and experience measures in clinical practice. The current study focused on palliative nurse consultants trialing the QPSS with older hospitalized adults receiving acute care. The primary aim of the study was to better understand consultants' and patients' experiences and perspectives of use. The project involved two nurse specialists within a larger palliative outreach consult team (POCT) and consenting older adult patients (age 55+) in a large tertiary acute care hospital in western Canada. User-centered design of the QPSS was informed by three focus groups with the entire POCT team, and implementation was evaluated by direct observation as well as interviews with the POCT nurses and three patients. Thematic analysis of interviews and field notes was informed by theoretical perspectives from social sciences. Result Over 9 weeks, the POCT nurses used the QPSS at least once with 20 patients, for a total of 47 administrations. The nurses most often assisted patients in using the QPSS. Participants referenced three primary benefits of relational use: enhanced communication, strengthened therapeutic relations, and cocreation of new insights about quality of life and care experiences. The nurses also reported increased visibility of quality of life concerns and positive development as relational care providers. Significance of results Participants expressed that QPSS use positively influenced relations of care and enhanced practices consistent with person-centered care. Results also indicate that electronic assessment systems may, in some instances, function as actor-objects enabling new knowledge and relations of care rather than merely as a neutral technological platform. This is the first study to examine hospital palliative consult clinicians' use of a tablet-based system for routine collection of patient-reported outcome and experience measures.

Why is there variation in the practice of evidence-based medicine in primary care? A qualitative study

PubMed Central

Hisham, Ranita; Ng, Chirk Jenn; Liew, Su May; Hamzah, Nurazira; Ho, Gah Juan

2016-01-01

Objective To explore the factors, including barriers and facilitators, influencing the practice of evidence-based medicine (EBM) across various primary care settings in Malaysia based on the doctors’ views and experiences. Research design The qualitative study was used to answer the research question. 37 primary care physicians participated in six focus group discussions and six individual in-depth interviews. A semistructured topic guide was used to facilitate both the interviews and focus groups, which were audio recorded, transcribed verbatim, checked and analysed using a thematic approach. Participants 37 primary care doctors including medical officers, family medicine specialists, primary care lecturers and general practitioners with different working experiences and in different settings. Setting The study was conducted across three primary care settings—an academic primary care practice, private and public health clinics in Klang Valley, Malaysia. Results The doctors in this study were aware of the importance of EBM but seldom practised it. Three main factors influenced the implementation of EBM in the doctors’ daily practice. First, there was a lack of knowledge and skills in searching for and applying evidence. Second, workplace culture influenced doctors’ practice of EBM. Third, some doctors considered EBM as a threat to good clinical practice. They were concerned that rigid application of evidence compromised personalised patient care and felt that EBM did not consider the importance of clinical experience. Conclusions Despite being aware of and having a positive attitude towards EBM, doctors in this study seldom practised EBM in their routine clinical practice. Besides commonly cited barriers such as having a heavy workload and lack of training, workplace ‘EBM culture’ had an important influence on the doctors’ behaviour. Strategies targeting barriers at the practice level should be considered when implementing EBM in primary care. PMID:26962037

Postnatal experiences and support needs of first-time mothers in Singapore: a descriptive qualitative study.

PubMed

Ong, Shu Fen; Chan, Wai-Chi Sally; Shorey, Shefaly; Chong, Yap Seng; Klainin-Yobas, Piyanee; He, Hong-Gu

2014-06-01

to explore first-time mothers' postnatal experiences and support needs after hospital discharge in Singapore. a descriptive qualitative study was adopted in this study. Participants were recruited from a public tertiary hospital in Singapore. Semi-structured interviews were used for data collection and the interview transcripts were analysed using thematic analysis. a purposive sample of 13 English-speaking first-time mothers of age 21 years and above were interviewed within 7-11 days after their hospital discharge. five themes emerged from the thematic analysis: (1) mixed emotions: participants experienced anxiety, labile emotions and stress over infant care; (2) breast feeding concerns: low breast milk supply and physical discomfort; (3) social support: many participants had sufficient social support from family members except their husbands; (4) cultural postnatal practice: majority of participants followed traditional postnatal practices of their culture; and (5) professional support needs: participants needed more information, access to health care services and continuity of care. this study highlighted the importance of providing professional postnatal care to first-time mothers after their discharge from the hospital. Future studies are needed to explore new practices that will enhance the quality of maternity health care and promote positive maternal experiences and well-being in Singapore. there is a need for more innovative advertisement to promote antenatal classes and improve attendance rate. Health care providers should assist women in establishing proper breast feeding techniques. Alternative models of care in the postnatal period, such as midwifery-led care, could facilitate a more woman-centred approach. Postnatal home visits may be considered within the first week of the mothers' hospital discharge, which may be legislated by public health care policies. © 2013 Elsevier Ltd. All rights reserved.

African and Black Caribbean origin cancer survivors: a qualitative study of the narratives of causes, coping and care experiences.

PubMed

Bache, Richard A; Bhui, Kamaldeep S; Dein, Simon; Korszun, Ania

2012-01-01

Although there is evidence in the U.S.A. and U.K. to suggest that ethnic minority groups have an inferior experience of cancer care, few studies investigate ethnic disparities in satisfaction and care experiences among survivors. Patients' illness perceptions (lay explanations for illness) and coping styles (emotional and behavioural) are influenced by ethnicity-related cultural beliefs and expectations. Depressive illness or fears of recurrence of cancer may also lead to poorer recovery and function. This paper investigates whether ethnic influences explain different coping behaviours, care experiences and help-seeking behaviours. Eight participants of African or Black Caribbean origin were recruited from a London support group for a series of qualitative in-depth interviews. The interviews were recorded and transcribed, and the transcripts analysed using a framework method of qualitative data analysis. The emergent themes were tested and documented to reflect the issues of importance to patients. Lay explanations of causes of cancer were complex and diverse reflecting cultural influences and the impact of contact with health professionals. Generally, positive views about cancer care were found, especially at the secondary care level. Primary care attracted mixed views. In contrast to American studies, no acknowledgement of discrimination on the basis of ethnicity was reported. The need to be resilient and think positively were widely acknowledged as coping strategies. Some coped by avoiding contemplation of their condition or diagnosis. Religious beliefs and practices provided coping mechanisms for some, and a means to improve confidence and avoid distressing contemplation about their condition. Family, friends and charitable groups also provided emotional and practical support. Subjects were generally satisfied with their care; different coping styles included positive attitudes, minimisation of difficulties or more realistic consideration of the impact of cancer.

Patients' experiences and care needs during the diagnostic phase of an Integrated Brain Cancer Pathway: A Case Study.

PubMed

Vedelø, Tina Wang; Sørensen, Jens Christian Hedemann; Delmar, Charlotte

2018-03-31

To identify and describe patients' experiences and care needs throughout the diagnostic phase of an Integrated Brain Cancer Pathway. A malignant brain tumour is a devastating diagnosis, which may cause psychical symptoms and cognitive deficits. Studies have shown that the shock of the diagnosis, combined with the multiple symptoms, affect patients' ability to understand information and express needs of care and support. Unmet needs have been reported within this group of patients, however, the experiences and care needs of patients going through the diagnostic phase of a standardised Integrated Brain Cancer Pathway have not previously been explored. A Case Study design was used to provide detailed information of the complex needs of patients being diagnosed with a malignant brain tumour. Research interviews and direct participant observation of four patients during hospital admission, brain surgery and discharge were conducted in a Danish university hospital. Systematic text condensation was used to analyse the data material. Four major themes were identified: information needs, balancing hope and reality while trying to perceive the unknown reality of brain cancer, not knowing what to expect and participants' perceptions of the relationship with the health care providers. The analysis revealed that participants were in risk of having unmet information needs and that contextual factors seemed to cause fragmented care that led to feelings of uncertainty and loss of control. Brain tumour patients have complex care needs and experience a particular state of vulnerability during the diagnostic phase. Through personal relationships based on trust with skilled health care providers, participants experienced an existential recognition and alleviation of emotional distress. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Rural patients’ experiences accessing surgery in British Columbia

PubMed Central

Humber, Nancy; Dickinson, Paul

2010-01-01

Background More than 33% of Canadians live in rural areas. The vulnerability of rural surgical patients makes them particularly sensitive to barriers to accessing health care. This study aims to describe rural patients’ experiences accessing local non-specialist, family physician–surgeon care and regional specialist surgical care when no local surgical care was available. Methods We conducted a qualitative pilot study of self-selected patients. Interviews were analyzed using a modified Delphi technique and NVivo qualitative software. Results The needs of rural surgical patients were reflective of Maslow’s hierarchy of needs: physiologic, safety and security, community belonging and self-esteem/self-actualization. Rural patients expressed a strong desire for individualized care in a familiar environment. When such care was not available, patients found it difficult to meet even basic physiologic needs. Maternity patients and marginalized populations were particularly vulnerable. Conclusion Rural patients seem to prefer individualized care in a familiar environment to address more of their qualitative emotional, psychological and cultural needs rather than only the physiologic needs of surgery. Larger studies are needed to delineate more clearly the qualitative aspects of surgical care. PMID:21092429

Improving mental health service users' with medical co-morbidity transition between tertiary medical hospital and primary care services: a qualitative study.

PubMed

Cranwell, Kate; Polacsek, Meg; McCann, Terence V

2016-07-26

Mental health service users have high rates of medical co-morbidity but frequently experience problems accessing and transitioning between tertiary medical and primary care services. The aim of this study was to identify ways to improve service users' with medical co-morbidity care and experience during their transition between tertiary medical hospitals and primary care services. Experience-based co-design (EBCD) qualitative study incorporating a focus group discussion. The study took place in a large tertiary medical service, incorporating three medical hospitals, and primary care services, in Melbourne, Australia. A purposive sample of service users and their caregivers and tertiary medical and primary care clinicians participated in the focus group discussion, in August 2014. A semi-structured interview guide was used to inform data collection. A thematic analysis of the data was undertaken. Thirteen participants took part in the focus group interview, comprising 5 service users, 2 caregivers and 6 clinicians. Five themes were abstracted from the data, illustrating participants' perspectives about factors that facilitated (clinicians' expertise, engagement and accessibility enhancing transition) and presented as barriers (improving access pathways; enhancing communication and continuity of care; improving clinicians' attitudes; and increasing caregiver participation) to service users' progress through tertiary medical and primary care services. A sixth theme, enhancing service users' transition, incorporated three strategies to enhance their transition through tertiary medical and primary care services. EBCD is a useful approach to collaboratively develop strategies to improve service users' with medical co-morbidity and their caregivers' transition between tertiary medical and primary care services. A whole-of-service approach, incorporating policy development and implementation, change of practice philosophy, professional development education and support for clinicians, and acceptance of the need for caregiver participation, is required to improve service users' transition.

Lived experience of women with gestational diabetes mellitus living in China: a qualitative interview study

PubMed Central

Ge, Li; Wikby, Kerstin; Rask, Mikael

2017-01-01

Objective To explore the lived experience of women with gestational diabetes mellitus (GDM) living in China in order to add knowledge about how the Chinese women suffer from GDM. Design A qualitative interpretive interview study. Data were collected with a snowball sampling technique. Phenomenological hermeneutics was used as the analysis method based on Ricoeur’s phenomenological hermeneutical interpretation theory. Setting The study was performed at the participants’ work places, or at the obstetric clinics or wards at two provincial hospitals and one municipal hospital in the southeast of China. Participants Inclusion criteria were age ≥18 years, diagnosis of GDM without other pregnancy complications, in 34th gestational weeks—postpartum 4th weeks and speaking Mandarin Chinese without speech impediment. 62 women, who met the inclusion criteria, took part in the study. Results The lived experience of the women with GDM living in China was formulated into a main theme: ‘longing for caring care’. The main theme was derived from four themes: being stricken by GDM, wishing to receive caring GDM care, being left alone to struggle with GDM and trying to adjust and adapt to life with GDM. Conclusion The eagerness for caring care in China was highlighted. The lack of caring care could be one of the possible reasons why the professional–patient relations were deteriorating in China. It could be useful for health providers and health policymakers to receive education and training about caring care. Using the health metaphor of balance and ‘patient participation’ and ‘patient-centred’ approaches may benefit women with GDM and thus improve the quality of care in China. PMID:29187411

"Fighting the system": Families caring for ventilator-dependent children and adults with complex health care needs at home

PubMed Central

2011-01-01

Background An increasing number of individuals with complex health care needs now receive life-long and life-prolonging ventilatory support at home. Family members often take on the role of primary caregivers. The aim of this study was to explore the experiences of families giving advanced care to family members dependent on home mechanical ventilation. Methods Using qualitative research methods, a Grounded Theory influenced approach was used to explore the families' experiences. A total of 15 family members with 11 ventilator-dependent individuals (three children and eight adults) were recruited for 10 in-depth interviews. Results The core category, "fighting the system," became the central theme as family members were asked to describe their experiences. In addition, we identified three subcategories, "lack of competence and continuity", "being indispensable" and "worth fighting for". This study revealed no major differences in the families' experiences that were dependent on whether the ventilator-dependent individual was a child or an adult. Conclusions These findings show that there is a large gap between family members' expectations and what the community health care services are able to provide, even when almost unlimited resources are available. A number of measures are needed to reduce the burden on these family members and to make hospital care at home possible. In the future, the gap between what the health care can potentially provide and what they can provide in real life will rapidly increase. New proposals to limit the extremely costly provision of home mechanical ventilation in Norway will trigger new ethical dilemmas that should be studied further. PMID:21726441

Gender Differences in Spousal Caregiving in Japan

PubMed Central

Ito, Mikiko; Kutsumi, Masami; Mikami, Hiroshi

2009-01-01

Background Gender differences in spousal caregivers and their relationship to care experiences, social demographics, and caregivers’ depression were examined. Methods A stratified random sample of 2,020 users of public long-term care insurance in a city of Osaka prefecture, Japan, participated in this study. Responses from 308 spouses (56.2% wives, 43.8% husbands) were analyzed. Variables relating to care experiences, social demographics, and caregivers’ depression were compared by conducting simultaneous analyses of multiple populations. Results Wives caring for husbands had higher depression scores than husbands caring for wives. Wives tended to adopt “emotional support seeking” and “willing commitment” as coping strategies for their caregiving experience. Husband caregivers used more home-care services; however, increased service use had no effect on husbands’ depression. The availability of secondary caregivers reduced depression for caregivers, regardless of gender. Conclusions The effects on depression differed related to the caregiver's gender. Husbands relied more on family or home-care services when caring for their wives, whereas wives provided higher levels of care, positively accepted their role, and did not seek to share caregiving, but sought emotional support. PMID:19176486

Gender differences in spousal caregiving in Japan.

PubMed

Sugiura, Keiko; Ito, Mikiko; Kutsumi, Masami; Mikami, Hiroshi

2009-01-01

Gender differences in spousal caregivers and their relationship to care experiences, social demographics, and caregivers' depression were examined. A stratified random sample of 2,020 users of public long-term care insurance in a city of Osaka prefecture, Japan, participated in this study. Responses from 308 spouses (56.2% wives, 43.8% husbands) were analyzed. Variables relating to care experiences, social demographics, and caregivers' depression were compared by conducting simultaneous analyses of multiple populations. Wives caring for husbands had higher depression scores than husbands caring for wives. Wives tended to adopt "emotional support seeking" and "willing commitment" as coping strategies for their caregiving experience. Husband caregivers used more home-care services; however, increased service use had no effect on husbands' depression. The availability of secondary caregivers reduced depression for caregivers, regardless of gender. The effects on depression differed related to the caregiver's gender. Husbands relied more on family or home-care services when caring for their wives, whereas wives provided higher levels of care, positively accepted their role, and did not seek to share caregiving, but sought emotional support.

Experiences with Health Insurance and Health Care in the Context of Welfare Reform.

PubMed

Narain, Kimberly Danae; Katz, Marian Lisa

2016-11-20

Studies have shown that in the wake of welfare reform there has been a drop in the health insurance coverage and health care utilization of low-income mothers. Using data from 20 telephone interviews, this study explored the health insurance and health care experiences of current and former welfare participants living in Los Angeles County. This study found that half of these women had been uninsured at some point. Many of these lapses in health insurance coverage were linked to employment transitions and lack of knowledge regarding eligibility for different safety net programs. This study also found that satisfaction with access to health care was high among the insured respondents; however, barriers to care remained for many individuals, including appointment scheduling issues, limited scope of health insurance coverage, narrow provider networks, lack of care continuity, and perceived low quality of care. Better linkages between social programs assisting with health insurance coverage and improved knowledge among program clients may reduce health insurance cycling in this group. New rules for Medicaid managed care, currently being considered by the Centers for Medicare and Medicaid Services, have the potential to improve access to health care and the quality of care for these individuals. © 2016 National Association of Social Workers.

Parental experiences of providing skin-to-skin care to their newborn infant—Part 1: A qualitative systematic review

PubMed Central

Anderzén-Carlsson, Agneta; Lamy, Zeni Carvalho; Eriksson, Mats

2014-01-01

Aim To describe parental experiences of providing skin-to-skin care (SSC) to their newborn infants. Background SSC care for newborn infants has been reported to have positive physiological and psychological benefits to the infants and their parents. No systematic review regarding parental experiences has been identified. Design In this first part of a meta-study, the findings of a systematic literature review on parental experience of SSC care are presented. Data sources Four databases were searched, without year or language limitations, up until December 2013. Manual searches were performed in reference lists and in a bibliography of the topic. Review methods After a quality-appraisal process, data from the original articles were extracted and analysed using qualitative content analysis. Results The systematic and manual searches led to the inclusion of 29 original qualitative papers from nine countries, reporting experiences from 401 mothers and 94 fathers. Two themes that characterized the provision of SSC emerged: a restoring experience and an energy-draining experience. Conclusion This review has added scientific and systematic knowledge about parental experiences of providing SSC. Further research about fathers’ experiences is recommended. PMID:25319746

Death Attitudes Among Middle-Aged Koreans: Role of End-of-Life Care Planning and Death Experiences

PubMed Central

Hong, Michin; Hong, Seunghye; Adamek, Margaret E.; Kim, Mee Hye

2017-01-01

The purpose of this study was to examine factors affecting death attitudes among middle-aged Koreans. In addition, the study explored the interaction effect between knowledge about end-of-life care planning and the experience of death of family or friends on death attitudes. The sample was obtained from a national survey with middle-aged adults in South Korea (n = 2,026). Multivariate regression analysis revealed significant main effects and an interaction effect between knowledge about end-of-life care planning and the experience of death on death attitudes. Greater knowledge of end-of-life care planning was associated with more positive attitudes toward death; however, the effect was stronger for those who had not experienced the death of family or friends. Being older and having greater life satisfaction were also associated with more positive attitudes toward death. This study suggests that end-of-life education can help middle-aged adults embrace the final stage of life and prepare for their own death. PMID:28105867

Death Attitudes Among Middle-Aged Koreans: Role of End-of-Life Care Planning and Death Experiences.

PubMed

Hong, Michin; Hong, Seunghye; Adamek, Margaret E; Kim, Mee Hye

2018-01-01

The purpose of this study was to examine factors affecting death attitudes among middle-aged Koreans. In addition, the study explored the interaction effect between knowledge about end-of-life care planning and the experience of death of family or friends on death attitudes. The sample was obtained from a national survey with middle-aged adults in South Korea ( n = 2,026). Multivariate regression analysis revealed significant main effects and an interaction effect between knowledge about end-of-life care planning and the experience of death on death attitudes. Greater knowledge of end-of-life care planning was associated with more positive attitudes toward death; however, the effect was stronger for those who had not experienced the death of family or friends. Being older and having greater life satisfaction were also associated with more positive attitudes toward death. This study suggests that end-of-life education can help middle-aged adults embrace the final stage of life and prepare for their own death.

Patients' experiences related to anti-viral treatment for hepatitis C.

PubMed

Fraenkel, Liana; McGraw, Sarah; Wongcharatrawee, Suchat; Garcia-Tsao, Guadalupe

2006-07-01

To conduct a qualitative study to elicit patients' descriptions of their own experiences with treatment for hepatitis C (HCV). Focus groups were conducted until thematic saturation was reached. A total of 40 patients (80% male) participated in eight focus groups. The themes that emerged most frequently during the focus groups centered on adverse effects and quality of care. The discussions highlighted discrepancies between patients' anticipated effects of drug toxicity versus their actual experiences, gaps in communication between physicians, and the lack of social support as important shortcomings in the healthcare of HCV patients. The issues raised by the participants in this study highlight several important areas that may lead to improved care for patients with HCV. This study suggests that care for patients with HCV might be improved by using patient testimonials to improve accuracy of expectations, having both the primary care physician and liver specialist devise a plan to treat symptoms arising during the course of therapy, and ensuring that patients have the option of participating in a support group.

A Look at Person- and Family-Centered Care Among Older Adults: Results from a National Survey [corrected].

PubMed

Wolff, Jennifer L; Boyd, Cynthia M

2015-10-01

Person-centered and family-centered care represents the pinnacle of health care quality, but delivering it is challenging, as is assessing whether it has occurred. Prior studies portray older adults as passive in health decisions and burdened by care-but emphasize age-based differences or focus on vulnerable subgroups. We aimed to examine domains of person-centered and family-centered care among older adults and whether the social context in which older adults manage their health relates to preferences for participating in health decisions and experiences with care. This was an observational study of a nationally representative survey of adults aged 65+ years, conducted in concert with the 2012 National Health and Aging Trends Study (n = 2040). Approach to managing health (self-manage, co-manage, delegate); preferences for making health care decisions with: (1) doctors, (2) family/close friends; and experiences with care pertaining to treatment burden were measured. Approximately two-thirds of older adults self-manage (69.4 %) and one-third co-manage (19.6 %) or delegate (11.0 %) health care activities. The majority prefer an independent or shared role when making health decisions with doctors (84.7 %) and family/close friends (95.9 %). Nearly four in ten older adults (37.9 %) experience treatment burden-that managing health care activities are sometimes or often hard for either them or their family/close friends, that health care activities get delayed or don't get done, or that they are cumulatively too much to do. Relative to older adults who self-manage, those who delegate health care activities are more likely to prefer to share or leave health decisions to doctors (aOR = 1.79 (95 % CI, 1.37-2.33) and family/close friends (aOR = 3.12 (95 % CI, 2.23-4.36), and are more likely to experience treatment burden (aOR = 2.37 (95 % CI, 1.61-3.47). Attaining person-centered and family-centered care will require strategies that respect diverse decision-making preferences, minimize treatment burden, and support the broader social context in which older adults manage their health.

"A Second Chance at Learning but It's Not Quite Higher Education": Experience of a Foundation Degree

ERIC Educational Resources Information Center

Fenge, Lee-Ann

2011-01-01

This paper reports on the findings of a recent small scale study into the experiences of mature students of a foundation degree (FD) in health and social care. This was an exploratory study that evaluated one particular FD health and social care programme in order to gain an insight into some of the issues involved in delivering higher education…

First-Time Knowledge Brokers in Health Care: The Experiences of Nurses and Allied Health Professionals of Bridging the Research-Practice Gap

ERIC Educational Resources Information Center

Wright, Nicola

2013-01-01

This study describes the experiences of nurses and allied health professionals as first-time knowledge brokers, attempting to bridge the research-practice gap within health care. A qualitative study using in-depth interviews and documentary analysis was conducted. The data was analysed using a thematic analysis strategy. Participants were 17…

Family Experiences of Transition from Child Care to School.

ERIC Educational Resources Information Center

Elliott, Alison

A study traced the experiences of Australian working families as their children started formal schooling. Each family faced the prospect of moving their child or children from the intimate environment of a child care center that operated from 8 a.m. to 6 p.m. to a large elementary school with a 9 a.m. to 3 p.m. school day. The study focused on:…

Stroke survivors' experiences of the fundamentals of care: a qualitative analysis.

PubMed

Kitson, Alison L; Dow, Clare; Calabrese, Joseph D; Locock, Louise; Muntlin Athlin, Åsa

2013-03-01

Managing the fundamentals of care (e.g. elimination, personal hygiene, eating,) needs to be more explicitly addressed within the patient-centred care discourse. It is not possible to investigate issues of patient dignity and respect without acknowledging these basic physical needs. While the literature on caring for people with a stroke is extensive, no studies to date have described stroke survivors' experiences of all of these fundamentals during the in-hospital phase of their care. Secondary analysis of qualitative data grounded in interpretative phenomenology Participants and settings: Fifteen stroke survivors with in-hospital experiences from multiple healthcare settings and healthcare professionals across the United Kingdom were included. A secondary thematic analysis of primary narrative interview data from stroke survivors. Survivors of strokes have vivid and often distressing recollections of their experiences of the fundamentals of care. For every description of a physical need (elimination, eating and drinking, personal hygiene) there where lucid accounts of the psychosocial and emotional impact (humiliation, distress, lack of dignity, recovery, confidence). Linked to the somatic and emotional dimensions were narratives around the relationship between the patient and the carer (nurse, doctor, allied health professional). Positive recollections of the fundamentals of care were less evident than more distressing experiences. Consistent features of positive experiences included: stroke survivors describing how the physical, psychosocial and relational dimensions of care were integrated and coordinated around their particular need. They reported feeling involved in setting achievable targets to regain control of their bodily functions and regain a sense of personal integrity and sense of self. Sociological constructs such as biographical disruption and loss of self were found to be relevant to stroke survivors' experiences. Indeed, such constructs may be more linked to the disruption of such fundamental activities rather than the experience of the illness itself. We recommend more practical and integrated approaches be taken around understanding and meeting the physical, psychosocial and relational needs of patients in hospital which could lead to more patient-centred care experiences. These three dimensions need to co-exist in every care episode. More exploration is required to identify the common fundamentals of care needs of patients regardless of illness experience. Copyright © 2012 Elsevier Ltd. All rights reserved.

A feminist narrative study of the maternity care experiences of women who were sexually abused in childhood.

PubMed

Montgomery, Elsa; Pope, Catherine; Rogers, Jane

2015-01-01

One in five women experience childhood sexual abuse and these women may suffer trauma during childbirth. Their maternity care is often reminiscent of their abuse. To inform practice by exploring the impact that childhood sexual abuse has on the maternity care experiences of adult women. This was a narrative study from a feminist perspective. The part of the study reported here utilised in-depth interviews with women. Data were analysed using the Voice-Centred Relational Method of analysis and further thematic analysis. Users of one maternity service in the South of England Nine women were interviewed following purposive sampling. The main themes identified were women's narratives of self, women's narratives of relationship, women's narratives of context and the childbirth journey. The concept of silence linked all these themes and aspects of the study relating to it are reported here. Every day midwives will encounter women who were sexually abused in childhood. Most of these women do not disclose to those caring for them and may not respond to a direct question. They will not necessarily be distinguishable from other women accessing maternity services but they may find their experiences deeply traumatic. Silence is a challenge for those providing their care. Open communication and a genuine interest in women as individuals are required. Midwives need to listen for the unspoken messages women are trying to convey. If all women were treated with dignity and respect more may emerge from the experience of childbirth feeling empowered rather than violated. Copyright © 2014 Elsevier Ltd. All rights reserved.

The influence of registered nurses and nurse practitioners on patient experience with primary care: results from the Canadian QUALICO-PC study.

PubMed

Ammi, Mehdi; Ambrose, Sarah; Hogg, Bill; Wong, Sabrina

2017-12-01

Nurses, whether registered nurses (RNs) or nurse practitioners (NPs), are becoming key providers of primary care services. While evidence for the influence of NPs on patient experience in primary care is mounting, this is less so for RNs. We use the Canadian component of the international Quality and Costs of Primary Care 2013/14 survey to investigate the mechanisms by which nurses can affect patients' experience in primary care, focusing on accessibility and appropriateness of care. The data allow us to distinguish between family practice RNs, specialised RNs and NPs, and covers all types of patients visiting a primary care clinic in a variety of contexts in all Canadian provinces. In addition to the types of nurses and full-time equivalent (FTE) numbers, we explore the role of nurse autonomy and collaboration. Our regression results show that one of the most important predictors of patient experience is the collaboration between health professionals, whereas nurse staffing in terms of FTE numbers has little influence by itself. Different types of nurses influence different dimensions of accessibility, and the association between patient experience and nurse staffing depends on the number of physicians in the clinic. Our results can inform decision-makers on how to strengthen primary care provision, and particularly in Canadian context, the adaptation of the recently implemented interprofessional primary care teams. Copyright © 2017 Elsevier B.V. All rights reserved.

What Matters Most to Whom: Racial, Ethnic, and Language Differences in the Health Care Experiences Most Important to Patients.

PubMed

Collins, Rebecca L; Haas, Ann; Haviland, Amelia M; Elliott, Marc N

2017-11-01

Some aspects of patient experience are more strongly related to overall ratings of care than others, reflecting their importance to patients. However, little is known about whether the importance of different aspects of this experience differs across subgroups. To determine whether the aspects of health care most important to patients differ according to patient race, ethnicity, and language preference. In response to the 2013 Medicare Consumer Assessment of Health Plans Study (CAHPS) survey, patients rated their overall health care and completed items measuring five patient experience domains. We estimated a linear regression model to assess associations between overall rating of care and the 5 domains, testing for differences in these relationships for race/ethnicity/language groups, controlling for covariates. In total 242,782 Medicare beneficiaries, age 65 years or older. Overall rating of health care, composite patient experience scores for: doctor communication, getting needed care, getting care quickly, customer service, and care coordination. A joint test of the interactions between the composite scores and the 5 largest racial/ethnic/language subgroups was statistically significant (P <0.0001), suggesting the importance of domains varied across subgroups. Doctor communication had the strongest relationship with care ratings for non-Hispanic whites and English-preferring Hispanics. Getting needed care had the strongest relationship for Spanish-preferring Hispanics and Asian/Pacific Islanders. Doctor communication and getting care quickly were strongest for African Americans. Tailoring quality improvement programs to the factors most important to the racial, ethnic, and language mix of the patient population of the practice, hospital, or plan may more efficiently reduce disparities and improve quality.

The care of patients assessed as not in need of emergency ambulance care - Registered nurses' lived experiences.

PubMed

Barrientos, Christian; Holmberg, Mats

2018-05-01

The aim of this study was to describe the care of patients assessed as not in need of emergency ambulance care, from Registered Nurse's lived experiences. Non-emergency patients in need of ambulance care are described as vulnerable and patients in ambulance care have earlier been found to be dependent on the Registered Nurse. However, little is known about the care of non-emergency patients in the ambulance setting, from the perspective of Registered Nurses. A reflective lifeworld research design was chosen. Five Registered Nurses with experience of ambulance care were individually interviewed. The result reveals the essence of the phenomenon as a desire to provide good care in an on-going struggle between one's own and others' expectations. Three meaning constituents emerged in the description; Being in a struggle between different expectations, Being in a questioned professional role, and Being in lack of support and formal directives. Registered Nurses' care for patients assessed as not in need of emergency ambulance care, is a complex struggle between different expectations. This may be related to the encounter between the nurse's and the patient's lifeworld. Copyright © 2018 Elsevier Ltd. All rights reserved.

Moments of homecoming among people with advanced dementia disease in a residential care facility.

PubMed

Norberg, Astrid; Ternestedt, Britt-Marie; Lundman, Berit

2017-07-01

This study concerns moments of homecoming among people with advanced dementia disease living in a residential care facility. Our main finding from participant observations with nine residents was that the residents showed moments of homecoming, i.e. they alternated between verbal and/or nonverbal expressions of feeling at home and of not feeling at home. If care providers understand that they can help people with advanced dementia disease experience moments of homecoming, they can focus on aspects of care that can promote these experiences.

Parents' experiences of neonatal transfer. A meta-study of qualitative research 2000-2017.

PubMed

Aagaard, Hanne; Hall, Elisabeth O C; Ludvigsen, Mette S; Uhrenfeldt, Lisbeth; Fegran, Liv

2018-02-15

Transfers of critically ill neonates are frequent phenomena. Even though parents' participation is regarded as crucial in neonatal care, a transfer often means that parents and neonates are separated. A systematic review of the parents' experiences of neonatal transfer is lacking. This paper describes a meta-study addressing qualitative research about parents' experiences of neonatal transfer. Through deconstruction and reflections of theories, methods, and empirical data, the aim was to achieve a deeper understanding of theoretical, empirical, contextual, historical, and methodological issues of qualitative studies concerning parents' experiences of neonatal transfer over the course of this meta-study (2000-2017). Meta-theory and meta-method analyses showed that caring, transition, and family-centered care were main theoretical frames applied and that interviewing with a small number of participants was the preferred data collection method. The meta-data-analysis showed that transfer was a scary, unfamiliar, and threatening experience for the parents; they were losing familiar context, were separated from their neonate, and could feel their parenthood disrupted. We identified 'wavering and wandering' as a metaphoric representation of the parents' experiences. The findings add knowledge about meta-study as an approach for comprehensive qualitative research and point at the value of meta-theory and meta-method analyses. © 2018 John Wiley & Sons Ltd.

Therapeutic Observation of an Infant in Foster Care

ERIC Educational Resources Information Center

Wakelyn, Jenifer

2011-01-01

The paper describes a clinical research study of therapeutic observation of an infant in foster care. Infants and children under five represent more than half of all children entering care in the UK. The emotional needs of this population tend to be overlooked. This study aimed to find out about the experience of an infant or young child in care,…

Congenitally Deaf Children's Care Trajectories in the Context of Universal Neonatal Hearing Screening: A Qualitative Study of the Parental Experiences

ERIC Educational Resources Information Center

Hardonk, Stefan; Desnerck, Greetje; Loots, Gerrit; Van Hove, Geert; Van Kerschaver, Erwin; Sigurjonsdottir, Hanna Bjorg; Vanroelen, Christophe; Louckx, Fred

2011-01-01

The objective of this study is to examine the early care trajectories of congenitally deaf children from a parental perspective, starting with universal neonatal hearing screenings. The analysis using a three-dimensional care trajectory concept is aimed at developing a basic typology of postscreening care trajectories. Children with…

Fear and overprotection in Australian residential aged-care facilities: The inadvertent impact of regulation on quality continence care.

PubMed

Ostaszkiewicz, Joan; O'Connell, Beverly; Dunning, Trisha

2016-06-01

Most residents in residential aged-care facilities are incontinent. This study explored how continence care was provided in residential aged-care facilities, and describes a subset of data about staffs' beliefs and experiences of the quality framework and the funding model on residents' continence care. Using grounded theory methodology, 18 residential aged-care staff members were interviewed and 88 hours of field observations conducted in two facilities. Data were analysed using a combination of inductive and deductive analytic procedures. Staffs' beliefs and experiences about the requirements of the quality framework and the funding model fostered a climate of fear and risk adversity that had multiple unintended effects on residents' continence care, incentivising dependence on continence management, and equating effective continence care with effective pad use. There is a need to rethink the quality of continence care and its measurement in Australian residential aged-care facilities. © 2015 AJA Inc.

Maternity-care: measuring women's perceptions.

PubMed

Clark, Kim; Beatty, Shelley; Reibel, Tracy

2016-01-01

Achieving maternity-care outcomes that align with women's needs, preferences and expectations is important but theoretically driven measures of women's satisfaction with their entire maternity-care experience do not appear to exist. The purpose of this paper is to outline the development of an instrument to assess women's perception of their entire maternity-care experience. A questionnaire was developed on the basis of previous research and informed by a framework of standard service quality categories covering the spectrum of typical consumer concerns. A pilot survey with a sample of 195 women who had recent experience of birth was undertaken to establish valid and reliable scales pertaining to different stages of maternity care. Exploratory factor analysis was used to interpret scales and convergent validity was assessed using a modified version of the Client Satisfaction Questionnaire. Nine theoretically informed, reliable and valid stand-alone scales measuring the achievement of different dimensions of women's expectancies of public maternity care were developed. The study scales are intended for use in identifying some potential areas of focus for quality improvement in the delivery of maternity care. Reliable and valid tools for monitoring the extent to which services respond to women's expectations of their entire maternity care form part of the broader toolkit required to adequately manage health-care quality. This study offers guidance on the make-up of such tools. The scales produced from this research offer a means to assess maternity care across the full continuum of care and are brief and easy to use.

Social workers' involvement in advance care planning: a systematic narrative review.

PubMed

Wang, Chong-Wen; Chan, Cecilia L W; Chow, Amy Y M

2017-07-10

Advance care planning is a process of discussion that enables competent adults to express their wishes about end-of-life care through periods of decisional incapacity. Although a number of studies have documented social workers' attitudes toward, knowledge about, and involvement in advance care planning, the information is fragmented. The purpose of this review was to provide a narrative synthesis of evidence on social workers' perspectives and experiences regarding implementation of advance care planning. Six databases were searched for peer-reviewed research papers from their respective inception through December 2016. All of the resulting studies relevant to both advance care planning and social worker were examined. The findings of relevant studies were synthesized thematically. Thirty-one articles met the eligibility criteria. Six research themes were identified: social workers' attitudes toward advance care planning; social workers' knowledge, education and training regarding advance care planning; social workers' involvement in advance care planning; social workers' perceptions of their roles; ethical issues relevant to advance care planning; and the effect of social work intervention on advance care planning engagement. The findings suggest that there is a consensus among social workers that advance care planning is their duty and responsibility and that social workers play an important role in promoting and implementing advance care planning through an array of activities. This study provides useful knowledge for implementing advance care planning through illustrating social workers' perspectives and experiences. Further studies are warranted to understand the complexity inherent in social workers' involvement in advance care planning for different life-limiting illnesses or within different socio-cultural contexts.

Secondary Traumatic Stress in NICU Nurses: A Mixed-Methods Study.

PubMed

Beck, Cheryl Tatano; Cusson, Regina M; Gable, Robert K

2017-12-01

Secondary traumatic stress is an occupational hazard for healthcare providers who care for patients who have been traumatized. This type of stress has been reported in various specialties of nursing, but no study to date had specifically focused on neonatal intensive care unit (NICU) nurses. (1) To determine the prevalence and severity of secondary traumatic stress in NICU nurses and (2) to explore those quantitative findings in more depth through nurses' qualitative descriptions of their traumatic experiences caring for critically ill infants in the NICU. Members of NANN were sent e-mails with a link to the electronic survey. In this mixed-methods study, a convergent parallel design was used. Neonatal nurses completed the Secondary Traumatic Stress Scale (STSS) and then described their traumatic experiences caring for critically ill infants in the NICU. SPSS version 24 and content analysis were used to analyze the quantitative and qualitative data, respectively. In this sample of 175 NICU nurses, 49% of the nurses' scores on the STSS indicated moderate to severe secondary traumatic stress. Analysis of the qualitative data revealed 5 themes that described NICU nurses' traumatic experiences caring for critically ill infants. NICU nurses need to know the signs of secondary traumatic stress that they may experience caring for their critically ill infants. Avenues for dealing with the stress should be provided. Future research with a higher response rate to increase the external validity of the findings to the population of neonatal nurses is needed.

[Pilot-experience in home care: bedridden aged patients of a basic health unit, Porto Alegre, Brazil].

PubMed

Marques, Giselda Quintana; Freitas, Ivani Bueno de Almeida

2009-12-01

The objectives of this study were to describe the development of a pilot-project in home care to bedridden aged patients at a Basic Health Unit, and identify demographic, social and health aspects of these patients, as well as relevant aspects reported by the health team that implemented the home care. The study had descriptive and evaluative characteristics. The patients' enrollment forms and health records and the project's records were analyzed. The pilot-experience permitted to develop the team's skills, in addition to being enriching and of great responsibility for the professionals and caregivers involved. The results indicated the need for continuous home care and adjustments in its organization with the purpose of increasing the areas for health care and improving the population's quality of life.

Transitions of Care Model Inclusive of Unplanned Care Improves the Patient Experience

PubMed Central

Cox, Jon; Teague, Stephanie; Beck, Eric

2016-01-01

A major emphasis in health care is creating an experience whereby patients receive the right care at the right time from the right provider in the right setting at the right cost. Over the past several decades, there has been considerable effort in the area of medical management, with prior authorization, gatekeeper utilization management regimens, and other techniques designed to guide patients and caregivers into desired treatment pathways. Alternatively, the concept of demand management may be employed to achieve these desired outcomes by giving patients meaningful, expanded choices beyond traditional acute-care settings. The implementation of a novel, patient-centered, unplanned care delivery model is described along with illustrative case studies. PMID:28725828

Away from home: experiences of Mexican American families in pediatric palliative care.

PubMed

Contro, Nancy; Davies, Betty; Larson, Judith; Sourkes, Barbara

2010-01-01

In this study, the authors describe the experiences of Mexican American family members who immigrated to the United States and then experienced the death of a child. Participants described difficulties they encountered crossing the border, leaving the culture of their homeland, and then caring for a seriously ill child. Key themes that characterized their experience of being far from home included a backdrop of poverty, absence of traditional social support, and challenges caring for healthy siblings. Participants made comparisons between health care in Mexico and the United States and assessed the trade-off they made to come to the United States, discussing access to medical care and how they were able to relate to health care providers. Further, participants conveyed how rituals from their home country were important in maintaining connections with the child who died. Based on these themes, clinical implications and strategies that focus on understanding participants' experiences with past traumas, communication and literacy needs, and the challenges of living in poverty--especially with a critically ill child--are needed.

Malign neglect: assessing older women's health care experiences in prison.

PubMed

Aday, Ronald; Farney, Lori

2014-09-01

The problem of providing mandated medical care has become commonplace as correctional systems in the United States struggle to manage unprecedented increases in its aging prison population. This study explores older incarcerated women's perceptions of prison health care policies and their day-to-day survival experiences. Aggregate data obtained from a sample of 327 older women (mean age = 56) residing in prison facilities in five Southern states were used to identify a baseline of health conditions and needs for this vulnerable group. With an average of 4.2 chronic health conditions, frequently histories of victimization, and high rates of mental health issues, the women's experiences of negotiating health care was particularly challenging. By incorporating the voices of older women, we expose the contradictions, dilemmas, and obstacles they experience in their attempts to obtain health care. It is clear from the personal accounts shared that, despite court mandates, penal harm practices such as delaying or denying medical treatment as well as occasional staff indifferences are common in women's prisons. With older women having the greatest need for health care, an age- and gender-sensitive approach is recommended.

The loss of a shared lifetime: a qualitative study exploring spouses' experiences of losing couplehood with their partner with dementia living in institutional care.

PubMed

Førsund, Linn Hege; Skovdahl, Kirsti; Kiik, Riina; Ytrehus, Siri

2015-01-01

To explore and describe spouses' experiences of losing couplehood with their dementia-afflicted partner living in institutional care. Despite the losses and experiences of discontinuity due to the cognitive decline caused by dementia, the feelings of belonging and reciprocity in close relationships are still crucial to many couples. However, these experiences of spouses with partners living in institutional care are not well documented and are thus the focus of this study. A constructivist grounded theory approach was used to capture the relational processes described by the spouses. Conversational interviews were conducted with n = 10 spouses of dementia-afflicted persons living in institutional care. Data were analysed using the constant comparative method. The spouses' experiences of losing couplehood were primarily connected to separation from the partner and the sense of being alone. They were also related to the loss of the shared past and future. However, these experiences did not seem to be constant; short glimpses of connectedness, reciprocity and interdependence contributed to a feeling of couplehood, although these were only momentary. The spouses' experiences of losing couplehood were dynamic and were related to the couple's entire life. The spouses wavered between senses of loss and belonging to couplehood, depending on the conditions characterising the moment. Healthcare personnel must recognise the severity of some spouses' experiences of losing couplehood and be aware of how these experiences can fluctuate and be situation dependent. © 2014 John Wiley & Sons Ltd.

Ethics of care in medical tourism: Informal caregivers' narratives of responsibility, vulnerability and mutuality.

PubMed

Whitmore, Rebecca; Crooks, Valorie A; Snyder, Jeremy

2015-09-01

This study examines the experiences of informal caregivers in medical tourism through an ethics of care lens. We conducted semi-structured interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery, asking questions that dealt with their experiences prior to, during and after travel. Thematic analysis revealed three themes central to an ethics of care: responsibility, vulnerability and mutuality. Ethics of care theorists have highlighted how care has been historically devalued. We posit that medical tourism reproduces dominant narratives about care in a novel care landscape. Informal care goes unaccounted for by the industry, as it occurs in largely private spaces at a geographic distance from the home countries of medical tourists. Copyright © 2015 Elsevier Ltd. All rights reserved.

Comparing the Concept of Caring in Islamic Perspective with Watson and Parse's Nursing Theories

PubMed Central

Sadat-Hoseini, Akram-Sadat; Khosropanah, Abdoul-Hosein

2017-01-01

Background: In the nursing profession, it is apparent that the definition of caring differs between various perspectives. This article compares the difference of caring in Islamic with the Parse and Watson theories. Materials and Methods: In this study, we use concept analyses of Walker–Avants and compare research methods. Material used is all Islamic documents. Results: According to Islamic documents, there are four major types of caring, namely, (1) God taking care of humans, (2) Humans taking care of themselves, (3) Other humans taking care of humans, and (4) The universe taking care of humans and vice versa. God caring for humans affects the three other types of caring. All three definitions of caring have humanistic and holistic view. According to Watson's and Parse's definition, the development of the caring theory is based on the person's experiences that result from human interactions with, and experiences of, their environment. In Islamic definition, although the caring process is affected by environmental experiences and interactions, human not developed only base the effect of environment; rather, it is developed on the basis of human nature and divine commands. God taking care of humans is specific to Islamic perspective and is not found in other definitions. Islamic perspective maintains that God is the creator of humanity and is in charge of guiding humans. A superior form of human can always be discovered. Conclusions: Thus, nursing implementation in Muslims must be done based on Islamic commands, and Islamic commands are superior to human experiences. However, Islamic commands interpreted with human wisdom and thought can be striving toward excellence. PMID:28584543

Perspectives on enhancing international practical training of students in health and social care study programs - A qualitative descriptive case study.

PubMed

Hvalič-Touzery, Simona; Hopia, Hanna; Sihvonen, Sanna; Diwan, Sadhna; Sen, Soma; Skela-Savič, Brigita

2017-01-01

Internationalization of practical training in health and social care study programs is an important aspect of higher education. However, field mentors' and classroom teachers' competence in guiding culturally diverse students varies widely in European countries, and the majority does not have enough training in guiding foreign students. This study aimed to examine which factors enhance the efficacy of international practical placement experiences in health and social care study programs. A qualitative descriptive case study design was used. The study was conducted at six higher education institutions-two in Finland and one in Croatia, Estonia, the Netherlands and Slovenia. A convenience sample of 14 mentors, 15 teachers and 14 students with international experiences from six higher education institutions which are part of the Bologna Process was recruited. The data were collected from six focus groups using a semi-structured questionnaire based on a literature review. Each higher education institution conducted one group interview that was tape-recorded, transcribed and analysed for themes. Participants made several recommendations for enhancing the practical placement experience of students, teachers, and mentors. Most recommendations dealt with practical supervision of students. Three major themes noted were: 'Attitudes towards internationalization of practical placements', 'Factors impacting the international placement experience', and 'Pedagogical methods used and structural support available for internationalization.' The study highlights the need for strengthening the multicultural knowledge and skills of mentors and teachers. The findings provide practical guidelines for improving the international placement experience across health and social care fields. Copyright © 2016 Elsevier Ltd. All rights reserved.

Obesity, stigma, and responsibility in health care: A synthesis of qualitative studies

PubMed Central

Ulriksen, Kjersti

2011-01-01

Objective To synthesize research findings on experiences and attitudes about obesity and stigma in health care. Methods We compiled qualitative studies and applied Noblitt & Hare's meta ethnography to identify, translate, and summarize across studies. Thirteen qualitative studies on experiences and attitudes about obesity and stigma in health care settings were identified and included. Results The study reveals how stigmatizing attitudes are enacted by health care providers and perceived by patients with obesity. Second-order analysis demonstrated that apparently appropriate advice can be perceived as patronizing by patients with obesity. Furthermore, health care providers indicate that abnormal bodies cannot be incorporated in the medical systems—exclusion of patients with obesity consequently happens. Finally, customary standards for interpersonal respect are legitimately surpassed, and patients with obesity experience contempt as if deserved. Third-order analysis revealed conflicting views between providers and patients with obesity on responsibility, whereas internalized stigma made patients vulnerable for accepting a negative attribution. A theoretical elaboration relates the issues of stigma with those of responsibility. Conclusion Contradictory views on patients’ responsibility, efforts, knowledge, and motivation merge to internalization of stigma, thereby obstructing healthy coping and collaboration and creating negative contexts for empowerment, self-efficacy, and weight management. Professionals need to develop their awareness for potentially stigmatizing attitudes towards vulnerable patient populations. PMID:22121389

Applying the chronic care model to prenatal care: Patient activation, productive interactions, and prenatal outcomes.

PubMed

Ledford, Christy J W; Sadler, Kerry P; Jackson, Jeremy T; Womack, Jasmyne J; Rider, Heather A; Seehusen, Angela B

2018-04-30

To demonstrate how the chronic care model can be applied in prenatal care. This study was conducted through analysis of data generated in the women's health and family medicine departments of one community hospital and two medical centers across three states (Georgia, Nevada, and Virginia). 159 low-risk obstetric patients were monitored throughout their pregnancy for patient activation and biometric measures including: blood pressure at each appointment, baby's gestational age at birth, and mode of delivery. Patient activation was assessed with the validated, licensed patient activation measure. Patient activation was strongly associated with the Prenatal Interpersonal Processes of Care metric (F (2, 155) = 3.41, p < .05). Also, increased age, decreased Prenatal Interpersonal Processes of Care, fewer pregnancies, and increased diastolic blood pressure were associated with an increased likelihood of cesarean delivery and the model correctly predicted 81% of cases. Women who identified as feeling more activated reported more positive pregnancy experiences, and women who reported more positive pregnancy experiences were more likely to experience a vaginal delivery. Activated patients, more positive prenatal experience, and improved delivery outcomes can be achieved through applying the chronic care model. Copyright © 2018 Elsevier B.V. All rights reserved.

Using Blocked Fractional Factorial Designs to Construct Discrete Choice Experiments for Health Care Studies

PubMed Central

Jaynes, Jessica; Wong, Weng Kee; Xu, Hongquan

2016-01-01

Discrete choice experiments (DCEs) are increasingly used for studying and quantifying subjects preferences in a wide variety of health care applications. They provide a rich source of data to assess real-life decision making processes, which involve trade-offs between desirable characteristics pertaining to health and health care, and identification of key attributes affecting health care. The choice of the design for a DCE is critical because it determines which attributes’ effects and their interactions are identifiable. We apply blocked fractional factorial designs to construct DCEs and address some identification issues by utilizing the known structure of blocked fractional factorial designs. Our design techniques can be applied to several situations including DCEs where attributes have different number of levels. We demonstrate our design methodology using two health care studies to evaluate (1) asthma patients’ preferences for symptom-based outcome measures, and (2) patient preference for breast screening services. PMID:26823156

Age at adoption from institutional care as a window into the lasting effects of early experiences

PubMed Central

Julian, Megan M.

2013-01-01

One of the major questions of human development is how early experience impacts the course of development years later. Children adopted from institutional care experience varying levels of deprivation in their early life followed by qualitatively better care in an adoptive home, providing a unique opportunity to study the lasting effects of early deprivation and its timing. The effects of age at adoption from institutional care are discussed for multiple domains of social and behavioral development within the context of several prominent developmental hypotheses about the effects of early deprivation (cumulative effects, experience-expectant developmental programming, and experience-adaptive developmental programming). Age at adoption effects are detected in a majority of studies, particularly when children experienced global deprivation and were assessed in adolescence. For most outcomes, institutionalization beyond a certain age is associated with a step-like increase in risk for lasting social and behavioral problems, with the step occurring at an earlier age for children who experienced more severe levels of deprivation. Findings are discussed in terms of their concordance and discordance with our current hypotheses, and speculative explanations for the findings are offered. PMID:23576122

Qualitative study: the experience and impact of living with Behcet's syndrome.

PubMed

Tai, Vicky; Lindsay, Karen; Sims, Joanne L; McQueen, Fiona M

2017-09-22

Behcet's syndrome is a rare chronic multisystemic vasculitis of unknown aetiology, is unpredictable and can cause life-threatening complications. This qualitative study aims to explore the experiences of patients living with Behcet's syndrome in New Zealand. Eight English-speaking patients participated in in-depth semi-structured interviews about their experiences of living with Behcet's syndrome. Interviews were recorded and transcribed. Data were analysed using a general inductive thematic approach. Five themes related to the experience of Behcet's syndrome emerged from the interviews: diagnosis (diagnostic challenge and closure), impact of disease (pain, fatigue, reduced vision, fear and uncertainty), loneliness and isolation (lack of support and information, invisible illness), acquiring resilience (coping, gaining sense of control, support group) and ongoing interactions with health system (specialist care, primary care, need for multidisciplinary care, doctor-patient relationship). Behcet's syndrome patients experience difficulties in obtaining a timely and correct diagnosis and contend numerous physical and emotional challenges, often experiencing loneliness and isolation. Establishing trusting doctor-patient relationships, allowing timely access to specialist care and recruiting psychosocial supports will help patients better cope with their illness. Diagnosis and management of Behcet's syndrome requires close collaboration and communication among specialists and general practitioners and improved education on Behcet's syndrome.

Questioning care at the end of life.

PubMed

Ruopp, Patricia; Good, Mary-Jo Delvecchio; Lakoma, Matthew; Gadmer, Nina M; Arnold, Robert M; Block, Susan D

2005-06-01

The goal of the larger study was to explore physicians' emotional responses to the death of their patients; this study analyzed a subset of physician transcripts to elucidate the construct of questioning care, which emerged from the larger study. To analyzes how physicians question care-expressing concern, unease, or uncertainty about treatment decisions and practices, errors, or adverse events-as they attend dying patients. Retrospective interview study of physicians caring for randomly selected deaths on the medical service of a major academic teaching hospital, using qualitative and quantitative measures. SETTING, SUBJECTS: 188 attendings, residents, and interns on the internal medical services of two academic medical centers were part of the larger study. A subsample of 75 physician narratives was selected for qualitative data analysis for this study. Qualitative measures included open-ended questions eliciting physicians' stories of the most recent and a most emotionally powerful patient death they have experienced. Grounded theory was used to analyze physician narratives. Quantitative instruments measured physician attitudes toward end-of-life care and responses to the most recent and most emotional patient death. Physicians question care more frequently in most emotional deaths (42%) than in most recent deaths (34%). Physicians question communication with patients and families and within medical teams, medical judgment and technique, standards of practice, and high-risk treatments, often assigning responsibility for medical management they perceive as inappropriate, futile, overly aggressive, or mistakes in judgment and technique. Responsibility ranges from the distal (the culture of medicine) to the proximal (personal). Frustration, guilt, and anger are more frequently expressed in these narratives when care is questioned. A typology of questioning care emerged from these physicians' narratives that parallels and reflects recent and classic research on medical error and the culture of medicine. Physicians' questions about care can contribute to designing training experiences for residents and to improving the quality of systems that affect patients' experiences at life's end and physicians' experiences in caring for dying patients.

Still Hoping for a Miracle: Parents' Experiences in Caring for their Child with Cancer Under Palliative Care

PubMed Central

Nafratilova, Mercy; Allenidekania, Allenidekania; Wanda, Dessie

2018-01-01

Context: Parents' despair and feelings of grief, as well as communication and coordination that is less than adequate between the parents and the palliative team, can affect the provision of a qualified palliative care plan for children and their families. Aims: This study aims to explore the parents' experience in caring for children with cancer under palliative care condition. Setting and Design: The research applied descriptive qualitative phenomenology design. Subjects and Methods: The study was conducted at Jakarta, Bogor, and Bekasi. Parents who caring their child with cancer under palliative care were in-depth interviewed with open-ended question. Data were then analyzed using the Colaizzi method. Results: This study resulted in two themes, still hoping for a miracle of God and always being surrendered while under palliative care. Parents still hope for a miracle of God to keep having their children during palliative care. The forms of surrendering exhibited by the parents in this study are believing in God, praying to God, saying thanks to God, relying on God, and preparing to face the deaths of their children. Conclusion: This study shows that during palliative care, parents cannot be separated from their relationship with God. Therefore, nurses are vital to the continuous assessment of parents' spiritual needs and to the facilitation of need fulfillment involving family and religious figures. PMID:29736112

Working together: critical care nurses experiences of temporary staffing within Swedish health care: A qualitative study.

PubMed

Berg Jansson, Anna; Engström, Åsa

2017-08-01

The aim of this study is to describe critical care nurses (CCN's) experiences of working with or as temporary agency staff. This explorative qualitative study is based on interviews with five agency CCNs and five regular CCNs, a total of ten interviews, focusing on the interviewees' experiences of daily work and temporary agency staffing. The interviews were analysed manually and thematically following an inductive approach. Four themes that illustrate both similarities and differences between regular and temporary agency CCNs emerged: "working close to patients versus being responsible for everything", "teamwork versus independence", "both groups needed" and "opportunities and challenges". The study findings illustrate the complexity of the working situation for agency and regular staff in terms of the organisation and management of the temporary agency nurses and the opportunities and challenges faced by both groups. Copyright © 2016 Elsevier Ltd. All rights reserved.

Experiences of Patients Living With Heart Failure: A Descriptive Qualitative Study.

PubMed

Seah, Alvin Chuen Wei; Tan, Khoon Kiat; Huang Gan, Juvena Chew; Wang, Wenru

2016-07-01

The purpose of this study was to explore the experiences, needs, and coping strategies of patients living with heart failure in Singapore. A descriptive qualitative design was used. A purposive sample of 15 informants was recruited from two cardiology wards of a tertiary public hospital in Singapore. Individual face-to-face interviews were conducted with a semistructured interview guideline that was developed based on a review of the literature and a pilot study. Content analysis was adopted to analyze the data, and four main categories were identified: perceived causes, manifestations, and prognosis; enduring emotions; managing the condition; and needs from health care professionals. The informants were overwhelmed with the experience of living with heart failure due to the disruptive and uncertain nature of the condition. This study offers health care professionals practical and useful suggestions when providing holistic care for patients with heart failure. © The Author(s) 2015.

Men in Nursing: Intention, Intentionality, Caring, and Healing: Emphasis on the Results of a Grounded Theory Study.

PubMed

Zahourek, Rothlyn P

2016-01-01

The purpose of this article is to amplify the results section of a grounded theory study on how men in nursing view and experience intention, intentionality, caring, and healing. This is the second grounded theory study addressing intentionality in healing. The first study included a female population. The theory that was generated-Intentionality: The Matrix of Healing (IMH)-is examined with these new data. The results are compared with issues generally faced by men in nursing and how they described their beliefs and experiences with intentionality and healing. The theory (IMH) is supported; the importance of action in this cohort was an additional emphasis. This article provides an expanded view of men in nursing and their experiences as nurses and with intentionality, caring, and healing and has implications for the development of holistic nursing theory as well.

Patient-reported care coordination: associations with primary care continuity and specialty care use.

PubMed

Liss, David T; Chubak, Jessica; Anderson, Melissa L; Saunders, Kathleen W; Tuzzio, Leah; Reid, Robert J

2011-01-01

Care coordination is increasingly recognized as a necessary element of high-quality, patient-centered care. This study investigated (1) the association between care coordination and continuity of primary care, and (2) differences in this association by level of specialty care use. We conducted a cross-sectional study of Medicare enrollees with select chronic conditions in an integrated health care delivery system in Washington State. We collected survey information on patient experiences and automated health care utilization data for 1 year preceding survey completion. Coordination was defined by the coordination measure from the short form of the Ambulatory Care Experiences Survey (ACES). Continuity was measured by primary care visit concentration. Patients who had 10 or more specialty care visits were classified as high users. Linear regression was used to estimate the association between coordination and continuity, controlling for potential confounders and clustering within clinicians. We used a continuity-by-specialty interaction term to determine whether the continuity-coordination association was modified by high specialty care use. Among low specialty care users, an increase of 1 standard deviation (SD) in continuity was associated with an increase of 2.71 in the ACES coordination scale (P <.001). In high specialty care users, we observed no association between continuity and reported coordination (P= .77). High use of specialty care may strain the ability of primary care clinicians to coordinate care effectively. Future studies should investigate care coordination interventions that allow for appropriate specialty care referrals without diminishing the ability of primary care physicians to manage overall patient care.

Family caregivers' experiences of caring for patients with heart failure: a descriptive, exploratory qualitative study.

PubMed

Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi

2015-06-01

Living with heart failure is a complex situation for family caregivers. Many studies addressing the challenges faced by heart failure family caregivers have already been conducted in Western societal settings. Sociocultural factors and perspectives influence the family caring experience and roles. The ethnic/culturally based differences in family caring behavior make this a subject worth further exploration and clarification. This study explores the experiences of family caregivers in Iran of caring for patients with heart failure. A descriptive, exploratory, and qualitative approach was applied to gain authentic insight into the experiences of participants. Purposive sampling was used to recruit 21 family caregivers from three educational hospitals in Isfahan, Iran. Data were collected using semistructured interviews and field notes. Interviews and field notes were transcribed verbatim and concurrently analyzed. Three major themes emerged from the analysis of the transcripts: caregiver uncertainty, lack of familial and organizational support, and Allah-centered caring. Participants believed that they did not have the basic knowledge related to their disease and drugs. In addition, they received little guidance from the healthcare team. Lack of support and insurance as well as financial issues were major problems faced by the caregivers. They accepted the providence of Allah and noted that Allah always helps them accomplish their caregiving responsibilities. The care performed by the caregivers of patients with heart failure exceeds their individual capabilities. Nurses, other healthcare providers, and health policy makers may use the findings of this study to develop more effective programs to address these challenges and to provide more effective support.Sociocultural factors and perspectives were the primary factors affecting the caregiving experiences of participants in this study. Improved understanding of these factors and perspectives will help healthcare providers develop and implement suitable intervention programs for caregivers. Healthcare professionals should develop context-based intervention programs to promote caregiver capabilities and encourage caregivers to participate to facilitate the caregiving roles of caregivers.

Immigrant women's experience of maternity services in Canada: a meta-ethnography.

PubMed

Higginbottom, Gina M A; Hadziabdic, Emina; Yohani, Sophie; Paton, Patricia

2014-05-01

to synthesise data on immigrant women's experiences of maternity services in Canada. a qualitative systematic literature review using a meta-ethnographic approach a comprehensive search strategy of multiple databases was employed in consultation with an information librarian, to identify qualitative research studies published in English or French between 1990 and December 2011 on maternity care experiences of immigrant women in Canada. A modified version of Noblit and Hare's meta-ethnographic theoretical approach was undertaken to develop an inductive and interpretive form of knowledge synthesis. The seven-phase process involved comparative textual analysis of published qualitative studies, including the translation of key concepts and meanings from one study to another to derive second and third-order concepts encompassing more than that offered by any individual study. ATLAS.ti qualitative data analysis software was used to store and manage the studies and synthesise their findings. the literature search identified 393 papers, of which 22 met the inclusion criteria and were synthesised. The literature contained seven key concepts related to maternity service experiences including social (professional and informal) support, communication, socio-economic barriers, organisational environment, knowledge about maternity services and health care, cultural beliefs and practices, and different expectations between health care staff and immigrant women. Three second-order interpretations served as the foundation for two third-order interpretations. Societal positioning of immigrant women resulted in difficulties receiving high quality maternity health care. Maternity services were an experience in which cultural knowledge and beliefs, and religious and traditional preferences were highly relevant as well but often overlooked in Canadian maternity settings. in order to implement woman-centered care, to enhance access to maternity services, and to promote immigrant women's health, it is important to consider these women's social position, cultural knowledge and beliefs, and traditional customs in the health care. Copyright © 2013 Elsevier Ltd. All rights reserved.

Perceived Barriers to Health Care Access Among Rural Older Adults: A Qualitative Study

ERIC Educational Resources Information Center

Goins, R. Turner; Williams, Kimberly A.; Carter, Mary W.; Spencer, S. Melinda; Solovieva, Tatiana

2005-01-01

Context: Many rural elders experience limited access to health care. The majority of what we know about this issue has been based upon quantitative studies, yet qualitative studies might offer additional insight into individual perceptions of health care access. Purpose: To examine what barriers rural elders report when accessing needed health…

Perceived Barriers to Health Care Access among Rural Older Adults: A Qualitative Study

ERIC Educational Resources Information Center

Goins, R. Turner; Williams, Kimberly A.; Carter, Mary W.; Spencer, S. Melinda; Solovieva, Tatiana

2005-01-01

Context: Many rural elders experience limited access to health care. The majority of what we know about this issue has been based upon quantitative studies, yet qualitative studies might offer additional insight into individual perceptions of health care access. Purpose: To examine what barriers rural elders report when accessing needed health…

Structural Equation Modeling of Cultural Competence of Nurses Caring for Foreign Patients.

PubMed

Ahn, Jung-Won

2017-03-01

This study aimed to construct and test a hypothetical model including factors related to the cultural competence of nurses caring for foreign patients. The transcultural nursing immersion experience model and anxiety/uncertainty management theory were used to verify the paths between the variables. The exogenous variables were multicultural experience, ethnocentric attitude, and organizational cultural competence support. The endogenous variables were intercultural anxiety, intercultural uncertainty, coping strategy, and cultural competence. Participants were 275 nurses working in general hospitals in Seoul and Kyung-Gi Do, Korea. Each nurse in this study had experience of caring for over 10 foreign patients. Data were collected using a structured questionnaire and analyzed with SPSS statistical software with the added AMOS module. The overall fitness indices of the hypothetical model were a good fit. Multicultural experience, ethnocentric attitude, organizational cultural competence support, and intercultural uncertainty were found to have a direct and indirect effect on the cultural competence of nurses while coping strategy only had a direct effect. Intercultural anxiety did not have a significant effect on cultural competence. This model explained 59.1% of the variance in the nurses' cultural competence when caring for foreign patients. Nurses' cultural competence can be developed by offering multicultural nursing education, increasing direct/indirect multicultural experience, and sharing problem-solving experience to promote the coping ability of nurses. Organizational support can be achieved by preparing relevant personnel and resources. Subsequently, the quality of nursing care for foreign patients' will be ultimately improved. Copyright © 2017. Published by Elsevier B.V.

Cancer and serious mental illness--patient, caregiver and professional perspectives: study protocol.

PubMed

Millman, James; Galway, Karen; Santin, Olinda; Reid, Joanne

2016-01-01

To explore the experience of serious mental illness and cancer from the perspective of patients, significant others and healthcare professionals involved in their care. Serious mental illness is associated with poorer cancer outcomes. Those suffering from this comorbidity receive fewer specialist interventions and die earlier than the general population. Prior qualitative research in this area has comprised of a single study focussing on healthcare professionals and there is little evidence regarding the experiences of patients and caregivers. A qualitative exploration using approximately 36 semi-structured interviews. Semi-structured digitally recorded interviews conducted with: adults living with serious mental illness and diagnosed with cancer; those providing them with informal support and care; and healthcare professionals. Questions will focus on the experience of having cancer and serious mental illness or caring for someone with this comorbidity, experiences of healthcare and priorities for patients and carers. Framework analysis will be used. Research Ethics Committee and Trust Research & Development approval was obtained. A steering group comprising six people with experience of either cancer or mental illness provided feedback and ratified the patient information sheets and interview schedules. There is a paucity of research addressing stakeholder perspectives on the experience of cancer and of cancer services for people with serious mental illness. Dissemination of findings will inform practice relating to the care of an often neglected population, informing better support for their significant others and the professionals involved in their care. © 2015 John Wiley & Sons Ltd.

The illness of women and men with sickle cell disease: a Grounded Theory study.

PubMed

Cordeiro, Rosa Cândida; Ferreira, Silvia Lúcia; Santos, Ane Caroline da Cruz

2015-01-01

To understand the meanings given by women and men with sickle cell disease on the illness experience. Analytical study with a qualitative approach, conducted with 17 adults with sickle cell disease using the Theory Based on Data, or Grounded Theory, as theoretical-methodological referential. Data were collected between the years of 2012 and 2013, in an individual in-depth interview. All the interviews were recorded and analyzed according to the Grounded Theory comparative analysis technique. Data show four categories which group the experience of illness, the feelings experienced and the path to living with sickle cell disease. It was possible to understand that the experience was built by a process in which these people redefined the meaning of their lives, applying new directions to life and to care regarding the experience of the illness. In the context of chronic disease, the nurse's care is also seen in this study as a foundation, providing attention, directions, and guidance through the required confrontations. Understanding the experience lived by these people, it is possible to enlarge the dimensions and the essence of nursing care required throughout life.

Key barriers to gout care: a systematic review and thematic synthesis of qualitative studies.

PubMed

Rai, Sharan K; Choi, Hyon K; Choi, Sally H J; Townsend, Anne F; Shojania, Kam; De Vera, Mary A

2018-04-17

Gout care remains highly suboptimal, contributing to an increased global disease burden. To understand barriers to gout care, our aim was to provide a systematic review and thematic synthesis of qualitative studies worldwide reporting provider and patient perspectives and experiences with management. We conducted a mapped search of MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, and Social Sciences Citation Index databases and selected qualitative studies of provider and patient perspectives on gout management. We used thematic synthesis to combine the included studies and identify key themes across studies. We included 20 studies that reported the experiences and perspectives of 480 gout patients and 120 providers spanning five different countries across three continents. We identified three predominant provider themes: knowledge gaps and management approaches; perceptions and beliefs about gout patients; and system barriers to optimal gout care (e.g. time constraints and a lack of incentives). We also identified four predominant themes among gout patients: limited gout knowledge; interactions with health-care providers; attitudes towards and experiences with taking medication; and practical barriers to long-term medication use. Our systematic review of worldwide literature consistently identified gaps in gout knowledge among providers, which is likely to contribute to patients' lack of appropriate education about the fundamental causes of and essential treatment approaches for gout. Furthermore, system barriers among providers and day-to-day challenges of taking long-term medications among patients are considerable. These factors provide key targets to improve the widespread suboptimal gout care.

First Births to Maltreated Adolescent Girls: Differences Associated With Spending Time in Foster Care.

PubMed

King, Bryn

2017-05-01

Few studies have examined early parenting among girls receiving child welfare services (CWS) or disentangled the relationship between maltreatment, spending time in foster care, and adolescent childbirth. Using population-based, linked administrative data, this study calculated birth rates among maltreated adolescent girls and assessed differences in birth rates associated with spending time in foster care. Of the 85,766 girls with substantiated allegations of maltreatment during adolescence, nearly 18% subsequently gave birth. Among girls who spent time in foster care, the proportion was higher (19.5%). Significant variations ( p < .001) were observed in the rate of childbirth across demographic characteristics and maltreatment experiences. When accounting for all of the covariates, spending time in foster care was associated with a modestly higher rate of a first birth (Hazard Ratio [HR] = 1.10; 95% confidence interval = [1.06, 1.14]). While age at first substantiated allegation of maltreatment and race/ethnicity were significant predictors of adolescent childbirth, specific maltreatment experiences were associated with minimal or no differences in birth rates. The findings of this study suggest that the experience of spending time in care may not be a meaningful predictor of giving birth as a teen among CWS-involved adolescent girls and highlight subgroups of this population who may be more vulnerable to early childbirth.

The experience of dentists who gained enhanced skills in endodontics within a novel pilot training programme.

PubMed

Eliyas, S; Briggs, P; Gallagher, J E

2017-02-24

Objective To explore the experiences of primary care dentists following training to enhance endodontic skills and their views on the implications for the NHS.Design Qualitative study using anonymised free text questionnaires.Setting Primary care general dental services within the National Health Service (NHS) in London, United Kingdom.Subjects and methods Eight primary care dentists who completed this training were asked about factors affecting participant experience of the course, perceived impact on themselves, their organisation, their patients and barriers/facilitators to providing endodontic treatment in NHS primary care. Data were transferred verbatim to a spreadsheet and thematically analysed.Intervention 24-month part-time educational and service initiative to provide endodontics within the NHS, using a combination of training in simulation lab and treatment of patients in primary care.Results Positive impacts were identified at individual (gains in knowledge, skills, confidence, personal development), patient (more teeth saved, quality of care improved) and system levels (access, value for money). Suggested developments for future courses included more case discussions, teaching of practical skills earlier in the course and refinement of the triaging processes. Barriers to using the acquired skills in providing endodontic treatment in primary care within the NHS were perceived to be resources (remuneration, time, skills) and accountability. Facilitators included appropriately remunerated contracts, necessary equipment and time.Conclusion This novel pilot training programme in endodontics combining general practice experience with education/training, hands-on experience and a portfolio was perceived by participants as beneficial for extending skills and service innovation in primary dental care. The findings provide insight into primary dental care practitioners' experience with education/training and have implications for future educational initiatives in support of systems innovation within the NHS.

An exploration of the midwifery continuity of care program at one Australian University as a symbiotic clinical education model.

PubMed

Sweet, Linda P; Glover, Pauline

2013-03-01

This discussion paper analyses a midwifery Continuity of Care program at an Australian University with the symbiotic clinical education model, to identify strengths and weakness, and identify ways in which this new pedagogical approach can be improved. In 2002 a major change in Australian midwifery curricula was the introduction of a pedagogical innovation known as the Continuity of Care experience. This innovation contributes a significant portion of clinical experience for midwifery students. It is intended as a way to give midwifery students the opportunity to provide continuity of care in partnership with women, through their pregnancy and childbirth, thus imitating a model of continuity of care and continuity of carer. A qualitative study was conducted in 2008/9 as part of an Australian Learning and Teaching Council Associate Fellowship. Evidence and findings from this project (reported elsewhere) are used in this paper to illustrate the evaluation of midwifery Continuity of Care experience program at an Australian university with the symbiotic clinical education model. Strengths of the current Continuity of Care experience are the strong focus on relationships between midwifery students and women, and early clinical exposure to professional practice. Improved facilitation through the development of stronger relationships with clinicians will improve learning, and result in improved access to authentic supported learning and increased provision of formative feedback. This paper presents a timely review of the Continuity of Care experience for midwifery student learning and highlights the potential of applying the symbiotic clinical education model to enhance learning. Applying the symbiotic clinical education framework to evidence gathered about the Continuity of Care experience in Australian midwifery education highlights strengths and weaknesses which may be used to guide curricula and pedagogical improvements. Copyright © 2011 Elsevier Ltd. All rights reserved.

Family Members' Experience With Hospice in Nursing Homes.

PubMed

Gage, L Ashley; Washington, Karla; Oliver, Debra Parker; Kruse, Robin; Lewis, Alexandra; Demiris, George

2016-05-01

Research has documented numerous benefits and challenges associated with receipt of hospice care in nursing homes; however, study of this partnership from the perspective of residents' family members has been limited. The purpose of this qualitative investigation was to explore family members' experience with hospice services received in the nursing home setting. Researchers conducted a secondary data analysis of 175 family member interviews using a thematic analytic approach. Findings highlighted the critical role of communication in supporting residents and their family members. Care coordination, support and oversight, and role confusion also impacted family members' experience of hospice care in the nursing home. Efforts directed at enhancing communication and more clearly articulating the roles of members of the health care team are indicated. © The Author(s) 2014.

Family Members’ Experience with Hospice in Nursing Homes

PubMed Central

Gage, L. Ashley; Washington, Karla T.; Oliver, Debra Parker; Lewis, Alexandra; Kruse, Robin L.; Demiris, George

2014-01-01

Research has documented numerous benefits and challenges associated with receipt of hospice care in nursing homes; however, study of this partnership from the perspective of residents’ family members has been limited. The purpose of this qualitative investigation was to explore family members’ experience with hospice services received in the nursing home setting. Researchers conducted a secondary data analysis of 175 family member interviews using a thematic analytic approach. Findings highlighted the critical role of communication in supporting residents and their family members. Care coordination, support and oversight, and role confusion also impacted family members’ experience of hospice care in the nursing home. Efforts directed at enhancing communication and more clearly articulating the roles of members of the health care team are indicated. PMID:25422516

Going Domestic: Importing the Study Abroad Experience. The Development of a Multicultural New York City Study Away Program.

PubMed

Lane, Susan Hayes; Huffman, Carolyn; Brackney, Dana E; Cuddy, Alyssa

2017-07-01

Significant off-campus domestic study away experiences have been shown to be a transformative active learning environment for students and achieve similar learning outcomes as study abroad programs. This manuscript describes the conception, development, and pedagogical approach of a faculty-led domestic study away experience in New York City for pre-licensure and post-licensure nursing students as an active learning strategy for developing cultural competence. Students participated in service-learning activities that illuminated the realities and challenges persons from other cultures face as they interact with health care in a culture that is not their own. In partnership with New York Cares©, students were immersed in well-established ongoing sustainable community-based projects. These experiences fostered reflective conversations between community members, student participants, and faculty regarding social factors, cultural issues and needs, and global issues and trends. Through the New York study away program, students were able to broaden their perspectives about social factors and culture beyond geographic or ethnic boundaries and apply these service experiences to their nursing practice. Study away programs are an excellent strategy for nursing educators to prepare students for care of multicultural populations and for proficiency in cultural competency within the globalization of the United States. © 2016 Wiley Periodicals, Inc.

Enhancing adult therapeutic interpersonal relationships in the acute health care setting: an integrative review

PubMed Central

Kornhaber, Rachel; Walsh, Kenneth; Duff, Jed; Walker, Kim

2016-01-01

Therapeutic interpersonal relationships are the primary component of all health care interactions that facilitate the development of positive clinician–patient experiences. Therapeutic interpersonal relationships have the capacity to transform and enrich the patients’ experiences. Consequently, with an increasing necessity to focus on patient-centered care, it is imperative for health care professionals to therapeutically engage with patients to improve health-related outcomes. Studies were identified through an electronic search, using the PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO databases of peer-reviewed research, limited to the English language with search terms developed to reflect therapeutic interpersonal relationships between health care professionals and patients in the acute care setting. This study found that therapeutic listening, responding to patient emotions and unmet needs, and patient centeredness were key characteristics of strategies for improving therapeutic interpersonal relationships. PMID:27789958

Enhancing adult therapeutic interpersonal relationships in the acute health care setting: an integrative review.

PubMed

Kornhaber, Rachel; Walsh, Kenneth; Duff, Jed; Walker, Kim

2016-01-01

Therapeutic interpersonal relationships are the primary component of all health care interactions that facilitate the development of positive clinician-patient experiences. Therapeutic interpersonal relationships have the capacity to transform and enrich the patients' experiences. Consequently, with an increasing necessity to focus on patient-centered care, it is imperative for health care professionals to therapeutically engage with patients to improve health-related outcomes. Studies were identified through an electronic search, using the PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO databases of peer-reviewed research, limited to the English language with search terms developed to reflect therapeutic interpersonal relationships between health care professionals and patients in the acute care setting. This study found that therapeutic listening, responding to patient emotions and unmet needs, and patient centeredness were key characteristics of strategies for improving therapeutic interpersonal relationships.

Does Having a Culturally Competent Health Care Provider Affect the Patients' Experience or Satisfaction? A Critically Appraised Topic.

PubMed

Brunett, Miranda; Shingles, René Revis

2018-04-23

Clinical Scenario: The level of cultural competence of health care providers has been studied. However, limited scholarship has examined whether the cultural competence of the health care provider affects patient satisfaction. Focused Clinical Question: Does cultural competence of health care providers influence patient satisfaction with their experience with their provider? Summary of Key Findings: Having a culturally competent health care provider, or one who a patient perceives as culturally competent, does increase patient satisfaction. Clinical Bottom Line: Cultural competence in health care plays an important role in patients being satisfied with their providers, as well as patients willingly and actively participating in their treatment. Strength of Recommendation: Questions 1 to 5 and 9 of the critical appraisal skills program were answered "yes" for all studies in the critically appraised topic. Thus, the authors strongly support the findings.

Japanese citizens' attitude toward end-of-life care and advance directives: A qualitative study for members of medical cooperatives.

PubMed

Hirayama, Yoko; Otani, Takashi; Matsushima, Masato

2017-12-01

Japanese citizens are interested in choosing their own end-of-life care, but few have created their own advance directive. This study examined changes among Japanese citizens' attitudes toward end-of-life care and advance directives and explored factors that affected these attitudes. We conducted five focus groups with 48 participants in 2009 and 2010. All participants were members of health cooperatives in Tokyo. We identified many barriers and reasons for creating and writing down advance directives. Experience caring for dying people and having a serious disease affected attitudes toward advance directives. Some participants changed their attitude toward end-of-life care by writing their own advance directive. When someone is writing advance directives, asking about his/her past experience of caring may be helpful. And learning about or filling out advance directives may help to break down resistance to using these documents.

Experiences of gynecological cancer patients receiving care from specialist nurses: a qualitative systematic review.

PubMed

Cook, Olivia; McIntyre, Meredith; Recoche, Katrina; Lee, Susan

2017-08-01

The care needs of women with gynecological cancer are complex and change over the course of their cancer journey. Specialist nurses are well positioned to play a role in meeting the needs of women with gynecological cancer although their role and scope of practice have not been well defined. As patients are a key stakeholder, understanding their experience of care is an important step in better defining the role and scope of practice of specialist nurses in gynecological oncology in Australia and New Zealand. This review sought to consider gynecological cancer patients' experiences of specialist nursing care. Exploring the patient's experience of care by a specialist nurse is one step in the process of better defining the role and scope of practice of specialist gynecological-oncology nurses in Australia and New Zealand. This review included studies with a focus on women with gynecological cancer who had been cared for by a specialist nurse. Studies of women with gynecological cancer at any point on the continuum of care from pre-diagnosis to survivorship or end of life, including those with a recurrence of the disease, were included, with no limit to the duration of care received for inclusion in the review. Studies that explored how women with gynecological cancer experience the care and interventions of specialist nurses were included. Qualitative studies including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research were considered for review. This review also considered the qualitative components of mixed method studies. Research conducted in any country was considered for inclusion in this review providing that the study was reported in English. Studies conducted in any setting including, but not limited to, acute hospitals, outpatient/ambulatory clinics, chemotherapy or radiotherapy units, support groups, palliative care units or the patient's home were included. A three-step search strategy was utilized in this review. An initial limited search of MEDLINE and CINAHL was undertaken followed by a comprehensive search using all identified keywords and index terms across all included databases. The reference lists of all identified reports and articles were hand searched for additional studies. Each paper was independently assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardized critical appraisal instrument from the Joanna Briggs Institute the Qualitative Assessment and Review Instrument. When disagreement arose between the reviewers, the given paper was independently appraised by a third reviewer. Data were extracted from papers included in the review using the standardized data extraction tool from Joanna Briggs Institute the Qualitative Assessment and Review Instrument. Data extraction was completed independently by two reviewers. Extracted findings from seven included papers were grouped according to similarity in meaning from which 11 categories were developed. These categories were then subjected to a meta-synthesis that produced a set of three synthesized findings. Key findings were extracted from six included papers and classified as unequivocal (U) or credible (C). A total of 30 findings were extracted and aggregated into 11 categories based on similarity in meaning. From the 11 categories, three synthesized findings were developed: i) Tailored care: specialist nurses play a role in understanding and meeting the individual needs of women with gynecological cancer; ii) Accessible care: specialist nurses guide women with gynecological cancer along the continuum of care and are an easily accessed source of knowledge and support; iii) Dependable expertise: women with gynecological cancer express trust and reassurance in the experience and expertise of the specialist nurse. This systematic review synthesized the findings of seven studies that captured the experiences of women with gynecological cancer who received care from a specialist nurse. The specialist nurse offers tailored, accessible and expert care to women with gynecological cancer. From the synthesis it is recommended that women with gynecological cancer have access to the services of a specialist nurse at key points on the continuum of care, that specialist nurses provide information to patients on their disease and treatment in the form preferred by the patient and ensure that this information has been understood, and that specialist nurses are afforded time to spend with patients to enable greater exploration and identification of patient needs and the provision of personalized care. Further study that considers other key stakeholders in the specialist nurse role in gynecological oncology is recommended in order to gain a full understanding of specialist nurses' contribution to the care of women with gynecological cancer. Additionally, it is recommended that further studies be conducted to seek the perspectives of women with gynecological cancer from culturally and linguistically diverse backgrounds and Indigenous populations on specialist nursing care as they appear to be under-represented in current research.

Goals of Care or Goals of Trust? How Family Members Perceive Goals for Dying Nursing Home Residents.

PubMed

Rosemond, Cherie; Hanson, Laura C; Zimmerman, Sheryl

2017-04-01

Dementia affects more than 5 million Americans, and is a leading cause of death. Family members of nursing home (NH) residents with advanced dementia report difficulty making decisions about care toward the end of life. As part of a randomized trial testing an intervention to improve decision making, this qualitative study aimed to understand how family decision makers experienced goal-based decision making in advance of the death of their relative. This qualitative study was conducted as part of the goals of care clinical trial. Study participants (n = 16) were family decision makers in North Carolina whose relative with advanced dementia died after participating in the goals of care intervention. Semi-structured interviews were analyzed using a qualitative description approach. Family members' experience of decision making and death differed based on the presence or absence of trusting relationships with NH staff. Family members who reported trust described a positive end-of-life experience and less need for prescribed goals of care discussions. In the absence of trust, family members reported that goals of care discussions were ignored by staff or created confusion. Among family members of persons who recently died from dementia in NHs, expressions of trust in staff were strongly related to perceptions of decision making about goals of care. Although goals of care discussions may potentially promote communication to earn trust, the presence of pre-existing trust ultimately influenced the decision making and end-of-life experiences of residents and families.

Needs and experiences of intensive care patients' families: a Saudi qualitative study.

PubMed

Al-Mutair, Abbas S; Plummer, Virginia; Clerehan, Rosemary; O'Brien, Anthony

2014-05-01

To identify the perceived needs of Saudi families of patients in Intensive Care in relation to their culture and religion. Admission of a family member to an intensive care unit (ICU) is a deeply distressing and often unexpected life event to the family. Families of critically ill patients have needs that should be acknowledged and met by the ICU team. Literature is virtually silent on the issue of recognizing the ICU family needs in relation to the influence of their cultural values and religious beliefs. A descriptive exploratory qualitative study. Individual, semi-structured interviews of a purposive sample of 12 family members were carried out between November 2011 and February 2012. The closest family members were recruited to participate in the interviews with a mean age of 44·25 years in eight mixed medical-surgical ICUs of eight major trauma hospitals in Saudi Arabia. The family needs and experiences are described via six major themes: looking for information, maintaining reassurance, spiritual healing, maintaining close proximity, involvement in care and support not being facilitated. The results indicated that family members sought to access information readily to diminish their anxiety. They also needed to be reassured that the best care was being delivered to their loved one and to feel supported during this critical time. Saudi families have cultural and spiritual healing beliefs and practices including faith in God and that God is the ultimate healer, reading of the Qur'an, prayer and charity. These lessen their stress and connect them to hold on to hope. In addition, maintaining proximity to their ill family member was considered of the greatest importance to the families. The study provided an in-depth understanding of the family members' experience of having a relative in Intensive Care and focussed on a range of unmet needs, particularly those related to culture and religion. The ICU team need to work collaboratively with family members to improve their experience. The recognition of family needs, experiences and situations can enhance the care provided by the critical care team to patients and families. © 2013 British Association of Critical Care Nurses.

Directing Improvements in Primary Care Patient Experience through Analysis of Service Quality.

PubMed

Hudson Smith, Mel; Smith, David

2018-06-03

To examine the influence of dimensions of service quality on patient experience of primary care. Data from the national GP Patient Survey in England 2014/15, with responses from 858,351 patients registered at 7,918 practices. Expert panel and principal component analysis helped identify relevant dimensions of service quality. Regression was then used to examine the relationships between these dimensions and reported patient experience. Aggregated scores for each practice were used, comprising the proportion of positive responses to each element of the study. Of eight service quality dimensions identified, six have statistically significant impacts on patient experience but only two have large effects. Patient experience is highly influenced by practice responsiveness and the interactions with the physician. Other dimensions have small or even slightly negative influence. Service quality provided by nurses has negligible effect on patient experience. To improve patient experience in primary health care, efforts should focus on practice responsiveness and interactions with the physician. Other areas have little influence over patient experience. This suggests a gap in patients' perspectives on health care, which has policy implications for patient education. © Health Research and Educational Trust.

Use of multiple patient simulators to enhance prioritizing and delegating skills for senior nursing students.

PubMed

Kaplan, Barbara; Ura, Darla

2010-07-01

The student clinical experience is rich, yet challenges arise in providing experiences where leadership skills can be developed and used in nursing practice. To increase student confidence and enhance student ability to safely and effectively prioritize, delegate, and implement care for numerous patients, a simulation-based learning (SBL) experience was developed. The SBL experience involves multiple patient simulators, case study analysis, and a debriefing session. Ninety-seven senior nursing students participated in this program. Students reported through Likert surveys to either "agree" or "strongly agree" that the SBL was well organized (87%, n = 84), prompted realistic expectations (59%, n = 57), the scenarios were believable (73%, n = 71), case studies increased understanding (66%, n = 64), and that the SBL experience increased understanding of prioritizing and delegating care (69%, n = 67). Seventy-eight percent (n = 76) reported "more confidence in ability to work as a team" and 55% (n = 52) reported "more confidence in prioritizing and delegating care." Copyright 2010, SLACK Incorporated.

Integrating preventive care and nursing standardized terminologies in nursing education: a case study.

PubMed

Burkhart, Lisa; Sommer, Sheryl

2007-01-01

This study investigated the development of a community-focused curriculum integrating primary, secondary, and tertiary prevention and nursing standardized terminologies as an organizing infrastructure. This is a case study of the curriculum redesign of the Marcella Niehoff School of Nursing, Loyola University Chicago. Faculty developed a conceptual framework integrating core concepts into curriculum design, course content, and clinical applications. A coherent curriculum was designed using a community-focused approach; primary, secondary, and tertiary prevention strategies; and standardized terminologies as the organizing infrastructure to teach and apply nursing practice. The curriculum provides a meaningful correlation between the classroom and clinical experience. Students journey with their patients throughout the health care experience, applying nursing concepts using standardized terminologies. Clinical experiences provide students with the opportunity to transfer knowledge to the health experiences of patients in their care. Patient encounters, whether at the primary, secondary, or tertiary level of prevention, are used to assist students in developing critical thinking skills through the use of standardized nursing terminologies.

The Experience of Caring For or Living with an Individual with an Eating Disorder: A Meta-Synthesis of Qualitative Studies.

PubMed

Fox, John Re; Dean, Madeleine; Whittlesea, Anna

2017-01-01

Eating disorders (ED) has the highest mortality rate of psychiatric disorders and a high incidence of comorbidity. Because of the average age of onset, care typically befalls family members. However, despite the severity of the disorder and the burden placed on the family, research into the caregiving experience is still developing. Studies have shown caregivers of individuals with ED to experience high levels of distress, burden and expressed emotion. Recent theoretical models have underscored the importance of caregivers' responses as a maintenance factor for the ED, and family therapy has proved efficacious. However, the literature pertaining to the experience of family members living with or caring for an individual with an ED has not been systematically reviewed. This review aimed to synthesize qualitative studies relating to the caring experience and its impact, thereby gaining an understanding from the perspective of the individuals themselves. Relevant search terms were utilized to systematically search key databases. Twenty studies, with a total sample of 239 participants, met the inclusion criteria. Nine core themes emerged from the synthesis, forming the basis of an explanatory theory. The ED was found to have a pervasive impact upon family members, mediated by a number of factors. Cognitive appraisals affected the caregiving experience and responses to the individual. The experience of caregiving was continually reappraised leading to a process of adaptation. The majority of studies identified unmet carer needs. The implications of the findings are discussed with reference to existing theoretical models and in terms of clinical practice. Copyright © 2015 John Wiley & Sons, Ltd. Carers experience a significant amount of guilt and distress once they have found out about their loved one's eating disorder. Across the studies, there were many themes of unmet need for carers. Siblings have often been overlooked by both clinicians and researchers. Interventions for people with eating disorders should also acknowledge carers and close family members. Copyright © 2015 John Wiley & Sons, Ltd.

Parents' experience of living with and caring for an adult son or daughter with schizophrenia at home in Ireland: a qualitative study.

PubMed

McAuliffe, R; O'Connor, L; Meagher, D

2014-03-01

This study explored the experience of parents living with, and caring for, an adult son or daughter with schizophrenia. There is increasing emphasis on the involvement of carers and users in the care for people with schizophrenia. 'A Vision for Change' highlights the need for a partnership approach and emphasizes that carers are an integral part in the planning and delivery of mental health services. In order to meet such requests, it was necessary to explore the meaning of caregiving for Irish families. A descriptive qualitative design was used to enable parents to describe their experiences. Semi-structured, in-depth interviews with a convenience sample of six parents in Ireland were carried out in 2007. The study encompassed four major themes: psychological tsunami, caring activities, coping with enduring illness and an uncertain pathway. Parents reported severe psychological distress when their son or daughter was diagnosed with schizophrenia. Their deep sense of loss was followed by acceptance of the situation. Feelings of love and a sense of responsibility helped to give meaning to their caring role. This study gave a voice to some parents of a son or daughter with schizophrenia. A family-centred approach should be at the core of care planning for this vulnerable population. © 2013 John Wiley & Sons Ltd.

Why Do Women Not Use Antenatal Services in Low- and Middle-Income Countries? A Meta-Synthesis of Qualitative Studies

PubMed Central

Finlayson, Kenneth; Downe, Soo

2013-01-01

Background Almost 50% of women in low- and middle-income countries (LMICs) don't receive adequate antenatal care. Women's views can offer important insights into this problem. Qualitative studies exploring inadequate use of antenatal services have been undertaken in a range of countries, but the findings are not easily transferable. We aimed to inform the development of future antenatal care programmes through a synthesis of findings in all relevant qualitative studies. Methods and Findings Using a predetermined search strategy, we identified robust qualitative studies reporting on the views and experiences of women in LMICs who received inadequate antenatal care. We used meta-ethnographic techniques to generate themes and a line-of-argument synthesis. We derived policy-relevant hypotheses from the findings. We included 21 papers representing the views of more than 1,230 women from 15 countries. Three key themes were identified: “pregnancy as socially risky and physiologically healthy”, “resource use and survival in conditions of extreme poverty”, and “not getting it right the first time”. The line-of-argument synthesis describes a dissonance between programme design and cultural contexts that may restrict access and discourage return visits. We hypothesize that centralised, risk-focused antenatal care programmes may be at odds with the resources, beliefs, and experiences of pregnant women who underuse antenatal services. Conclusions Our findings suggest that there may be a misalignment between current antenatal care provision and the social and cultural context of some women in LMICs. Antenatal care provision that is theoretically and contextually at odds with local contextual beliefs and experiences is likely to be underused, especially when attendance generates increased personal risks of lost family resources or physical danger during travel, when the promised care is not delivered because of resource constraints, and when women experience covert or overt abuse in care settings. Please see later in the article for the Editors' Summary PMID:23349622

Why do women not use antenatal services in low- and middle-income countries? A meta-synthesis of qualitative studies.

PubMed

Finlayson, Kenneth; Downe, Soo

2013-01-01

Almost 50% of women in low- and middle-income countries (LMICs) don't receive adequate antenatal care. Women's views can offer important insights into this problem. Qualitative studies exploring inadequate use of antenatal services have been undertaken in a range of countries, but the findings are not easily transferable. We aimed to inform the development of future antenatal care programmes through a synthesis of findings in all relevant qualitative studies. Using a predetermined search strategy, we identified robust qualitative studies reporting on the views and experiences of women in LMICs who received inadequate antenatal care. We used meta-ethnographic techniques to generate themes and a line-of-argument synthesis. We derived policy-relevant hypotheses from the findings. We included 21 papers representing the views of more than 1,230 women from 15 countries. Three key themes were identified: "pregnancy as socially risky and physiologically healthy", "resource use and survival in conditions of extreme poverty", and "not getting it right the first time". The line-of-argument synthesis describes a dissonance between programme design and cultural contexts that may restrict access and discourage return visits. We hypothesize that centralised, risk-focused antenatal care programmes may be at odds with the resources, beliefs, and experiences of pregnant women who underuse antenatal services. Our findings suggest that there may be a misalignment between current antenatal care provision and the social and cultural context of some women in LMICs. Antenatal care provision that is theoretically and contextually at odds with local contextual beliefs and experiences is likely to be underused, especially when attendance generates increased personal risks of lost family resources or physical danger during travel, when the promised care is not delivered because of resource constraints, and when women experience covert or overt abuse in care settings.

Health and Social Care Practitioners' Experiences of Assessing Mental Capacity in a Community Learning Disability Team

ERIC Educational Resources Information Center

Ratcliff, Daniel; Chapman, Melanie

2016-01-01

Background: The study explored experiences of health and social care practitioners within a community learning disability team in undertaking mental capacity assessments with people with learning disabilities. Materials and Methods: Eight practitioners were interviewed using a semi-structured interview schedule. Results: The information gained was…

Caring for Students with Type 1 Diabetes: School Nurses' Experiences

ERIC Educational Resources Information Center

Wang, Yueh-Ling; Volker, Deborah L.

2013-01-01

This qualitative study used a Husserlian phenomenological approach to obtain an understanding of the essences of five experienced Taiwanese school nurses' lived experience of caring for students with type 1 diabetes mellitus (T1DM). Audio-recorded, semi-structured, in-depth interviews were conducted. Data analysis entailed a modified method from…

Experiences of health care in women with Peripartum Cardiomyopathy in Sweden: a qualitative interview study.

PubMed

Patel, Harshida; Schaufelberger, Maria; Begley, Cecily; Berg, Marie

2016-12-08

Peripartum cardiomyopathy is often associated with severe heart failure occurring towards the end of pregnancy or in the months following birth with debilitating, exhausting and frightening symptoms requiring person-centered care. The aim of this study was to explore women's experiences of health care while being diagnosed with peripartum cardiomyopathy. Qualitative interviews were conducted with 19 women with peripartum cardiomyopathy in Sweden, following consent. Data were analysed using qualitative content analysis. Confirmability was ensured by peer-debriefing, and an audit trail was kept to establish the credibility of the study. The main theme in the experience of health care was, 'Exacerbated Suffering', expressed in three subthemes; 'not being cared about', 'not being cared for' and 'not feeling secure.' The suffering was present in relation to the illness with failing health symptoms, but most of all in relation to not being taken seriously and adequately cared for by healthcare professionals. Women felt they were on an assembly line in midwives' routine work where knowledge about peripartum cardiomyopathy was lacking and they showed distrust and dissatisfaction with care related to negligence and indifference experienced from healthcare professionals. Feelings of being alone and lost were prominent and related to a sense of insecurity, distress and uneasiness. This study shows a knowledge gap of peripartum cardiomyopathy in maternity care personnel. This is alarming as the deprecation of symptoms and missed diagnosis of peripartum cardiomyopathy can lead to life-threatening consequences. To prompt timely diagnosis and avoid unnecessary suffering it is important to listen seriously to, and respect, women's narratives and act on expressions of symptoms of peripartum cardiomyopathy, even those overlapping normal pregnancy symptoms.

Getting to know you: mothers' experiences of kangaroo care.

PubMed

Roller, Cyndi Gale

2005-01-01

To reveal mothers' experiences of providing kangaroo care for their preterm newborns while still in the hospital. Transcendental phenomenology was used to analyze the experiences of mothers providing kangaroo care for their preterm newborns. Tape recorded, semistructured interviews were conducted 1 to 4 weeks postpartum. Mothers were asked one grand tour question, "What was it like for you to provide kangaroo care for your preterm infant while in the hospital?" This study was the qualitative component of a randomized clinical trial. Ten women who provided kangaroo care for their preterm newborns, 32-36 completed weeks, weighing 1500-3000 grams, with APGAR scores 6 or greater at 1 minute, 7 or greater at 5 minutes. Four dominant themes emerged. The themes were reduced to one essential structure of knowing. The two essential elements of the structure of knowing were mothers kept from knowing their preterm newborn and mothers getting to know their preterm newborn. Kangaroo care facilitates bonding and enhances maternal-infant acquaintance, even in the neonatal intensive care unit (NICU) environment. Mothers found that kangaroo care calmed them and their newborns.

Identifying providers of care to individuals with human immunodeficiency virus for a mail survey using a prescription tracking database.

PubMed

Bach, P B; Calhoun, E A; Bennett, C L

1999-02-01

Unlike cancer and other illnesses for which specialists provide the majority of care for affected individuals, care of those infected with human immunodeficiency virus (HIV) is provided by generalists and many different types of specialists. To assess the utility of a prescription tracking database in identifying low experience and high-experience providers of such care regardless of specialty, we mailed a survey to 1500 physicians identified as having written prescriptions for agents used in care of HIV-infected individuals in the year before the survey. We discovered that physicians who care for patients with acquired immunodeficiency syndrome (AIDS) in the United States come from a broad range of specialties and practice in a variety of settings. Self-report of experience with AIDS care in the prior year was strongly associated with the number of HIV-related prescriptions identified in the tracking information. Response rates were consistent with those of other surveys published in medical journals. This study suggests that prescription tracking databases can be used to identify the breadth of physician/subjects who provide care for patients with HIV infection.

Career success perception and work-related behaviour of employees in geriatric care--a pilot study in a German geriatric care facility.

PubMed

Eith, Thilo K; Stummer, Harald; Schusterschitz, Claudia

2011-03-01

One of the job characteristics of geriatric care is the long-term relationship of the employees to the elderly people they are interacting with. However, these relationships are characterised by the fact that despite the care provided by the employees, the patients experience physical suffering during the relationship, which often ends with their deaths. Although that is to be expected in this profession, it can be interpreted as personal failure and may be a reason why employees in geriatric care feel exhausted and perceive strain and stress in the job. The objective of this study was to explore the influence of career success perceptions on geriatric care staffs' coping and work-related behaviour. Data were collected in 2008 in a German geriatric care facility using the standardised psychometric questionnaire 'AVEM' (Occupational Stress and Coping Inventory) as well as a previously developed ranking of career success dimensions in geriatric care. The 69 employees, who participated were of various age groups, had different work experience and were working in distinct areas of expertise. The results show that men experience higher success at work and have more career ambitions than women. Differences in age with regard to success perception at work could not be identified. However, there is an influence of the intensity of contact between patient and employees on the perception of career success. Also, a correlation between the career success dimension happiness in the job and work experience could be verified. The current results show no impact of subjective career success dimensions on work-related coping behaviour. At the same time, the results point to differences in the relevance of subjective career success dimensions regarding the demographics of employees in geriatric care. Thus, demographics may be considered as health resources and can have positive health impacts for employees in caring-professions. © 2010 The Authors. Scandinavian Journal of Caring Sciences © 2010 Nordic College of Caring Science.

We Still Have a Lot to Learn: Learning Experiences of Individuals Age 80 and Older in Care Facilities in a Midwestern State

ERIC Educational Resources Information Center

Grebert, Sheila

2012-01-01

This qualitative study focused on the learning experiences of individuals, age 80 and older, in care facilities in a Midwestern state. Even with the well documented growth of the over age 85 demographic, there are few studies about learning that included this demographic or considered the wants and needs of this group. Using a phenomenological…

The End-of-Life Experience in Long-Term Care: Five Themes Identified from Focus Groups with Residents, Family Members, and Staff

ERIC Educational Resources Information Center

Munn, Jean C.; Dobbs, Debra; Meier, Andrea; Williams, Christianna S.; Biola, Holly; Zimmerman, Sheryl

2008-01-01

Purpose: We designed this study to examine the end-of-life (EOL) experience in long-term care (LTC) based on input from key stakeholders. Design and Methods: The study consisted of 10 homogeneous focus groups drawn from a purposive sample of LTC residents (2 groups; total n = 11), family caregivers (2 groups; total n = 19), paraprofessional staff…

Integrative Review: Delivery of Healthcare Services to Adolescents and Young Adults During and After Foster Care.

PubMed

Collins, Jennifer L

The purpose of this integrative review is to summarize evidence describing delivery of healthcare services to adolescents while in foster care and to young adults after they exit foster care. The long-term, deleterious effect of abuse and/or neglect by caregivers among youth who have been placed in foster care is grounded in empirical evidence demonstrating the relationship between long-term health needs and exposure to trauma in childhood. Evidence is needed to provide culturally-specific care and also to identify knowledge gaps in the care of adolescents and young adults who have been in the foster care system. Peer-reviewed research studies published between 2004 and 2014 that include samples of youth 12 to 30 years of age are included in the review. Eighteen studies met inclusion criteria for the review. Physical and behavioral healthcare needs among youth with foster care experience are significant. The ability to adequately meet health needs are inextricable from the ability to negotiate resources and to successfully interact with adults. Challenges that youth with foster care histories experience when transitioning into young adulthood are comparable to other populations of vulnerable youth not in foster care. Nurses must use each healthcare encounter to assess how the social determinants of health facilitate or impede optimal health among youth with foster care experience. The development of integrated intervention strategies to inform best practice models is a priority for current and former foster care youth as they transition into young adulthood. Copyright © 2016 Elsevier Inc. All rights reserved.

Planning a study abroad clinical experience.

PubMed

Wright, Dolores J

2010-05-01

Not only is globalization expanding areas of human activity, it is also influencing the variety of educational offerings in universities. Therefore, globalization must be considered by nurse educators as they reevaluate ways of preparing nursing students to meet the health care needs of populations they currently serve and will care for in the future. Study abroad programs have been encouraged to be part of the college experience in the United States for more than 30 years; however, these programs have been relatively lacking in nursing education. Most of the study abroad programs described in the nursing literature are research-based or first-person accounts of an experience and provide little information about planning a study abroad program. This article describes a study abroad learning experience for senior nursing students and discusses the issues such as student selection, student safety, and available clinical experiences that need to be considered before undertaking such an endeavor.

The lived experiences of resilience in Iranian adolescents living in residential care facilities: A hermeneutic phenomenological study

PubMed Central

Nourian, Manijeh; Nourozi Tabrizi, Kian; Rassouli, Maryam; Biglarrian, Akbar

2016-01-01

Background Resilience is one of the main factors affecting human health, and perceiving its meaning for high-risk adolescents is of particular importance in initiating preventive measures and providing resilience care. Objectives This qualitative study was conducted to explain the meaning of resilience in the lived experiences of Iranian adolescents living in governmental residential care facilities. Materials and methods This study was conducted using the hermeneutic phenomenological method. Semi-structured interviews were conducted with eight adolescents aged 13–17 living in governmental residential care facilities of Tehran province affiliated to the Welfare Organization of Iran who articulated their experiences of resilience. Sampling lasted from May 2014 to July 2015 and continued until new themes were no longer emerging. The researchers analyzed the verbatim transcripts using Van Manen's six-step method of phenomenology. Results The themes obtained in this study included “going through life's hardships,” “aspiring for achievement,” “self-protection,” “self-reliance,” and “spirituality.” Conclusion Our study indicates that the meaning of resilience coexists with self-reliance in adolescents’ lived experiences. Adolescents look forward to a better future. They always trust God in the face of difficulties and experience resilience by keeping themselves physically and mentally away from difficulties. Adverse and bitter experiences of the past positively affected their positive view on life and its difficulties and also their resilience. The five themes that emerged from the findings describe the results in detail. The findings of this study enable nurses, health administrators, and healthcare providers working with adolescents to help this vulnerable group cope better with their stressful life conditions and improve their health through increasing their capacity for resilience. PMID:26942909

The Lived Experience of Jordanian Parents in a Neonatal Intensive Care Unit: A Phenomenological Study.

PubMed

Abuidhail, Jamila; Al-Motlaq, Mohammad; Mrayan, Lina; Salameh, Taghreed

2017-04-01

Many international studies in the field of neonatal nursing have identified parental stress, coping difficulties, support issues, and various other experiences that are related to the birth of a preterm infant. However, no studies have assessed the interrelated issues of parental stress, social support, satisfaction, and nursing support in neonatal intensive care units (NICUs) in Jordan. This study describes the lived experiences, needs in relation to care, and support systems of parents whose neonates were admitted to the NICU. A qualitative design using a phenomenological approach was used to explore the experiences of Jordanian parents who gave birth to neonates in the NICU setting. Participants were recruited from the NICUs of government, teaching, and private hospitals. Data were collected using semistructured interviews that were conducted with parents in a suitable place. Ten participants were interviewed: eight mothers and two fathers. After interviews were transcribed, the methodology suggested by van Manen (1990) was used to analyze the data. The shock, worry, and anxiety experienced by parents; the influences of NICU admission on the experiences of parents and families; the information and assistance required and received by parents from healthcare professionals; and the emotions and satisfaction of parents were the main themes that emerged from the study to reflect the lived experience of parents of neonates in the NICU. The parents in this study were satisfied with the healthcare process in the NICUs, even when this care did not fulfill their expectations or needs for their infants. Nurses in the NICUs must develop interventions and strategies that minimize the stress experienced by parents and that support the emotional capacity of parents to deal with this stressful situation.

Nurse in limbo: A qualitative study of nursing in disasters in Iranian context

PubMed Central

Norouzi, Kian; Ahmadi, Fazlollah; Hosseini, Mohammadali; Khankeh, Hamidreza

2017-01-01

Background An understanding of nurses’ experiences in disasters can help to identify their problems in this area. These can be overcome with better planning and preparation. The aim of this study was to explore the experiences and perceptions of disaster nurses regarding their provision of disaster health care services. Methods This was a qualitative study using an inductive qualitative content analysis. Participants included 15 Iranian nurses who had experiences of health care delivery in disasters. A purposeful sampling was applied until data saturation was reached. Data were collected using semi-structured interviews and then analyzed based on the principle of inductive content analysis. Results Five main categories emerged from the experiences and perceptions of nurses who were involved in providing health care services in disasters: afraid of probability of recurrence, necessity of providing healthcare services for an unknown period of time, challenge of what to prioritize, nurses’ own conflicting emotions, and their concern for their own families. Discussion There are several factors affecting the delivery of healthcare in disasters. Nurses, who feel better prepared and have some understanding of the ethical implications of working under different standards of care, may be more comfortable with care giving in disasters. Appropriately, training and preparing nurses for disasters is important for optimizing the safe functioning and minimizing emotional and psychological damage. PMID:28759598

[The experience of women care cargivers with chronic conditions of dependent relatives].

PubMed

Martínez Marcos, Mercedes; De la Cuesta Benjumea, Carmen

2016-02-01

To describe the experience of women caregivers with chronic conditions who care for a dependent relative. Qualitative study based on constructivist grounded theory. Study conducted on two Health Areas urban of the Community of Madrid. Thirty nine women with a chronic condition who take care of dependent relatives were selected by means of purposive sampling. Data were collected through 23 semi-structured interviews and 2 focus groups between April 2010 and December 2011. Grounded theory procedures were used in the data analysis. To feel their life hampered describes the subjective experience of family caregivers with chronic conditions who take care of a dependent relative. When comparing their past life with the current life they become aware of the losses they have suffered over time. They feel less strong, sadder and less free; they worry about how to meet the demands of family care. The life they are leading makes them question the meaning of their own lives. This study shows the losses realized day by day by women caregivers with a chronic illness, which lead them to lose the meaning of their own lives. To know the experience of these women caregivers will help develop interventions and specific services that compensate for the losses they feel and help improve their quality of living. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.

Health care experiences among women diagnosed with gestational breast cancer.

PubMed

Hammarberg, K; Sullivan, E; Javid, N; Duncombe, G; Halliday, L; Boyle, F; Saunders, C; Ives, A; Dickinson, J E; Fisher, J

2018-03-01

Gestational breast cancer (GBC) presents many challenges for women and the clinicians who care for them. The aim of this study was to explore the health care experiences of women diagnosed with GBC to inform and improve clinical care of women in this predicament. Semi-structured interviews were conducted with 17 women who had been diagnosed with GBC in the previous 5 years. The overarching themes for perceived quality of care were "communication" and "comprehensive care." "Communication" had two sub themes: "interdisciplinary communication" (the way health professionals from different disciplines communicated with each other about the management of the woman's care) and "patient communication" (how they communicated this to the woman). The "comprehensive care" theme incorporated three sub themes: "the spirit" (psychological care); "the mind" (information provision); and "the body" (management of treatment side effects). Women's own accounts of positive and negative experiences of GBC care provide unique and specific insights which improve understanding of their concerns and needs. The findings can inform advances in quality and efficacy of clinical care; offer guidance for obstetricians, oncologists and allied health professionals about the needs of women diagnosed with GBC and how care can be optimised; and inform the development of resources to assist women and their families. © 2017 John Wiley & Sons Ltd.

Exploring midwifery students' views and experiences of caseload midwifery: A cross-sectional survey conducted in Victoria, Australia.

PubMed

Dawson, Kate; Newton, Michelle; Forster, Della; McLachlan, Helen

2015-02-01

in Australia, models of maternity care that offer women continuity of care with a known midwife have been promoted. Little is known about the intentions of the future midwifery workforce to work in such models. This study aimed to explore midwifery students' views and experiences of caseload midwifery and their work intentions in relation to the caseload model following graduation. cross-sectional survey. Victoria, Australia. 129 midwifery students representing all midwifery course pathways (Post Graduate Diploma, Bachelor of Midwifery, Bachelor of Nursing/Bachelor of Midwifery) in Victoria. midwifery students from all course pathways considered that continuity of care is important to women and indicated that exposure to continuity models during their course was very positive. Two-thirds of the students (67%) considered that the continuity experiences made them want to work in a caseload model; only 5% reported that their experiences had discouraged them from continuity of care work in the future. Most wanted a period of consolidation to gain experience as a midwife prior to commencing in the caseload model. Perceived barriers to caseload work were being on-call, and challenges in regard to work/life balance and family commitments. midwifery students in this study were very positive about caseload midwifery and most would consider working in caseload after a period of consolidation. Continuity of care experiences during students' midwifery education programmes appeared to provide students with insight and understanding of continuity of care for both women and midwives. Further research should explore what factors influence students' future midwifery work, whether or not their plans are fulfilled, and whether or not the caseload midwifery workforce can be sustained. Copyright © 2014 Elsevier Ltd. All rights reserved.

“You Get Beautiful Teeth Down There”: Racial/Ethnic Minority Older Adults’ Perspectives on Care at Dental School Clinics

PubMed Central

Northridge, Mary E.; Schenkel, Andrew B.; Birenz, Shirley; Estrada, Ivette; Metcalf, Sara S.; Wolff, Mark S.

2017-01-01

To help eliminate reported racial/ethnic and socioeconomic inequities in oral health care, listening to the perspectives of racial/ethnic minority older adults on their experiences with dental school clinics is needed. The aim of this study was to examine the experiences of African American, Puerto Rican, and Dominican older adults who attend senior centers in upper Manhattan, New York City, regarding the care received at dental school clinics. Focus groups were conducted from 2013 to 2015 with 194 racial/ethnic minority men and women aged 50 years and older living in upper Manhattan. All of the 24 focus group sessions were digitally audiorecorded and transcribed for analysis. Groups conducted in Spanish were transcribed first in Spanish and then translated into English. Analysis of the transcripts was conducted using thematic content analysis. Seven subthemes were manifest in the data related to these adults’ positive experiences with dental school clinics: excellent outcomes and dentists, painless and safe treatment, affordable care, honest and reputable, benefits of student training, accepting and helpful, and recommended by family and friends. Negative experiences centered around four subthemes: multiple visits required for treatment, loss of interpersonal communication due to use of technology, inconvenient location, and perceived stigma with Medicaid. This study provided novel evidence of the largely positive experiences with dental schools of racial/ethnic minority senior center attendees. Interventions targeted at the organization and provider level, including organizational motivation, resources, staff attributes, climate, and teamwork plus payment programs and services, insurance and affordability, and provider- and system-level supports, may improve health care processes and patient experiences of care. PMID:29093140

"You Get Beautiful Teeth Down There": Racial/Ethnic Minority Older Adults' Perspectives on Care at Dental School Clinics.

PubMed

Northridge, Mary E; Schenkel, Andrew B; Birenz, Shirley; Estrada, Ivette; Metcalf, Sara S; Wolff, Mark S

2017-11-01

To help eliminate reported racial/ethnic and socioeconomic inequities in oral health care, listening to the perspectives of racial/ethnic minority older adults on their experiences with dental school clinics is needed. The aim of this study was to examine the experiences of African American, Puerto Rican, and Dominican older adults who attend senior centers in upper Manhattan, New York City, regarding the care received at dental school clinics. Focus groups were conducted from 2013 to 2015 with 194 racial/ethnic minority men and women aged 50 years and older living in upper Manhattan. All of the 24 focus group sessions were digitally audiorecorded and transcribed for analysis. Groups conducted in Spanish were transcribed first in Spanish and then translated into English. Analysis of the transcripts was conducted using thematic content analysis. Seven subthemes were manifest in the data related to these adults' positive experiences with dental school clinics: excellent outcomes and dentists, painless and safe treatment, affordable care, honest and reputable, benefits of student training, accepting and helpful, and recommended by family and friends. Negative experiences centered around four subthemes: multiple visits required for treatment, loss of interpersonal communication due to use of technology, inconvenient location, and perceived stigma with Medicaid. This study provided novel evidence of the largely positive experiences with dental schools of racial/ethnic minority senior center attendees. Interventions targeted at the organization and provider level, including organizational motivation, resources, staff attributes, climate, and teamwork plus payment programs and services, insurance and affordability, and provider- and system-level supports, may improve health care processes and patient experiences of care.

Internal Medicine Residents' Beliefs, Attitudes, and Experiences Relating to Palliative Care: A Qualitative Study.

PubMed

Kawaguchi, S; Mirza, R; Nissim, R; Ridley, J

2017-05-01

Internal medicine residents are frequently called upon to provide palliative care to hospitalized patients, but report feeling unprepared to do so effectively. Curricular development to enhance residents' palliative care skills and competencies requires an understanding of current beliefs, attitudes and learning priorities. We conducted a qualitative study consisting of semi-structured interviews with ten internal medicine residents to explore their understanding of and experiences with palliative care. All of the residents interviewed had a sound theoretical understanding of palliative care, but faced many challenges in being able to provide care in practice. The challenges described by residents were system-related, patient-related and provider-related. They identified several priority areas for further learning, and discussed ways in which their current education in palliative care could be enhanced. Our findings provide important insights to guide curricular development for internal medicine trainees. The top five learning priorities in palliative care that residents identified in our study were: 1) knowing how and when to initiate a palliative approach, 2) improving communication skills, 3) improving symptom management skills, 4) identifying available resources, and 5) understanding the importance of palliative care. Residents felt that their education in palliative care could be improved by having a mandatory rotation in palliative care, more frequent didactic teaching sessions, more case-based teaching from palliative care providers, opportunities to be directly observed, and increased support from palliative care providers after-hours.

Grief after patient death: direct care staff in nursing homes and homecare.

PubMed

Boerner, Kathrin; Burack, Orah R; Jopp, Daniela S; Mock, Steven E

2015-02-01

Patient death is common in long-term care (LTC). Yet, little attention has been paid to how direct care staff members, who provide the bulk of daily LTC, experience patient death and to what extent they are prepared for this experience. To 1) determine how grief symptoms typically reported by bereaved family caregivers are experienced among direct care staff, 2) explore how prepared the staff members were for the death of their patients, and 3) identify characteristics associated with their grief. This was a cross-sectional study of direct care staff experiencing recent patient death. Participants were 140 certified nursing assistants and 80 homecare workers. Standardized assessments and structured questions addressed staff (e.g., preparedness for death), institutional (e.g., support availability), and patient/relational factors (e.g., relationship quality). Data analyses included bivariate group comparisons and hierarchical regression. Grief reactions of staff reflected many of the core grief symptoms reported by bereaved family caregivers in a large-scale caregiving study. Feelings of being "not at all prepared" for the death and struggling with "acceptance of death" were prevalent among the staff. Grief was more intense when staff-patient relationships were closer, care was provided for longer, and staff felt emotionally unprepared for the death. Grief symptoms like those experienced by family caregivers are common among direct care workers after patient death. Increasing preparedness for this experience via better training and support is likely to improve the occupational experience of direct care workers and ultimately allow them to provide better palliative care in nursing homes and homecare. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

"It's what we're here for:" nurses caring for military personnel during the Persian Gulf Wars.

PubMed

Rushton, Patricia; Scott, Jared E; Callister, Lynn Clark

2008-01-01

Military nursing service during wartime represents significant contributions to a unique type of health care. The purposes of this study were to: (1) generate themes that elucidate combat nursing experiences, (2) honor nurses who served by sharing their stories, and (3) permanently archive accounts of nursing personnel who served during the Persian Gulf Wars during the late 20th and early 21st centuries. Eleven military nurses who provided health care to American troops in the Persian Gulf participated in a historical study as part of the ongoing Nurses at War oral history project documenting the experiences of nurses during times of armed conflict. The overriding theme, "It's what we're here for," demonstrates the commitment of nurses: a commitment to care and to sacrifice. Other themes drawn from the study included lessons learned from their wartime nursing experiences, sacrifices made, and chronicles of caring. During armed conflict in the Persian Gulf Wars, military nurses' personal stories demonstrated the importance of being engaged in making meaningful professional and historical contributions. These nurses displayed professional commitment and hardiness in the face of difficult life circumstances, saying, "We did what we had to do."

Infant Day Care and Social Behaviour: An Analysis of Home, Individual and Group Care Effects.

ERIC Educational Resources Information Center

Melhuish, E. C.; And Others

Part of a longitudinal study of women and their first-born children who have different employment and day care experiences during the children's first three years of life, this study focuses on the socioemotional development of children at 18 months of age, who had received at least nine months of continuous day care. Particular attention is given…

Culturally diverse health care students' experiences with teaching strategies in Finland: a national survey.

PubMed

Pitkajarvi, Marianne; Eriksson, Elina; Pitkala, Kaisu

2013-06-01

All over the world, current health care students come from a variety of cultural, linguistic and educational backgrounds. Their expectations and learning needs vary, yet little is known about how our current education system meets their needs. The purpose of this study was to explore culturally diverse health care students' experiences of teaching strategies in polytechnic faculties of health care in Finland. Specifically, we aimed to compare how international students and Finnish students experience the same curriculum. A cross sectional survey. Ten polytechnic faculties of health care in Finland offering English-Language-Taught Degree Programmess (ELTDPs). 283 students studying nursing, public health nursing, or physiotherapy in English. Of these, 166 were international students and 112 were Finnish students. The data were collected using a questionnaire designed specifically for this study. The survey included items grouped into seven dimensions: 1. concreteness of theoretical instruction, 2. encouragement of student activity, 3. use of skills labs, 4. variation among teaching strategies, 5. assessment, 6. interaction in the English-Language-Taught Degree Programmes, and 7. approach to diversity in the English-Language-Taught Degree Programmes. The most positive experiences for all students were with the approach to cultural diversity and the concreteness of theoretical instruction, whereas the most negative experiences were with assessment. International students' experiences were more positive than Finnish students' in the following dimensions: encouragement of student activity (p=0.005), variation among teaching strategies (p<0.001), and assessment (p<0.001). Compared to the Finnish students, more than double the number of international students were dissatisfied with their lives (p<0.001). The implications for education include the strengthening teachers' leadership role in small group activities, providing individual and detailed feedback, and ensuring appropriate support mechanisms for all students. Copyright © 2012 Elsevier Ltd. All rights reserved.

[Family groups in nursing graduation teaching practice].

PubMed

de Assis, Aisllan Diego; da Silva, Priscila Patrícia; Claudino, Talita Xavier; de Oliveira, Alice Guimarães Bottaro

2010-09-01

The centers of psychosocial care (CAPS, acronym in Portuguese) are strategic devices for mental health care currently available in Brazil. Nurses are professionals required to compose the minimum staff of this device, which values the group activities involving users. This study presents a report of the experience of nursing undergraduates from Universidade Federal do Mato Grosso (UFMT) on their conducting waiting-room group sessions with relatives of users of a CAPS from Cuiabá, Mato Grosso state. This experience is justified by the fact that nursing students have few opportunities to develop group approach abilities during their graduation course, which focuses mainly on clinical individual care. The aim of the experience was to provide theoretical-practical learning of all the work stages of group work: recognizing the need and possibility of conducting the activity, planning, coordination and group evaluation. The results confirm the need and possibility of performing group experiences in mental health care and in nursing education.

Dentistry students' perceptions about an extramural experience with a Brazilian indigenous community.

PubMed

Bulgarelli, Alexandre Favero; Roperto, Renato Cassio; Mestriner, Soraya Fernandes; Mestriner, Wilson

2012-01-01

The aim of the present study was to evaluate dentistry students' perceptions about an extramural activity designed to deliver dental care to an indigenous community. This was a qualitative investigation involving 4 students of dentistry who had just had the experience of delivering treatment to indigenous Brazilian people. These students answered questions about the relevance of the experience to their personal and professional lives. We performed Content Analysis to data treatment and it was analysed by Social Representation Theory. Two social representations were reached: a) Being capable to promote oral health; b) Facing human feeling and respect each other. We concluded that participation in an extramural project improves the students' understanding of primary health care in dentistry. Such experiences help students develop a sense of cultural respect, comprehensive care, and to understand patients in their totality as social beings with their own values, beliefs, and attitudes regarding oral health care.

Nonfamily Experience and Receipt of Personal Care in a Rapidly Changing Context

PubMed Central

Yarger, Jennifer; Brauner-Otto, Sarah R.

2013-01-01

Scholars and policy makers have expressed concern that social and economic changes occurring throughout Asia are threatening the well-being of older adults by undercutting their systems of family support. Using a sample of 1,654 men and women aged 45 and older from the Chitwan Valley Family Study in Nepal, we evaluated the relationship between individuals’ nonfamily experiences, such as education, travel, and nonfamily living, and their likelihood of receiving personal care in older adulthood. Overall, we found that among individuals in poor health, those who had received more education, traveled to the capital city, or lived away from their families were less likely to have received personal care in the previous two weeks than adults who had not had these experiences. Our findings provide evidence that although familial connections remain strong in Nepal, experiences in new nonfamily social contexts are tied to lower levels of care receipt. PMID:24999289

Descriptions of fundamental care needs in cancer care-An exploratory study.

PubMed

Muntlin Athlin, Åsa; Brovall, Maria; Wengström, Yvonne; Conroy, Tiffany; Kitson, Alison L

2018-06-01

To explore the experiences of the fundamentals of care for people with a cancer diagnosis, from diagnosis to after adjuvant treatment. More focus is needed on the experience of people living with cancer, as current cancer care more emphasises on independence and resilience without fully acknowledging that there will be moments in the cancer journey where patients will need "basic nursing care" to manage their symptoms and care pathways. Secondary analysis of qualitative data. Secondary thematic analysis of interview data from 30 people with a diagnosis of breast (n = 10), colorectal (n = 10) or prostate (n = 10) cancer was undertaken. The findings revealed vivid descriptions of the fundamentals of care (i.e., basic needs) and participants described physical, psychosocial and relational aspects of the delivery of care. Both positive (e.g., supportive and kind) and negative (e.g., humiliating) experiences related to the relationship with the healthcare professionals were re-counted and affected the participants' experiences of the fundamentals of care. Participants' accounts of their fundamental care needs were provided without them identifying who, within the healthcare system, was responsible for providing these needs. Specific nursing interventions were seldom described. Some people with a cancer diagnosis have to strive for help and support from the nursing staff to manage to regain control over their recovery. Nurses in cancer care need to focus on the patients' fundamental care needs to optimise their patients' recovery. Cancer patients require support with their fundamental care needs and nurses need to be more aware of this and integrate it into the caring relationship. It is imperative that the complexity of the nurse-patient relationship is acknowledged and that models of care which honour this complexity are used. © 2018 John Wiley & Sons Ltd.

Oral care experiences and challenges in children with autism spectrum disorders.

PubMed

Stein, Leah I; Polido, José C; Najera, Sandy Oliver Lopez; Cermak, Sharon A

2012-01-01

The purpose of this study was to investigate the differences between children with autism spectrum disorders (ASD) and their typically developing peers in relation to aspects of oral care. Participants included 396 parents of ASD children or typically developing 2- to 18-year-olds. Parents completed a 37-item questionnaire designed by authors to elicit information about oral care in the home and dental office. Descriptive, bivariate, and multivariate regression analyses were conducted to examine the association between diagnostic group and oral care variables. Significantly more parents of ASD children than parents of typically developing children reported difficulty across almost all oral care variables explored, including oral care in the home, oral care at the dentist, and access to oral care. Following multivariate regression to control for possible confounders-including age, gender, Hispanic status, and paternal education level-all previously significant variables remained significant. This study indicates that children with autism spectrum disorders experience greater difficulties and barriers to care in both the home and dental office settings than their typically developing peers.

[Men as caregivers for their wives - two phenomenological studies of the experiences of male primary caregivers in home care arrangements. Part II: men as caregivers for their wives suffering from dementia].

PubMed

Bauernschmidt, Dorothee; Dorschner, Stephan

2014-10-01

In Germany, men participate more and more in the extensive process of caring for their relatives. Focus of the second study are husbands caring in home care for their wives suffering from dementia. Objective of the present study is to analyse the following questions, with focus on caring husbands: Firstly, how do caring husbands experience caring for their wives suffering from dementia? And secondly, how do they organise daily life? Narrative interviews with ten caring husbands were conducted. Analysis was performed using a modified phenomenological-interpretative approach as described by Diekelmann (1992). Seven central issues evolved: "Dementia is a mischievous disease …" (disease as lingering crisis); "But there is a commitment …" (relationship); "Quarrel, that's not resolved without efforts …" (conflict); "Nothing's left from that …" (loss); "The amount of care, it didn't decrease, it's getting more …" (care); "The world's getting smaller …" (limitations); "I don't dislike it when someone's around supporting me …" (support). "Being bonded" emerged as a constitutive pattern, according to which caring husbands perceive their own life situation. Caring husbands perceive and organise their wives' care situation individually. This includes their evaluation of professional assistance offers. Our findings point out the clear need for different offers of professional care givers when collaborating with caring husbands. Further research should focus on individual (long-time) care courses as well as reasons for declining professional assistance offers.

Academic and Behavioral Characteristics of Young Adolescents in Self-Care

ERIC Educational Resources Information Center

Shumow, Lee; Smith, Thomas J.; Smith, M. Cecil

2009-01-01

This study examines characteristics of young adolescents who experience self-care, associations between self-care and academic achievement, and whether associations of self-care with academic adjustment vary by child, family, or community characteristics. Using data from the nationally representative 1999 National Household Education Survey,…

The roles, barriers and experiences of rehabilitation therapists in disaster relief: post-earthquake Haiti 2010.

PubMed

Klappa, Susan; Audette, Jennifer; Do, Sandy

2014-01-01

This article describes the roles and experiences of rehabilitation therapists involved in disaster relief work (DRW) in Haiti after the 2010 earthquake. The results of a pilot study and phenomenological study are presented. A phenomenological study of rehabilitation providers' experiences in post-disaster relief care is presented along with preliminary pilot study results. The phenomenological study explored the experiences of therapists from a lived experience perspective through the roles they played in DRW. Participants provided disaster relief through direct patient care, adaptive equipment sourcing and allocation, education and training, community outreach and logistic or administrative duties. Barriers and challenges included: (1) emotions: ups and downs; (2) challenges: working at the edge of practice; (3) education: key to success and sustainability; (4) lessons learned: social responsibility is why we go; and (5) difficulty coming home: no one understands. Therapists play a key role in disaster relief situations. Data presented should encourage organizations to include therapists from early planning to implementation of relief services. Further studies are needed to evaluate the impact of rehabilitation interventions in disaster settings. Understanding the roles and experiences of therapists in disaster relief setting is important Certain barriers to providing care in post-disaster settings exist Those participating in disaster response should be well prepared and aware of that they might be asked to do.

Provider training and experience for people living with HIV/AIDS.

PubMed

Rackal, Julia M; Tynan, Anne-Marie; Handford, Curtis D; Rzeznikiewiz, Damian; Agha, Ayda; Glazier, Richard

2011-06-15

The complexity of HIV/AIDS raises challenges for the effective delivery of care. It is important to ensure that the expertise and experience of care providers is of high quality. Training and experience of HIV/AIDS providers may impact not only individual patient outcomes but increasingly on health care costs as well. The objective of this review is to assess the effects of provider training and experience on people living with HIV/AIDS on the following outcomes: immunological (ie. viral load, CD4 count), medical (ie. mortality, proportion on antiretrovirals), psychosocial (ie. quality of life measures) and economic outcomes (ie health care costs). We searched MEDLINE, EMBASE, Dissertation Abstracts International (DAI), CINAHL, HealthStar, PsycInfo, PsycLit, Social Sciences Abstracts, and Sociological Abstracts from January 1, 1980 through May 29, 2009.  Electronic searches were performed for abstracts from major international AIDS conferences. Reference lists from pertinent articles, books and review articles were retrieved and reviewed. Randomized controlled trials (RCTs), controlled clinical trials, cohort, case control, cross-sectional studies and controlled before and after designs that examined the qualifications/training and patient volume of HIV/AIDS care of providers caring for persons known to be infected with HIV/AIDS were included. At least two authors independently assessed trial quality and extracted data. Study authors were contacted for further information as required. Assessment of confounding factors was undertaken independently by two reviewers. A total of four studies (one randomized controlled trial, three non- randomized studies) involving 8488 people living with HIV/AIDS were included. The main findings of this review demonstrated a trend to improved outcomes when treated by a provider with more training/expertise in HIV/AIDS care in the outpatient (clinic) setting. Due to the heterogeneity of the included studies, we could not perform a meta-analysis. We present a descriptive review of the results. The results demonstrate improved medical outcomes when treated by a provider with more training/expertise in HIV/AIDS care in the outpatient (clinic) setting. Since all of these studies were conducted in North America, this does not address any issues regarding the level of training/expertise required by providers working in countries with more limited resources. Practitioners who do not consider themselves 'experts' in HIV/AIDS care and care for few of these patients need to seriously consider this review which demonstrates a trend towards worse patient outcomes when receiving care by those with low caseloads/training in HIV/AIDS care.

How work setting and job experience affect professional nurses' values.

PubMed

Fernández-Feito, Ana; Palmeiro-Longo, María Del Rosario; Hoyuelos, Salomé Basurto; García-Díaz, Vanesa

2017-01-01

The development of professional values in nursing is directly related to quality and ethical clinical practise and may also increase practitioner and patients' satisfaction. Some factors, such as work setting or work experience, can influence the importance granted to the professional values of nursing. To compare in primary care nurses and hospital care nurses the importance granted to professional values and to contrast this perception as a function of professional experience. Research design, participants and research context: Descriptive cross-sectional study. Participants were 380 nursing professionals from the public health system (primary care and hospital care). Three dimensions were analysed: ethics, professional expertise and professional mastery. Data were collected from January to June 2015. Ethical considerations: We obtained permission from the Ethics Committee and participants' informed consent. Hospital care professionals attached more importance to all the values analysed, regardless of their work experience. Ethical values, such as confidentiality and respect for the person, were considered to be very important in both systems. Values related to professional expertise obtained lower scores, especially in primary care. In general, professionals with more than 20 years' experience granted less importance to the values. The professional setting influenced the importance assigned to professional nursing values, and clear differences were observed between primary and hospital care. The domain of ethics was considered the most important. It is necessary to reflect on the significance attributed to professional values, especially in more expert nursing staff.

Effects of an interdisciplinary volunteer experience on students' knowledge of and attitudes toward the health care team.

PubMed

Gallagher, Heather; Cooper, Maryann; Durand, Cheryl

2010-01-01

To assess the effect of an interdisciplinary, volunteer clinical experience completed by physician assistant (PA), pharmacy, and nursing students and whether the experience will change students' knowledge of, or attitudes toward, a team approach to health care. Surveys were conducted before and after the project using a 5-point Likert scale that measured the impact of the project on a nonrandom sample of PA, pharmacy, and nursing students who completed a minimum of four hours of service at Head Start preschool sites in southern New Hampshire. Students were recruited through email announcements and a lunchtime information session describing the program. Presurveys were completed using Blackboard before the student's scheduled participation day. Postsurveys were completed onsite at the end of the volunteer time. Surveys were blinded using a number and letter code. Students' knowledge (survey questions 1-4) and attitudes (survey questions 5-7) toward the health care team were evaluated in several areas including the importance of working in a team, knowledge level of other team members, awareness of community agencies as part of the team, and the importance of communication within the health care team. Paired t-tests were used to determine whether significant changes occurred in attitudes or knowledge as a result of the interdisciplinary volunteer experience. Approval of the study protocol was granted by the college's institutional review board. Statistically significant increases were noted in awareness of community resources, understanding of the strengths and skills of other members of the health care team, and experiences in working with other disciplines. Student attitudes toward a team approach to health care did not significantly change as a result of this experience. Enabling students to interact with other disciplines and to provide care to patients significantly increased students' awareness of community resources as well as their understanding of the strengths and skills of other members of the health care team. Students also gained experience working in a health care team. This demonstrates that a volunteer experience involving interdisciplinary collaboration can be used to enhance students' knowledge of the health care team.

Measuring Patients' Experience of Rehabilitation Services Across the Care Continuum. Part I: A Systematic Review of the Literature.

PubMed

McMurray, Josephine; McNeil, Heather; Lafortune, Claire; Black, Samantha; Prorok, Jeanette; Stolee, Paul

2016-01-01

To identify empirically tested survey instruments designed to measure patient experience across a rehabilitative care system. A comprehensive search was conducted of the MEDLINE (PubMed), CINAHL (EBSCO), and PsycINFO (APA PsycNET) databases from 2004 to 2014. Further searches were conducted in relevant journals and the reference lists of the final accepted articles. Of 2472 articles identified, 33 were selected for inclusion and analysis. Articles were excluded if they were unrelated to rehabilitative care, were anecdotal or descriptive reports, or had a veterinary, mental health, palliative care, dental, or pediatric focus. Four reviewers performed the screening process. Interrater reliability was confirmed through 2 rounds of title review (30 articles each) and 1 round of abstract review (10 articles), with an average κ score of .69. Data were extracted related to the instrument, study setting, and patient characteristics, including treated disease, type of rehabilitation (eg, occupational or physical therapy), methodology, sample size, and level of evidence. There were 25 discrete measurement instruments identified in the 33 articles evaluated. Seven of the instruments originated outside of the rehabilitative care sector, and only 1 measured service experience across the care continuum. As providers move to integrate rehabilitative care across the continuum from hospital to home, patients experience a system of care. Research is required to develop psychometrically tested instruments that measure patients' experience across a rehabilitative system. Copyright © 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Moving from reclusion to partial freedom: the experience of family caregivers for disabled elderly persons assisted in a day care center.

PubMed

Bocchi, Silvia Cristina Mangini; Cano, Karen Cristina Urtado; Baltieri, Lilian; Godoy, Daniele Cristina; Spiri, Wilza Carla; Juliani, Carmen Maria Casquel Monti

2010-09-01

This study aimed at understanding the interactional experience between family caregivers and disabled elderly persons supported in a Day Care Center according to the caregiver's perspective. It also aimed at developing a representative theoretical model for the events experienced by such caregiver. The Grounded Theory was used as methodological framework whereas Interactional Symbolism served as the theoretical framework. Observation and interviews were used for data collection. The following phenomenon arose from the results: feeling of support by the Day Care Center, by the strength of the bond with the elderly and by spirituality in order to continue playing the challenging role of a family caregiver for a disabled elderly person. The study made possible to understand that, among these three supporting cornerstones for coping with the burden generated by the family caregiver role, the care model promoted by the Day Care Center was the intervenient variable in the process of improving the quality of life of the family caregiver-disabled elderly person binomial. This allowed the identification of the main category--moving from reclusion to partial freedom: the experience of family caregivers for disabled elderly persons assisted in a Day Care Center.

The Family Context of Care in HIV/AIDS: A Study of Mumbai, India

ERIC Educational Resources Information Center

D'Cruz, Premilla

2004-01-01

Though the continuum of care model has been adopted in HIV/AIDS intervention, there is little empirical work documenting the experiences of caregiving families. Addressing this gap, a study on family caregiving and care receiving was undertaken in Mumbai, India. In-depth interviews were conducted with seven seropositive caregivers, seven…

Learning Opportunities for Nurses Working within Home Care

ERIC Educational Resources Information Center

Lundgren, Solveig

2011-01-01

Purpose: The purpose of this study is to explore home care nurses' experience of learning in a multicultural environment. Design/methodology/approach: The study was based on qualitative research design. Data were collected through repeated interviews with registered home care nurses working in a multicultural area. The data were analyzed through a…

Mental health consumers' with medical co‐morbidity experience of the transition through tertiary medical services to primary care

PubMed Central

Cranwell, Kate; Polacsek, Meg

2016-01-01

Abstract Medical comorbidity in people with long‐term mental illness is common and often undetected; however, these consumers frequently experience problems accessing and receiving appropriate treatment in public health‐care services. The aim of the present study was to understand the lived experience of mental health consumers with medical comorbidity and their carers transitioning through tertiary medical to primary care services. An interpretative, phenomenological analysis approach was used, and semistructured, video‐recorded, qualitative interviews were used with 12 consumers and four primary caregivers. Four main themes and related subthemes were abstracted from the data, highlighting consumer's and carers’ experience of transition through tertiary medical to primary care services: (i) accessing tertiary services is difficult and time consuming; (ii) contrasting experiences of clinician engagement and support; (iii) lack of continuity between tertiary medical and primary care services; and (iv) Mental Health Hospital Admission Reduction Programme (MH HARP) clinicians facilitating transition. Our findings have implications for organisational change, expanding the role of MH HARP clinicians (whose primary role is to provide consumers with intensive support and care coordination to prevent avoidable tertiary medical hospital use), and the employment of consumer and carer consultants in tertiary medical settings, especially emergency departments. PMID:26735771

Interprofessional teamwork in stroke care: Is it visible or important to patients and carers?

PubMed

Hewitt, Gillian; Sims, Sarah; Greenwood, Nan; Jones, Fiona; Ross, Fiona; Harris, Ruth

2015-01-01

Interprofessional teamwork is seen in healthcare policy and practice as a key strategy for providing safe, efficient and holistic healthcare and is an accepted part of evidence-based stroke care. The impact of interprofessional teamwork on patient and carer experience(s) of care is unknown, although some research suggests a relationship might exist. This study aimed to explore patient and carer perceptions of good and poor teamwork and its impact on experiences of care. Critical incident interviews were conducted with 50 patients and 33 carers in acute, inpatient rehabilitation and community phases of care within two UK stroke care pathways. An analytical framework, derived from a realist synthesis of 13 'mechanisms' (processes) of interprofessional teamwork, was used to identify positive and negative 'indicators' of teamwork. Participants identified several mechanisms of teamwork, but it was not a subject most talked about readily. This suggests that interprofessional teamwork is not a concept that is particularly important to stroke patients and carers; they do not readily perceive any impacts of teamwork on their experiences. These findings are a salient reminder that what might be expected by healthcare professionals to be important influences on experience may not be perceived to be so by patients and carers.

Qualitative focus group study investigating experiences of accessing and engaging with social care services: perspectives of carers from diverse ethnic groups caring for stroke survivors

PubMed Central

Greenwood, Nan; Holley, Jess; Ellmers, Theresa; Mein, Gill; Cloud, Geoffrey

2016-01-01

Objectives Informal carers, often family members, play a vital role in supporting stroke survivors with post-stroke disability. As populations age, numbers of carers overall and those from minority ethnic groups in particular, are rising. Carers from all ethnic groups, but especially those from black and minority ethnic groups frequently fail to access support services, making understanding their experiences important. The study therefore explored the experiences of carers of stroke survivors aged 45+ years from 5 ethnic groups in accessing and receiving social care services after hospital discharge. Design This qualitative study used 7 recorded focus groups with informal carers of stroke survivors. Data were analysed thematically focusing on similarities and differences between ethnic groups. Setting Carers were recruited from voluntary sector organisations supporting carers, stroke survivors and black and minority ethnic groups in the UK. Participants 41 carers from 5 ethnic groups (Asian Indian, Asian Pakistani, black African, black Caribbean, white British) participated in the focus groups. Results Several interconnected themes were identified including: the service gap between hospital discharge and home; carers as the best person to care and cultural aspects of caring and using services. Many themes were common to all the included ethnic groups but some related to specific groups. Conclusions Across ethnic groups there were many similarities in the experiences of people caring for stroke survivors with complex, long-term care needs. Accessing services demands effort and persistence on carers’ part. If carers believe services are unsatisfactory or that they, rather than formal services, should be providing support for stroke survivors, they are unlikely to persist in their efforts. Cultural and language differences add to the challenges black and minority ethnic group carers face. PMID:26826148

Chronic care model strategies in the United States and Germany deliver patient-centered, high-quality diabetes care.

PubMed

Stock, Stephanie; Pitcavage, James M; Simic, Dusan; Altin, Sibel; Graf, Christian; Feng, Wen; Graf, Thomas R

2014-09-01

Improving the quality of care for chronic diseases is an important issue for most health care systems in industrialized nations. One widely adopted approach is the Chronic Care Model (CCM), which was first developed in the late 1990s. In this article we present the results from two large surveys in the United States and Germany that report patients' experiences in different models of patient-centered diabetes care, compared to the experiences of patients who received routine diabetes care in the same systems. The study populations were enrolled in either Geisinger Health System in Pennsylvania or Barmer, a German sickness fund that provides medical insurance nationwide. Our findings suggest that patients with type 2 diabetes who were enrolled in the care models that exhibited key features of the CCM were more likely to receive care that was patient-centered, high quality, and collaborative, compared to patients who received routine care. This study demonstrates that quality improvement can be realized through the application of the Chronic Care Model, regardless of the setting or distinct characteristics of the program. Project HOPE—The People-to-People Health Foundation, Inc.