The Salience of Family Worldview in Mourning an Elderly Husband and Father

PubMed Central

Black, Helen K.; Santanello, Holly R.

2012-01-01

Objective: The purpose of this study was to qualitatively explore family reaction to the death of the elderly husband and father in the family. Methods: We qualitatively interviewed 34 families (a family included a widow and 2 adult biological children) approximately 6–15 months after the death. In private, one-on-one in-depth interviews, we discussed how the death affected each family member as an individual and how each member perceived that the death altered the family as a unit. Results: An individual's worldview, embedded in the smaller culture of the family and the larger culture of society, offers a template for appropriate grief reactions. Discussion: Our article builds on the constructs of worldview, grief for the husband and father, and narrative at the juncture of self-evaluation, as family members reflected on where they stood in their own journey through life. PMID:22241808

Quality insights of university teachers on dying, death, and death education.

PubMed

Mak, Mui-Hing June

One of the main responsibilities of teachers is to help individual students cope with life difficulties such as grief following a death. However, very little research explores teachers' views on death, dying, and how they handle grief and loss in schools. This study aims to explore university teachers' knowledge and attitudes on dying, death, and death education. Fifteen university teachers were recruited using a qualitative method. This study reveals that most teachers' views on death and related issues are largely affected by their death experiences, religious beliefs, professional background, and the mass media. Although they have a general negative response toward death and dying, some teachers begin to affirm their meanings of life and death. Most teachers agree that they do not feel adequate about managing and teaching on life and death issues, so they strongly support including death education in the formal programs in Hong Kong.

Publication Trends in Thanatology: An Analysis of Leading Journals.

PubMed

Wittkowski, Joachim; Doka, Kenneth J; Neimeyer, Robert A; Vallerga, Michael

2015-01-01

To identify important trends in thanatology as a discipline, the authors analyzed over 1,500 articles that appeared in Death Studies and Omega over a 20-year period, coding the category of articles (e.g., theory, application, empirical research), their content focus (e.g., bereavement, death attitudes, end-of-life), and for empirical studies, their methodology (e.g., quantitative, qualitative). In general, empirical research predominates in both journals, with quantitative methods outnumbering qualitative procedures 2 to 1 across the period studied, despite an uptick in the latter methods in recent years. Purely theoretical articles, in contrast, decline in frequency. Research on grief and bereavement is the most commonly occurring (and increasing) content focus of this work, with a declining but still substantial body of basic research addressing death attitudes. Suicidology is also well represented in the corpus of articles analyzed. In contrast, publications on topics such as death education, medical ethics, and end-of-life issues occur with lower frequency, in the latter instances likely due to the submission of such work to more specialized medical journals. Differences in emphasis of Death Studies and Omega are noted, and the analysis of publication patterns is interpreted with respect to overall trends in the discipline and the culture, yielding a broad depiction of the field and some predictions regarding its possible future.

Athletic Training Educators' Pedagogical Strategies for Preparing Students to Address Sudden Death in Sport

ERIC Educational Resources Information Center

Mazerolle, Stephanie M.; Pagnotta, Kelly D.; Salvatore, Anthony C.; Casa, Douglas J.

2013-01-01

Context: Educational training programs both impart knowledge and allow students to practice skills to gain clinical competence. Objective: Understand the educational training provided to athletic training students regarding sudden death in sport beyond exertional heat stroke. Design: An exploratory, qualitative study using telephone interviews and…

Facilitating Attachment between School-Aged Children and a Dying Parent

ERIC Educational Resources Information Center

Saldinger, Amy; Cain, Albert C.; Porterfield, Katherine; Lohnes, Kelly

2004-01-01

A qualitative, community study of 58 parentally bereaved children and their 35 surviving parents illustrates how families take advantage of forewarning of death to foster connections between children and dying parents and prepare for youngsters' continued attachment to dying parents after the death. Children and parents displayed strong yearnings…

The Factors Affecting End-of-Life Decision-Making by Physicians of Patients with Intellectual Disabilities in the Netherlands: A Qualitative Study

ERIC Educational Resources Information Center

Wagemans, A.; van Schrojenstein Lantman-de Valk, H.; Proot, I.; Metsemakers, J.; Tuffrey-Wijne, I.; Curfs, L.

2013-01-01

Background: The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians. Methods: This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with…

Accommodating Grief on Twitter: An Analysis of Expressions of Grief Among Gang Involved Youth on Twitter Using Qualitative Analysis and Natural Language Processing.

PubMed

Patton, Desmond Upton; MacBeth, Jamie; Schoenebeck, Sarita; Shear, Katherine; McKeown, Kathleen

2018-01-01

There is a dearth of research investigating youths' experience of grief and mourning after the death of close friends or family. Even less research has explored the question of how youth use social media sites to engage in the grieving process. This study employs qualitative analysis and natural language processing to examine tweets that follow 2 deaths. First, we conducted a close textual read on a sample of tweets by Gakirah Barnes, a gang-involved teenaged girl in Chicago, and members of her Twitter network, over a 19-day period in 2014 during which 2 significant deaths occurred: that of Raason "Lil B" Shaw and Gakirah's own death. We leverage the grief literature to understand the way Gakirah and her peers express thoughts, feelings, and behaviors at the time of these deaths. We also present and explain the rich and complex style of online communication among gang-involved youth, one that has been overlooked in prior research. Next, we overview the natural language processing output for expressions of loss and grief in our data set based on qualitative findings and present an error analysis on its output for grief. We conclude with a call for interdisciplinary research that analyzes online and offline behaviors to help understand physical and emotional violence and other problematic behaviors prevalent among marginalized communities.

Accommodating Grief on Twitter: An Analysis of Expressions of Grief Among Gang Involved Youth on Twitter Using Qualitative Analysis and Natural Language Processing

PubMed Central

Patton, Desmond Upton; MacBeth, Jamie; Schoenebeck, Sarita; Shear, Katherine; McKeown, Kathleen

2018-01-01

There is a dearth of research investigating youths’ experience of grief and mourning after the death of close friends or family. Even less research has explored the question of how youth use social media sites to engage in the grieving process. This study employs qualitative analysis and natural language processing to examine tweets that follow 2 deaths. First, we conducted a close textual read on a sample of tweets by Gakirah Barnes, a gang-involved teenaged girl in Chicago, and members of her Twitter network, over a 19-day period in 2014 during which 2 significant deaths occurred: that of Raason “Lil B” Shaw and Gakirah’s own death. We leverage the grief literature to understand the way Gakirah and her peers express thoughts, feelings, and behaviors at the time of these deaths. We also present and explain the rich and complex style of online communication among gang-involved youth, one that has been overlooked in prior research. Next, we overview the natural language processing output for expressions of loss and grief in our data set based on qualitative findings and present an error analysis on its output for grief. We conclude with a call for interdisciplinary research that analyzes online and offline behaviors to help understand physical and emotional violence and other problematic behaviors prevalent among marginalized communities. PMID:29636619

Determinants of hospital death in haematological cancers: findings from a qualitative study.

PubMed

McCaughan, Dorothy; Roman, Eve; Smith, Alexandra G; Garry, Anne; Johnson, Miriam; Patmore, Russell; Howard, Martin; Howell, Debra A

2018-03-01

Current UK health policy promotes enabling people to die in a place they choose, which for most is home. Despite this, patients with haematological malignancies (leukaemias, lymphomas and myeloma) are more likely to die in hospital than those with other cancers, and this is often considered a reflection of poor quality end-of-life care. This study aimed to explore the experiences of clinicians and relatives to determine why hospital deaths predominate in these diseases. The study was set within the Haematological Malignancy Research Network (HMRN-www.hmrn.org), an ongoing population-based cohort that provides infrastructure for evidence-based research. Qualitative interviews were conducted with clinical staff in haematology, palliative care and general practice (n=45) and relatives of deceased HMRN patients (n=10). Data were analysed for thematic content and coding and classification was inductive. Interpretation involved seeking meaning, salience and connections within the data. Five themes were identified relating to: the characteristics and trajectory of haematological cancers, a mismatch between the expectations and reality of home death, preference for hospital death, barriers to home/hospice death and suggested changes to practice to support non-hospital death, when preferred. Hospital deaths were largely determined by the characteristics of haematological malignancies, which included uncertain trajectories, indistinct transitions and difficulties predicting prognosis and identifying if or when to withdraw treatment. Advance planning (where possible) and better communication between primary and secondary care may facilitate non-hospital death. © 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.

Good death in Japanese cancer care: a qualitative study.

PubMed

Hirai, Kei; Miyashita, Mitsunori; Morita, Tatsuya; Sanjo, Makiko; Uchitomi, Yosuke

2006-02-01

One of the most important goals of palliative care is achieving a "good death" or a "good dying process." The primary aim of this study was to identify the components of a Japanese "good death" through qualitative interviews with cancer patients, their families, physicians, and nurses. Semistructured interviews were conducted. Thirteen advanced cancer patients, 10 family members of such patients, 20 physicians, and 20 nurses were recruited from five regional cancer institutions in Japan. Content analysis was applied to answers, and 58 attributes were extracted and classified into 17 categories as follows: Freedom from pain or physical/psychological symptoms, Having a good family relationship, Dying in one's favorite place/environment, Having a good relationship with medical staff, Not being a burden to others, Maintaining dignity, Completion of life, Maintaining a sense of control, Fighting against cancer, Maintaining hope, Not prolonging life, Contributing to others, Control of future, Not being aware of death, Appreciating others, Maintaining pride, and Having faith. The most frequently cited category was "Freedom from pain or physical/psychological symptoms" and the least common was "Having faith." This study identified important components of a good death in Japan. A future quantitative survey is planned to clarify the generalizability of these findings as the primary endpoint of palliative care in Japan.

Learning about Grief from Normal Families: SIDS, Stillbirth, and Miscarriage.

ERIC Educational Resources Information Center

DeFrain, John

1991-01-01

Discusses 10 common questions, gleaned from qualitative analysis of data from nearly 850 bereaved family members who participated in 9 distinct studies, asked by people whose lives are directly affected by the death of a baby. Offers guidelines for family therapists serving families bereaved by an infant death. (Author/NB)

Retrospective reports of the lived school experience of adolescents after the death of a parent.

PubMed

Masterson, Ann

2013-10-01

This qualitative phenomenological study was done to better understand the school experience of adolescents after the death of a parent. The participants were adults over the age of 19 and between 3 and 43 years past the death of a parent during adolescence. The study involved personal, reflective interviews with each of the participants. The interviews were analyzed and compared to identify five recurring themes. Three essences were identified which evolved into one essential essence. Issues affecting participants' reactions to parental death were identified. The limitations of the study were summarized. The implications for school nurses were discussed, and recommendations for future research were suggested.

Standardisation a Considerable Force behind Language Death: A Case of Shona

ERIC Educational Resources Information Center

Mhute, Isaac

2016-01-01

The paper assesses the contribution of standardisation towards language death taking Clement Doke's resolutions on the various Shona dialects as a case study. It is a qualitative analysis of views gathered from speakers of the language situated in various provinces of Zimbabwe, the country in which the language is spoken by around 75% of the…

Pediatric Donation After Circulatory Determination of Death: A Scoping Review.

PubMed

Weiss, Matthew J; Hornby, Laura; Witteman, William; Shemie, Sam D

2016-03-01

Although pediatric donation after circulatory determination of death is increasing in frequency, there are no national or international donation after circulatory determination of death guidelines specific to pediatrics. This scoping review was performed to map the pediatric donation after circulatory determination of death literature, identify pediatric donation after circulatory determination of death knowledge gaps, and inform the development of national or regional pediatric donation after circulatory determination of death guidelines. Terms related to pediatric donation after circulatory determination of death were searched in Embase and MEDLINE, as well as the non-MEDLINE sources in PubMed from 1980 to May 2014. Seven thousand five hundred ninety-seven references were discovered and 85 retained for analysis. All references addressing pediatric donation after circulatory determination of death were considered. Exclusion criteria were articles that did not address pediatric patients, animal or laboratory studies, surgical techniques, and local pediatric donation after circulatory determination of death protocols. Narrative reviews and opinion articles were the most frequently discovered reference (25/85) and the few discovered studies were observational or qualitative and almost exclusively retrospective. Retained references were divided into themes and analyzed using qualitative methodology. The main discovered themes were 1) studies estimating the number of potential pediatric donation after circulatory determination of death donors and their impact on donation; 2) ethical issues in pediatric donation after circulatory determination of death; 3) physiology of the dying process after withdrawal of life-sustaining therapy; 4) cardiac pediatric donation after circulatory determination of death; and 5) neonatal pediatric donation after circulatory determination of death. Donor estimates suggest that pediatric donation after circulatory determination of death will remain an event less common than brain death, albeit with the potential to substantially expand the existing organ donation pool. Limited data suggest outcomes comparable with organs donated after neurologic determination of death. Although there is continued debate around ethical aspects of pediatric donation after circulatory determination of death, all pediatric donation after circulatory determination of death publications from professional societies contend that pediatric donation after circulatory determination of death can be practiced ethically. This review provides a comprehensive overview of the published literature related to pediatric donation after circulatory determination of death. In addition to informing the development of pediatric-specific guidelines, this review serves to highlight several important knowledge gaps in this topic.

Good and bad death: exploring the perspectives of older Mexican Americans.

PubMed

Ko, Eunjeong; Cho, Sunhee; Perez, Ramona L; Yeo, Younsook; Palomino, Helen

2013-01-01

The purpose of this study was to identify and describe the domains that define a good death from the perspectives of healthy Mexican American older adults. Qualitative data from face-to-face interviews with 18 participants residing in Southern California were analyzed. Five categories regarding the concepts of good and bad death include no suffering, living life with faith, having time for closure with family, dying at home, and a natural death. Understanding the meaning of good and bad death within specific cultural contexts is integral to promoting cultural sensitivity when working with older adults, especially in end-of-life care.

A qualitative study of attitudes and values surrounding stillbirth and neonatal mortality among grandmothers, mothers, and unmarried girls in rural Amhara and Oromiya regions, Ethiopia: unheard souls in the backyard.

PubMed

Sisay, Mitike Molla; Yirgu, Robel; Gobezayehu, Abebe Gebremariam; Sibley, Lynn M

2014-01-01

In Ethiopia, neonatal mortality and stillbirth are high and underreported. This study explored values related to neonatal mortality and stillbirth and the visibility of these deaths in rural Ethiopia among 3 generations of women. We conducted a qualitative study in 6 rural districts of the Oromiya and Amhara regional states during May 2012. We included 30 focus groups representing grandmothers, married women (mothers), and unmarried girls in randomly selected kebeles (villages). Until the 40th day of life, neonates are considered to be strangers to the community (not human). Their deaths are not talked about; they are buried in the house or in the backyard. Mothers are forbidden to mourn their loss lest they offend God and bring on future neonatal losses. Women who repeatedly lose their neonates may be blamed, mistreated, and dishonored through divorce. Neonatal death and stillbirth are attributed to supernatural powers, although some women and girls associate these deaths with poverty and lack of education. The desire for increased visibility of neonatal death is mixed. Unlike the grandmothers and unmarried girls, most of the married women want death to be visible to draw the attention of policy makers. Women prefer home birth and consider themselves lucky to be able to give birth at home. At present, there is no national vital registration system. Neonatal death and stillbirth are hidden and the magnitude is likely underrepresented. The delayed recognition of personhood, attribution of death to supernatural causes, social repercussions for women who experience a pregnancy loss, preference for home birth, and lack of a vital registration system all contribute to the invisibility of perinatal deaths. Increasing the visibility of (and counting) these deaths may require multifaceted behavior-change interventions. © 2014 by the American College of Nurse-Midwives.

End-of-Life in Disney and Pixar Films: An opportunity for Engaging in Difficult Conversation.

PubMed

Tenzek, Kelly E; Nickels, Bonnie M

2017-01-01

This study expanded upon previous scholarship by examining end-of-life (EOL) depictions and messages of death within Disney and Pixar animated films. We argue Disney and Pixar depictions of EOL and death can provide critical opportunities for discussing death and dying processes with children and adults alike. A content analysis of 57 movies resulted in a total of 71 character deaths. These instances of death became the discourse used for analysis. The EOL discourse was coded based on five categories (character status, depiction of death, death status, emotional reaction, and causality). After quantitative analysis, the films were qualitatively analyzed. Four themes emerged from analysis, unrealistic moments, managing EOL, intentions to kill, and transformation and spiritual connection. Discussion of results, limitations, and directions for future research are included.

How nurses cope with patient death: A systematic review and qualitative meta-synthesis.

PubMed

Zheng, Ruishuang; Lee, Susan Fiona; Bloomer, Melissa Jane

2018-01-01

To review literature on nurses' coping strategies with patient death. Dealing with the loss of a patient was viewed as one of the most demanding and challenging encounters in clinical practice. Those nurses who are not competent in coping with patient death may be inadequate in supporting dying patients and their family members, and minimise the quality of end-of-life care. To get a broader understanding of how nurses cope with patient death and to develop meaningful and effective interventions, a systematic review which would help underpin the multidimensional approaches is needed. A systematic review. Exhaustive searching in ten databases: CINAHL Plus, EMBASE, MEDLINE, AMED, PsycINFO, ProQuest Health & Medical Complete, ProQuest Dissertations & Theses Global, Google Scholar, EThOS and CareSearch. Meta-aggregation was used to synthesise the findings of the included studies. This systematic review aggregated ten categories from the sixteen qualitative studies included, and then two synthesised findings were derived: intrinsic resources and extrinsic resources. The intrinsic resources consisted of setting boundaries, reflection, crying, death beliefs, life and work experience, and daily routines and activity. The extrinsic resources were comprised of talking and being heard, spiritual practices, education and programmes, and debriefing. This systematic review synthesised the findings about what resources nurses use when coping with patient death and made recommendations on future directions. Areas which could be developed to improve deficiencies that nurses had when faced with the losses of their patients were identified. Nurses need more support resources, which better assist them in coping with patient death. The results of this systematic review could provide evidence for nurses' coping strategies when dealing with patient death, and the recommendations could be employed by nurses to cope with the losses of patients. © 2017 John Wiley & Sons Ltd.

Representations of Death Among Italian Vegetarians: An Ethnographic Research on Environment, Disgust and Transcendence.

PubMed

Testoni, Ines; Ghellar, Tommaso; Rodelli, Maddalena; De Cataldo, Loriana; Zamperini, Adriano

2017-08-01

This paper focuses on the motives for vegetarian choices in contemporary Italian food culture, with specific reference to the role of the representations of death. The study adopts a qualitative research design aimed at an in-depth exploration of the reasons for avoiding meat, following an ethnographic method. Twenty-two participants (55% women, 45% men) aged 19-74, all vegetarians or vegans, mainly from Northern and Central Italy, were involved. Data from the Interpretative Phenomenological Analysis were examined according to the qualitative thematic analysis: the results show the role of death in the construction of disgust towards meat, running parallel with an emphasis on spirituality, ethical treatment of animals and the environment as reasons for avoiding meat, in particular, the concern-generating disgust and its relationship with the representation of death as a contaminating essence. The basis of disgust lies in this connection, from which the idea that oral consumption of contaminants characterized by corruptive properties, passing through the flesh of dead animals to humans, derives. The role of anti-speciesism is considered as a latent perspective, which may influence the vegetarian and vegan choices.

Hope, Life, and Death: A Qualitative Analysis of Dying Cancer Patients' Talk about Hope

ERIC Educational Resources Information Center

Eliott, Jaklin A.; Olver, Ian N.

2009-01-01

Although deemed vital to patient well-being, hope in persons who are terminally ill is often thought to be problematic, particularly when centered on cure. As part of a study on end-of-life decision-making, we asked 28 patients with cancer, believed to be within weeks of their death, to talk about hope. Responses were transcribed and discursively…

Elements of healthy death: a thematic analysis.

PubMed

Estebsari, Fatemeh; Taghdisi, Mohammad Hossein; Mostafaei, Davood; Rahimi, Zahra

2017-01-01

Background: Death is a natural and frightening phenomenon, which is inevitable. Previous studies on death, which presented a negative and tedious image of this process, are now being revised and directed towards acceptable death and good death. One of the proposed terms about death and dying is "healthy death", which encourages dealing with death positively and leading a lively and happy life until the last moment. This study aimed to explain the views of Iranians about the elements of healthy death. Methods: This qualitative study was conducted for 12 months in two general hospitals in Tehran (capital of Iran), using the thematic analysis method. After conducting 23 in-depth interviews with 21 participants, transcription of content, and data immersion and analysis, themes, as the smallest meaningful units were extracted, encoded and classified. Results: One main category of healthy death with 10 subthemes, including dying at the right time, dying without hassle, dying without cost, dying without dependency and control, peaceful death, not having difficulty at dying, not dying alone and dying at home, inspired death, preplanned death, and presence of a clergyman or a priest, were extracted as the elements of healthy death from the perspective of the participants in this study. Conclusion: The study findings well explained the elements of healthy death. Paying attention to the conditions and factors causing healthy death by professionals and providing and facilitating quality services for patients in the end stage of life make it possible for patients to experience a healthy death.

A Focused Review of Language Use Preceding Death by Execution

PubMed Central

Hirschmüller, Sarah; Egloff, Boris

2018-01-01

Executions are one form of death that can be assumed to be maximally anxiety provoking. Words spoken by death row inmates moments before their execution can provide valuable insights into people's end-of-life communication needs and themes, conveying what individuals choose to express to others in the face of imminent death. In this focused review, we describe findings from quantitative and qualitative text analysis studies that have analyzed affective experiences and meaning-making attempts in transcriptions of actual statements made by Texas death row inmates. Overall, the most prevalent content themes identified in these final acts of verbal communication in the reviewed studies consisted of a strong predominance of emotional positivity, messages to relevant social others, and spiritual references. We subsequently view the reviewed findings in the light of additional research in which people's conceptions of death and dying were explored and language studies in which people's communication before other forms of death was analyzed. Finally, we describe open questions and directions for future analyses of death row inmates' final statements, and we outline practical implications. PMID:29867657

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.

Existential concerns about death: a qualitative study of dying patients in a Danish hospice.

PubMed

Moestrup, Lene; Hansen, Helle Ploug

2015-06-01

Research suggests that addressing dying patients' existential concerns can improve their quality of life. We aimed to illuminate dying patients' existential concerns about the impending death through a descriptive analysis of semistructured interviews with 17 patients in Danish hospices. The main findings demonstrated how the patients faced the imminent death without being anxious of death but sorrowful about leaving life. Some patients expressed that they avoided thinking about death. They wished to focus on positive aspects in their daily life. We argue that the patients' existential concerns could not be fully captured by Yalom's existential psychology or by Kübler-Ross's theory about death stages. Patients' complex concerns could be more fully explained taking an outset in Heidegger's phenomenological thinking. © The Author(s) 2014.

Life in Limbo: Experiences of Iranian Hematopoietic Stem Cell Transplantation Recipient Patients and Nurses in a Qualitative Study

PubMed Central

Zamanzadeh, Vahid; Valizadeh, Leila; Sayadi, Leila; Taleghani, Fariba; Jeddian, Alireza

2013-01-01

Background This study explored the state of hematopoietic stem cell transplantation (HSCT) recipient patients and problems experienced by them and nurse about these state and problems, in Iran. Methods Qualitative content analysis was used for analyzing semi-structured interviews with 12 HSCT recipient patients and 18 nurses. Results Three main categories described the HSCT state and problems: shadow of death, living with uncertainty, and immersion in problems. Patients treated with risk variety in continuity with probability of death. The patients lived with uncertainty. Consequently these resulted immersion in problems with four sub-categories including: (a) Physical problems, (b) money worries, (c) life disturbances, and (d) emotional strain. Conclusion HSCT patients live in a state of limbo between life and death with multidimensional problems. Establish centers for supporting and educating of patients and their families, education of health care providers, enhancement of public knowledge about HSCT along with allocating more budgets to take care of these patients can help patients for passing from this limbo. PMID:24505532

"Dulling the Edges": Young Men's Use of Alcohol to Deal With Grief Following the Death of a Male Friend

ERIC Educational Resources Information Center

Creighton, Genevieve; Oliffe, John; Matthews, Jennifer; Saewyc, Elizabeth

2016-01-01

Background: The death of a male friend can be challenging for men because expressions of grief can be governed and restrained by dominant ideals of masculinity. It is common for young men to engage in health risk practices, such as alcohol overuse, to deal with feelings of sadness. Objective: This qualitative study investigated the ways that young…

Rigour and Rapport: a qualitative study of parents' and professionals' experiences of joint agency infant death investigation.

PubMed

Garstang, Joanna; Griffiths, Frances; Sidebotham, Peter

2017-02-07

In many countries there are now detailed Child Death Review (CDR) processes following unexpected child deaths. CDR can lead to a fuller understanding of the causes for each child's death but this potentially intrusive process may increase the distress of bereaved families. In England, a joint agency approach (JAA) is used where police, healthcare and social services investigate sudden child deaths together and a key part of this is the joint home visit (JHV) where specialist police and paediatricians visit the home with the parents to view the scene of death. This study aimed to learn of bereaved parents' experiences of JAA investigation following Sudden Unexpected Death in Infancy (SUDI). This was a qualitative study of joint agency investigation of SUDI by specialist police, healthcare and social services including case note analysis, parental questionnaires, and in-depth interviews with parents and professionals. Families were recruited at the conclusion of the JAA. Data were analysed using a Framework Approach. 21/113 eligible families and 26 professionals participated giving theoretical saturation of data. There was an inherent conflict for professionals trying to both investigate deaths thoroughly as well as support families. Bereaved parents appreciated the JAA especially for the information it provided about the cause of death but were frustrated with long delays waiting to obtain this. Many parents wanted more emotional support to be routinely provided. Most parents found the JHV helpful but a small minority of mothers found this intensely distressing. In comparison to JHVs, when police visited death scenes without paediatricians, information was missed and parents found these visits more upsetting. There were issues with uniformed non-specialist police traumatising parents by starting criminal investigations and preventing parents from accessing their home or collecting vital possessions. Overall most parents feel supported by professionals during the JAA; however there is scope for improvement. Paediatricians should ensure that parents are kept updated with the progress of the investigations. Some parents require more emotional support and professionals should assist them in accessing this.

What their terms of living and dying might be: hospice social workers discuss Oregon's Death with Dignity Act.

PubMed

Norton, Elizabeth M; Miller, Pamela J

2012-01-01

This article presents data from a qualitative study of nine social work hospice practitioners and experts as they discuss Oregon's Death with Dignity Act. Three themes emerged from the analysis: (a) values regarding physician-assisted death; (b) agency policies about the option; and (c) the role of hospice social workers with physician-assisted death. Three states now allow terminally ill persons to obtain a lethal prescription if criteria are met. Two other states are actively considering and may pass similar legislation over time. Hospice social work practitioners work with patients and families as they consider this option and their voices reflect the complexities and nuances of these interactions.

Representations of Death Among Italian Vegetarians: An Ethnographic Research on Environment, Disgust and Transcendence

PubMed Central

Testoni, Ines; Ghellar, Tommaso; Rodelli, Maddalena; De Cataldo, Loriana; Zamperini, Adriano

2017-01-01

This paper focuses on the motives for vegetarian choices in contemporary Italian food culture, with specific reference to the role of the representations of death. The study adopts a qualitative research design aimed at an in-depth exploration of the reasons for avoiding meat, following an ethnographic method. Twenty-two participants (55% women, 45% men) aged 19-74, all vegetarians or vegans, mainly from Northern and Central Italy, were involved. Data from the Interpretative Phenomenological Analysis were examined according to the qualitative thematic analysis: the results show the role of death in the construction of disgust towards meat, running parallel with an emphasis on spirituality, ethical treatment of animals and the environment as reasons for avoiding meat, in particular, the concern-generating disgust and its relationship with the representation of death as a contaminating essence. The basis of disgust lies in this connection, from which the idea that oral consumption of contaminants characterized by corruptive properties, passing through the flesh of dead animals to humans, derives. The role of anti-speciesism is considered as a latent perspective, which may influence the vegetarian and vegan choices. PMID:28904591

From frustration to coping with caring for death by nurse technicians.

PubMed

Beraldo, Lívia Maria; de Almeida, Débora Vieira; Bocchi, Silvia Cristina Mangini

2015-01-01

to understand nurse technicians' experience with caring for the death of terminal patients in ICUs and to configure a theoretical model. qualitative study with theoretical saturation when analyzing the 10th non-directive interview, having as reference Grounded Theory, Symbolic Interactionism and Bioethics. the core category - from frustration to coping with dignified nursing care for finitude: the acceptance of death as a therapeutic and intervenient component - emerged from the comparison of the sub-processes: when the nurse does not feel prepared for caring for death, accepting death as a therapeutic phenomenon and developing coping strategies. according to Symbolic Interactionism, a novice professional's frustration in caring for an individual for death is related to his/her interaction and interpretation of the situation as he/she feels prepared only to care for individuals for life.

Reconstructing meaning through occupation after the death of a family member: accommodation, assimilation, and continuing bonds.

PubMed

Hoppes, Steve; Segal, Ruth

2010-01-01

Reactions to death have been studied extensively from psychological, behavioral, and physiological perspectives. Occupational adaptation to loss has received scant attention. Qualitative research was undertaken to identify and describe occupational responses in bereavement. The constant comparative approach was used to analyze and interpret the occupational responses. Adaptive strategies of occupational accommodation and assimilation were used after the death of a family member. Desire to sustain bonds with the deceased motivated specific occupational engagements. These occupational responses served to reconstruct meaning after the death of a family member. These findings contribute to understanding adaptation after death by adding an occupational perspective to previous theories. Occupational therapists' abilities to support clients after loss can be enhanced through appreciation of occupational accommodation and assimilation and the role of continuing occupational bonds after the death of a loved one.

The interaction of socioeconomic status with place of death: a qualitative analysis of physician experiences.

PubMed

Wales, Joshua; Kurahashi, Allison M; Husain, Amna

2018-06-20

Home is a preferred place of death for many people; however, access to a home death may not be equitable. The impact of socioeconomic status on one's ability to die at home has been documented, yet there remains little literature exploring mechanisms that contribute to this disparity. By exploring the experiences and insights of physicians who provide end-of-life care in the home, this study aims to identify the factors perceived to influence patients' likelihood of home death and describe the mechanisms by which they interact with socioeconomic status. In this exploratory qualitative study, we conducted interviews with 9 physicians who provide home-based care at a specialized palliative care centre. Participants were asked about their experiences caring for patients at the end of life, focusing on factors believed to impact likelihood of home death with an emphasis on socioeconomic status, and opportunities for intervention. We relied on participants' perceptions of SES, rather than objective measures. We used an inductive content analysis to identify and describe factors that physicians perceive to influence a patient's likelihood of dying at home. Factors identified by physicians were organized into three categories: patient characteristics, physical environment and support network. Patient preference for home death was seen as a necessary factor. If this was established, participants suggested that having a strong support network to supplement professional care was critical to achieving home death. Finally, safe and sustainable housing were also felt to improve likelihood of home death. Higher SES was perceived to increase the likelihood of a desired home death by affording access to more resources within each of the categories. This included better health and health care understanding, a higher capacity for advocacy, a more stable home environment, and more caregiver support. SES was not perceived to be an isolated factor impacting likelihood of home death, but rather a means to address shortfalls in the three identified categories. Identifying the factors that influence ability is the first step in ensuring home death is accessible to all patients who desire it, regardless of socioeconomic status.

What people close to death say about euthanasia and assisted suicide: a qualitative study

PubMed Central

Chapple, A; Ziebland, S; McPherson, A; Herxheimer, A

2006-01-01

Objective To explore the experiences of people with a “terminal illness”, focusing on the patients' perspective of euthanasia and assisted suicide. Method A qualitative study using narrative interviews was conducted throughout the UK. The views of the 18 people who discussed euthanasia and assisted suicide were explored. These were drawn from a maximum variation sample, who said that they had a “terminal” illness, malignant or non‐malignant. Results That UK law should be changed to allow assisted suicide or voluntary euthanasia was felt strongly by most people. Those who had seen others die were particularly convinced that this should be a right. Some had multiple reasons, including pain and anticipated pain, fear of indignity, loss of control and cognitive impairment. Those who did not want to be a burden also had other reasons for wanting euthanasia. Suicide was contemplated by a few, who would have preferred a change in the law to allow them to end their lives with medical help and in the company of family or friends. The few who opposed a change in UK law, or who felt ambivalent, focused on involuntary euthanasia, cited religious reasons or worried that new legislation might be open to abuse. Conclusion Qualitative research conducted on people who know they are nearing death is an important addition to the international debate on euthanasia and assisted suicide. Those who had seen others die were particularly convinced that the law should be changed to allow assisted death. PMID:17145910

What people close to death say about euthanasia and assisted suicide: a qualitative study.

PubMed

Chapple, A; Ziebland, S; McPherson, A; Herxheimer, A

2006-12-01

To explore the experiences of people with a "terminal illness", focusing on the patients' perspective of euthanasia and assisted suicide. A qualitative study using narrative interviews was conducted throughout the UK. The views of the 18 people who discussed euthanasia and assisted suicide were explored. These were drawn from a maximum variation sample, who said that they had a "terminal" illness, malignant or non-malignant. That UK law should be changed to allow assisted suicide or voluntary euthanasia was felt strongly by most people. Those who had seen others die were particularly convinced that this should be a right. Some had multiple reasons, including pain and anticipated pain, fear of indignity, loss of control and cognitive impairment. Those who did not want to be a burden also had other reasons for wanting euthanasia. Suicide was contemplated by a few, who would have preferred a change in the law to allow them to end their lives with medical help and in the company of family or friends. The few who opposed a change in UK law, or who felt ambivalent, focused on involuntary euthanasia, cited religious reasons or worried that new legislation might be open to abuse. Qualitative research conducted on people who know they are nearing death is an important addition to the international debate on euthanasia and assisted suicide. Those who had seen others die were particularly convinced that the law should be changed to allow assisted death.

National evaluation of healthcare provider attitudes toward organ donation after cardiac death.

PubMed

Mandell, M Susan; Zamudio, Stacy; Seem, Debbie; McGaw, Lin J; Wood, Geri; Liehr, Patricia; Ethier, Angela; D'Alessandro, Anthony M

2006-12-01

Organ donation after cardiac death will save lives by increasing the number of transplantable organs. But many healthcare providers are reluctant to participate when the withdrawal of intensive care leads to organ donation. Prior surveys indicate ethical concerns as a barrier to the practice of organ donation after cardiac death, but the specific issues that characterize these concerns are unknown. We thus aimed to identify what barriers healthcare providers perceive. We conducted a qualitative analysis of focus group transcripts to identify issues of broad importance. Healthcare setting. Participants included 141 healthcare providers representing critical care and perioperative nurses, transplant surgeons, medical examiners, organ procurement personnel, neurosurgeons, and neurologists. Collection and analysis of information regarding healthcare providers' attitudes and beliefs. All focus groups agreed that increased organ availability is a benefit but questioned the quality of organs recovered. Study participants identified a lack of standards for patient prognostication and cardiopulmonary death and a failure to prevent a conflict between patient and donor interests as obstacles to acceptance of organ donation after cardiac death. They questioned the practices and motives of colleagues who participate in organ donation after cardiac death, apprehensive that real or perceived impropriety would affect public perception. Healthcare providers are uncomfortable at the clinical juncture where end-of-life care and organ donation interface. Our findings are consistent with theories that care providers are hesitant to perform medical tasks that they consider to be outside the focus of their practice, especially when there is potential conflict of interest. This conflict appears to impose moral distress on healthcare providers and limits acceptance of organ donation after cardiac death. Future research is warranted to examine the effect of standardized procedures on reducing moral distress. The hypothesis generated by this qualitative study is that use of neutral third parties to broach the subject of organ donation may improve acceptance of organ donation after cardiac death.

The Effect of Co-Administration of Death Camas (Zigadenus spp.) and Low Larkspur (Delphinium spp.) in Cattle.

PubMed

Welch, Kevin D; Green, Benedict T; Gardner, Dale R; Stonecipher, Clinton A; Pfister, James A; Cook, Daniel

2016-01-12

In many rangeland settings, there is more than one potential poisonous plant. Two poisonous plants that are often found growing simultaneously in the same location in North American rangelands are death camas (Zigadenus spp.) and low larkspur (Delphinium spp.). The objective of this study was to determine if co-administration of death camas would exacerbate the toxicity of low larkspur in cattle. Cattle dosed with 2.0 g of death camas/kg BW showed slight frothing and lethargy, whereas cattle dosed with both death camas and low larkspur showed increased clinical signs of poisoning. Although qualitative differences in clinical signs of intoxication in cattle co-treated with death camas and low larkspur were observed, there were not any significant quantitative differences in heart rate or exercise-induced muscle fatigue. Co-treatment with death camas and low larkspur did not affect the serum zygacine kinetics, however, there was a difference in the larkspur alkaloid kinetics in the co-exposure group. Overall, the results from this study suggest that co-exposure to death camas and low larkspur is not significantly more toxic to cattle than exposure to the plants individually. The results from this study increase our knowledge and understanding regarding the acute toxicity of death camas and low larkspur in cattle.

How does cot death prevention advice influence parents' behaviour?

PubMed

Miller, L H; Fraser, A; Moy, R

2008-09-01

To explore parents' understanding of the recommended cot death prevention strategies, and to discuss what they are doing in practice. If there is a difference between knowledge and implementation measures, possible reasons for this will be considered. A qualitative study using thematic analysis, aimed at finding out attitudes and opinions of parents about cot death prevention measures. Twelve participants were interviewed from two disadvantaged communities in south Birmingham. Parents found that much of the cot death prevention advice they were provided with was conflicting and caused confusion. As such, many parents chose to follow advice from non-healthcare sources. Some parents were carrying out preventative measures but were not aware of the reason for doing it. Many felt they did not receive enough advice relating to cot death prevention. Cot death health promotion advice appears to be inadequate among patients from a deprived socioeconomic background. Some of these issues could be resolved with increased training addressing these matters.

Euthanasia and physician-assisted suicide in dementia: A qualitative study of the views of former dementia carers.

PubMed

Tomlinson, Emily; Spector, Aimee; Nurock, Shirley; Stott, Joshua

2015-09-01

Despite media and academic interest on assisted dying in dementia, little is known of the views of those directly affected. This study explored the views of former carers on assisted dying in dementia. This was a qualitative study using thematic analysis. A total of 16 former carers of people with dementia were recruited through national dementia charities and participated in semi-structured interviews. While many supported the individual's right to die, the complexity of assisted dying in dementia was emphasized. Existential, physical, psychological and psychosocial aspects of suffering were identified as potential reasons to desire an assisted death. Most believed it would help to talk with a trained health professional if contemplating an assisted death. Health workers should be mindful of the holistic experience of dementia at the end of life. The psychological and existential aspects of suffering should be addressed, as well as relief of physical pain. Further research is required. © The Author(s) 2015.

Meaning of death: an exploration of perception of elderly in a Bangladeshi village.

PubMed

Joarder, Taufique; Cooper, Alicia; Zaman, Shahaduz

2014-09-01

The aim of this qualitative study was to explore the perceptions of meaning of death among the elderly in a Bangladeshi community, and to understand how the meaning of death affects one's overall well-being. Understandings of death were explored through the explanations respondents provided on the journey of the soul during lifetime and the afterlife, concepts of body-soul duality, and perceived "good" and "bad" deaths. The relationship to well-being was expressed in terms of longevity, anxiety/acceptance of death, and preferred circumstances for death. Seven in-depth interviews and one informal discussion session provided the bulk of the data, while Participatory Rapid Appraisal (PRA) tools, including daily routines and body mapping, supplemented our findings. Elderly members of the community had very specific ideas about the meaning of death, and provided clear explanations regarding the journey of the soul, drawing on ideas of body-soul duality to substantiate claims. Due to long coexistence fusion of Hindu and Muslim ideas around death was found. Anxiety/fear of death was associated with some secular issues, on the contrary the perception of longevity was found linked with spirituality. Insights revealed from this study of subtle differences in the perceptions regarding issues around death may aid the policy makers develop effective end-of-life interventions.

[Learning about death from the undergraduate: Evaluation of an educational intervention].

PubMed

Álvarez-del Río, Asunción; Torruco-García, Uri; Morales-Castillo, José Daniel; Varela-Ruiz, Margarita

2015-01-01

From June to November 2013 an elective subject "The doctor before death" was held in a public medical school. The aim of this report is to assess the achievement of the objectives of this course. The main objectives of the course were to develop competences, aptitude for reflection before death and encourage changes in attitude towards it. Each session was preceded by an article on the content; during sessions the interaction with physicians and patients facing the approach of death was favored; audiovisual, computer resources were used and conducted discussions. The evaluation of the course was a retrospective questionnaire as a quantitative source, and semi structured interviews and essays as qualitative sources. The development of competences, aptitude for reflection about death and attitude changes showed an increase after the intervention (p < 0.01); competence development had the smallest increase. With qualitative information 11 categories were integrated; all showed positive changes in attitude towards death, aptitude for reflection and developed competences (although in this respect the impact was minor). The educational intervention evaluated met the objectives, however, for a future intervention is necessary to reinforce competence development.

Terminally ill cancer patients' wish to hasten death.

PubMed

Kelly, B; Burnett, P; Pelusi, D; Badger, S; Varghese, F; Robertson, M

2002-07-01

This exploratory study investigated factors associated with the wish to hasten death among a sample of terminally ill cancer patients. Semi-structured interviews conducted on a total of 72 hospice and home palliative care patients were subjected to qualitative analysis using QSR-NUDIST. The main themes to emerge suggested that patients with a high wish to hasten death had greater concerns with physical symptoms and psychological suffering, perceived themselves to be more of a burden to others, and experienced higher levels of demoralization, while also reporting less confidence in symptom control, fewer social supports, less satisfaction with life experiences and fewer religious beliefs when compared with patients who had a moderate or no wish to hasten death. The implications of these findings will be discussed.

Social Autopsy of maternal, neonatal deaths and stillbirths in rural Bangladesh: qualitative exploration of its effect and community acceptance.

PubMed

Biswas, Animesh; Rahman, Fazlur; Eriksson, Charli; Halim, Abdul; Dalal, Koustuv

2016-08-23

Social Autopsy (SA) is an innovative strategy where a trained facilitator leads community groups through a structured, standardised analysis of the physical, environmental, cultural and social factors contributing to a serious, non-fatal health event or death. The discussion stimulated by the formal process of SA determines the causes and suggests preventative measures that are appropriate and achievable in the community. Here we explored individual experiences of SA, including acceptance and participant learning, and its effect on rural communities in Bangladesh. The present study had explored the experiences gained while undertaking SA of maternal and neonatal deaths and stillbirths in rural Bangladesh. Qualitative assessment of documents, observations, focus group discussions, group discussions and in-depth interviews by content and thematic analyses. Each community's maternal and neonatal death was a unique, sad story. SA undertaken by government field-level health workers were well accepted by rural communities. SA had the capability to explore the social reasons behind the medical cause of the death without apportioning blame to any individual or group. SA was a useful instrument to raise awareness and encourage community responses to errors within the society that contributed to the death. People participating in SA showed commitment to future preventative measures and devised their own solutions for the future prevention of maternal and neonatal deaths. SA highlights societal errors and promotes discussion around maternal or newborn death. SA is an effective means to deliver important preventative messages and to sensitise the community to death issues. Importantly, the community itself is enabled to devise future strategies to avert future maternal and neonatal deaths in Bangladesh. 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/

Outcomes of Orphanhood in Ethiopia: A Mixed Methods Study

ERIC Educational Resources Information Center

Camfield, Laura

2011-01-01

The paper addresses the question of whether parental death always has a strongly negative effect on children's outcomes using quantitative and qualitative data from Young Lives, a longitudinal study of childhood poverty in Ethiopia. It investigates the validity of potential mediating factors identified by other studies in Sub-Saharan Africa using…

The involvement of cancer patients in the four stages of decision-making preceding continuous sedation until death: A qualitative study.

PubMed

Robijn, Lenzo; Seymour, Jane; Deliens, Luc; Korfage, Ida; Brown, Jayne; Pype, Peter; Van Der Heide, Agnes; Chambaere, Kenneth; Rietjens, Judith

2018-04-01

Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. Qualitative case studies using interviews. Interviews with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the United Kingdom and the Netherlands. We distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the United Kingdom), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and the Netherlands), the patient initiated the conversation and the physician's role was largely limited to evaluating if and when the medical criteria were met. Decision-making about continuous sedation until death goes through four stages and the involvement of the patient in the decision-making varies. Acknowledging the potential sensitivity of raising the issue of end-of-life sedation, we recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care.

Death certification and doctors' dilemmas: a qualitative study of GPs' perspectives

PubMed Central

McAllum, Carol; St George, Ian; White, Gillian

2005-01-01

Background Death certificate inaccuracies have implications for funding and planning public health services, health research and family settlements. Improved training has been identified as a way of reducing inaccuracies. Understanding the influences on certifying doctors should inform that training. Aim To explore what factors influence GPs as they complete death certificates. Design Focus groups held by teleconference with 16 GPs. Setting New Zealand general practice. Method Four teleconferenced focus groups were taped and transcribed. Transcripts were examined for emerging themes. Credibility, transferability and confirmability were underwritten by a clear audit trail. Results Participants identified two factors that influenced death certification: clinical uncertainty and the family. Other themes provided an understanding of the personal and professional concerns for GPs. Conclusion Improving death certification accuracy is a complex issue and needs to take into consideration factors that influence certifiers. PMID:16176734

Continuing with “…a heavy heart” - consequences of maternal death in rural Kenya

PubMed Central

2015-01-01

Background This study analyzes the consequences of maternal death to households in Western Kenya, specifically, neonatal and infant survival, childcare and schooling, disruption of daily household activities, the emotional burden on household members, and coping mechanisms. Methods The study is a combination of qualitative analysis with matched and unmatched quantitative analysis using surveillance and survey data. Between September 2011 and March 2013 all households in the study area with a maternal death were surveyed. Data were collected on the demographic characteristics of the deceased woman; household socio-economic status; a history of the pregnancy that led to the death; schooling experiences of surviving school-age children; and disruption to household functioning due to the maternal death. These data were supplemented by in-depth and focus group discussions. Quantitative data on neonatal and infant survival from a demographic surveillance system in the study area were also used. Descriptive and bivariate analyses were conducted with the quantitative data, and qualitative data were analyzed through text analysis using NVivo. Results More than three-quarters of deceased women performed most household tasks when healthy. After the maternal death, the responsibility for these tasks fell primarily on the deceased’s husbands, mothers, and mothers-in-law. Two-thirds of the individuals from households that suffered a maternal death had to shift into another household. Most children had to move away, mostly to their grandmother’s home. About 37% of live births to women who died of maternal causes survived till age 1 year, compared to 65% of live births to a matched sample of women who died of non-maternal causes and 93% of live births to surviving women. Older, surviving children missed school or did not have enough time for schoolwork, because of increased housework or because the loss of household income due to the maternal death meant school fees could not be paid. Respondents expressed grief, frustration, anger and a sense of loss. Generous family and community support during the funeral and mourning periods was followed by little support thereafter. Conclusion The detrimental consequences of a maternal death ripple out from the woman’s spouse and children to the entire household, and across generations. PMID:26000827

Elders' experiences of the death of an adult child.

PubMed

Smith, Marilyn E; Nunley, Barbara L; Kerr, Patrick L; Galligan, Hunter

2011-01-01

The death of a child can result in complicated grief. Thirty-one adults, 60 years of age or older, who lost an adult child, participated in a qualitative study using a focus group format that allowed them to discuss their experience. A hermeneutical approach was used to develop an overall thematic description of what it meant to an older person to lose an adult child. Four major themes emerged: losses, limited influence/decision making power, regrets, and decreased quality of life. Suggested interventions to prevent complicated grief in elders who experienced the death of an adult child include attentive listening, storytelling, and the use of metaphors.

Changes in parental self-identity following the death of a child to cancer.

PubMed

O'Connor, Kathleen; Barrera, Maru

2014-01-01

This study explored parental self-identity at 6, 12, and 18 months following the death of a child to cancer. Semi-structured interviews were analyzed using qualitative methodology. Two patterns of parental self-identity emerged: identity reintegration, characterized by 6 associated themes (e.g., positive reframing, focusing on surviving children); and identity disintegration, characterized by 7 associated themes (e.g., negative perceptions of social support, self-destructive thoughts and behaviors). Patterns were stable from 6 to 12 months, but a shift towards identity disintegration was observed at 18 months. These findings suggest a need to support bereaved parents' well-being beyond the first year post-death.

Motivation to Pursue Genetic Testing in Individuals with a Personal or Family History of Cardiac Events or Sudden Cardiac Death

PubMed Central

Erskine, Kathleen E.; Hidayatallah, Nadia Z.; Walsh, Christine A.; McDonald, Thomas V.; Cohen, Lilian; Marion, Robert W.; Dolan, Siobhan M.

2014-01-01

Genetic testing is becoming increasingly available for cardiac channelopathies, such as long QT syndrome and Brugada syndrome, which can lead to sudden cardiac death. Test results can be used to shape an individual’s medical management and to identify at-risk family members. In our qualitative study, all participants had a personal or family history of a diagnosed cardiac arrhythmia syndrome or sudden cardiac death. Open-ended interviews were conducted individually and in focus groups. Interviews were audio recorded, transcribed verbatim, and analyzed using a qualitative grounded-theory approach. Of 50 participants, 37 described their motivations for pursuing genetic testing for long QT syndrome or another cardiac channelopathy. Participants’ motivations included: to find an explanation for a family member’s sudden death, to relieve uncertainty regarding a diagnosis, to guide future medical management, to allay concern about children or other family members, and to comply with recommendations of physicians or family members. Perceived reasons not to pursue genetic testing included denial, fear, and lack of information. The genetic counseling and informed consent process can be enhanced by understanding and addressing an individual’s internal and external motivations either for or against pursuing genetic testing. PMID:24664857

Public Opinion and the Death Penalty: A Qualitative Approach

ERIC Educational Resources Information Center

Falco, Diana L.; Freiburger, Tina L.

2011-01-01

Strong public support for capital punishment is arguably the number one reason why the death penalty continues to be used as a form of correctional policy in the U.S. criminal justice system. Therefore, it is fundamental that the measure of death penalty opinion be heavily scrutinized. Utilizing a methodological approach not typically employed in…

Perceptions of an implantable cardioverter-defibrillator: A qualitative study of families with a history of sudden life-threatening cardiac events and recommendations to improve care

PubMed Central

Linder, Jarrett; Hidayatallah, Nadia; Stolerman, Marina; McDonald, Thomas V.; Marion, Robert; Walsh, Christine; Dolan, Siobhan

2014-01-01

Objective To identify major concerns associated with implantable cardioverter-defibrillators (ICDs) and to provide recommendations to adult and pediatric physicians involved in the care of patients with ICDs. Background Cardiac ion channelopathies are a well-recognized cause of sudden cardiac death in infants, children, adolescents, and young adults. ICDs are effective in preventing sudden death from fatal arrhythmias in patients with known cardiac channelopathies. There is a paucity of research on the effect of ICDs on quality of life in patients with cardiac channelopathy diagnoses, especially young patients. Methods A qualitative study interviewing patients and families affected by inherited arrhythmias was conducted. Fifty participants with personal or family histories of cardiac events or sudden death were interviewed individually or in focus groups by clinical psychologists. All interviews were transcribed verbatim and then analyzed and coded based on current qualitative research theory to identify themes related to the research question. Twenty-four participants discussed ICDs in their interviews. Results Participants reported concerns about ICDs, and these concerns were categorized into six themes: (1) comprehension and physician-patient communication; (2) anxiety; (3) restrictions and fallacies; (4) complications; (5) utility; and (6) alternative therapy. Participants noted communication breakdowns between providers and their colleagues, and between providers and their patients. Participants and their families experienced many different forms of anxiety, including worry about the aesthetics of the ICDs and fears of being shocked. Multiple restrictions, fallacies, and complications were also cited. Conclusion Interview themes were used to formulate recommendations for counseling and educating patients with ICDs. PMID:25383067

Infrequent near death experiences in severe brain injury survivors - A quantitative and qualitative study.

PubMed

Hou, Yongmei; Huang, Qin; Prakash, Ravi; Chaudhury, Suprakash

2013-01-01

Near death experiences (NDE) are receiving increasing attention by the scientific community because not only do they provide a glimpse of the complexity of the mind-brain interactions in 'near-death' circumstances but also because they have significant and long lasting effects on various psychological aspects of the survivors. The over-all incidence-reports of NDEs in literature have varied widely from a modest Figure of 10% to around 35%, even up to an incredible Figure of 72% in persons who have faced close brush with death. Somewhat similar to this range of difference in incidences are the differences prevalent in the opinions that theorists and researchers harbor around the world for explaining this phenomena. None the less, objective evidences have supported physiological theories the most. A wide range of physiological processes have been targeted for explaining NDEs. These include cerebral anoxia, chemical alterations like hypercapnia, presence of endorphins, ketamine, and serotonin, or abnormal activity of the temporal lobe or the limbic system. In spite of the fact that the physiological theories of NDEs have revolved around the derangements in brain, no study till date has taken up the task of evaluating the experiences of near-death in patients where specific injury has been to brain. Most of them have evaluated NDEs in cardiac-arrest patients. Post-traumatic coma is one such state regarding which the literature seriously lacks any information related to NDEs. Patients recollecting any memory of their post-traumatic coma are valuable assets for NDE researchers and needs special attention. Our present study was aimed at collecting this valuable information from survivors of severe head injury after a prolonged coma. The study was conducted in the head injury department of Guangdong 999 Brain hospital, Guangzhou, China. Patients included in the study were the ones Recovered from the posttraumatic coma following a severe head injury. A total of 86 patients were chosen. Near death experience scale (NDES) score of 7 or more was used as the criteria of screening NDE experiences. After identifying such individuals, the Prakash-modification of the Interpretative Phenomenological Analysis (IPA) was used to interview and record the data for qualitative analysis. We found that contrary to earlier incidence reports, NDEs in post head injury patients were markedly low. Only 3 out of 86 of the patients recruited had a clear and confident experience of NDE. We conducted a qualitative study to explore further into these experiences. IPA of these 3 patients revealed four master themes: 1. Unique light visions 2. Intense feelings of astonishment, pleasure, and fear 3. The sense of helplessness 4. Supernatural but rationality of experience. NDE is uncommon in head-injury cases as compared to other near-death conditions. But the persons experiencing it have immense impacts on their belief systems and emotions. This experience should be further explored by studies of larger samples.

Public perceptions of cancer: a qualitative study of the balance of positive and negative beliefs.

PubMed

Robb, Kathryn A; Simon, Alice E; Miles, Anne; Wardle, Jane

2014-07-10

Cancer's insidious onset and potentially devastating outcomes have made it one of the most feared diseases of the 20th century. However, advances in early diagnosis and treatment mean that death rates are declining, and there are more than 30 million cancer survivors worldwide. This might be expected to result in more sanguine attitudes to the disease. The present study used a qualitative methodology to provide an in-depth exploration of attitudes to cancer and describes the balance of negative and positive perspectives. A qualitative study using semistructured interviews with thematic analysis. A university in London, UK. 30 participants (23-73 years), never themselves diagnosed with cancer. Accounts of cancer consistently incorporated negative and positive views. In almost all respondents, the first response identified fear, trauma or death. However, this was followed-sometimes within the same sentence-by acknowledgement that improvements in treatment mean that many patients can survive cancer and may even resume a normal life. Some respondents spontaneously reflected on the contradictions, describing their first response as a 'gut feeling' and the second as a more rational appraisal-albeit one they struggled to believe. Others switched perspective without apparent awareness. People appear to be 'in two minds' about cancer. A rapid, intuitive sense of dread and imminent death coexists with a deliberative, rational recognition that cancer can be a manageable, or even curable, disease. Recognising cancer's public image could help in the design of effective cancer control messages. 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.

The effect of patient death on medical students in the emergency department.

PubMed

Batley, Nicholas J; Bakhti, Rinad; Chami, Ali; Jabbour, Elsy; Bachir, Rana; El Khuri, Christopher; Mufarrij, Afif J

2017-07-10

The emotional consequences of patient deaths on physicians have been studied in a variety of medical settings. Reactions to patient death include distress, guilt, and grief. Comparatively, there are few studies on the effects of patient death on physicians and residents in the Emergency Department (ED). The ED setting is considered unique for having more sudden deaths that likely include the young and previously healthy and expectations for the clinician to return to a dynamic work environment. To date, no studies have looked at the effects of patient deaths on the more vulnerable population of medical students in the ED. This study examined aspects of patient deaths in the ED that most strongly influence students' reactions while comparing it to those of an inpatient setting. Semi-structured qualitative interviews were carried out with a total of 16 medical students from the American University of Beirut, Medical Center in Lebanon who had recently encountered a patient death in the ED. Questions included their reaction to the death, interaction with patients and their family members, the response of the medical team, and coping mechanisms adopted. The analysis revealed the following as determinant factors of student reaction to patient death: context of death; including age of patient, expectation of death, first death experience, relating patient death to personal deaths, and extent of interaction with patient and family members. Importantly, deaths in an inpatient setting were judged as more impactful than ED deaths. ED deaths, however, were especially powerful when a trauma case was deemed physically disturbing and cases in which family reactions were emotionally moving. The study demonstrates that students' emotional reactions differ as a function of the setting (surprise and shock in the ED versus sadness and grief in an inpatient setting). Debriefing and counseling sessions on ED deaths may benefit from this distinction.

"Fret no more my child ... for I'm all over heaven all day": religious beliefs in the bereavement of African American, middle-aged daughters coping with the death of an elderly mother.

PubMed

Smith, Sharon Hines

2002-05-01

This article examines the ways in which religious beliefs of 30 African American, middle-aged daughters help them cope with the death of their elderly mothers. This qualitative, exploratory study found that daughters use their beliefs to move through states of grief that allow them to prepare, relinquish control, accept death, and maintain a connection to their mothers beyond death. Important themes identified in this study include the belief in an after life and the reunification of family members there. Findings suggest that religious beliefs provide a means for adult daughters to cope with the tasks of living in the present yet maintain a tie with their deceased mothers that serves to enhance their religious beliefs and fortitude in daily living.

Chinese cultural dimensions of death, dying, and bereavement: focus group findings.

PubMed

Yick, Alice G; Gupta, Rashmi

2002-01-01

The purpose of this qualitative study is to describe Chinese immigrants and Chinese Americans' attitudes and practices about death, dying, and bereavement. To this end, three focus groups were conducted with social work graduate students, pastors and religious leaders, and service providers working in the Chinese American community in New York City. The United States is becoming increasingly multicultural, and Chinese Americans are the most rapidly growing Asian American group. Findings from this study revealed that many Chinese attitudes and practices about death and dying are rooted in Asian cultural values such as filial piety, centrality of the family, and emphasis of hierarchy. In addition, strains of Confucianism, Buddhism, Taoism, and local folklore are embedded in these death attitudes and practices. Based on themes extrapolated from the focus groups, recommendations are delineated for service providers in order to implement culturally-sensitive bereavement practices.

The Difficulty of Selecting the NANDA-I Nursing Diagnosis (2015-2017) of "Death Anxiety" in Japan.

PubMed

Shimomai, Kimiyo; Furukawa, Hidetoshi; Kuroda, Yuko; Fukuda, Kazuaki; Masuda, Mitsumi; Koizumi, Junko

2018-01-01

The purpose of our study was to clarify any difficulties or problems that exist in Japanese healthcare sites regarding the selection of death anxiety as a nursing diagnosis. This study was a qualitative, inductive research design. The semistructured interviews were conducted on the participants who were nurses and had 3 or more years of clinical experience in Japan. Results showed four categories: "The Japanese have a culture of avoiding death," "It is extremely difficult to match diagnostic indicators and related factors with specific patient cases," "Other diagnoses exist that are effective and enable proactive intervention," and "The definition of death anxiety and the meaning of its diagnostic indicators are unintelligible." It is thought that nursing diagnoses that reflect specific cultural backgrounds require definitions appropriate to each country and appropriate revisions to diagnostic indicators. © 2016 NANDA International, Inc.

Purification of Body and Soul for the Next Journey. Practices Surrounding Death and Dying Among Muslim Women.

PubMed

Ahaddour, Chaïma; Van den Branden, Stef; Broeckaert, Bert

2017-12-01

This study aims, first, to compare normative Islamic practices toward death and dying and actual practices of Moroccan Muslim women. Second, it seeks to compare the views and practices of middle-aged and elderly women. Qualitative empirical research was conducted with 30 middle-aged and elderly Moroccan Muslim women living in Antwerp (Belgium) and with 15 experts in the field. Our study shows that religious beliefs and worldview have a great impact on Muslims' practices surrounding death and dying. More specifically, practices are strongly shaped by their eschatological beliefs. The rituals are perceived as preparations for the hereafter, entailing purification of both soul and body, and demonstrate the belief in a continued existence of the soul. We found striking similarities between our participants' views and normative Islamic views. We did not find a more secular understanding of death and dying among the middle-aged women.

Statins and Voriconazole Induce Programmed Cell Death in Acanthamoeba castellanii

PubMed Central

López-Arencibia, Atteneri; Sifaoui, Ines; Reyes-Batlle, María; Valladares, Basilio; Martínez-Carretero, Enrique; Piñero, José E.; Maciver, Sutherland K.; Lorenzo-Morales, Jacob

2015-01-01

Members of the genus Acanthamoeba are facultative pathogens of humans, causing a sight-threatening keratitis and a life-threatening encephalitis. In order to treat those infections properly, it is necessary to target the treatment not only to the trophozoite but also to the cyst. Furthermore, it may be advantageous to avoid parasite killing by necrosis, which may induce local inflammation. We must also avoid toxicity of host tissue. Many drugs which target eukaryotes are known to induce programmed cell death (PCD), but this process is poorly characterized in Acanthamoeba. Here, we study the processes of programmed cell death in Acanthamoeba, induced by several drugs, such as statins and voriconazole. We tested atorvastatin, fluvastatin, simvastatin, and voriconazole at the 50% inhibitory concentrations (IC50s) and IC90s that we have previously established. In order to evaluate this phenomenon, we investigated the DNA fragmentation, one of the main characteristics of PCD, with quantitative and qualitative techniques. Also, the changes related to phosphatidylserine exposure on the external cell membrane and cell permeability were studied. Finally, because caspases are key to PCD pathways, caspase activity was evaluated in Acanthamoeba. All the drugs assayed in this study induced PCD in Acanthamoeba. To the best of our knowledge, this is the first study where PCD induced by drugs is described quantitatively and qualitatively in Acanthamoeba. PMID:25733513

Fourth year medical students’ reflective writing on “death of Ivan Ilych: a qualitative study

PubMed Central

ZOHOURI, MAHSHID; AMINI, MITRA; SAGHEB, MOHAMMAD MEHDI

2017-01-01

Introduction: Medical students should be familiar with the end of life ethical issues and its considerations. For teaching end of life care to medical students, literature is a source of excellent narratives of patients with experiences of terminally ill condition in their journey through suffering and one of the most favourite bioethics literature readings has been the death of Ivan Ilych by Tolstoy. We used this novel to show medical students end of life events and suffering and asked them to write a reflective essay on it. We aimed to find what students think about terminally ill patients and their journey to death. Methods: In an inductive qualitative content analysis model, 350 essays, collected by homogenous sampling, were analyzed. The fourth year medical students were provided with the Death of Ivan Ilych novel to read. They were asked to write a reflection essay based on the reflective stages defined by Sandars. These essays served as the unit of analysis, each being read several times and a coding model was formed according to main topics. The related concepts in each unit were named as themes and each theme was abstracted to a code and the related codes were compared and developed as categories. Results: Qualitative content analysis of 350 essays of fourth year medical students revealed three major categories in students’ reflection on reading Death of Ivan Ilych as an end of life human body. These included: 1) Emotional experience, 2) Empathy and effective communication, 3) Spirituality and dignity. Analysis of essays showed that this reflection activity may help medical students have a deeper idea of the end of life situation and feelings. Conclusion: This project suggests that literature can be used as an example to introduce new ethical concepts to less experienced medical trainees. The students acquired the concept of the story and reflected the major aspects of the suffering of a human being in their essays. Having used and evaluated the effect of literature on facilitating ethical insight in the teaching end of life care, we strongly recommend this method and specially the novella, Death of Ivan Ilych. PMID:28367463

Unexplained Absences and Risk of Death and Injury Among Nursing Home Residents: A Systematic Review.

PubMed

Woolford, Marta H; Weller, Carolina; Ibrahim, Joseph E

2017-04-01

Unexplained absence of nursing home (NH) residents is one of the most challenging issues related to the care of older people. The aim of this review was to examine the death and injury outcomes of unexplained absence of NH residents. We searched MEDLINE, CINAHL, EMBASE, PsycINFO, AgeLine, and Cochrane Library to identify qualitative and quantitative studies published in the English language. Data on death and injury were collated, and aggregate proportions were calculated where possible. Nine studies were identified; most (n = 6) were conducted in the United States. Persons with dementia formed the study population in all studies. There were 1440 individual unexplained absences reported across the 9 studies. We calculated a rate of 82 deaths and 61 injuries per 1000 incidents of unexplained absence. Extreme temperatures were the most common cause of death. Most individuals left by foot, and were found within a 1-mile radius of place last seen in green vegetation and waterways. This review provides valuable insight into death and injury outcomes. Further studies are recommended to improve understanding and prevent adverse outcomes. Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

Qualitative thematic analysis of the phenomenology of near-death experiences.

PubMed

Cassol, Helena; Pétré, Benoît; Degrange, Sophie; Martial, Charlotte; Charland-Verville, Vanessa; Lallier, François; Bragard, Isabelle; Guillaume, Michèle; Laureys, Steven

2018-01-01

Near-death experiences (NDEs) refer to profound psychological events that can have an important impact on the experiencers' (NDErs) lives. Previous studies have shown that NDEs memories are phenomenologically rich. In the present study, we therefore aimed to extract the common themes (referred to as "features" in the NDE literature) reported by NDErs by analyzing all the concepts stored in the narratives of their experiences. A qualitative thematic analysis has been carried out on 34 cardiac arrest survivors' NDE narratives. Our results shed the light on the structure of the narratives by identifying 10 "time-bounded" themes which refer to isolated events encountered during the NDE and 1 "transversal" theme which characterizes the whole narrative and generally appears as a retrospective comment of self-reflection on the experience. The division of narratives into themes provides us with detailed information about the vocabulary used by NDErs to describe their experience. This established thematic method enables a rigorous description of the phenomenon, ensuring the inclusion of all self-reported manifestations of themes in narratives.

Life and death of neurons in the aging brain

NASA Technical Reports Server (NTRS)

Morrison, J. H.; Hof, P. R.; Bloom, F. E. (Principal Investigator)

1997-01-01

Neurodegenerative disorders are characterized by extensive neuron death that leads to functional decline, but the neurobiological correlates of functional decline in normal aging are less well defined. For decades, it has been a commonly held notion that widespread neuron death in the neocortex and hippocampus is an inevitable concomitant of brain aging, but recent quantitative studies suggest that neuron death is restricted in normal aging and unlikely to account for age-related impairment of neocortical and hippocampal functions. In this article, the qualitative and quantitative differences between aging and Alzheimer's disease with respect to neuron loss are discussed, and age-related changes in functional and biochemical attributes of hippocampal circuits that might mediate functional decline in the absence of neuron death are explored. When these data are viewed comprehensively, it appears that the primary neurobiological substrates for functional impairment in aging differ in important ways from those in neurodegenerative disorders such as Alzheimer's disease.

Death beliefs and practices from an Asian Indian American Hindu perspective.

PubMed

Gupta, Rashmi

2011-03-01

The purpose of this article was to explore Asian Indian American Hindu (AIAH) cultural views related to death and dying. Three focus group interviews were conducted with AIAH persons living in the southern region of United States. The focus group consisted of senior citizens, middle-aged adults, and young adults. Both open-ended and semistructured questions were asked to elicit discussions that would uncover the meanings respondents attribute to death, as well as their pre- and post-death practices. All the sessions were tape recorded. Two independent researchers examined the transcripts of the 3 sessions and generated common themes. The results of this qualitative study indicate that all 3 generations were believers in the afterlife and the karmic philosophy. However, they exhibited differences in the degree to which Hindu traditions surrounding death and bereavement have been influenced by the fact that they live in the United States. Implications for service providers are included.

Dying in hospital: Qualitative study among caregivers of terminally ill patients who are transferred to the emergency department.

PubMed

Pillet, Martin; Chassagne, Aline; Aubry, Régis

2018-05-01

Most people in France die in the hospital, even though a majority would like to die at home. These end-of-life hospital admissions sometimes occur in the emergency setting, in the hours preceding death. To understand the motives that incite main natural caregivers to transfer terminally ill patients at the end of life to the emergency department. A qualitative study was performed among caregivers of terminally ill patients receiving palliative care and living at home, and who died within 72hours of being admitted to the emergency department of the University Hospital of Besançon, France. Eight interviews were performed; average duration 48minutes. The caregivers described the difficult conditions of daily life, characterised by marked anguish about what the future might hold. Although they were aware that the patient was approaching the end of life, the caregivers did not imagine the death at all. The transfer to the emergency department was considered as a logical event, occurring in the continuity of the home care, and was not in any way criticised, even long after death had occurred. Overall, the caregivers had a positive opinion of how the end-of-life accompaniment went. Difficulty in imagining death at home is underpinned by its unpredictable nature, and by the accumulation of suffering and anguish in the caregiver. Hospital admission and medicalisation of death help to channel the caregiver's anguish. In order to improve end-of-life accompaniment, it is mandatory to make home management more reassuring for the patient and their family. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: The study protocol of the UNBIASED study

PubMed Central

2011-01-01

Background A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: 'palliative sedation', 'terminal sedation', 'continuous deep sedation until death', 'proportionate sedation' or 'palliative sedation to unconsciousness'. Surveys show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice. This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study), which comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents' informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. The UNBIASED study is part of the European Association for Palliative Care Research Network. Methods/Design To realize the study aims, a two-phase study has been designed. The study settings include: the domestic home, hospital and expert palliative care sites. Phase 1 consists of: a) focus groups with health care staff and bereaved informal care-givers; and b) a preliminary case notes review to study the range of sedation therapy provided at the end of life to cancer patients who died within a 12 week period. Phase 2 employs qualitative methods to develop 30 patient-centred case studies in each country. These involve interviews with staff and informal care-givers closely involved in the care of cancer patients who received continuous sedation until death. Discussion To our knowledge, this is one of the few studies which seek to take a qualitative perspective on clinical decision making surrounding the use of continuous sedation until death and the only one which includes the perspectives of nurses, physicians, as well as bereaved informal care-givers. It has several potential strengths, weaknesses, opportunities and threats associated with the specific design of the study, as well as with the sensitive nature of the topic and the different frameworks for ethical review in the participating countries. PMID:21375747

Understanding Bereavement in a Christian University: A Qualitative Exploration

ERIC Educational Resources Information Center

Walker, Andrea C.; Gewecke, Rachelle; Cupit, Illene N.; Fox, Jeffrey T.

2014-01-01

This phenomenological study, based on ecological systems theory, examined the college student bereavement experience in a Christian university. Undergraduate students (N = 127) from a small Christian university provided answers to open-ended questions about their experiences regarding college following a death loss. Results indicate that students…

Adolescents' Experiences 7 and 13 Months Following the Death of a Brother or Sister.

PubMed

Brooten, Dorothy; Youngblut, JoAnne M; Roche, Rosa M

2017-06-01

This qualitative study used semi-structured interviews to describe adolescents' responses at 7 and 13 months to siblings' NICU/PICU/ED death. At 7 months, adolescents were asked about events around the sibling's death; at 7 and 13 months, about concerns/fears, feelings, and life changes. Seventeen adolescents participated (13-18 years; M=15); 65% Black, 24% Hispanic, 11% White. Themes included death circumstances, burial events, thinking about the deceased sibling, fears, and life changes. Adolescents reported shock and disbelief that the sibling died; 80% knew the reason for the death; many had difficulty getting through burials; all thought about the sibling. From 7 - 13 months fears increased including losing someone and thoughts of dying. Adolescents reported more changes in family life and greater life changes in them (more considerate, mature) by 13 months; some felt friends abandoned them after the sibling's death. Girls had more fears and changes in family life and themselves. Adolescent's responses to sibling death may not be visually apparent. One recommendation from this study is to ask adolescents how they are doing separately from parents since adolescents may hide feelings to protect their parents, especially their mothers. Older adolescents (14-18 years) and girls may have more difficulty after sibling death.

Making the Transition to Hospice: Exploring Hospice Professionals' Perspectives

ERIC Educational Resources Information Center

Waldrop, Deborah P.; Rinfrette, Elaine S.

2009-01-01

Hospice care is available for 6 months before death but the length of use varies widely, suggesting that there are different perspectives on the appropriate timing for this transition. This qualitative study explored hospice professionals' views on the appropriate timing for and communication about hospice. Ethnography of team meetings informed…

Early Parental Adjustment and Bereavement after Childhood Cancer Death

ERIC Educational Resources Information Center

Barrera, Maru; O'connor, Kathleen; D'Agostino, Norma Mammone; Spencer, Lynlee; Nicholas, David; Jovcevska, Vesna; Tallet, Susan; Schneiderman, Gerald

2009-01-01

This study comprehensively explored parental bereavement and adjustment at 6 months post-loss due to childhood cancer. Interviews were conducted with 18 mothers and 13 fathers. Interviews were transcribed verbatim and analyzed based on qualitative methodology. A model describing early parental bereavement and adaptation emerged with 3 domains:…

Introduction of a qualitative perinatal audit at Muhimbili National Hospital, Dar es Salaam, Tanzania

PubMed Central

Kidanto, Hussein L; Mogren, Ingrid; van Roosmalen, Jos; Thomas, Angela N; Massawe, Siriel N; Nystrom, Lennarth; Lindmark, Gunilla

2009-01-01

Background Perinatal death is a devastating experience for the mother and of concern in clinical practice. Regular perinatal audit may identify suboptimal care related to perinatal deaths and thus appropriate measures for its reduction. The aim of this study was to perform a qualitative perinatal audit of intrapartum and early neonatal deaths and propose means of reducing the perinatal mortality rate (PMR). Methods From 1st August, 2007 to 31st December, 2007 we conducted an audit of perinatal deaths (n = 133) with birth weight 1500 g or more at Muhimbili National Hospital (MNH). The audit was done by three obstetricians, two external and one internal auditors. Each auditor independently evaluated the cases narratives. Suboptimal factors were identified in the antepartum, intrapartum and early neonatal period and classified into three levels of delay (community, infrastructure and health care). The contribution of each suboptimal factor to adverse perinatal outcome was identified and the case graded according to possible avoidability. Degree of agreement between auditors was assessed by the kappa coefficient. Results The PMR was 92 per 1000 total births. Suboptimal factors were identified in 80% of audited cases and half of suboptimal factors were found to be the likely cause of adverse perinatal outcome and were preventable. Poor foetal heart monitoring during labour was indirectly associated with over 40% of perinatal death. There was a poor to fair agreement between external and internal auditors. Conclusion There are significant areas of care that need improvement. Poor monitoring during labour was a major cause of avoidable perinatal mortality. This type of audit was a good starting point for quality assurance at MNH. Regular perinatal audits to identify avoidable causes of perinatal deaths with feed back to the staff may be a useful strategy to reduce perinatal mortality. PMID:19765312

Images of heaven and the spiritual afterlife: Qualitative analysis of children's storybooks about death, dying, grief, and bereavement.

PubMed

Malcom, Nancy L

Many parents turn to picture books and storybooks to help explain issues surrounding death and dying to their young children. In addition to dealing with topics such as death, funerals, memories, and grief, a number of the books also mention the concept of heaven and what our loved ones might experience after they die. This article uses qualitative research methods to analyze 49 children's storybooks that touch on the existence of heaven or a spiritual afterlife. Results show that heaven is portrayed in a simplistic fashion, as a place high in the sky with bright lights, angels, and clouds. Even as heaven is presented in a relatively simple way, there are also patterned differences in depictions of the spiritual afterlife depending upon whether the decedent in the book was a family pet, a child, a parent, or a grandparent. The article concludes with a discussion of how these depictions of heaven and the afterlife might help young children cope with death-related grief.

Impacts of maternal mortality on living children and families: A qualitative study from Butajira, Ethiopia.

PubMed

Molla, Mitike; Mitiku, Israel; Worku, Alemayehu; Yamin, Alicia

2015-05-06

The consequences of maternal mortality on orphaned children and the family members who support them are dramatic, especially in countries that have high maternal mortality like Ethiopia. As part of a four country, mixed-methods study (Ethiopia, Malawi, South Africa, and Tanzania) qualitative data were collected in Butajira, Ethiopia with the aim of exploring the far reaching consequences of maternal deaths on families and children. We conducted interviews with 28 adult family members of women who died from maternal causes, as well as 13 stakeholders (government officials, civil society, and a UN agency); and held 10 focus group discussions with 87 community members. Data were analyzed using NVivo10 software for qualitative analysis. We found that newborns and children whose mothers died from maternal causes face nutrition deficits, and are less likely to access needed health care than children with living mothers. Older children drop out of school to care for younger siblings and contribute to household and farm labor which may be beyond their capacity and age, and often choose migration in search of better opportunities. Family fragmentation is common following maternal death, leading to tenuous relationships within a household with the births and prioritization of additional children further stretching limited financial resources. Currently, there is no formal standardized support system for families caring for vulnerable children in Ethiopia. Impacts of maternal mortality on children are far-reaching and have the potential to last into adulthood. Coordinated, multi-sectorial efforts towards mitigating the impacts on children and families following a maternal death are lacking. In order to prevent impacts on children and families, efforts targeting maternal mortality must address inequalities in access to care at the community, facility, and policy levels.

Experiences of time: a qualitative inquiry into experiences of time as described by palliative care inpatients.

PubMed

Robertson, Matra

2015-02-01

In palliative care, health professionals provide support and care for patients for the duration of the unknown time toward death. While the experiences of patients diagnosed with a life limiting illness in palliative care have received some scholarly attention, little research has explored these experiences as described by palliative inpatients themselves. The purpose of this article is to explore how patients describe their lived experiences of time while in a palliative inpatient facility. This study used a qualitative phenomenological method and nine inpatients were recruited. They were interviewed utilizing in-depth semi-structured interviews, which were audio taped and transcribed. These interview transcripts of their descriptions were the data sources for this inquiry. Their description is part of a broader phenomenological inquiry on the experience of living with a life limiting illness described by palliative inpatients. Data were analyzed to identify essential themes within and across cases. Three essential themes were revealed: "brief time"; "waiting time," and "transcendental horizon: future time." These themes were not mutually exclusive and participant's experiences of time approaching death were described as a time of living toward death. The findings suggest that patients diagnosed with a life limiting illness have multi-dimensional experiences of time. Understanding the experiences of temporality for patients close to the gravity of death, from the patients' own words, can provide direction for patient informed interventions in clinical practice.

Male suicide among construction workers in Australia: a qualitative analysis of the major stressors precipitating death.

PubMed

Milner, Allison; Maheen, Humaira; Currier, Dianne; LaMontagne, Anthony D

2017-06-19

Suicide rates among those employed in male-dominated professions such as construction are elevated compared to other occupational groups. Thus far, past research has been mainly quantitative and has been unable to identify the complex range of risk and protective factors that surround these suicides. We used a national coronial database to qualitatively study work and non-work related influences on male suicide occurring in construction workers in Australia. We randomly selected 34 cases according to specific sampling framework. Thematic analysis was used to develop a coding structure on the basis of pre-existing theories in job stress research. The following themes were established on the basis of mutual consensus: mental health issues prior to death, transient working experiences (i.e., the inability to obtain steady employment), workplace injury and chronic illness, work colleagues as a source of social support, financial and legal problems, relationship breakdown and child custody issues, and substance abuse. Work and non-work factors were often interrelated pressures prior to death. Suicide prevention for construction workers needs to take a systematic approach, addressing work-level factors as well as helping those at-risk of suicide.

Living and dying with dignity: a qualitative study of the views of older people in nursing homes.

PubMed

Hall, Sue; Longhurst, Susan; Higginson, Irene

2009-07-01

most older people living in nursing homes die there. An empirically based model of dignity has been developed, which forms the basis of a brief psychotherapy to help promote dignity and reduce distress at the end of life. to explore the generalisability of the dignity model to older people in nursing homes. qualitative interviews were used to explore views on maintaining dignity of 18 residents of nursing homes. A qualitative descriptive approach was used. The analysis was both deductive (arising from the dignity model) and inductive (arising from participants' views). the main categories of the dignity model were broadly supported: illness-related concerns, social aspects of the illness experience and dignity conserving repertoire. However, subthemes relating to death were not supported and two new themes emerged. Some residents saw their symptoms and loss of function as due to old age rather than illness. Although residents did not appear to experience distress due to thoughts of impending death, they were distressed by the multiple losses they had experienced. these findings add to our understanding of the concerns of older people in care homes on maintaining dignity and suggest that dignity therapy may bolster their sense of dignity.

Psychological responses to terminal illness and eventual death in Koreans with cancer.

PubMed

Kang, Kyung-Ah; Miller, Jean R; Lee, Won-Hee

2006-01-01

This qualitative study describes the psychological responses of Korean participants with terminal cancer (stages III-IV) from time of diagnosis to death. Eighteen participants, ages 48 to 73, were interviewed at various phases of dying. Using analytic induction, three categories (nonacceptance, resignation, submission), characteristic patterns of responses over the course of illness and typical responses within categories were generated. Nonaccepters denied the possibility of death while struggling to live; their typical response was resistance. Resigners displayed sorrow, thoughts about their destiny, and growing acceptance of their fate. Their typical response was nonresistance. Submitters were shocked initially, searched for God's will, and prepared for death with hope. Their typical response was hopeful that God would care for them and their families. Participants' ages, physical pain, burden to family, and beliefs played important roles in the patterns of responses.

[Parental death in childhood: the state of theoretical knowledge and clinical challenges in the future].

PubMed

Mentec, Margaux; Flahault, Cécile

2015-03-01

Although children's psychological adaptation to parental cancer is a wide field for psycho-oncological research, few empirical studies target children bereavement specifically following parental cancer. In this paper, our purpose is to make a state of art about literature concerning parental death. Literature dealing with grief concerns psychopathological consequences of parental loss and most recently post-traumatic growth. Although references about support programs have emerged, few of these programs have been scientifically evaluated. This review underlines that more studies are needed with prospective quantitative and qualitative studies, in order to describe more precisely children bereavement process and long term effects of bereavement. Psychological support for other family members and evaluation of support programs seem to be critical to improve children adaptation to parental death. Copyright © 2015 Société Française du Cancer. Published by Elsevier Masson SAS. All rights reserved.

Suicide survivors' mental health and grief reactions: a systematic review of controlled studies.

PubMed

Sveen, Carl-Aksel; Walby, Fredrik A

2008-02-01

There has been a debate over several decades whether suicide survivors experience more severe mental health consequences and grief reactions than those who have been bereaved through other causes of death. This is the first systematic review of suicide survivors' reactions compared with survivors after other modes of death. Studies were identified by searching the PsychINFO and MEDLINE databases. Forty-one studies met the eligibility criteria. A qualitative data analysis was performed. There were no significant differences between survivors of suicide and other bereaved groups regarding general mental health, depression, PTSD symptoms, anxiety, and suicidal behavior. The results regarding the overall level of grief are less clear, depending on whether general grief instruments or suicide-specific instruments are used. Considering specific grief variables, suicide survivors report higher levels of rejection, shame, stigma, need for concealing the cause of death, and blaming than all other survivor groups.

Dying at home: a qualitative study of the perspectives of older South Asians living in the United Kingdom.

PubMed

Venkatasalu, Munikumar R; Seymour, Jane E; Arthur, Antony

2014-03-01

South Asians constitute the single largest ethnic minority group in the United Kingdom, yet little is known about their perspectives on, and experiences of, end-of-life care. To explore beliefs, attitudes and expectations expressed by older South Asians living in East London about dying at home. A qualitative study using focus groups and semi-structured interviews. Data were analysed using a constructivist grounded theory approach. Five focus groups and 29 in-depth semi-structured interviews were conducted with a total of 55 older adults (24 men and 31 women) aged between 52 and 78 years. Participants from six South Asian ethnic groups were recruited via 11 local community organisations. Two key themes were identified. The theme of 'reconsidering the homeland' draws on the notion of 'diaspora' to help understand why for many participants, the physical place of death was perceived as less important than the opportunity to carry out cultural and religious practices surrounding death. The second theme 'home as a haven' describes participants' accounts of how their home is a place in which it is possible to perform various cultural and religious rituals. Cultural and religious practices were often seen as essential to achieving a peaceful death and honouring religious and filial duties. Older people of South Asian ethnicity living in East London perceive home as more than a physical location for dying relatives. They make efforts to adhere, and also adapt, to important social and cultural values relating to death and dying as part of the wider challenge of living in an emigrant society.

A pragmatic belief system in family meaning-making after death.

PubMed

Black, Helen K; Santanello, Holly R; Rubinstein, Robert L

2014-01-01

The authors explored a sample of families' beliefs concerning creation of meaning in the recent death of the elderly husband and father and his existence in an afterlife. Data were collected through qualitative inquiry. Family members from 34 families were asked about their reaction to their loved one's death. Three themes emerged from participants' responses (a) the significance of context in the father and husband's life and death; (b) family members' folk beliefs; and (c) recalling the after-death ritual. The themes interpenetrate at the point where family members, although doubtful, hoped their loved one continues in an afterlife.

Liberating burdensomeness of suicide survivorship loss: A Critical Interpretive Synthesis.

PubMed

Talseth, Anne-Grethe; Gilje, Fredricka L

2017-12-01

What is an interpreted and synthesised understanding of responses of survivors to a suicide death of a close person? It is well known that survivors of suicide loss who are in a close relationship with the deceased are at high risk for suicidality and health conditions. Nurses in various settings need evidenced-informed approaches to encounter these vulnerable persons and support their healing journey from postvention to prevention. The design is reflexive and iterative. A Critical Interpretive Synthesis comprised of six phases: formulating the review question; searching literature; sampling; determining quality; extracting data; interpretive synthesis. Qualitative content analysis was also. Based on a sample of 15 published full-text qualitative and quantitative nursing research studies published between 1990 and 2016, an aggregated, interpreted and synthesised understanding of responses of survivors of suicide loss to the suicide death of a close person emerged. Four synthesised concepts were: dreading burden of suicide risk and stigma; facing burdensomeness in the aftermath of suicide death; enduring being burdened-unburdened, striving to invest in living; and liberating burdensomeness, journeying toward healing. Contextually, geo-cultural gaps exist in published nursing studies. Most studies were from North American and a few from Asia. The reported suicide deaths occurred over a wide range of time. Conceptually, four synthesised concepts can be viewed as a process of moving from burdensomeness to liberating burdensomeness. Methodologically, a small body of knowledge that met quality appraisal was interpreted and synthesised into an understanding of an evidenced-informed approach to guide nurses' encounters with survivors of suicide loss. The results contribute to an evidenced-informed approach for nurses in practice to support survivors of suicide loss journeying from burdensomeness to liberating burdensomeness. Results also serve as a foundation for further research. © 2017 John Wiley & Sons Ltd.

Music during after-death care: a focus group study.

PubMed

Holm, Marianne S; Fålun, Nina; Gjengedal, Eva; Norekvål, Tone M

2012-01-01

The intensive care unit (ICU) is not only a place to recover from injuries incurred during accidents and from serious illness. For many patients, it is also a place where they might die. Nursing care does not stop when a patient dies; rather, it continues with the care of the deceased and with family support. The aims of this study were (1) to explore the experiences and attitudes of nurses towards the use of ambient music in the ICU during after-death care and (2) to describe the feedback nurses received from relatives when music was used during the viewing. A qualitative design employing focus group interviews was used. Three focus group interviews with 15 nurses were conducted. All the interviews were audiotaped, transcribed verbatim and analysed using qualitative content analysis. Six main categories of attitudes emerged from the analysis: (1) different attitudes among nurses towards the use of music; (2) music affects the atmosphere; (3) music affects emotions; (4) use of music was situational; (5) special choice of music and (6) positive feedback from the bereaved. This study demonstrates that music might be helpful for nurses during after-death care as well as for the care of the relatives. Including ambient music in an after-death care programme can help nurses show respect for the deceased as the body is being prepared. Music played during the viewing may be a way of helping relatives in their time of grieving. It may ease the situation by making that event special and memorable. However, standardizing this intervention does not seem appropriate. Rather, the individual nurse and the family must decide whether music is to be used in a particular situation. © 2012 The Authors. Nursing in Critical Care © 2012 British Association of Critical Care Nurses.

Professional support requirements and grief interventions for parents bereaved by an unexplained death at different time periods in the grief process.

PubMed

Rudd, Rebecca A; D'Andrea, Livia M

2013-01-01

The purpose of this qualitative phenomenological study examines the support needs and grief interventions professional and bereaved parents believed were helpful during different time periods in the grief process: the first 72 hours, first three to 14 days, and two weeks and beyond. Ten professionals from the following disciplines were interviewed: emergency communications, emergency medical technician, police, fireman, detective, social worker funeral director chaplain, peer support leader, and bereavement organization. Five parents and one grandparent bereaved by Sudden Infant Death Syndrome (SIDS) or Sudden Unexplained Death in Childhood (SUDC) were interviewed. This study identified 13 support need and grief interventions: contact support people, emotional and cognitive regulation, preliminary information on cause of death, time with deceased child, accommodate and advocate, human compassion and support, describe timeline and process, referrals and resources, affordable and easy access to services, communication and follow-up, community experience, professional mental health support, and memorialize. Recommendations are provided on ways to improve services to newly bereaved parents.

Relationships between personal attitudes about death and communication with terminally ill patients: How oncology clinicians grapple with mortality.

PubMed

Rodenbach, Rachel A; Rodenbach, Kyle E; Tejani, Mohamedtaki A; Epstein, Ronald M

2016-03-01

Clinician discomfort with death may affect care of patients but has not been well-studied. This study explores oncology clinicians' attitudes surrounding their own death and how these attitudes both affect and are affected by their care of dying patients and their communication with them. Qualitative interviews with physicians (n=25), nurse practitioners (n=7), and physician assistants (n=1) in medical or hematologic oncology clinical practices about communication styles, care of terminally ill patients, and personal perspectives about mortality. Clinicians described three communication styles used with patients about death and dying: direct, indirect, or selectively direct. Most reported an acceptance of their mortality that was "conditional," meaning that that they could not fully know how they would respond if actually terminally ill. For many clinicians, caring for dying patients affected their outlook on life and death, and their own perspectives on life and death affected their approach to caring for dying patients. An awareness of personal mortality may help clinicians to discuss death more openly with patients and to provide better care. Efforts to promote self-awareness and communication training are key to facilitating clear communication with and compassionate care of terminally ill patients. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Toward a Methodology of Death: Deleuze's "Event" as Method for Critical Ethnography

ERIC Educational Resources Information Center

Rodriguez, Sophia

2016-01-01

This article examines how qualitative researchers, specifically ethnographers, might utilize complex philosophical concepts in order to disrupt the normative truth-telling practices embedded in social science research. Drawing on my own research experiences, I move toward a methodology of death (for researcher/researched alike) grounded in…

Conceptualizing Human Nature and the Divine: Qualitative Interviews with Christians and Buddhists from a Mixed-Methods Study

ERIC Educational Resources Information Center

Crane, Lauren Shapiro; Burns, Emily M.; Johnson, Hannah E.; Brown, Betsy R.; Ufholz, Kelsey E.; Riehle, Jennifer L.

2009-01-01

This study investigated the possibility that a link exists between an individual's concept of Divinity and concept of self. Participants were 12 Christians (6 Catholic, 6 Methodist) and 8 Buddhists. They answered open-ended questions about sacredness, after-death experience, and humanity's relation to the natural world. Content analyses focused on…

A lost cause? Extending verbal autopsy to investigate biomedical and socio-cultural causes of maternal death in Burkina Faso and Indonesia.

PubMed

D'Ambruoso, Lucia; Byass, Peter; Qomariyah, Siti Nurul; Ouédraogo, Moctar

2010-11-01

Maternal mortality in developing countries is characterised by disadvantage and exclusion. Women who die whilst pregnant are typically poor and live in low-income and rural settings where access to quality care is constrained and where deaths, within and outside hospitals, often go unrecorded and unexamined. Verbal autopsy (VA) is an established method of determining cause(s) of death for people who die outside health facilities or without proper registration. This study extended VA to investigate socio-cultural factors relevant to outcomes. Interviews were conducted with relatives of 104 women who died during pregnancy, childbirth or postpartum in two rural districts in Indonesia and for 70 women in a rural district in Burkina Faso. Information was collected on medical signs and symptoms of the women prior to death and an extended section collected accounts of care pathways and opinions on preventability and cause of death. Illustrative quantitative and qualitative analyses were performed and the implications for health surveillance and planning were considered. The cause of death profiles were similar in both settings with infectious diseases, haemorrhage and malaria accounting for half the deaths. In both settings, delays in seeking, reaching and receiving care were reported by more than two-thirds of respondents. Relatives also provided information on their experiences of the emergencies revealing culturally-derived systems of explanation, causation and behaviour. Comparison of the qualitative and quantitative results suggested that the quantified delays may have been underestimated. The analysis suggests that broader empirical frameworks can inform more complete health planning by situating medical conditions within the socio-economic and cultural landscapes in which healthcare is situated and sought. Utilising local knowledge, extended VA has potential to inform the relative prioritisation of interventions that improve technical aspects of life-saving services with those that address the conditions that underlie health, for those whom services typically fail to reach. Copyright © 2010 Elsevier Ltd. All rights reserved.

Is death our business? Philosophical conflicts over the end-of-life in old age psychiatry.

PubMed

McKellar, Duncan; Ng, Felicity; Chur-Hansen, Anna

2016-01-01

Old age psychiatrists work with end-of-life (EOL) issues and encounter patient deaths, but death and dying have received limited focus in old age psychiatry training and research. This qualitative study explores old age psychiatrists' experience of and approach to working with patients at the EOL. Australian old age psychiatrists were purposively sampled and interviewed in-depth. Data saturation was achieved after nine participant interviews. Verbatim transcripts were analysed for themes, which were independently verified. Two dichotomous overarching themes were identified. Death is not our business reflected participants' experience of working in a mental health framework and incorporated four themes: death should not occur in psychiatry; working in a psychiatric treatment model; keeping a distance from death and unexpected death is a negative experience. Death is our business reflected participants' experience of working in an aged care context and incorporated four themes: death is part of life; encountering the EOL through dementia care; doing EOL work and expected death is a positive experience. Participants reported conflict because of the contradictory domains in which they work. They were comfortable working with patients at the EOL when death was expected, particularly in dementia. By contrast, they struggled with death as an adverse outcome in circumstances influenced by mental health culture, which was characterised by risk management, suicide prevention and a focus on recovery. This study has implications for models of care underpinning old age psychiatry. An integrated person-centred model of care may provide a contextually appropriate approach for practice.

Understanding the Atheist College Student: A Qualitative Examination

ERIC Educational Resources Information Center

Mueller, John A.

2012-01-01

The purpose of this study was to examine and understand atheist college students' views on faith and how they experience the college campus as a result. I conducted interviews with 16 undergraduate and graduate self-identified atheist college students. Students discussed losing faith and transitioning to atheism; making meaning of life, death, and…

A Qualitative Study of Mexican American Adolescents and Depression

ERIC Educational Resources Information Center

Fornos, Laura B.; Mika, Virginia Seguin; Bayles, Bryan; Serrano, Alberto C.; Jimenez, Roberto L.; Villarreal, Roberto

2005-01-01

Depressive disorders are present in a high percentage of Mexican American adolescents. Among the US Mexican American population, suicide is the fourth leading cause of death among 10- to 19-year-olds. Little research, however, has focused on Mexican American adolescents' knowledge and views about depression and seeking help for depression. Results…

Sexual Orientation Microaggressions: "Death by a Thousand Cuts" for Lesbian, Gay, and Bisexual Youth

ERIC Educational Resources Information Center

Nadal, Kevin L.; Issa, Marie-Anne; Leon, Jayleen; Meterko, Vanessa; Wideman, Michelle; Wong, Yinglee

2011-01-01

In recent years, there has been a growth of literature examining the mental health impacts of microaggressions, which are defined as subtle forms of discrimination toward oppressed groups. The current study utilized a qualitative focus group method and directed content analysis to categorize several types of sexual orientation microaggressions…

Qualitative thematic analysis of the phenomenology of near-death experiences

PubMed Central

Degrange, Sophie; Martial, Charlotte; Charland-Verville, Vanessa; Lallier, François; Bragard, Isabelle; Guillaume, Michèle; Laureys, Steven

2018-01-01

Near-death experiences (NDEs) refer to profound psychological events that can have an important impact on the experiencers’ (NDErs) lives. Previous studies have shown that NDEs memories are phenomenologically rich. In the present study, we therefore aimed to extract the common themes (referred to as “features” in the NDE literature) reported by NDErs by analyzing all the concepts stored in the narratives of their experiences. A qualitative thematic analysis has been carried out on 34 cardiac arrest survivors’ NDE narratives. Our results shed the light on the structure of the narratives by identifying 10 “time-bounded” themes which refer to isolated events encountered during the NDE and 1 “transversal” theme which characterizes the whole narrative and generally appears as a retrospective comment of self-reflection on the experience. The division of narratives into themes provides us with detailed information about the vocabulary used by NDErs to describe their experience. This established thematic method enables a rigorous description of the phenomenon, ensuring the inclusion of all self-reported manifestations of themes in narratives. PMID:29444184

Employing imaginative rationality: using metaphor when discussing death.

PubMed

Llewellyn, Rebecca; Jaye, Chrystal; Egan, Richard; Cunningham, Wayne; Young, Jessica; Radue, Peter

2017-03-01

The prevalence of metaphors in medicine is widely acknowledged. In a qualitative study exploring expectations of longevity, we observed repeated recourse to the imaginative rationality provided by metaphors to express perspectives on longevity and death. Bafflement, acceptance, uncertainty and distress were conveyed through metaphors, providing valuable insight into the internal healthcare frameworks of participants. Skilful use of imaginative rationality in the healthcare setting may illuminate the elusive and often eschewed topic of death in a way that fosters clarity and new understandings, and pave the way towards a better life, and death for patients. By becoming aware of the nuances contained within patients'-as well as their own-metaphors, clinicians may enhance patients' overall healthcare experience and avert unintended miscommunication. 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/.

Caring at home until death: enabled determination.

PubMed

Robinson, Carole A; Bottorff, Joan L; McFee, Erin; Bissell, Laura J; Fyles, Gillian

2017-04-01

The importance of family caregivers in providing palliative care at home and in supporting a home death is well supported. Gaining a better understanding of what enables palliative family caregivers to continue caring at home for their family members until death is critical to providing direction for more effective support. The purpose of the study was to describe the experiences of bereaved family caregivers whose terminally ill family members with advanced cancer were successful in achieving a desired home death. A qualitative interpretive descriptive approach was used. Data were collected using semi-structured, audio-recorded interviews conducted in-person or via telephone in addition to field notes and reflective journaling. The study took place in British Columbia, Canada, and included 29 bereaved adult family caregivers who had provided care for a family member with advanced cancer and experienced a home death. Four themes captured the experience of caring at home until death: context of providing care, supportive antecedents to providing care, determination to provide care at home, and enabled determination. Factors that enabled determination to achieve a home death included initiation of formal palliative care, asking for and receiving help, augmented care, relief or respite, and making the healthcare system work for the ill person. Clarifying caregiving goals and supporting the factors that enable caregiver determination appear to be critical in enhancing the likelihood of a desired home death.

The mourning process of older people with dementia who lost their spouse.

PubMed

Watanabe, Akiko; Suwa, Sayuri

2017-09-01

To explore the mourning process of people with dementia who have lost their spouse, using family caregivers' and professionals' perspectives and to devise grief care for people with dementia. There have been studies on the loss of one's spouse; however, little is known about widows and widowers with dementia as they may find it hard to tell their perception and feelings to others accurately because of cognitive impairment. Qualitative descriptive study using semi-structured interviews. Seven family caregivers and six professional caregivers from day care centres were interviewed between June and September 2015. Qualitative content analysis was used to identify mourning behaviours of people with dementia. In the mourning process of people with dementia, different behaviours were found according to dementia stages and different circumstances. In FAST2, they could remember their spouse's death. In FAST4 -6, it took 1 year to be able to perceive their spouse's death and more time to store it. In FAST 7, people with dementia did not discern his spouse's death throughout the process. Furthermore, it was revealed that people with dementia followed a different mourning process from conventional ones. In the care of widows and widowers with dementia it is crucial to adjust circumstances to allow people with dementia to guess reality. Further studies are needed to clarify differences between the mourning process of people with dementia and that of intact older people to develop a grief model and educational programmes. © 2017 John Wiley & Sons Ltd.

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.

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

On the emotional connection of medical specialists dealing with death and dying: a qualitative study of oncologists, surgeons, intensive care specialists and palliative medicine specialists.

PubMed

Zambrano, Sofia Carolina; Chur-Hansen, Anna; Crawford, Gregory B

2012-09-01

This paper reports on qualitative data exploring the experiences and coping mechanisms of medical specialists from the specialties of intensive care, surgery, oncology and palliative care, when dealing with death and dying and their emotional connection with dying patients in the context of a life-threatening illness. Thirty-three semi-structured individual interviews were analysed using thematic analysis. One of the key themes of medical specialists' experiences with death and dying was their ambivalence about developing emotional connections with patients and families. Advantages of not engaging emotionally with patients were related to preserving objectivity in the decision making process, while a perceived disadvantage was the loss of the opportunity to engage in meaningful relationships that could positively influence patients, families and the medical specialist. Finding a balance in the face of ambivalence was a preferred approach and participants employed a variety of coping strategies. Participants took different positions about the emotional connection that should develop with their dying patients and their families. Although there was agreement about finding a balance between objectivity and connection, their strategies for achieving this seem to be subjective and prescribed by individual notions. By sharing perspectives and learning how other colleagues deal with similar issues, there is an opportunity for medical practitioners to develop a well-rounded approach to dealing with death and dying, which may enhance personal and professional relationships and may ultimately influence future generations of medical practitioners.

Life after Loss: Parent Bereavement and Coping Experiences after Infant Death in the Neonatal Intensive Care Unit.

PubMed

Currie, Erin R; Christian, Becky J; Hinds, Pamela S; Perna, Samuel J; Robinson, Cheryl; Day, Sara; Bakitas, Marie; Meneses, Karen

2018-05-14

The death of an infant in the neonatal intensive care unit (NICU) is a profound and unexpected loss for parents that results in a complex process of coping with bereavement. A descriptive qualitative approach was used to explore parent bereavement and coping experiences after infant death in the NICU. The Dual Process Model of Coping with Bereavement was used as a conceptual framework to help understand how parents cope with grief after infant death. Living with infant death was a process that resulted in major life changes and a process of oscillating among various coping strategies.

The effect of low larkspur (Delphinium spp.) co-administration on the acute toxicity of death camas (Zigadenus spp.) in sheep.

PubMed

Welch, K D; Green, B T; Gardner, D R; Stonecipher, C A; Panter, K E; Pfister, J A; Cook, D

2013-12-15

In most cases where livestock are poisoned by plants in a range setting, there is more than one potential poisonous plant in the same area. Two poisonous plants that are often found growing simultaneously in the same location are death camas (Zigadenus spp.) and low larkspur (Delphinium spp.). Sheep are known to be susceptible to death camas poisoning while they are thought to be resistant to larkspur. The objective of this study was to determine if co-administration of low larkspur would exacerbate the toxicity of death camas in sheep. A dose finding study was performed to find a dose of death camas that caused minimal clinical signs of poisoning. Sheep were observed for clinical signs of poisoning as well as changes in heart rate and muscle fatigue. Sheep dosed with 1.14 g of death camas per kg BW showed slight frothing and lethargy, whereas sheep dosed with death camas and low larkspur showed slightly more noticeable clinical signs of poisoning. Sheep dosed with only low larkspur, at 7.8 g/kg BW, showed no signs of poisoning. Although we observed a qualitative difference in clinical signs of intoxication in sheep co-treated with death camas and low larkspur we did not detect any quantitative differences in heart rate, exercise-induced muscle fatigue, or differences in serum zygacine kinetics. Consequently, the results from this study suggest that low larkspur does not affect the toxicity of death camas in sheep. The results from this study increase knowledge and understanding regarding the acute toxicity of death camas and low larkspur in sheep. As combined intoxications are most likely common, this information will be useful in further developing management recommendations for ranchers and in designing additional experiments to study the toxicity of death camas to other livestock species. Published by Elsevier Ltd.

Grief Experience of Bereaved Malay/Muslim Youths in Singapore: The Spiritual Dimension

ERIC Educational Resources Information Center

Hassan, Murshidah; Mehta, Kalyani

2010-01-01

This article is based on a qualitative study conducted in Singapore which examined different coping mechanisms engaged by Malay/Muslim bereaved youths following parental death. The research applied the revised Transactional Model of Stress and Coping as well as the Adolescent Coping Scale as a theoretical framework for analysing findings. Of the…

Barriers to Implementation of Workplace Wellness Programs in Career Fire Service Organizations: An Exploratory Qualitative Study

ERIC Educational Resources Information Center

Harrington, Jillian

2017-01-01

Firefighter wellness has become a concern across the country, in large part because a combination of poor fitness levels, excess weight, and a high-intensity work environment contributes to chronic illness as well as line-of-duty deaths. Workplace wellness programs are effective in career fire service organizations, but nationwide implementation…

Developing a Model of Health Behavior Change to Reduce Parasitic Disease in Vietnam

ERIC Educational Resources Information Center

Petersen, Suni; Do, Trina; Shaw, Christy; Brake, Kaile

2016-01-01

Worldwide more deaths occur due to conditions that can be ameliorated by behavior change. Changing health behaviors using models popularized in non-western countries has not proven particularly successful. The purpose of this study was to test variables elicited during qualitative interviews and cultural conversations to develop a model of health…

Understanding Impediments and Enablers to Physical Activity among African American Adults: A Systematic Review of Qualitative Studies

ERIC Educational Resources Information Center

Siddiqi, Zoveen; Tiro, Jasmin A.; Shuval, Kerem

2011-01-01

Physical inactivity is a leading cause of premature death, disability and numerous chronic diseases. Minority and underserved populations in the United States and worldwide have a higher prevalence of physical inactivity affecting their morbidity and mortality rates. In the United States, African Americans are less physically active and have a…

Exploring the Experiences of People with Intellectual Disabilities when Service Users Die

ERIC Educational Resources Information Center

Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John

2011-01-01

Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population's palliative care needs. We report on findings…

Qualitative Study on the Perceptions of Terminally Ill Cancer Patients and Their Family Members Regarding End-of-Life Experiences Focusing on Palliative Sedation.

PubMed

Eun, Young; Hong, In-Wha; Bruera, Eduardo; Kang, Jung Hun

2017-06-01

Patients with terminal cancer experience refractory symptoms in the last days of life. Although palliative sedation (PS) is recommended for patients suffering unbearable symptoms with imminent death, it requires clear communication between physicians and patients/caregivers. Understanding the demands and perceptions of patients and caregivers in the end-of-life phase are needed for effective communication. To explore patient experiences regarding end-of-life status and PS. The study was performed between October and December, 2013 with eligible terminal cancer patients and their families in a non-religious, tertiary healthcare facility in Korea. Eligibility criteria were a hospitalized cancer patient with a life expectancy of less than three months and who had never experienced PS. Data were collected via face-to-face in-depth interviews and analyzed using the constant comparative method of qualitative analysis. Saturation was achieved after conducting interviews with 13 patients or care-giving family members. Enrolled patients raised the following issues: 1) simultaneously harboring the hope of prolonging life and wishing for a peaceful death, 2) experiencing difficulties in having honest conversations with caregivers regarding death, 3) possessing insufficient knowledge and information regarding PS, and 4) hoping for the decision on PS to be made before suffering becomes too great. Terminally ill cancer patients and their caregivers expressed conflicting desires in hoping to prolong life and simultaneously wishing to experience a peaceful death. Improvements in the communications that occur among physicians, patients, and caregivers on the issues of prognosis and PS are needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Still Searching: A Meta-Synthesis of a Good Death from the Bereaved Family Member Perspective

PubMed Central

Tenzek, Kelly E.; Depner, Rachel

2017-01-01

The concept of a good death continues to receive attention in end-of-life (EOL) scholarship. We sought to continue this line of inquiry related to a good death by conducting a meta-synthesis of published qualitative research studies that examined a good death from the bereaved family member’s perspective. Results of the meta-synthesis included 14 articles with 368 participants. Based on analysis, we present a conceptual model called The Opportunity Model for Presence during the EOL Process. The model is framed in socio-cultural factors, and major themes include EOL process engagement with categories of healthcare participants, communication and practical issues. The second theme, (dis)continuity of care, includes categories of place of care, knowledge of family member dying and moment of death. Both of these themes lead to perceptions of either a good or bad death, which influences the bereavement process. We argue the main contribution of the model is the ability to identify moments throughout the interaction where family members can be present to the EOL process. Recommendations for healthcare participants, including patients, family members and clinical care providers are offered to improve the quality of experience throughout the EOL process and limitations of the study are discussed. PMID:28441339

Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.

PubMed

Hendry, Maggie; Pasterfield, Diana; Lewis, Ruth; Carter, Ben; Hodgson, Daniel; Wilkinson, Clare

2013-01-01

Assisted dying is legal in four European countries and three American states. Elsewhere, particularly in more affluent or mainly Protestant countries, it remains controversial. Dominant headlines feature professional (medical, legal, religious) arguments versus celebrity campaigners; ordinary people are less clearly represented. To synthesise the international evidence of people's views and attitudes towards assisted dying in order to inform current debate about this controversial issue. Systematic review and mixed method synthesis of qualitative and survey data. Eleven electronic databases from inception to October 2011; bibliographies of included studies. Two reviewers independently screened papers and appraised quality. Qualitative results were extracted verbatim; survey results were summarised in a table. Qualitative data were synthesised using framework methods and survey results integrated where they supported, contrasted or added to the themes identified. Sixteen qualitative studies and 94 surveys were included; many participants considered the immediate relevance of assisted dying for them. Themes related to poor quality of life, a good quality of death, potential abuse of assisted dying and the importance of individual stance. People valued autonomy in death as much as in life. Attitudes were diverse, complex and related to definitions of unbearable suffering including physical, psycho-social and existential factors and were consistent regardless of social, economic, legal and health-care contexts. Our review sheds light on ordinary people's perspectives about assisted dying, when they are ill or disabled. Unbearable suffering is a key construct, and common factors are revealed that lead people to ask for help to die. The consistency of international views indicates a mandate for legislative and medical systems worldwide to listen and understand this.

Clergy Views on a Good Versus a Poor Death: Ministry to the Terminally Ill.

PubMed

LeBaron, Virginia T; Cooke, Amanda; Resmini, Jonathan; Garinther, Alexander; Chow, Vinca; Quiñones, Rebecca; Noveroske, Sarah; Baccari, Andrew; Smith, Patrick T; Peteet, John; Balboni, Tracy A; Balboni, Michael J

2015-12-01

Clergy are often important sources of guidance for patients and family members making medical decisions at the end-of-life (EOL). Previous research revealed spiritual support by religious communities led to more aggressive care at the EOL, particularly among minority patients. Understanding this phenomenon is important to help address disparities in EOL care. The study objective was to explore and describe clergy perspectives regarding "good" versus "poor" death within the participant's spiritual tradition. This was a qualitative, descriptive study. Community clergy from various spiritual backgrounds, geographical locations within the United States, and races/ethnicities were recruited. Participants included 35 clergy who participated in one-on-one interviews (N = 14) and two focus groups (N = 21). Semistructured interviews explored clergy viewpoints on factors related to a "good death." Principles of grounded theory were used to identify a final set of themes and subthemes. A good death was characterized by wholeness and certainty and emphasized being in relationship with God. Conversely, a "poor death" was characterized by separation, doubt, and isolation. Clergy identified four primary determinants of good versus poor death: dignity, preparedness, physical suffering, and community. Participants expressed appreciation for contextual factors that affect the death experience; some described a "middle death," or one that integrates both positive and negative elements. Location of death was not viewed as a significant contributing factor. Understanding clergy perspectives regarding quality of death can provide important insights to help improve EOL care, particularly for patients highly engaged with faith communities. These findings can inform initiatives to foster productive relationships between clergy, clinicians, and congregants and reduce health disparities.

Identifying Factors Associated with Maternal Deaths in Jharkhand, India: A Verbal Autopsy Study

PubMed Central

Pradhan, Manas Ranjan

2013-01-01

Maternal mortality has been identified as a priority issue in health policy and research in India. The country, with an annual decrease of maternal mortality rate by 4.9% since 1990, now records 63,000 maternal deaths a year. India tops the list of countries with high maternal mortality. Based on a verbal autopsy study of 403 maternal deaths, conducted in 2008, this paper explores the missed opportunities to save maternal lives, besides probing into the socioeconomic factors contributing to maternal deaths in Jharkhand, India. This cross-sectional study was carried out in two phases, and a multistage sampling design was used in selecting deaths for verbal autopsy. Informed consent was taken into consideration before verbal autopsy. The analytical approach includes bivariate analysis using SPSS 15, besides triangulation of qualitative and quantitative findings. Most of the deceased were poor (89%), non-literates (85%), and housewives (74%). Again, 80% died in the community/at home, 28% died during pregnancy while another 26% died during delivery. Any antenatal care was received by merely 28% women, and only 20% of the deliveries were conducted by skilled birth attendants (doctors and midwives). Delays in decision-making, travel, and treatment compounded by ignorance of obstetric complications, inadequate use of maternal healthcare services, poor healthcare infrastructure, and harmful rituals are the major contributing factors of maternal deaths in India. PMID:23930345

Identifying factors associated with maternal deaths in Jharkhand, India: a verbal autopsy study.

PubMed

Khan, Nizamuddin; Pradhan, Manas Ranjan

2013-06-01

Maternal mortality has been identified as a priority issue in health policy and research in India. The country, with an annual decrease of maternal mortality rate by 4.9% since 1990, now records 63,000 maternal deaths a year. India tops the list of countries with high maternal mortality. Based on a verbal autopsy study of 403 maternal deaths, conducted in 2008, this paper explores the missed opportunities to save maternal lives, besides probing into the socioeconomic factors contributing to maternal deaths in Jharkhand, India. This cross-sectional study was carried out in two phases, and a multistage sampling design was used in selecting deaths for verbal autopsy. Informed consent was taken into consideration before verbal autopsy. The analytical approach includes bivariate analysis using SPSS 15, besides triangulation of qualitative and quantitative findings. Most of the deceased were poor (89%), non-literates (85%), and housewives (74%). Again, 80% died in the community/at home, 28% died during pregnancy while another 26% died during delivery. Any antenatal care was received by merely 28% women, and only 20% of the deliveries were conducted by skilled birth attendants (doctors and midwives). Delays in decision-making, travel, and treatment compounded by ignorance of obstetric complications, inadequate use of maternal healthcare services, poor healthcare infrastructure, and harmful rituals are the major contributing factors of maternal deaths in India.

Religio-cultural factors contributing to perinatal mortality and morbidity in mountain villages of Nepal: Implications for future healthcare provision.

PubMed

Paudel, Mohan; Javanparast, Sara; Dasvarma, Gouranga; Newman, Lareen

2018-01-01

This paper examines the beliefs and experiences of women and their families in remote mountain villages of Nepal about perinatal sickness and death and considers the implications of these beliefs for future healthcare provision. Two mountain villages were chosen for this qualitative study to provide diversity of context within a highly disadvantaged region. Individual in-depth interviews were conducted with 42 women of childbearing age and their family members, 15 health service providers, and 5 stakeholders. The data were analysed using a thematic analysis technique with a comprehensive coding process. Three key themes emerged from the study: (1) 'Everyone has gone through it': perinatal death as a natural occurrence; (2) Dewata (God) as a factor in health and sickness: a cause and means to overcome sickness in mother and baby; and (3) Karma (Past deeds), Bhagya (Fate) or Lekhanta (Destiny): ways of rationalising perinatal deaths. Religio-cultural interpretations underlie a fatalistic view among villagers in Nepal's mountain communities about any possibility of preventing perinatal deaths. This perpetuates a silence around the issue, and results in severe under-reporting of ongoing high perinatal death rates and almost no reporting of stillbirths. The study identified a strong belief in religio-cultural determinants of perinatal death, which demonstrates that medical interventions alone are not sufficient to prevent these deaths and that broader social determinants which are highly significant in local life must be considered in policy making and programming.

A 'beautiful death': mortality, death, and holidays in a Mexican municipality.

PubMed

Wilches-Gutiérrez, José L; Arenas-Monreal, Luz; Paulo-Maya, Alfredo; Peláez-Ballestas, Ingris; Idrovo, Alvaro J

2012-03-01

Several studies have reported increased mortality during holidays. Using a cultural epidemiological, sequential mixed-methods approach, this study explored holiday-related trends using mortality data from Yautepec (Morelos, Mexico) collected between 1986 and 2008 (N=5027 deaths). This analysis found that mortality increased on Christmas Day and All Saints' Day. Mortality increased on Candlemas Day among women, and increased on New Year's Day among men. More deaths caused by cardiovascular disease among women and traumatic injuries among men occurred during holidays than in non-holiday periods. To ascertain the elements comprising the health/illness/death process in the context of a holiday in this municipality, we conducted semi-structured interviews in March and April 2009 with relatives of seven individuals who had died during holidays in the previous 4 years (N=11); data from these interviews were analyzed from a grounded theory perspective to ascertain common conceptual themes. The "beautiful death" emerged as the main concept in the interpretation of death; this concept was related to the expectation of a good death and the particularly special nature of death during a holiday because of the involvement of religious entities, such as God, the Virgin Mary, and/or a saint, at the moment of death. Quantitative and qualitative results provided information about the important effects of holidays, culture, and religious belief on mortality patterns within a Mexican context, and contributed to a better understanding of the relationships among mortality, the nature of death, and holidays. Our results suggest that, in the studied region, death can be interpreted as a "beautiful process". More research is needed to explore this process in other similar contexts and to address topics related to the care and attention given the dying person and the expectation of a good death. Copyright © 2012 Elsevier Ltd. All rights reserved.

The Experiences of Staff Who Support People with Intellectual Disability on Issues about Death, Dying and Bereavement: A Metasynthesis

ERIC Educational Resources Information Center

Lord, Ailsa J.; Field, Stephen; Smith, Ian C.

2017-01-01

Background: Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement. Staff in intellectual disability services can play a valuable role in improving understanding of these issues in those they support. This qualitative metasynthesis aimed to understand the experiences of staff…

Viewing the body after bereavement due to a traumatic death: qualitative study in the UK

PubMed Central

Ziebland, S

2010-01-01

Objective Whether bereaved relatives should be encouraged to view the body after a traumatic death is uncertain. This analysis of narrative interviews interprets people’s accounts of why and how they decided whether to view the body and their emotional reactions to this, immediately and at a later stage. Design In depth interviews with qualitative analysis. Participants A maximum variation sample of 80 people bereaved because of suicide or other traumatic death. Setting Most people were interviewed in their homes. Results For those who had the option, decisions about seeing the body varied. Some wanted someone else to identify the body, because they feared how it might look or preferred to remember their relative as they had been in life. Those who had wanted to see the body gave various reasons beyond the need to check identity. Some felt they ought to see the body. Others felt that the body had not lost its social identity, so wanted to make sure the loved one was “being cared for” or to say goodbye. Some people wanted to touch the body, in privacy, but the coroner sometimes allowed this only after the postmortem examination, which made relatives feel that the body had become police property. Seeing the body brought home the reality of death; it could be shocking or distressing, but, in this sample, few who did so said they regretted it. Conclusions Even after a traumatic death, relatives should have the opportunity to view the body, and time to decide which family member, if any, should identify remains. Officials should prepare relatives for what they might see, and explain any legal reasons why the body cannot be touched. Guidelines for professional practice must be sensitive to the needs and preferences of people bereaved by traumatic death. The way that relatives refer to the body can be a strong indication for professionals about whether the person who died retains a social identity for the bereaved. PMID:20435644

Complications of induced abortion and miscarriage in three African countries: a hospital-based study among WHO collaborating centers.

PubMed

Goyaux, N; Alihonou, E; Diadhiou, F; Leke, R; Thonneau, P F

2001-06-01

The aim of this study was to describe two of the outcomes of pregnancy, induced abortion and miscarriage, in three African countries. Major maternal risk factors were also evaluated. The study was prospective and based on the medical files of all 1,957 women admitted to participating health care structures. Overall, 988 women were admitted for complications of miscarriage, and 969 for complications of induced abortion. Gestational age was lower in women with miscarriages (p<0.002). The level of use of contraceptive methods ((p<0.003) and educational level ((p<0.005) were lower in women who had had an induced abortion. In our study, 26 maternal deaths were recorded, 22 of which were associated with induced abortion. Infection was the most important risk factor for death (OR=4.8; 1.9-12.4). Maternal deaths related to abortion complications often occurred shortly after hospital admission and with signs of sepsis. This demonstrates the importance of effective emergency services. Unfortunately, hospital-based studies alone cannot assess all maternal death risk factors, especially those for maternal death related to induced abortion complications. It is therefore important to determine what happened to the woman before hospital admission and during her stay in hospital. Combinations of qualitative and quantitative methods could be used to increase our understanding of this problem and to help us to solve it.

A Qualitative Case Study to Investigate the Technology Acceptance Experience Outlined in the TAM Using the Kubler-Ross Stages of Grieving and Acceptance

ERIC Educational Resources Information Center

Sotelo, Benjamin Eladio

2015-01-01

The Technology Acceptance Model (TAM) has been an important model for the understanding of end user acceptance regarding technology and a framework used in thousands of researched scenarios since publication in 1986. Similarly, the Kubler-Ross model of death and dying has also been used as a model for the study of acceptance within the medical…

‘We identify, discuss, act and promise to prevent similar deaths’: a qualitative study of Ethiopia's Maternal Death Surveillance and Response system

PubMed Central

Abebe, Berhanu; Busza, Joanna; Hadush, Azmach; Usmael, Abdurehman; Zeleke, Amsalu Belew; Sita, Sahle; Hailu, Solomon; Graham, Wendy J

2017-01-01

Introduction Ethiopia introduced national Maternal Death Surveillance and Response (MDSR) in 2013 and is among the first sub-Saharan African countries to capture data on facility-based and community-based maternal deaths. We interviewed frontline MDSR implementers about their experiences of the first 2 years of MDSR, including perceptions of its introduction and outcomes for health services. Methods We conducted a qualitative case study in 4 zones in the largest regions, interviewing 69 key informants from regional, zonal, district and facility levels. Results A defining feature of Ethiopia's MDSR system is its integration within existing disease surveillance, with both benefits and challenges. Facilitators of the system's introduction were strong political support, alignment with broader health strategies and strong links across health system departments. Barriers included confusion around new responsibilities, high staff turnover and fear of legal repercussions. Stakeholders believed MDSR increased confidence in using local data to improve maternal health services and enhanced communication across the health system. Conclusions MDSR systems take time to establish, encountering challenges in early implementation. Ensuring MDSR has a clear purpose, explicitly defined roles and responsibilities, and adequate supervisory support from the start will ensure it becomes embedded within the health system as routine practice rather than perceived as a stand-alone system. Countries planning to adopt or extend MDSR can learn from Ethiopia's experience, particularly the decision to make maternal mortality a weekly reportable condition within Public Health Emergency Management. PMID:28589016

Doing one's utmost: nurses' descriptions of caring for dying patients in an intensive care environment.

PubMed

Fridh, Isabell; Forsberg, Anna; Bergbom, Ingegerd

2009-10-01

The aim of this study was to explore nurses' experiences and perceptions of caring for dying patients in an intensive care unit (ICU) with focus on unaccompanied patients, the proximity of family members and environmental aspects. Interviews were conducted with nine experienced ICU nurses. A qualitative descriptive approach was employed. The analysis was performed by means of conventional content analysis [Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005;15:1277-88] following the steps described by e.g. Elo and Kyngas [Elo S, Kyngas H. The qualitative content analysis process. J Adv Nurs 2008;62:107-15]. The analysis resulted in a main category; Doing one's utmost, described by four generic categories and 15 sub-categories, comprising a common vision of the patients' last hours and dying process. This description was dominated by the nurses' endeavour to provide dignified end-of-life care (EOLC) and, when relatives were present, to give them an enduring memory of their loved one's death as a calm and dignified event despite his/her previous suffering and death in a high-technological environment. This study contributes new knowledge about what ICU nurses focus on when providing EOLC to unaccompanied patients but also to those whose relatives were present. Nurses' EOLC was mainly described as their relationship and interaction with the dying patient's relatives, while patients who died alone were considered tragic but left a lesser impression in the nurses' memory.

Developing a Brief Suicide Prevention Intervention and Mobile Phone Application: a Qualitative Report.

PubMed

Kennard, Beth D; Biernesser, Candice; Wolfe, Kristin L; Foxwell, Aleksandra A; Craddock Lee, Simon J; Rial, Katie V; Patel, Sarita; Cheng, Carol; Goldstein, Tina; McMakin, Dana; Blastos, Beatriz; Douaihy, Antoine; Zelazny, Jamie; Brent, David A

2015-10-01

Suicide is the second leading cause of death among youth and has become a serious public health problem. There has been limited research on strategies to decrease the likelihood of reattempt in adolescents. As phase one of a treatment development study, clinicians, parents and adolescents participated in qualitative interviews in order to gain new perspectives on developing a targeted intervention and a safety plan phone application for suicide prevention. Participants indicated that transition of care, specific treatment targets and safety planning were important parts of treatment. In addition, all participants endorsed the use of a smartphone application for these purposes.

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.

Caring for dying cancer patients in the Chinese cultural context: A qualitative study from the perspectives of physicians and nurses.

PubMed

Dong, Fengqi; Zheng, Ruishuang; Chen, Xuelei; Wang, Yanhui; Zhou, Hongyuan; Sun, Rong

2016-04-01

To explore the experiences of Chinese physicians and nurses who care for dying cancer patients in their practical work. This was a qualitative study using semi-structured face-to-face interviews. Fifteen physicians and 22 nurses were recruited from a cancer center in mainland China. The data were analyzed by qualitative thematic analysis. Disclosure of information on death and cancer to dying cancer patients is taboo in traditional Chinese culture, which greatly decreases the physicians' and nurses' effective communication with dying patients in end-of-life (EOL) care. Both physicians and nurses described strong ambitions to give dying cancer patients high-quality care, and they emphasized the importance of maintaining dying patients' hopes in the death-denying cultural context. However, the nurses were more concerned with dying patients' physical comfort and wish fulfillment, while the physicians placed greatest emphasis on patients' rights and symptom management. Both physicians and nurses suffered whilst also benefitting from taking care of dying patients which helped with their personal growth and allowed greater insight into themselves and their clinical practice. Our results also indicated that Chinese physicians and nurses require improved methods of communication on EOL care, as well as needing more support to provide quality EOL care. Chinese physicians and nurses experience a challenge when caring for dying cancer patients in the Chinese cultural context. Flexible and specific education and training in EOL cancer care are required to meet the needs of Chinese physicians and nurses at the cancer center studied. Copyright © 2015 Elsevier Ltd. All rights reserved.

Career stages in wildland firefighting: Implications for voice in risky situations

Treesearch

Alexis Lewis; Troy E. Hall; Anne Black

2011-01-01

Avoidance of injury and death on the fireline may depend on firefighters voicing their concerns, but often this does not occur. Reasons for employee reticence identified in the literature include a perception of various personal costs or a belief that raising concerns is futile. Additionally, the social context may play a significant role. In a qualitative study using...

The Self-Directed Learning Experience of Mothers Whose Child Has Had a Paediatric Stroke

ERIC Educational Resources Information Center

Grover, Kenda S.

2014-01-01

This study employed qualitative research methodology to explore the experiences of mothers who self-directed their learning following their child's stroke diagnosis. Paediatric stroke, although rare, is among the top 10 causes of death in children in the USA, but information about the cause, treatment and long-term impact are difficult to…

Disempowerment and Psychological Distress in the Lives of Young People in Eastern Cape, South Africa

ERIC Educational Resources Information Center

Nduna, Mzikazi; Jewkes, Rachel

2012-01-01

A qualitative study was conducted in Butterworth, in the rural Eastern Cape Province of South Africa, to explore sources of distress for young people. Semi-structured, individual in-depth interviews were conducted with 16 men and 24 women aged 16-22 years. The findings revealed interconnections between structural factors such as death, poverty,…

A practical classification schema incorporating consideration of possible asphyxia in cases of sudden unexpected infant death

PubMed Central

Randall, Brad B.; Wadee, Sabbir A.; Sens, Mary Ann; Kinney, Hannah C.; Folkerth, Rebecca D.; Odendaal, Hein J.; Dempers, Johan J.

2012-01-01

Although the rate of the sudden infant death syndrome (SIDS) has decreased over the last two decades, medical examiners and coroners are increasingly unwilling to use the SIDS diagnosis, particularly when there is an unsafe sleeping environment that might pose a risk for asphyxia. In order to reliably classify the infant deaths studied in a research setting in the mixed ancestory population in Cape Town, South Africa, we tested a classification system devised by us that incorporates the uncertainty of asphyxial risks at an infant death scene. We classified sudden infant deaths as: A) SIDS (where only a trivial potential for an overt asphyxial event existed); B) Unclassified—Possibly Asphyxial-Related (when any potential for an asphyxial death existed); C) Unclassified—Non-Asphyxial-Related (e.g., hyperthermia); D) Unclassified—No autopsy and/or death scene investigation; and E) Known Cause of Death. Ten infant deaths were classified according to the proposed schema as: SIDS, n = 2; Unclassified—Possibly Asphyxial-Related, n = 4; and Known Cause, n = 4. A conventional schema categorized the deaths as 6 cases, SIDS, and 4 cases, Known Cause, indicating that 4/6 (67%) of deaths previously classified as SIDS are considered related importantly to asphyxia and warrant their own subgroup. This new classification schema applies a simpler, more qualitative approach to asphyxial risk in infant deaths. It also allows us to test hypotheses about the role of asphyxia in sudden infant deaths, such as in brainstem defects in a range of asphyxial challenges. PMID:19484508

Younger African American Adults' Use of Religious Songs to Manage Stressful Life Events.

PubMed

Hamilton, Jill B; Stewart, Jennifer M; Thompson, Keitra; Alvarez, Carmen; Best, Nakia C; Amoah, Kevin; Carlton-LaNey, Iris B

2017-02-01

The aim of this study was to explore the use of religious songs in response to stressful life events among young African American adults. Fifty-five young African American adults aged 18-49 participated in a qualitative study involving criterion sampling and open-ended interviews. Data analysis included content analysis and descriptive statistics. Stressful life events were related to work or school; caregiving and death of a family member; and relationships. Religious songs represented five categories: Instructive, Communication with God, Thanksgiving and Praise, Memory of Forefathers, and Life after Death. The tradition of using religious songs in response to stressful life events continues among these young adults. Incorporating religious songs into health-promoting interventions might enhance their cultural relevance to this population.

[The Meaning That Families Place on the Suicide of Pregnant Mothers in Antioquia, 2010-2011].

PubMed

Builes Correa, María Victoria; Ramírez Zapata, Alexandra María; Arango Arbeláez, Beatriz Elena; Anderson Gómez, María Teresa

2014-01-01

To identify the meaning that the families of two pregnant women from Antioquia placed on their suicide in 2010-2011. A qualitative research using the phenomenological and hermeneutical approach, specifically a case study analysis. The category named "family task: weaving a history that helps them to understand" emerged in both families. Two trends were found in the family of Bella: "tragedy, tensions and scenarios" and "fluctuations: between fear-guilt and relief." The family of Consentida showed three trends: "trapped with no escape", "suicide and orphanhood: the understanding of Juanita" and "death is death." For both families, the fact that the women were pregnant had an important effect on the event of voluntary death. The construction of meaning that took place in both families followed two paths: differentiation and death itself; both can be resilient ways of coping with such a tragedy. Copyright © 2013 Asociación Colombiana de Psiquiatría. Publicado por Elsevier España. All rights reserved.

Identification of Suicide Risk Among Rural Youth: Implications for the Use of HEADSS

PubMed Central

Biddle, Virginia Sue; Sekula, L. Kathleen; Zoucha, Rick; Puskar, Kathryn R.

2009-01-01

Introduction Nurse practitioners have the power to detect suicide risk and prevent suicide, a problem plaguing rural areas of the United States. Suicide risk assessment can be completed using the HEADSS (Home, Education, Activities, Drug use and abuse, Sexual behavior, and Suicidality and depression) interview instrument. The purpose of this study was to determine if HEADSS is appropriate for guiding suicide risk assessment of rural adolescents. Method High school students in Southwestern Pennsylvania completed qualitative questions from the Child Behavior Checklist and Coping Response Inventory as part of the Intervention to Promote Mental Health in Rural Youth. Qualitative content analysis was performed. Results Prominent themes identified by participants included academic performance, relationships, dislikes about school, friends, death, mental health, and the future. Several minor themes concerned safety. Most known risk factors for suicide were concerns of participants. Discussion The expansion of HEADSS to include death and safety should be considered. The modified version—HEADDSSS— can be used to guide suicide risk assessment of youth in rural Pennsylvania, ensuring both thoroughness of assessment and safety. PMID:20417887

Oncology nurses’ communication challenges with patients and families: A qualitative study

PubMed Central

Banerjee, Smita C.; Manna, Ruth; Coyle, Nessa; Shen, Megan Johnson; Pehrson, Cassandra; Zaider, Talia; Hammonds, Stacey; Krueger, Carol A.; Parker, Patricia A.; Bylund, Carma L.

2016-01-01

The benefits of effective communication in an oncology setting are multifold and include the overall well-being of patients and health professionals, adherence to treatment regimens, psychological functioning, and improvements in quality of life. Nevertheless, there are substantial barriers and communication challenges reported by oncology nurses. This study was conducted to present a summary of communication challenges faced by oncology nurses. From November 2012 to March 2014, 121 inpatient nurses working in the oncology setting participated in an online pre-training qualitative survey that asked nurses to describe common communication challenges in communicating empathy and discussing death, dying, and end-of-life (EOL) goals of care. The results revealed six themes that describe the challenges in communicating empathically: dialectic tensions, burden of carrying bad news, lack of skills for providing empathy, perceived institutional barriers, challenging situations, and perceived dissimilarities between the nurse and the patient. The results for challenges in discussing death, dying and EOL goals of care revealed five themes: dialectic tensions, discussing specific topics related to EOL, lack of skills for providing empathy, patient/family characteristics, and perceived institutional barriers. This study emphasizes the need for institutions to provide communication skills training to their oncology nurses for navigating through challenging patient interactions. PMID:26278636

Oncology nurses' communication challenges with patients and families: A qualitative study.

PubMed

Banerjee, Smita C; Manna, Ruth; Coyle, Nessa; Shen, Megan Johnson; Pehrson, Cassandra; Zaider, Talia; Hammonds, Stacey; Krueger, Carol A; Parker, Patricia A; Bylund, Carma L

2016-01-01

The benefits of effective communication in an oncology setting are multifold and include the overall well-being of patients and health professionals, adherence to treatment regimens, psychological functioning, and improvements in quality of life. Nevertheless, there are substantial barriers and communication challenges reported by oncology nurses. This study was conducted to present a summary of communication challenges faced by oncology nurses. From November 2012 to March 2014, 121 inpatient nurses working in the oncology setting participated in an online pre-training qualitative survey that asked nurses to describe common communication challenges in communicating empathy and discussing death, dying, and end-of-life (EOL) goals of care. The results revealed six themes that describe the challenges in communicating empathically: dialectic tensions, burden of carrying bad news, lack of skills for providing empathy, perceived institutional barriers, challenging situations, and perceived dissimilarities between the nurse and the patient. The results for challenges in discussing death, dying and EOL goals of care revealed five themes: dialectic tensions, discussing specific topics related to EOL, lack of skills for providing empathy, patient/family characteristics, and perceived institutional barriers. This study emphasizes the need for institutions to provide communication skills training to their oncology nurses for navigating through challenging patient interactions. Copyright © 2015 Elsevier Ltd. All rights reserved.

Religio-cultural factors contributing to perinatal mortality and morbidity in mountain villages of Nepal: Implications for future healthcare provision

PubMed Central

Javanparast, Sara; Dasvarma, Gouranga; Newman, Lareen

2018-01-01

Objective and the context This paper examines the beliefs and experiences of women and their families in remote mountain villages of Nepal about perinatal sickness and death and considers the implications of these beliefs for future healthcare provision. Methods Two mountain villages were chosen for this qualitative study to provide diversity of context within a highly disadvantaged region. Individual in-depth interviews were conducted with 42 women of childbearing age and their family members, 15 health service providers, and 5 stakeholders. The data were analysed using a thematic analysis technique with a comprehensive coding process. Findings Three key themes emerged from the study: (1) ‘Everyone has gone through it’: perinatal death as a natural occurrence; (2) Dewata (God) as a factor in health and sickness: a cause and means to overcome sickness in mother and baby; and (3) Karma (Past deeds), Bhagya (Fate) or Lekhanta (Destiny): ways of rationalising perinatal deaths. Conclusion Religio-cultural interpretations underlie a fatalistic view among villagers in Nepal’s mountain communities about any possibility of preventing perinatal deaths. This perpetuates a silence around the issue, and results in severe under-reporting of ongoing high perinatal death rates and almost no reporting of stillbirths. The study identified a strong belief in religio-cultural determinants of perinatal death, which demonstrates that medical interventions alone are not sufficient to prevent these deaths and that broader social determinants which are highly significant in local life must be considered in policy making and programming. PMID:29544226

The Place of Faith for Consultant Obstetricians Following Stillbirth: A Qualitative Exploratory Study.

PubMed

Nuzum, Daniel; Meaney, Sarah; O'Donoghue, Keelin

2016-10-01

Stillbirth remains among the most challenging areas in obstetric practice. The objectives of this study were to explore the impact of stillbirth on the faith of obstetricians. Semi-structured in-depth qualitative interviews were conducted with obstetricians focusing on the impact of stillbirth on their faith. Data were analyzed using interpretative phenomenological analysis. Stillbirth was identified as one of the most difficult experiences, and most consultants were unable to engage with their personal beliefs when dealing with death at work. The major study themes were conflict of personal faith and incongruence between personal faith and professional practice. This study highlights a gap in how obstetricians see their own faith and feeling able to respond to the faith needs of bereaved parents. Participating obstetricians did not demonstrate that spirituality was an integrated part of their professional life.

Delivery, immediate newborn and cord care practices in Pemba Tanzania: a qualitative study of community, hospital staff and community level care providers for knowledge, attitudes, belief systems and practices

PubMed Central

2014-01-01

Background Deaths during the neonatal period account for almost two-thirds of all deaths in the first year of life and 40 percent of deaths before the age of five. Most of these deaths could be prevented through proven cost-effective interventions. Although there are some recent data from sub-Saharan Africa, but there is paucity of qualitative data from Zanzibar and cord care practices data from most of East Africa. We undertook a qualitative study in Pemba Island as a pilot to explore the attitudes, beliefs and practices of the community and health workers related to delivery, newborn and cord care with the potential to inform the main chlorhexidine (CHX) trial. Methods 80 in-depth interviews (IDI) and 11 focus group discussions (FGD) involving mothers, grandmothers, fathers, traditional birth attendants and other health service providers from the community were undertaken. All IDIs and FGDs were audio taped, transcribed and analyzed using ATLAS ti 6.2. Results Poor transportation, cost of delivery at hospitals, overcrowding and ill treatment by hospital staff are some of the obstacles for achieving higher institutional delivery. TBAs and health professionals understand the need of using sterilized equipments to reduce risk of infection to both mothers and their babies during delivery. Despite this knowledge, use of gloves during delivery and hand washing before delivery were seldom reported. Early initiation of breastfeeding and feeding colostrum was almost universal. Hospital personnel and trained TBAs understood the importance of keeping babies warm after birth and delayed baby’s first bath. The importance of cord care was well recognized in the community. Nearly all TBAs counseled the mothers to protect the cord from dust, flies and mosquitoes or any other kind of infections by covering it with cloth. There was consensus among respondents that CHX liquid cord cleansing could be successfully implemented in the community with appropriate education and awareness. Conclusion The willingness of community in accepting a CHX cord care practice was very high; the only requirement was that a MCH worker needs to do and demonstrate the use to the mother. Trial registration ClinicalTrials.gov: NCT01528852 PMID:24885689

A new approach on seismic mortality estimations based on average population density

NASA Astrophysics Data System (ADS)

Zhu, Xiaoxin; Sun, Baiqing; Jin, Zhanyong

2016-12-01

This study examines a new methodology to predict the final seismic mortality from earthquakes in China. Most studies established the association between mortality estimation and seismic intensity without considering the population density. In China, however, the data are not always available, especially when it comes to the very urgent relief situation in the disaster. And the population density varies greatly from region to region. This motivates the development of empirical models that use historical death data to provide the path to analyze the death tolls for earthquakes. The present paper employs the average population density to predict the final death tolls in earthquakes using a case-based reasoning model from realistic perspective. To validate the forecasting results, historical data from 18 large-scale earthquakes occurred in China are used to estimate the seismic morality of each case. And a typical earthquake case occurred in the northwest of Sichuan Province is employed to demonstrate the estimation of final death toll. The strength of this paper is that it provides scientific methods with overall forecast errors lower than 20 %, and opens the door for conducting final death forecasts with a qualitative and quantitative approach. Limitations and future research are also analyzed and discussed in the conclusion.

Usefulness of the admission electrocardiogram to predict long-term outcomes after non-ST-elevation acute coronary syndrome (from the FRISC II, ICTUS, and RITA-3 [FIR] Trials).

PubMed

Damman, Peter; Holmvang, Lene; Tijssen, Jan G P; Lagerqvist, Bo; Clayton, Tim C; Pocock, Stuart J; Windhausen, Fons; Hirsch, Alexander; Fox, Keith A A; Wallentin, Lars; de Winter, Robbert J

2012-01-01

The aim of this study was to evaluate the independent prognostic value of qualitative and quantitative admission electrocardiographic (ECG) analysis regarding long-term outcomes after non-ST-segment elevation acute coronary syndromes (NSTE-ACS). From the Fragmin and Fast Revascularization During Instability in Coronary Artery Disease (FRISC II), Invasive Versus Conservative Treatment in Unstable Coronary Syndromes (ICTUS), and Randomized Intervention Trial of Unstable Angina 3 (RITA-3) patient-pooled database, 5,420 patients with NSTE-ACS with qualitative ECG data, of whom 2,901 had quantitative data, were included in this analysis. The main outcome was 5-year cardiovascular death or myocardial infarction. Hazard ratios (HRs) were calculated with Cox regression models, and adjustments were made for established outcome predictors. The additional discriminative value was assessed with the category-less net reclassification improvement and integrated discrimination improvement indexes. In the 5,420 patients, the presence of ST-segment depression (≥1 mm; adjusted HR 1.43, 95% confidence interval [CI] 1.25 to 1.63) and left bundle branch block (adjusted HR 1.64, 95% CI 1.18 to 2.28) were independently associated with long-term cardiovascular death or myocardial infarction. Risk increases were short and long term. On quantitative ECG analysis, cumulative ST-segment depression (≥5 mm; adjusted HR 1.34, 95% CI 1.05 to 1.70), the presence of left bundle branch block (adjusted HR 2.15, 95% CI 1.36 to 3.40) or ≥6 leads with inverse T waves (adjusted HR 1.22, 95% CI 0.97 to 1.55) was independently associated with long-term outcomes. No interaction was observed with treatment strategy. No improvements in net reclassification improvement and integrated discrimination improvement were observed after the addition of quantitative characteristics to a model including qualitative characteristics. In conclusion, in the FRISC II, ICTUS, and RITA-3 NSTE-ACS patient-pooled data set, admission ECG characteristics provided long-term prognostic value for cardiovascular death or myocardial infarction. Quantitative ECG characteristics provided no incremental discrimination compared to qualitative data. Copyright © 2012 Elsevier Inc. All rights reserved.

“Without a mother”: caregivers and community members’ views about the impacts of maternal mortality on families in KwaZulu-Natal, South Africa

PubMed Central

2015-01-01

Background Maternal mortality in South Africa is high and a cause for concern especially because the bulk of deaths from maternal causes are preventable. One of the proposed reasons for persistently high maternal mortality is HIV which causes death both indirectly and directly. While there is some evidence for the impact of maternal death on children and families in South Africa, few studies have explored the impacts of maternal mortality on the well-being of the surviving infants, older children and family. This study provides qualitative insight into the consequences of maternal mortality for child and family well-being throughout the life-course. Methods This qualitative study was conducted in rural and peri-urban communities in Vulindlela, KwaZulu-Natal. The sample included 22 families directly affected by maternal mortality, 15 community stakeholders and 7 community focus group discussions. These provided unique and diverse perspectives about the causes, experiences and impacts of maternal mortality. Results and discussion Children left behind were primarily cared for by female family members, even where a father was alive and involved. The financial burden for care and children’s basic needs were largely met through government grants (direct and indirectly targeted at children) and/or through an obligation for the father or his family to assist. The repercussions of losing a mother were felt more by older children for whom it was harder for caregivers to provide educational supervision and emotional or psychological support. Respondents expressed concerns about adolescent’s educational attainment, general behaviour and particularly girl’s sexual risk. Conclusion These results illuminate the high costs to surviving children and their families of failing to reduce maternal mortality in South Africa. Ensuring social protection and community support is important for remaining children and families. Additional qualitative evidence is needed to explore differential effects for children by gender and to guide future research and inform policies and programs aimed at supporting maternal orphans and other vulnerable children throughout their development. PMID:26001160

Disenfranchised grief and nonfinite loss as experienced by the families of death row inmates.

PubMed

Jones, Sandra J; Beck, Elizabeth

The families of death row inmates experience grief and loss issues that have been neglected by scholars and clinicians alike. The issues found in this population are unique and require our understanding. The present study uses the concepts of disenfranchised grief and nonfinite loss to uncover the pain experienced by the children and other family members who have a loved one on death row. Kenneth Doka's (1989) concept of disenfranchised grief is utilized to bring attention to the ways in which the circumstances surrounding an execution leave the family members of those condemned to death outside of the "grieving rules" that exist in the United States. Family members are disenfranchised from their grief, as society does not socially validate their pain. The loss that they feel is also nonfinite (Bruce & Schultz, 2001) in that it is continuous and denies the families all of the hopes, dreams, and expectations that they had for their loved one who now sits on death row. The qualitative interview method was utilized by the authors of this study to gather data from 26 family members of death row inmates who are incarcerated along the East Coast of the United States. The reactions of this group of family members are varied and complex, yet they include the following common responses: social isolation due to stigma and their own feelings of criminalization, intensified family conflict between family members who grieve differently from one another, diminished self-esteem, shame, diffused and specific feelings of guilt, and a chronic state of despair. This study explores virtually untapped terrain. An examination of the microlevel effects of the death penalty on families provides insight in to the area of death and dying, especially as it is related to disenfranchised loss and nonfinite grief. In addition, this study provides insight into the death penalty and its effects.

The Mystique of Entropy.

ERIC Educational Resources Information Center

Kyle, Benjamin G.

1988-01-01

Illustrates qualitative and metaphoric applications of entropy in the areas of cosmology, the birth and death of the universe and time; life and evolution; literature and art; and social science. (RT)

Clergy Views on a Good Versus a Poor Death: Ministry to the Terminally Ill

PubMed Central

Cooke, Amanda; Resmini, Jonathan; Garinther, Alexander; Chow, Vinca; Quiñones, Rebecca; Noveroske, Sarah; Baccari, Andrew; Smith, Patrick T.; Peteet, John; Balboni, Tracy A.; Balboni, Michael J.

2015-01-01

Abstract Background: Clergy are often important sources of guidance for patients and family members making medical decisions at the end-of-life (EOL). Previous research revealed spiritual support by religious communities led to more aggressive care at the EOL, particularly among minority patients. Understanding this phenomenon is important to help address disparities in EOL care. Objective: The study objective was to explore and describe clergy perspectives regarding “good” versus “poor” death within the participant's spiritual tradition. Methods: This was a qualitative, descriptive study. Community clergy from various spiritual backgrounds, geographical locations within the United States, and races/ethnicities were recruited. Participants included 35 clergy who participated in one-on-one interviews (N = 14) and two focus groups (N = 21). Semistructured interviews explored clergy viewpoints on factors related to a “good death.” Principles of grounded theory were used to identify a final set of themes and subthemes. Results: A good death was characterized by wholeness and certainty and emphasized being in relationship with God. Conversely, a “poor death” was characterized by separation, doubt, and isolation. Clergy identified four primary determinants of good versus poor death: dignity, preparedness, physical suffering, and community. Participants expressed appreciation for contextual factors that affect the death experience; some described a “middle death,” or one that integrates both positive and negative elements. Location of death was not viewed as a significant contributing factor. Conclusions: Understanding clergy perspectives regarding quality of death can provide important insights to help improve EOL care, particularly for patients highly engaged with faith communities. These findings can inform initiatives to foster productive relationships between clergy, clinicians, and congregants and reduce health disparities. PMID:26317801

Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study.

PubMed

Clayton, Josephine M; Butow, Phyllis N; Arnold, Robert M; Tattersall, Martin H N

2005-08-01

Discussing end-of-life issues is of key importance to terminally ill cancer patients and their families, and a challenging topic for both health professionals and patients/carers. There is a lack of research evidence in the literature to guide clinical practice. The objective of this study was to explore the optimal content and phrasing of information when discussing the dying process and end-of-life issues with terminally ill cancer patients and their carers. We conducted focus groups and individual interviews with 19 palliative care patients and 24 carers from three palliative care services in Sydney, and 22 palliative care health professionals from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants' narratives were analysed using qualitative methodology. Distinct content areas emerged for discussing end-of-life issues: treatment decisions at the end-of-life; potential future symptoms; preferences for place of death; the process of dying; what needs to be done immediately after death; and existential issues. When discussing the process of dying participants recommended: exploring the persons' fears about dying and dispelling myths; describing the final days and the likely unconscious period; and the reduced need for food and fluids. Many participants identified the dilemma regarding whether to discuss potential complications around the time of death. This paper provides strategies, words and phrases which may inform discussions about the process of dying and end-of-life issues. Further research is needed to determine the generalizability of these findings.

Between life and death: women's experiences of coming close to death, and surviving a severe postpartum haemorrhage and emergency hysterectomy.

PubMed

Elmir, Rakime; Schmied, Virginia; Jackson, Debra; Wilkes, Lesley

2012-04-01

to describe women's experiences of having an emergency hysterectomy following a severe postpartum haemorrhage. a qualitative research approach was used to guide this study. Data were collected through semi-structured, tape recorded face to face, email internet and telephone interviews. three States in Australia: New South Wales, Victoria and Western Australia. twenty-one Australian women who experienced a severe post partum followed by an emergency hysterectomy participated in the study. The median age of participants at time of interview was 42 years and the median time since having the hysterectomy was four years. a process of inductive analysis revealed the major theme, 'between life and death' and three sub-themes, 'being close to death: bleeding and fear', 'having a hysterectomy: devastation and realisation' and 'reliving the trauma: flashbacks and memories'. formulating a plan of care for women identifiably at risk of PPH and ensuring appropriate follow-up counselling is made, is key to help reduce the emotional and psychological symptoms experienced by these women in the aftermath of severe postpartum haemorrhage and hysterectomy. Copyright © 2011 Elsevier Ltd. All rights reserved.

The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis.

PubMed

Lord, Ailsa J; Field, Stephen; Smith, Ian C

2017-11-01

Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement. Staff in intellectual disability services can play a valuable role in improving understanding of these issues in those they support. This qualitative metasynthesis aimed to understand the experiences of staff supporting adults with intellectual disabilities with issues of death, dying and bereavement. Thirteen papers were identified following a systematic review of six databases. Three themes were developed following a lines-of-argument synthesis: (i) talking about death is hard: negotiating the uncertainty in death, dying and bereavement; (ii) the commitment to promoting a "good death"; and (iii) the grief behind the professional mask. "A cautious silence: The taboo of death" was an overarching theme. A more open culture around issues of death, dying and bereavement in intellectual disability settings is essential and could be promoted through staff training and support. © 2017 John Wiley & Sons Ltd.

Lived Experiences of Iranian Nurses Caring for Brain Death Organ Donor Patients: Caring as “Halo of Ambiguity and Doubt”

PubMed Central

Keshtkaran, Zahra; Sharif, Farkhondeh; Navab, Elham; Gholamzadeh, Sakineh

2016-01-01

Background: Brain death is a concept in which its criteria have been expressed as documentations in Harvard Committee of Brain Death. The various perceptions of caregiver nurses for brain death patients may have effect on the chance of converting potential donors into actual organ donors. Objective: The present study has been conducted in order to perceive the experiences of nurses in care-giving to the brain death of organ donor patients. Methods: This qualitative study was carried out by means of Heidegger’s hermeneutic phenomenology. Eight nurses who have been working in ICU were interviewed. The semi-structured interviews were recorded by a tape-recorder and the given texts were transcribed and the analyses were done by Van-Mannen methodology and (thematic) analysis. Results: One of the foremost themes extracted from this study included ‘Halo of ambiguity and doubt’ that comprised of two sub-themes of ‘having unreasonable hope’ and ‘Conservative acceptance of brain death’. The unreasonable hope included lack of trust (uncertainty) in diagnosis and verification of brain death, passing through denial wall, and avoidance from explicit and direct disclosure of brain death in patients’ family. In this investigation, the nurses were involved in a type of ambiguity and doubt in care-giving to the potentially brain death of organ donor patients, which were also evident in their interaction with patients’ family and for this reason, they did not definitely announce the brain death and so far they hoped for treatment of the given patient. Such confusion and hesitance both caused annoyance of nurses and strengthening the denial of patients’ family to be exposed to death. Conclusion: The results of this study reveal the fundamental perceived care-giving of brain death in organ donor patients and led to developing some strategies to improve care-giving and achievement in donation of the given organ and necessity for presentation of educational and supportive services for nurses might become more evident than ever. PMID:26925919

Perceptions of Iranian Female Drug Users Toward HIV Testing: A Qualitative Content Analysis.

PubMed

Jamshidimanesh, Mansoureh; Khoie, Effat Merghati; Mousavi, Seyed Abbas; Keramat, Afsaneh; Emamian, Mohammad Hassan

Drug-dependent women are the vulnerable population deprived of access to health services and also have particular relevance to public health perspective because they are important bridge population for driving HIV/AIDS epidemic. This qualitative study aimed to explore the perception of drug-dependent women regarding HIV testing. In this qualitative study, we approached 23 women with substance use disorders in 2 of the selected drop-in centers in the south Tehran. Focus group discussion, face-to-face semistructured interviews, and field notes were used to collect the data. Qualitative content analysis was used to extract the explanatory model of women's perceptions about HIV testing. Four main themes emerged from the data: forgotten health during use, having misconception, and sharing of sexual partner in secrecy and concerns. Seven subthemes were extracted, including not being sex worker, point of ruin, voluntary selection and concerns about fear of abandonment and fear of loss and death, double concern, and future of children. Beliefs and values of drug-dependent women can be positive points leading them to do an HIV test, and misconceptions of these women would be corrected by using safe behavioral skills training.

Medical students writing on death, dying and palliative care: a qualitative analysis of reflective essays.

PubMed

Boland, Jason W; Dikomitis, Lisa; Gadoud, Amy

2016-12-01

Medical students and doctors are becoming better prepared to care for patients with palliative care needs and support patients at the end of life. This preparation needs to start at medical school. To assess how medical students learn about death, dying and palliative care during a clinical placement using reflective essays and to provide insights to improve medical education about end-of-life care and/or palliative care. Qualitative study in which all reflective essays written by third-year medical students in 1 year from a UK medical school were searched electronically for those that included 'death', 'dying' and 'palliative care'. The anonymised data were managed using QSR NVivo 10 software, and a systematic analysis was conducted in three distinct phases: (1) open coding; (2) axial coding and (3) selective coding. Ethical approval was received. 54 essays met the inclusion criteria from 241 essays screened for the terms 'death', 'dying' or 'palliative'; 22 students gave consent for participation and their 24 essays were included. Saturation of themes was reached. Three overarching themes were identified: emotions, empathy and experiential and reflective learning. Students emphasised trying to develop a balance between showing empathy and their emotional state. Students learnt a lot from clinical encounters and watching doctors manage difficult situations, as well as from their refection during and after the experience. Reflective essays give insights into the way students learn about death, dying and palliative care and how it affects them personally as well as the preparation that is needed to be better equipped to deal with these kinds of experiences. Analysis of the essays enabled the proposal of new strategies to help make them more effective learning tools and to optimise students' learning from a palliative care attachment. 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/.

You have no Choice but to go on: How Physicians and Midwives in Ghana Cope with High Rates of Perinatal Death.

PubMed

Petrites, Alissa D; Mullan, Patricia; Spangenberg, Kathryn; Gold, Katherine J

2016-07-01

Objectives Healthcare providers in low-resource settings confront high rates of perinatal mortality. How providers cope with such challenges can affect their well-being and patient care; we therefore sought to understand how physicians and midwives make sense of and cope with these deaths. Methods We conducted semi-structured interviews with midwives, obstetrician-gynecologists, pediatricians and trainee physicians at a large teaching hospital in Kumasi, Ghana. Interviews focused on participants' coping strategies surrounding perinatal death. We identified themes from interview transcripts using qualitative content analysis. Results Thirty-six participants completed the study. Themes from the transcripts revealed a continuum of control/self-efficacy and engagement with the deaths. Providers demonstrated a commitment to push on with their work and provide the best care possible. In select cases, they described the transformative power of attitude and sought to be agents of change. Conclusions Physicians and midwives in a low-resource country in sub-Saharan Africa showed remarkable resiliency in coping with perinatal death. Still, future work should focus on training clinicians in coping and strengthening their self-efficacy and engagement.

Intergenerational impacts of maternal mortality: Qualitative findings from rural Malawi

PubMed Central

2015-01-01

Background Maternal mortality, although largely preventable, remains unacceptably high in developing countries such as Malawi and creates a number of intergenerational impacts. Few studies have investigated the far-reaching impacts of maternal death beyond infant survival. This study demonstrates the short- and long-term impacts of maternal death on children, families, and the community in order to raise awareness of the true costs of maternal mortality and poor maternal health care in Neno, a rural and remote district in Malawi. Methods Qualitative in-depth interviews were conducted to assess the impact of maternal mortality on child, family, and community well-being. We conducted 20 key informant interviews, 20 stakeholder interviews, and six sex-stratified focus group discussions in the seven health centers that cover the district. Transcripts were translated, coded, and analyzed in NVivo 10. Results Participants noted a number of far-reaching impacts on orphaned children, their new caretakers, and extended families following a maternal death. Female relatives typically took on caregiving responsibilities for orphaned children, regardless of the accompanying financial hardship and frequent lack of familial or governmental support. Maternal death exacerbated children’s vulnerabilities to long-term health and social impacts related to nutrition, education, employment, early partnership, pregnancy, and caretaking. Impacts were particularly salient for female children who were often forced to take on the majority of the household responsibilities. Participants cited a number of barriers to accessing quality child health care or support services, and many were unaware of programming available to assist them in raising orphaned children or how to access these services. Conclusions In order to both reduce preventable maternal mortality and diminish the impacts on children, extended families, and communities, our findings highlight the importance of financing and implementing universal access to emergency obstetric and neonatal care, and contraception, as well as social protection programs, including among remote populations. PMID:26000733

Parents' experiences and expectations of care in pregnancy after stillbirth or neonatal death: a metasynthesis.

PubMed

Mills, T A; Ricklesford, C; Cooke, A; Heazell, A E P; Whitworth, M; Lavender, T

2014-07-01

Pregnancy after perinatal death is characterised by elevated stress and anxiety, increasing the risk of adverse short-term and long-term outcomes. This metasynthesis aimed to improve understanding of parents' experiences of maternity care in pregnancy after stillbirth or neonatal death. Six electronic databases were searched using predefined search terms. English language studies using qualitative methods to explore the experiences of parents in pregnancy after perinatal loss, were included subject to quality appraisal framework. Searches were initiated in December 2011 and finalised in March 2013. Studies were synthesised using an interpretive approach derived from meta-ethnography. Fourteen studies were included in the synthesis, graded A (no or few flaws, high trustworthiness; n = 5), B (some flaws, unlikely to affect trustworthiness; n = 5) and C (some flaws, possible impact on trustworthiness; n = 4). Three main themes were identified; co-existence of emotions, helpful and unhelpful coping activities and seeking reasssurance through interactions. Parents' experiences of pregnancy are profoundly altered by previous perinatal death; conflicted emotions, extreme anxiety, isolation and a lack of trust in a good outcome are commonly reported. Emotional and psychological support improves parents' experiences of subsequent pregnancy, but the absence of an evidence base may limit consistent delivery of optimal care within current services. © 2014 Royal College of Obstetricians and Gynaecologists.

Why are babies born before arrival at health facilities in King Sabata Dalindyebo Local Municipality, Eastern Cape, South Africa? A qualitative study

PubMed Central

Alabi, Adeyinka A.; Wright, Graham; Ntsaba, Mohlomi J.

2015-01-01

Introduction Babies born before arrival at a health facility have a higher risk of neonatal death and their mothers a higher risk of maternal death compared with those born in-facility. The study explored the reasons for mothers giving birth before arrival (BBA) at health facilities and their experiences of BBA. Methods A qualitative research design was used. Individual and focus group interviews of BBA mothers and of nurses were undertaken at a community health centre and a district hospital in King Sabata Dalindyebo Local Municipality. Results Reasons for BBA included a lack of transport, a lack of security at night that deterred mothers from travelling, precipitate labour, failure to identify true labour, and a lack of waiting areas at health facilities. Traditional and cultural beliefs favouring childbirth at home and nurses’ negative attitudes during antenatal care and labour influenced mothers to go to health facilities when in advanced labour. Mothers were aware of possible complications associated with BBA. Conclusion Socio-economic, individual, cultural and health system factors influence the occurrence of BBA. Relevant parties need to address these factors to ensure that all babies in the King Sabata Dalindyebo Local Municipality are delivered within designated health facilities. PMID:26842514

The impact of ART scale upon health workers: evidence from two South African districts.

PubMed

George, G; Atujuna, M; Gentile, J; Quinlan, T; Schmidt, E; Tobi, P; Renton, A

2010-01-01

This study explores the effects of antiretroviral treatment (ART) programmes on health-care human resources in South Africa. The study included two parts, a questionnaire-based survey of 269 health workers published earlier and a qualitative study of 21 purposively selected health practitioners involved in ART scale up. Contrary to what has been presented in literature, our survey showed that health workers in ART programmes experienced higher levels of morale, lower stress, lower sickness absenteeism and higher levels of job satisfaction. This paper uses qualitative data to provide insights into the working environment of ART workers and examines some possible explanations for our survey findings. The key factors that contribute to the different perception of working environment by ART workers identified in this study include bringing hope to patients, delaying deaths, acquiring training and the ability to better manage and monitor the disease.

The co-existence of life and death for the perioperative nurse.

PubMed

Perrin, Karen; Jones, Barbara; Winkelman, Cecelia

2013-10-01

Death and life co-exist in organ procurement surgery; untimely death for one provides hope for continued life for others. Drawing from interactionist theory, the impact of personal and environmental forces and functions specific to organ procurement surgery were examined. Seven nurses (6 women, 1 man aged 34-58 years) were provided with an opportunity to describe their experiences. Three core themes emerged from the qualitative analysis of the interviews: existential issues, coping strategies, and support for each other. Nurses spoke of ways in which they contribute to this challenging work and draw on inner resources.

Communication about palliative care: A phenomenological study exploring patient views and responses to its discussion.

PubMed

Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer

2018-01-01

Communication about palliative care is a complex task frequently delayed until otherwise unavoidable. There is a need for discussion of palliative care to be viewed as a distinct communication task that is guided by empirical data. However, little is known of patient views and responses to these encounters. To explore patient views surrounding communication about palliative care and their responses to its discussion. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Three major themes evolved. (1) Death as unspeakable: death was expressed using only implicit, ambiguous or technical terms and perceived to be outside the parameters of medical interactions. (2) Palliative care as a euphemism for death: the term 'palliative care' was perceived to be used by health professionals as a tool to talk about dying and understood by patients as a euphemism for death. (3) Palliative care as unspeakable: 'palliative care' was personified by patients to mean not just death, but my death, in turn, also becoming unspeakable. This study provides important new patient insights and responses to the discussion of palliative care. Results demonstrate that the task of discussing palliative care remains complex, difficult and limited by our language. Greater consistency, sensitivity and sophistication are required when talking about palliative care to patients who may benefit from this care.

Coping With Existential and Emotional Challenges: Development and Validation of the Self-Competence in Death Work Scale.

PubMed

Chan, Wallace Chi Ho; Tin, Agnes Fong; Wong, Karen Lok Yi

2015-07-01

Palliative care professionals often are confronted by death in their work. They may experience challenges to self, such as aroused emotions and queries about life's meaningfulness. Assessing their level of "self-competence" in coping with these challenges is crucial in understanding their needs in death work. This study aims to develop and validate the Self-Competence in Death Work Scale (SC-DWS). Development of this scale involved three steps: 1) items generated from a qualitative study with palliative care professionals, (2) expert panel review, and (3) pilot test. Analysis was conducted to explore the factor structure and examine the reliability and validity of the scale. Helping professionals involved in death work were recruited to complete questionnaires comprising the SC-DWS and other scales. A total of 151 participants were recruited. Both one-factor and two-factor structures were found. Emotional and existential coping were identified as subscales in the two-factor structure. Correlations of the whole scale and subscales with measures of death attitudes, meaning in life, burnout and depression provided evidence for the construct validity. Discriminative validity was supported by showing participants with bereavement experience and longer experience in the profession and death work possessed a significantly higher level of self-competence. Reliability analyses showed that the entire scale and subscales were internally consistent. The SC-DWS was found to be valid and reliable. This scale may facilitate helping professionals' understanding of their self-competence in death work, so appropriate professional support and training may be obtained. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Intimate Partner Homicide and Corollary Victims in 16 States: National Violent Death Reporting System, 2003–2009

PubMed Central

Fowler, Katherine A.; Niolon, Phyllis H.

2014-01-01

Objectives. We estimated the frequency and examined the characteristics of intimate partner homicide and related deaths in 16 US states participating in the National Violent Death Reporting System (NVDRS), a state-based surveillance system. Methods. We used a combination of quantitative and qualitative methods to analyze NVDRS data from 2003 to 2009. We selected deaths linked to intimate partner violence for analysis. Results. Our sample comprised 4470 persons who died in the course of 3350 intimate partner violence–related homicide incidents. Intimate partners and corollary victims represented 80% and 20% of homicide victims, respectively. Corollary homicide victims included family members, new intimate partners, friends, acquaintances, police officers, and strangers. Conclusions. Our findings, from the first multiple-state study of intimate partner homicide and corollary homicides, demonstrate that the burden of intimate partner violence extends beyond the couple involved. Systems (e.g., criminal justice, medical care, and shelters) whose representatives routinely interact with victims of intimate partner violence can help assess the potential for lethal danger, which may prevent intimate partner and corollary victims from harm. PMID:24432943

Intimate partner homicide and corollary victims in 16 states: National Violent Death Reporting System, 2003-2009.

PubMed

Smith, Sharon G; Fowler, Katherine A; Niolon, Phyllis H

2014-03-01

We estimated the frequency and examined the characteristics of intimate partner homicide and related deaths in 16 US states participating in the National Violent Death Reporting System (NVDRS), a state-based surveillance system. We used a combination of quantitative and qualitative methods to analyze NVDRS data from 2003 to 2009. We selected deaths linked to intimate partner violence for analysis. Our sample comprised 4470 persons who died in the course of 3350 intimate partner violence-related homicide incidents. Intimate partners and corollary victims represented 80% and 20% of homicide victims, respectively. Corollary homicide victims included family members, new intimate partners, friends, acquaintances, police officers, and strangers. Our findings, from the first multiple-state study of intimate partner homicide and corollary homicides, demonstrate that the burden of intimate partner violence extends beyond the couple involved. Systems (e.g., criminal justice, medical care, and shelters) whose representatives routinely interact with victims of intimate partner violence can help assess the potential for lethal danger, which may prevent intimate partner and corollary victims from harm.

Drama as a pedagogical tool for practicing death notification-experiences from Swedish medical students.

PubMed

Nordström, Anna; Fjellman-Wiklund, Anncristine; Grysell, Tomas

2011-09-28

One of the toughest tasks in any profession is the deliverance of death notification. Marathon Death is an exercise conducted during the fourth year of medical school in northern Sweden to prepare students for this responsibility. The exercise is designed to enable students to gain insight into the emotional and formal procedure of delivering death notifications. The exercise is inspired by Augusto Boal's work around Forum Theatre and is analyzed using video playback. The aim of the study was to explore reflections, attitudes and ideas toward training in delivering death notifications among medical students who participate in the Marathon Death exercise based on forum play. After participation in the Marathon Death exercise, students completed semi-structured interviews. The transcribed interviews were analyzed using the principles of qualitative content analysis including a deductive content analysis approach with a structured matrix based on Bloom's taxonomy domains. The Marathon Death exercise was perceived as emotionally loaded, realistic and valuable for the future professional role as a physician. The deliverance of a death notification to the next of kin that a loved one has died was perceived as difficult. The exercise conjured emotions such as positive expectations and sheer anxiety. Students perceived participation in the exercise as an important learning experience, discovering that they had the capacity to manage such a difficult situation. The feedback from the video playback of the exercise and the feedback from fellow students and teachers enhanced the learning experience. The exercise, Marathon Death, based on forum play with video playback is a useful pedagogical tool that enables students to practice delivering death notification. The ability to practice under realistic conditions contributes to reinforce students in preparation for their future professional role.

Understanding patients’ experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography

PubMed Central

Rodríguez-Prat, Andrea; Balaguer, Albert; Booth, Andrew; Monforte-Royo, Cristina

2017-01-01

Objectives Patients with advanced disease sometimes express a wish to hasten death (WTHD). In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon. Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide. The aim of the present study was to update our previous review by including new research and to conduct a new analysis of available data on this topic. Setting Eligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA. Participants Studies of patients with life-threatening conditions that had expressed the WTHD. Design The search strategy combined subject terms with free-text searching of PubMed MEDLINE, Web of Science, CINAHL and PsycInfo. The qualitative synthesis followed the methodology described by Noblit and Hare, using the ‘adding to and revising the original’ model for updating a meta-ethnography, proposed by France et al. Quality assessment was done using the Critical Appraisal Skills Programme checklist. Results 14 studies involving 255 participants with life-threatening illnesses were identified. Five themes emerged from the analysis: suffering (overarching theme), reasons for and meanings and functions of the WTHD and the experience of a timeline towards dying and death. In the context of advanced disease, the WTHD emerges as a reaction to physical, psychological, social and existential suffering, all of which impacts on the patient’s sense of self, of dignity and meaning in life. Conclusions The WTHD can hold different meanings for each individual—serving functions other than to communicate a genuine wish to die. Understanding the reasons for, and meanings and functions of, the WTHD is crucial for drawing up and implementing care plans to meet the needs of individual patients. PMID:28965095

A qualitative study about experiences and emotions of emergency medical technicians and out-of-hospital emergency nurses after performing cardiopulmonary resuscitation resulting in death.

PubMed

Fernández-Aedo, I; Pérez-Urdiales, I; Unanue-Arza, S; García-Azpiazu, Z; Ballesteros-Peña, S

To explore the experiences, emotions and coping skills among emergency medical technicians and emergency nurses after performing out-of-hospital cardiopulmonary resuscitation manoeuvres resulting in death. An exploratory qualitative research was performed. Seven emergency medical technicians and six emergency nurses were selected by non-probability sampling among emergency medical system workers. The meetings took place up to information saturation, achieved after six individual interviews and a focal group. The meetings were then transcribed and a manual and inductive analysis of the contents performed. After a failed resuscitation several short and long-term reactions appear. They can be negatives, such as sadness or uncertainty, or positives, such as the feeling of having done everything possible to save the patient's life. Emotional stress increases when ambulance staff have to talk with the deceased's family or when the patient is a child. The workers don't know of a coping strategy other than talking about their emotions with their colleagues. Death after a failed resuscitation can be viewed as a traumatic experience for rescuers. Being in contact with the suffering of others is an emotional, stress-generating factor with direct repercussions on the working and personal lives of emergency staff. Nevertheless, structured coping techniques are not common among those professionals. Copyright © 2016 Sociedad Española de Enfermería Intensiva y Unidades Coronarias (SEEIUC). Publicado por Elsevier España, S.L.U. All rights reserved.

Finding privacy from a public death: a qualitative exploration of how a dedicated space for end-of-life care in an acute hospital impacts on dying patients and their families.

PubMed

Slatyer, Susan; Pienaar, Catherine; Williams, Anne M; Proctor, Karen; Hewitt, Laura

2015-08-01

To explore the experiences and perceptions of hospital staff caring for dying patients in a dedicated patient/family room (named Lotus Room). Dying in hospital is a common outcome for people across the world. However, noise and activity in acute environments present barriers to quality end-of-life care. This is of concern because care provided to dying patients has been shown to affect both the patients and the bereaved families. A qualitative descriptive approach was used. Semi-structured interviews were conducted with 17 multidisciplinary staff and seven families provided information through an investigator-developed instrument. Qualitative data analysis generated three categories describing: Dying in an hospital; The Lotus Room; and the Outcomes for patients and families. The Lotus Room was seen as a large, private and, ultimately, safe space for patients and families within the public hospital environment. Family feedback supported staff perspectives that the Lotus Room facilitated family presence and communication. The privacy afforded by the Lotus Room within this acute hospital provided benefits for the dying patients and grieving families. Improved outcomes included a peaceful death for patients, which may have assisted the family with their bereavement. This study provides evidence of how the physical environment can address well-established barriers to quality end-of-life care in acute hospitals. © 2015 John Wiley & Sons Ltd.

Grief related to the experience of being the sibling of a child with cancer.

PubMed

Jenholt Nolbris, Margaretha; Enskär, Karin; Hellström, Anna-Lena

2014-01-01

Few studies have described the well siblings' experience of grief when a brother or sister is treated for cancer. Knowing how sibling grief is expressed will guide clinician and family efforts to provide appropriate support. The aim of this study was to describe siblings' reports of grief related to the experience of having a brother or sister with cancer. A qualitative descriptive method was chosen based on open-ended interviews with 29 siblings aged 8 to 24 years. Qualitative content analysis was applied to the interview data. Four categories of grief were identified: anticipatory grief after receiving information about the cancer diagnosis, grief and concern about the ill sibling's loss of a normal life, grief about being unimportant and forgotten in the family, and grief that continues after the sibling's death as a kind of bond. Despite variations in age and gender among participating siblings, their thoughts were similar. Grief was experienced differently from the time of the diagnosis onward, in the form of concerns related to the illness and situation of the ill sibling. Grief related to sibling bonds remained after death. This study recommends offering siblings realistic information about their ill sibling and support for them in their situation from diagnosis and continuously thereafter. To meet the needs of well siblings, it is necessary to ask the siblings about their thoughts and discuss with them their emotions and worries.

[Myths about organ donation on health personnel, potential recipients and relatives of potential donors in a peruvian hospital: a qualitative study].

PubMed

Gómez-Rázuri, Katherine; Ballena-López, José; León-Jiménez, Franco

2016-03-01

To explore the myths regarding organ donation at a national hospital in Lambayeque, Peru during 2014. A qualitative-phenomenological study was performed using 24 unstructured in-depht interview of health personnel, potential recipients and relatives of potential donors. Sampling was intentional opinion-based, completed by theoretical saturation in each group. An interview guide was used, which was assessed by five experts, and data triangulation was performed. Twenty-three interviewees (95,8%) reported a favorable attitude towards organ donation. On their National Identification Document, thirteen (54,2%) had marked "no" for donation. The myths were: age or illness can preclude donation; that the recipient may experience the donor's behaviours and lives in it; brain death is undestood as the immobility of the body and a reversible state; religions do not accept organ donation because it affects physical integrity and resurrection; and that there are preferences on the organ donor waiting list and that organ trafficking taxes place. Myths explored in this study involved religious, socio-cultural, psychological and ethical misperceptions. The apparent lack of knowledge of the brain death diagnosis is the starting point of the donation process. Therefore, the presence of a hospital coordinator, the role of spiritual leaders and the correct information provided by media would be key parts to dispell these myths.

Effect of circulatory assistance on premature death and long-term prognosis.

PubMed

Sánchez Lázaro, I J; Almenar Bonet, L; Martínez-Dolz, L; Moro López, J; Rueda Soriano, J; Arnau Vives, M A; Buendía Fuentes, F; Ortiz Martínez, V; Cano Pérez, O; Sánchez Soriano, R; Salvador Sanz, A

2008-11-01

Patients undergoing urgent heart transplantation (HT) have a poorer prognosis and more long-term complications. The objective of this study was to compare the preoperative course in patients undergoing urgent HT according to the need for preoperative intra-aortic balloon counterpulsation (IABP). We studied 102 consecutive patients including 23 patients with IABP who underwent urgent HT between January 2000 and September 2006. We excluded patients who received combination transplants, those who underwent repeat HT, and pediatric patients who underwent HT. The statistical methods used were the t test for quantitative variables and the chi(2) test for qualitative variables. A logistic regression model was constructed to assess the possible relationship between IABP and other variables on premature death within 30 days after HT. Mean (SD) patient-age was 50 (10) years. No significant differences were observed in baseline characteristics between the IABP and the non-IAPB groups. The IABP patient group had higher rates of acute graft failure (45.5% vs 35.4%; P = .46) and premature death (18.8% vs 14.8%; P = .67) and shorter long-term survival (40.6 [34.9] vs 54.5 [43.7] mo; P = .30). Multivariate analysis demonstrated no association between the need for IABP and increased frequency of premature death. Use of IABP is not associated with premature or late death. We recommend use of IABP in patients with acute decompensated heart failure to stabilize them before HT.

Safe sleep practices and sudden infant death syndrome risk reduction: NICU and well-baby nursery graduates.

PubMed

Fowler, Aja J; Evans, Patricia W; Etchegaray, Jason M; Ottenbacher, Allison; Arnold, Cody

2013-11-01

Our primary objective was to compare parents of infants cared for in newborn intensive care units (NICUs) and infants cared for in well-baby ("general") nurseries with regard to knowledge and practice of safe sleep practices/sudden infant death syndrome risk reduction measures and guidelines. Our secondary objective was to obtain qualitative data regarding reasons for noncompliance in both populations. Sixty participants (30 from each population) completed our survey measuring safe sleep knowledge and practice. Parents of NICU infants reported using 2 safe sleep practices-(a) always placing baby in crib to sleep and (b) always placing baby on back to sleep-significantly more frequently than parents of well infants. Additional findings and implications for future studies are discussed.

Intentions in wishes to die: analysis and a typology – A report of 30 qualitative case studies of terminally ill cancer patients in palliative care

PubMed Central

Ohnsorge, K; Gudat, H; Rehmann-Sutter, C

2014-01-01

Objective To investigate the variations in and intentions of wishes to die (WTD) of palliative care cancer patients. Methods Thirty terminally ill cancer patients, their caregivers and relatives in a hospice, an oncology palliative care ward of a general hospital, and an outpatient palliative care service. 116 semistructured qualitative interviews analyzed by a combined approach using Grounded Theory and Interpretive Phenomenological Analysis. Results A WTD is dynamic and interactive. Its subjective phenomenology can be described by three aspects: intentions, motivations, and interactions. In this article, we present a typology of the possible intentions. We identified nine different (ideal) types of intentions that WTD statements might have, other than wishing to live and accepting death. Many WTD statements do not imply a desire to hasten death. The intentions of statements differ according to whether a WTD is related to as imaginary or as an action. Often WTD statements contain several partial wishes, which can be in tension with each other and form a dynamic, sometimes unstable equilibrium. Conclusions Terminally ill persons' WTD statements differ in their intention, and deeper knowledge about these differences is ethically relevant. PMID:24706488

Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit.

PubMed

Meert, Kathleen L; Eggly, Susan; Pollack, Murray; Anand, K J S; Zimmerman, Jerry; Carcillo, Joseph; Newth, Christopher J L; Dean, J Michael; Willson, Douglas F; Nicholson, Carol

2008-01-01

Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians communicate more effectively. Our objective is to describe parents' perceptions of their conversations with physicians regarding their child's terminal illness and death in the pediatric intensive care unit (PICU). A secondary analysis of a qualitative interview study. Six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Fifty-six parents of 48 children who died in the PICU 3-12 months before the study. Parents participated in audio recorded semistructured telephone interviews. Interviews were analyzed using established qualitative methods. Of the 56 parents interviewed, 40 (71%) wanted to provide feedback on the way information about their child's terminal illness and death was communicated by PICU physicians. The most common communication issue identified by parents was the physicians' availability and attentiveness to their informational needs. Other communication issues included honesty and comprehensiveness of information, affect with which information was provided, withholding of information, provision of false hope, complexity of vocabulary, pace of providing information, contradictory information, and physicians' body language. The way bad news is discussed by physicians is extremely important to most parents. Parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend. Withholding prognostic information from parents often leads to false hopes and feelings of anger, betrayal, and distrust. Future research is needed to investigate whether the way bad news is discussed influences psychological adjustment and family functioning among bereaved parents.

Healthcare professionals' perspectives on delivering end-of-life care within acute hospital trusts: a qualitative study.

PubMed

Reid, Colette; Gibbins, Jane; Bloor, Sophia; Burcombe, Melanie; McCoubrie, Rachel; Forbes, Karen

2015-12-01

The quality of end-of-life (EOL) care in acute hospitals is variable and interventions to improve this care, such as EOL care pathways, are not always used. The underlying reasons for this variability are not fully understood. We explored healthcare professionals' views on delivering EOL care within an acute hospital trust in the South West of England. We employed qualitative methods (focus groups, in-depth interviews and questerviews) within a study investigating the impact of a simple EOL tool on the care of dying patients. We invited a range of staff of all grades with experience in caring for dying patients from medicine, surgery and care of the elderly teams to participate. Six focus groups, seven interviews and five questerviews were conducted. Two main themes emerged: (a) delays (difficulties and avoidance) in diagnosing dying and (b) the EOL tool supporting staff in caring for the dying. Staff acknowledged that the diagnosis of dying was often made late; this was partly due to prognostic uncertainty but compounded by a culture that did not acknowledge death as a possible outcome until death was imminent. Both the medical and nursing staff found the EOL tool useful as a means of communicating ceilings of care, ensuring appropriate prescribing for EOL symptoms, and giving nurses permission to approach the bedside of a dying patient. The culture of avoiding death and dying in acute hospitals remains a significant barrier to providing EOL care, even when EOL tools are available and accepted by staff. 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/

Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research.

PubMed

Walter, Fiona M; Emery, Jon; Braithwaite, Dejana; Marteau, Theresa M

2004-01-01

Although the family history is increasingly used for genetic risk assessment of common chronic diseases in primary care, evidence suggests that lay understanding about inheritance may conflict with medical models. This study systematically reviewed and synthesized the qualitative literature exploring understanding about familial risk held by persons with a family history of cancer, coronary artery disease, and diabetes mellitus. Twenty-two qualitative articles were found after a comprehensive literature search and were critically appraised; 11 were included. A meta-ethnographic approach was used to translate the studies across each other, synthesize the translation, and express the synthesis. A dynamic process emerged by which a personal sense of vulnerability included some features that mirror the medical factors used to assess risk, such as the number of affected relatives. Other features are more personal, such as experience of a relative's disease, sudden or premature death, perceived patterns of illness relating to gender or age at death, and comparisons between a person and an affected relative. The developing vulnerability is interpreted using personal mental models, including models of disease causation, inheritance, and fatalism. A person's sense of vulnerability affects how that person copes with, and attempts to control, any perceived familial risk. Persons with a family history of a common chronic disease develop a personal sense of vulnerability that is informed by the salience of their family history and interpreted within their personal models of disease causation and inheritance. Features that give meaning to familial risk may be perceived differently by patients and professionals. This review identifies key areas for health professionals to explore with patients that may improve the effectiveness of communication about disease risk and management.

Struggling to find meaning in life among spouses of people with ALS.

PubMed

Ozanne, Anneli O; Graneheim, Ulla H; Strang, Susann

2015-08-01

The aim of this study was to illuminate experiences of finding meaning in life among spouses of people with amyotrophic lateral sclerosis. Thirteen interviews were analyzed with qualitative content analysis. The spouses were struggling for meaning at the end of a dark tunnel. They felt limited and isolated in their proximity to death. They lived imprisoned lives, felt lonely, considered life to be unfair and incomplete, and mourned the loss of their future. However, they found meaning despite the proximity of death through cherishing their own lives, fellowship, accepting the present, and believing in meaning after the partner's death. Meaning in life strengthened spouses' well-being and ability to find pleasure in a difficult situation. It also strengthened their will to live after the partner's death. Limitations and isolations were strong predictors of what could impair their well-being and the possibility of finding meaning after the partner's death. Spouses need individual support throughout the disease process and after the partner's death, to give them the strength to find meaning in life and prioritize what is important for them. Paying attention to what might prevent them from finding meaning could make it easier to help them in their situation. Providing joint support to the patient and spouse might also help them to see each other's situation, come together, and help each other.

Pushing up daisies: implicit and explicit language in oncologist-patient communication about death.

PubMed

Rodriguez, Keri L; Gambino, Frank J; Butow, Phyllis; Hagerty, Rebecca; Arnold, Robert M

2007-02-01

Although there are guidelines regarding how conversations with patients about prognosis in life-limiting illness should occur, there are little data about what doctors actually say. This study was designed to qualitatively analyze the language that oncologists and cancer patients use when talking about death. We recruited 29 adults who had incurable forms of cancer, were scheduled for a first-time visit with one of six oncologists affiliated with a teaching hospital in Australia, and consented to having their visit audiotaped and transcribed. Using content analytic techniques, we coded various features of language usage. Of the 29 visits, 23 (79.3%) included prognostic utterances about treatment-related and disease-related outcomes. In 12 (52.2%) of these 23 visits, explicit language about death ("terminal," variations of "death") was used. It was most commonly used by the oncologist after the physical examination, but it was sometimes used by patients or their kin, usually before the examination and involving emotional questioning about the patient's future. In all 23 (100%) visits, implicit language (euphemistic or indirect talk) was used in discussing death and focused on an anticipated life span (mentioned in 87.0% of visits), estimated time frame (69.6%), or projected survival (47.8%). Instead of using the word "death," most participants used some alternative phrase, including implicit language. Although oncologists are more likely than patients and their kin to use explicit language in discussing death, the oncologists tend to couple it with implicit language, possibly to mitigate the message effects.

Conducting research interviews with bereaved family carers: when do we ask?

PubMed

Bentley, Brenda; O'Connor, Moira

2015-03-01

Interviews with bereaved family carers to examine the end-of-life experience of the deceased are important tools for palliative care researchers, but the ethics of approaching the bereaved when they are grieving and vulnerable is often debated. The aim of this study was to explore the insights of bereaved family carers about the most appropriate time to be involved in a research interview about the end of life and death of their family member. This qualitative study used a social constructionist framework. Twenty-two bereaved family carers of people with motor neurone disease (MND) and cancer were interviewed in Western Australia. Most family carers (86%) feel comfortable being interviewed about the death of their family member within the first 5 months of bereavement, with 43% reporting they could be interviewed within weeks after death. Family carers reported that recall would be better earlier in bereavement and felt it may be helpful to them to talk about their experiences earlier. They said bereaved people should be allowed to decide for themselves when to be involved in an interview. These findings indicate that interviews with the bereaved may be most fruitful for researchers and beneficial to family carers when they are allowed to make the choice about timing for themselves, beginning weeks after the death of their family member.

Traditional healers' views of the required processes for a "good death" among Xhosa patients pre- and post-death.

PubMed

Graham, Nicola; Gwyther, Liz; Tiso, Thozama; Harding, Richard

2013-09-01

South Africa faces enormous HIV-related mortality and increasing cancer incidence. Traditional healers are the preferred source of advice and care in Africa, and this is true for the large Xhosa ethnic group. To provide more appropriate multidimensional, culturally suitable care at the end of life; this study aimed to identify the care needs and cultural practices of Xhosa patients and families at the end of life, from the perspective of traditional healers. The study design was qualitative and cross-sectional. The research took place in a 300 km radius around East London, Eastern Cape, South Africa. Interviewees were Xhosa individuals who were recognized by their communities as traditional healers. Data from two focus groups and eight individual interviews were analyzed, using an inductive thematic approach. Data were elicited around the facilitation of a good death in terms of care needs before death and important rituals after death. Care needs before death focused on relief of psychosocial suffering; the importance of the spoken word at the deathbed; and the importance of a relationship and spiritual connection at the end of life. There were broad similarities across the rituals described after death, but these rituals were recognized to differ according to family customs or the dying person's wishes. Awareness of potential needs at the end of life can assist clinicians to understand the choices of their patients and develop effective end-of-life care plans that improve the outcomes for patients and families. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Contradictions and Promise for End-of-Life Communication among Family and Friends: Death over Dinner Conversations.

PubMed

Lambert South, Andrea; Elton, Jessica

2017-04-20

The free, open-access website called "Let's Get Together and Talk about Death", or Death over Dinner (DoD), provides resources for initiating end-of-life conversations with family and friends by taking the frightening-talking about death-and transforming it into the familiar-a conversation over dinner. This qualitative, descriptive study uses grounded theory and thematic analysis to answer the following research question: How do friend and family groups communicate about death and dying in DoD conversations? To answer this question, 52 dinner groups were recruited and conversations were conducted, which consisted of a facilitator and volunteers. The facilitators were the researchers or research assistants who allowed dinner participants to control the conversation and identify topics of interest, and participants were free to share as much or as little as they wanted. Our analysis revealed that family and friend groups communicated similarly in that they talked about similar topics and used similar communication strategies to discuss those topics. Three major themes emerged: Desire for a good death , which juxtaposed people's perceptions of a "dreaded" death with those of a "desirable" death; tactics for coping , which consisted of the subthemes of humour to diffuse tension or deflect discomfort, spiritual reassurance, and topic avoidance; and topics that elicit fear or uncertainty , which consisted of the subthemes of organ and whole-body donation, hospice and palliative care, wills and advance directives. Ultimately, however, participants felt their experiences were positive and DoD shows promise as a tool for families to engage in end-of-life conversations.

Validating Quantitative Measurement Using Qualitative Data: Combining Rasch Scaling and Latent Semantic Analysis in Psychiatry

NASA Astrophysics Data System (ADS)

Lange, Rense

2015-02-01

An extension of concurrent validity is proposed that uses qualitative data for the purpose of validating quantitative measures. The approach relies on Latent Semantic Analysis (LSA) which places verbal (written) statements in a high dimensional semantic space. Using data from a medical / psychiatric domain as a case study - Near Death Experiences, or NDE - we established concurrent validity by connecting NDErs qualitative (written) experiential accounts with their locations on a Rasch scalable measure of NDE intensity. Concurrent validity received strong empirical support since the variance in the Rasch measures could be predicted reliably from the coordinates of their accounts in the LSA derived semantic space (R2 = 0.33). These coordinates also predicted NDErs age with considerable precision (R2 = 0.25). Both estimates are probably artificially low due to the small available data samples (n = 588). It appears that Rasch scalability of NDE intensity is a prerequisite for these findings, as each intensity level is associated (at least probabilistically) with a well- defined pattern of item endorsements.

Nurses to Their Nurse Leaders: We Need Your Help After a Failure to Rescue Patient Death.

PubMed

Bacon, Cynthia Thornton

The purpose of this study was to describe nurses' needs and how they are being met and not met after caring for surgical patients who died after a failure to rescue (FTR). A qualitative, phenomenologic approach was used for the interview and analysis framework. Methods to ensure rigor and trustworthiness were incorporated into the design. The investigator conducted semistructured 1:1 interviews with 14 nurses. Data were analyzed using Colaizzi's methods. Four themes were identified: (1) coping mechanisms are important; (2) immediate peer and supervisor feedback and support are needed for successful coping; (3) subsequent supervisor support is crucial to moving on; and (4) nurses desire both immediate support and subsequent follow-up from their nurse leaders after every FTR death. Nurses' needs after experiencing an FTR patient death across multiple practice areas and specialties were remarkably similar and clearly identified and articulated. Coping mechanisms vary and are not uniformly effective across different groups. Although most nurses in this study received support from their peers after the FTR event, many nurses did not receive the feedback and support that they needed from their nurse leaders. Immediate nurse leader support and follow-up debriefings should be mandatory after patient FTR deaths. Developing an understanding of nurses' needs after experiencing an FTR event can assist nurse leaders to better support nurses who experience FTR deaths. Insight into the environment surrounding FTR deaths also provides a foundation for future research aimed at improving patient safety and quality through an improved working environment for nurses.

Why do older people oppose physician-assisted dying? A qualitative study.

PubMed

Malpas, Phillipa J; Wilson, Maria K R; Rae, Nicola; Johnson, Malcolm

2014-04-01

Physician-assisted dying at the end of life has become a significant issue of public discussion. While legally available in a number of countries and jurisdictions, it remains controversial and illegal in New Zealand. The study aimed to explore the reasons some healthy older New Zealanders oppose physician-assisted dying in order to inform current debate. Recorded interviews were transcribed and analysed by the authors after some edits had been made by respondents. In all, 11 older participants (over 65 years) who responded to advertisements placed in Grey Power magazines and a University of Auckland email list were interviewed for around 1 h and asked a number of open-ended questions. Four central themes opposing physician-assisted dying were identified from the interviews: one's personal experience with health care and dying and death, religious reasoning and beliefs, slippery slope worries and concern about potential abuses if physician-assisted dying were legalised. An important finding of the study suggests that how some older individuals think about physician-assisted dying is strongly influenced by their past experiences of dying and death. While some participants had witnessed good, well-managed dying and death experiences which confirmed for them the view that physician-assisted dying was unnecessary, those who had witnessed poor dying and death experiences opposed physician-assisted dying on the grounds that such practices could come to be abused by others.

The Cultural Meaning of Cardiac Illness and Self-Care Among Lebanese Patients With Coronary Artery Disease.

PubMed

Dumit, Nuhad Yazbik; Magilvy, Joan Kathy; Afifi, Rima

2016-07-01

Cardiac disease is the leading cause of death in Lebanon, accounting for 22% to 26% of total deaths in the country. A thorough understanding of perceptions of cardiac illness and related self-care management is critical to the development of secondary prevention programs that are specific to the Lebanese culture. To explore the cultural perceptions of cardiac illness and the associated meaning of self-care among Lebanese patients. Using a qualitative descriptive method, semistructured interviews were conducted with a purposive sample of 15 Lebanese cardiac patients recruited from a medical center in Beirut, Lebanon. The qualitative descriptive analysis yielded one overarching and two other themes describing perceptions of cardiac illness and self-care within the Lebanese cultural context. The overarching cultural theme was, "Lebanese cardiac patients were unfamiliar with the term concept and meaning of self-care." Lebanese cardiac patients thanked God and accepted their fate (Theme I). The participants considered their cardiac incident a life or death warning (Theme II). Health care providers need to consider patients' cultural perception of illness while planning and evaluating cardiac self-care programs. © The Author(s) 2015.

Self-Care Motivation Among Patients With Heart Failure: A Qualitative Study Based on Orem's Theory.

PubMed

Abotalebidariasari, Ghasem; Memarian, Robabe; Vanaki, Zohreh; Kazemnejad, Anoshirvan; Naderi, Nasim

2016-11-01

Initiating and adhering to self-care activities necessitate self-care motivation. This study was undertaken in Iran to explore self-care motivation among patients with heart failure (HF). This qualitative study was done in 2014 and 2015. Study participants were patients with HF and their family members who were purposively selected from Shaheed Rajaei Cardiovascular, Medical and Research Center, Tehran, Iran. The study data were collected from December 2014 to May 2015 by doing in-depth semistructured face-to-face interviews and were analyzed via the directed content analysis approach. Eleven primary codes were generated which reflected motivations for self-care among patients with HF in the Iranian sociocultural context. To enhance the clarity of the findings, these primarily codes were summarized and grouped into 7 subcategories including fear of death and love of life, returning to previous physical health status and preventing or alleviating symptoms, understanding the value of self-care behaviors and trusting them, having the desire for remaining independent, relying on God, reassuring and supporting family members, and preventing family members from feeling irritation. The findings of this study indicate that patients with HF have different motivations for doing self-care activities. Fear of death, love of life, wish to return to previous health status, and prevention or alleviation of HF symptoms were the participants' strongest motivations for self-care. Understanding the motivations for self-care among patients with HF, based a holistic approach and evidence-based practice, can help nurses and physicians develop motivational programs for promoting self-care behaviors.

'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.

Occupational Homicides of Law Enforcement Officers, 2003-2013: Data From the National Violent Death Reporting System.

PubMed

Blair, Janet M; Fowler, Katherine A; Betz, Carter J; Baumgardner, Jason L

2016-11-01

Law enforcement officers (LEOs) in the U.S. are at an increased risk for homicide. The purpose of this study is to describe the characteristics of homicides of LEOs in 17 U.S. states participating in the National Violent Death Reporting System. This active surveillance system uses data from death certificates, coroner/medical examiner reports, and law enforcement reports. This study used quantitative and qualitative methods to analyze National Violent Death Reporting System data for 2003-2013. Deaths of LEOs feloniously killed in the line of duty were selected for analysis. LEO homicides and the circumstances preceding or occurring during the incident were characterized. Analyses were conducted October 2015-June 2016. A total of 128 officer homicides from 121 incidents were identified. Most (93.7%) LEO victims were male, 60.9% were aged 30-49 years (average age, 40.9 years). Approximately 21.9% of LEOs were killed during an ambush, and 19.5% were killed during traffic stops or pursuits. Of the 14.1% of LEOs killed responding to domestic disturbances, most disturbances were intimate partner violence related. More than half (57.0%) of homicides were precipitated by another crime, and of these, 71.2% involved crimes in progress. Most suspects were male. Ninety-one percent of homicides of LEOs were committed with a firearm. This information is critical to help describe encounter situations faced by LEOs. The results of this study can be used to help educate and train LEOs on hazards, inform prevention efforts designed to promote LEO safety, and prevent homicide among this population. Published by Elsevier Inc.

The lived experience of pediatric burn nurses following patient death.

PubMed

Kellogg, Marni B; Barker, Marianne; McCune, Nancy

2014-01-01

The purpose of this study is to describe the lived experience of pediatric burn unit nurses who have experienced the death of a patient. A qualitative phenomenological design was used for the interview and analysis. Methods were incorporated into the design to ensure reliability, consistency, and rigor. Using a semi-structured interview guide and phenomenological concepts, the investigators interviewed seven registered nurses who were employed in a pediatric burn unit. Data obtained were analyzed for common themes that emerged during examination of transcribed interviews. Four common themes of feelings were identified: 1) grief and sadness, 2) helplessness, 2) compartmentalization of feelings, and 4) lack of preparedness for dealing with situations involving the death of a pediatric patient. While nurses are emotionally supportive to patients and families, the emotional support available to nurses who are dealing with these situations is lacking. By developing individual coping strategies and seeking peer support, nurses attempt to deal with emotional situations faced in the workplace. Nurses, nurse educators, and administrators must understand the impact of nurses' grief following patient death. By understanding and validating their emotions, it is hoped that nurses will be supported in a way that will enhance a healthy professional environment and personal well-being.

A qualitative study of nurses' attitudes towards' and accommodations of patients' expressions of religiosity and faith in dementia care.

PubMed

Skomakerstuen Ødbehr, Liv; Kvigne, Kari; Hauge, Solveig; Danbolt, Lars Johan

2015-02-01

To investigate nurses' attitudes towards and accommodations of patients' expressions of religiosity and faith in dementia care. Holistic care for people with dementia addresses patients' religiosity and faith. Nurses' accommodations of patients' religiosity have not been studied extensively even though nurses report a lack of experience and knowledge regarding religious care. This study has a qualitative research design. Eight focus group interviews with 16 nurses and 15 care workers in four Norwegian nursing homes were conducted from June 2011-January 2012. The interview text was analysed using van Manen's hermeneutic-phenomenological approach and Lindseth and Nordberg's structural analysis. The following three main themes reflected the nurses' and care workers' attitudes towards and accommodations of patients' expressions of religiosity and faith: (i) embarrassment vs. comfort, described in the sub-themes 'feelings of embarrassment' and 'religiosity as a private matter'; (ii) unknown religious practice vs. known religious practice, described as 'religious practice that was scary' or 'religious practice that was recognizable'; and (iii) death vs. life, described as 'difficulty talking about death 'or 'focusing on life and the quality of life'. Nurses and care workers were uncertain and lacked knowledge of the patients' expressions of religiosity and faith in terms of both their substance and their function. Nurses struggled with ambivalent feelings about patients' religious expressions and with unclear understanding of the significance of religiosity. These challenges compromised person-centred and holistic care on several occasions. © 2014 John Wiley & Sons Ltd.

Revisiting the Continuing Bonds Theory: The Cultural Uniqueness of the Bei Dao Phenomenon in Taiwanese Widows/Widowers.

PubMed

Lee, Wan-Lin; Hou, Yi-Chen; Lin, Yaw-Sheng

2017-10-01

In the present study, we used the phenomenological approach to rediscover the ontological meaning of relationships with the deceased in Taiwanese widows/widowers. We first revised the original Western definitions of grief, bereavement, and mourning to fit Taiwanese culture. We used the word bei dao to indicate the mixed nature of grief and mourning in the Taiwanese bereavement process. Then we reanalyzed data from a previous study, which was conducted in 2006. In the previous qualitative research, each subject was interviewed 3 to 4 times in the mourning state over an 18-month interval that began at the point of the spouse's death. Results showed that two main themes emerged in the present analysis: (a) a blurred boundary of life and death and (b) a transformation of ethical bonds. The present study reveals the culturally unique aspects of the Taiwanese bei dao process. Limitations of the present study and future directions are discussed and reflected.

Lessons from history: Surviving old age during The Great Depression in the United States.

PubMed

Matthews, Sarah H; Dunkle, Ruth E

2013-12-01

This paper focuses on 30 couples who received a pension and other services from two private trusts in Detroit, Michigan beginning in 1929 or 1930. Results of the qualitative analysis of case files, which contain notes recorded chronologically for 17 of the couples and then surviving spouses, provide a portrait of older couples' lives prior to a partner's death, circumstances surrounding the death, and changes in the social support systems of widows and widowers until their deaths. Close examination of the experiences of these couples is a reminder of how old age and widowhood were experienced prior to the enactment of public pensions and health insurance in the United States. © 2013.

Compiling mortality statistics from civil registration systems in Viet Nam: the long road ahead.

PubMed

Rao, Chalapati; Osterberger, Brigitta; Anh, Tran Dam; MacDonald, Malcolm; Chúc, Nguyen Thi Kim; Hill, Peter S

2010-01-01

Accurate mortality statistics, needed for population health assessment, health policy and research, are best derived from data in vital registration systems. However, mortality statistics from vital registration systems are not available for several countries including Viet Nam. We used a mixed methods case study approach to assess vital registration operations in 2006 in three provinces in Viet Nam (Hòa Bình, Thùa Thiên-Hué and Bình Duong), and provide recommendations to strengthen vital registration systems in the country. For each province we developed life tables from population and mortality data compiled by sex and age group. Demographic methods were used to estimate completeness of death registration as an indicator of vital registration performance. Qualitative methods (document review, key informant interviews and focus group discussions) were used to assess administrative, technical and societal aspects of vital registration systems. Completeness of death registration was low in all three provinces. Problems were identified with the legal framework for registration of early neonatal deaths and deaths of temporary residents or migrants. The system does not conform to international standards for reporting cause of death or for recording detailed statistics by age, sex and cause of death. Capacity-building along with an intersectoral coordination committee involving the Ministries of Justice and Health and the General Statistics Office would improve the vital registration system, especially with regard to procedures for death registration. There appears to be strong political support for sentinel surveillance systems to generate reliable mortality statistics in Viet Nam.

Validation of inverse seasonal peak mortality in medieval plagues, including the Black Death, in comparison to modern Yersinia pestis-variant diseases.

PubMed

Welford, Mark R; Bossak, Brian H

2009-12-22

Recent studies have noted myriad qualitative and quantitative inconsistencies between the medieval Black Death (and subsequent "plagues") and modern empirical Y. pestis plague data, most of which is derived from the Indian and Chinese plague outbreaks of A.D. 1900+/-15 years. Previous works have noted apparent differences in seasonal mortality peaks during Black Death outbreaks versus peaks of bubonic and pneumonic plagues attributed to Y. pestis infection, but have not provided spatiotemporal statistical support. Our objective here was to validate individual observations of this seasonal discrepancy in peak mortality between historical epidemics and modern empirical data. We compiled and aggregated multiple daily, weekly and monthly datasets of both Y. pestis plague epidemics and suspected Black Death epidemics to compare seasonal differences in mortality peaks at a monthly resolution. Statistical and time series analyses of the epidemic data indicate that a seasonal inversion in peak mortality does exist between known Y. pestis plague and suspected Black Death epidemics. We provide possible explanations for this seasonal inversion. These results add further evidence of inconsistency between historical plagues, including the Black Death, and our current understanding of Y. pestis-variant disease. We expect that the line of inquiry into the disputed cause of the greatest recorded epidemic will continue to intensify. Given the rapid pace of environmental change in the modern world, it is crucial that we understand past lethal outbreaks as fully as possible in order to prepare for future deadly pandemics.

Death of a Simulated Pediatric Patient: Toward a More Robust Theoretical Framework.

PubMed

McBride, Mary E; Schinasi, Dana Aronson; Moga, Michael Alice; Tripathy, Shreepada; Calhoun, Aaron

2017-12-01

A theoretical framework was recently proposed that encapsulates learner responses to simulated death due to action or inaction in the pediatric context. This framework, however, was developed at an institution that allows simulated death and thus does not address the experience of those centers at which this technique is not used. To address this, we performed a parallel qualitative study with the intent of augmenting the initial framework. We conducted focus groups, using a constructivist grounded theory approach, using physicians and nurses who have experienced a simulated cardiac arrest. The participants were recruited via e-mail. Transcripts were analyzed by coders blinded to the original framework to generate a list of provisional themes that were iteratively refined. These themes were then compared with the themes from the original article and used to derive a consensus model that incorporated the most relevant features of each. Focus group data yielded 7 themes. Six were similar to those developed in the original framework. One important exception was noted; however, those learners not exposed to patient death due to action or inaction often felt that the mannequin's survival was artificial. This additional theme was incorporated into a revised framework. The original framework addresses most aspects of learner reactions to simulated death. Our work suggests that adding the theme pertaining to the lack of realism that can be perceived when the mannequin is unexpectedly saved results in a more robust theoretical framework transferable to centers that do not allow mannequin death.

[Research Progress on Forensic Entomotoxicology].

PubMed

Liu, Zhi-jiang; Zhai, Xian-dun; Guan, Ling; Mo, Yao-nan

2015-06-01

Forensic entomotoxicology is a branch of forensic medicine, which applies entomology, toxicology and other related studies to solve the poisoning cases. It has an obvious advantage in the investigation on poisoning death. Based on the expounding definition and research of entomotoxicology, this paper reviews research progress and application value in some aspects of forensic medicine, such as the effects of drugs/toxins on the growth and development of sarcosaphagous insects and the qualitative and quantitative analysis of the drugs/toxins in the poisoned body tissue.

Influence of war on quantitative and qualitative changes in drug-induced mortality in Split-Dalmatia County, Croatia

PubMed Central

Marasović Šušnjara, Ivana; Definis Gojanović, Marija; Vodopija, Davor; Čapkun, Vesna; Smoljanović, Ankica

2011-01-01

Aim To study drug-induced mortality and characteristics of overdose deaths in the war (1991-1995), pre-war (1986-1990), and post-war period (1996-2000) in Split-Dalmatia County. Methods We retrospectively searched through Databases of the Department of Forensic Medicine, University Hospital Split, the national register of death records, the archives of the Split-Dalmatia County Police, and the Register of Treated Drug Addicts of the Croatian National Institute of Public Health, covering the period from 1986 to 2000, according to drug poisoning codes IX and X of the International Classification of Diseases. The indicators were statistically analyzed. Results There were 146 registered drug-induced deaths, with 136 (93%) deceased being men. The median age of all cases was 27 years (interquartile range 8). Most of them were single (70.6%), unemployed (44.6%), and secondary school graduates (69.2%). In the war period, there were 4.8 times more deaths than in the pre-war period (P = 0.014), and in the post-war period there were 5.2 times more deaths than in the pre-war period (P = 0.008). The most common site of death was the deceased person’s home. The toxicological analyses showed that 59 (61%) deaths were heroin related, alcohol use was found in 62 cases (42.5%), and multi-substance use was found in more than a half of the cases. In 133 (91.1%) cases, deaths were classified as unintentional, whereas 13 (8.9%) were classified as suicides. Conclusion The war, along with other risk factors, contributed to unfavorable developments related to drug abuse in Split-Dalmatia County, including the increase in the drug-induced mortality rate. PMID:21990081

Influence of war on quantitative and qualitative changes in drug-induced mortality in Split-Dalmatia County, Croatia.

PubMed

Marasovic Susnjara, Ivana; Definis Gojanovic, Marija; Vodopija, Davor; Capkun, Vesna; Smoljanovic, Ankica

2011-10-15

To study drug-induced mortality and characteristics of overdose deaths in the war (1991-1995), pre-war (1986-1990), and post-war period (1996-2000) in Split-Dalmatia County. We retrospectively searched through Databases of the Department of Forensic Medicine, University Hospital Split, the national register of death records, the archives of the Split-Dalmatia County Police, and the Register of Treated Drug Addicts of the Croatian National Institute of Public Health, covering the period from 1986 to 2000, according to drug poisoning codes IX and X of the International Classification of Diseases. The indicators were statistically analyzed. There were 146 registered drug-induced deaths, with 136 (93%) deceased being men. The median age of all cases was 27 years (interquartile range 8). Most of them were single (70.6%), unemployed (44.6%), and secondary school graduates (69.2%). In the war period, there were 4.8 times more deaths than in the pre-war period (P=0.014), and in the post-war period there were 5.2 times more deaths than in the pre-war period (P=0.008). The most common site of death was the deceased person's home. The toxicological analyses showed that 59 (61%) deaths were heroin related, alcohol use was found in 62 cases (42.5%), and multi-substance use was found in more than a half of the cases. In 133 (91.1%) cases, deaths were classified as unintentional, whereas 13 (8.9%) were classified as suicides. CONCLUSION; The war, along with other risk factors, contributed to unfavorable developments related to drug abuse in Split-Dalmatia County, including the increase in the drug-induced mortality rate.

'Just because she's young, it doesn't mean she has to die': exploring the contributing factors to high maternal mortality in adolescents in Eastern Freetown; a qualitative study.

PubMed

November, Lucy; Sandall, Jane

2018-02-21

In Sierra Leone, 34% of pregnancies and 40% of maternal deaths are in the adolescent population. Risks are known to be higher for younger adolescents, this being borne out by a household survey in Eastern Freetown in 2015. This current qualitative study, funded by Wellbeing of Women's international midwifery fellowship, was conducted to explore the causes of this high incidence of maternal death for younger teenagers, and to identify possible interventions to improve outcomes. This qualitative study used semi-structured interviews (n = 19) and focus groups (n = 6), with a wide range of professional and lay participants, recorded with consent. Recordings were transcribed by the first author and a Krio-speaking colleague where necessary, and Nvivo software was used to assist with theming of the data around the three main research questions. Themes from discussions on vulnerability to teenage pregnancy focused on transactional sex, especially for girls living outside of their birth family. They included sex for school fees, sex with teachers for grades, sex for food and clothes, and sex to lessen the impact of the time-consuming duties of water collection and petty trading. In addition, the criminal justice system and the availability and accessibility of contraception and abortion were included within this major theme. Within the major theme of vulnerability to death once pregnant, abandonment, delayed care seeking, and being cared for by a non-parental adult were identified. Several obstetric risks were discussed by midwives, but were explicitly related to the socio-economic factors already mentioned. A cross-cutting theme throughout the data was of gendered social norms for sexual behaviour, for both boys and girls, being reinforced by significant adults such as parents and teachers. Findings challenge the notion that adolescent girls have the necessary agency to make straightforward choices about their sexual behaviour and contraceptive use. For girls who do become pregnant, risks are believed to be related more to stigma and abandonment than to physical maturity, leading to lack of family-based support and delayed care-seeking for antenatal and delivery care. Two potential interventions identified within the research are a mentoring scheme for the most vulnerable pregnant girls and a locally managed blood donation register. A feasibility study of a pilot mentoring scheme is currently underway, run by the first author and a local partner.

Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives.

PubMed

Ormondroyd, E; Moynihan, C; Watson, M; Foster, C; Davolls, S; Ardern-Jones, A; Eeles, R

2007-08-01

When a gene mutation is identified in a research study following the death of the study participant, it is not clear whether such information should be made available to relatives. We report here an evaluation of the impact on relatives of being informed of study results that detected pathogenic BRCA2 mutations in a male relative, now deceased, who had early onset (under the age of 55) prostate cancer. The breast and ovarian cancer risk was unknown to the living relatives. Qualitative analysis of interviews with thirteen relatives indicated that those who had a higher risk perception, resulting from an awareness of cancer family history or experiential knowledge of cancer in their family, tended to adjust more easily to the results. All participants believed that genetics research results of clinical significance should be fed back to relatives. Those who were fully aware of the BRCA2 results and implications for themselves felt they had benefited from the information, irrespective of whether or not they had elected for genetic testing, because of the consequent availability of surveillance programs. Initial anxiety upon learning about the BRCA2 result was alleviated by genetic counselling. Factors influencing those who have not engaged with the information included scepticism related to the relative who attempted to inform them, young age and fear of cancer. Those who had not sought genetic counselling did not attempt further dissemination, and some were not undergoing regular screening. Implications for informed consent in genetics research programs, and the requirement for genetic counselling when research results are disclosed, are discussed.

Maternal complications in a geographically challenging and hard to reach district of Bangladesh: a qualitative study.

PubMed

Biswas, Animesh; Dalal, Koustuv; Abdullah, Abu Sayeed Md; Gifford, Mervyn; Halim, M A

2016-01-01

Background: Maternal complications contribute to maternal deaths in developing countries. Bangladesh still has a high prevalence of maternal mortality, which is often preventable. There are some geographically challenging and hard to reach rural districts in Bangladesh and it is difficult to get information about maternal complications in these areas. In this study, we examined the community lay knowledge of possible pregnancy complications. We also examined the common practices associated with complications and we discuss the challenges for the community. Methods: The study was conducted in Moulvibazar of north east Bangladesh, a geographically challenged, difficult to reach district. Qualitative methods were used to collect the information. Pregnant women, mothers who had recently delivered, their guardians and traditional birth attendants participated in focus group discussions. Additionally, in-depth interviews were conducted with the family members. Thematic analyses were performed. Results: The study revealed that there is a lack of knowledge of maternal complications. In the majority of cases, the mothers did not receive proper treatment for maternal complications.   There are significant challenges that these rural societies need to address: problems of ignorance, traditional myths and family restrictions on seeking better treatment. Moreover, traditional birth attendants and village doctors also have an important role in assuring appropriate, effective and timely treatment. Conclusions:  The rural community lacks adequate knowledge on maternal complications.  Reduction of the societal barriers including barriers within the family can improve overall practices. Moreover, dissemination of adequate information to the traditional birth attendant and village doctors may improve the overall situation, which would eventually help to reduce maternal deaths.

Granting death with dignity: patient, family and professional perspectives.

PubMed

Leung, Doris

2007-04-01

Dignity is a complex construct lacking clear meaning. While conceptualizing dignity as a basic right is useful in determining and justifying social and economic costs of health care, it is insufficient in considerations of personal dignity at the end of life. There is a dissonance between how dignity is shown to matter to healthcare professionals compared to patients. Furthermore, dignity is not clearly linked in the empirical literature to variables of quality of life and to a dignified death. Current studies about the construct of dignity enhance understanding of how we extrinsically construct moral worth, but not of how individuals interpret intrinsic moral worth through maintaining their personal integrity and attitudes of being cared for. References to key qualitative studies illuminate how clinicians ethically negotiate a creation of dying with dignity. As one's personal integrity fades, caregivers (i.e. healthcare providers, family and friends) are challenged to recognise and attend to the individual's vulnerability. I suggest that caregivers nurture personal integrity - through gestures that remember and honour aspects of the other as he/she was once known. Perhaps only through others can dying people be granted death with a sense of personal dignity.

[The knowledge, involvement and feelings of students graduating in medicine, nursing and psychology about orthothanasia].

PubMed

dos Santos, Luís Roberto Gonçalves; Menezes, Mariana Pires; Gradvohl, Silvia Mayumi Obana

2013-09-01

Orthothanasia involves the suspension of medical procedures for terminal phase patients, which leads to a natural death, relieving the symptoms that cause suffering. In this process, professionals such as physicians, nurses and psychologists, interact with patients and their families. Therefore, it is desirable that during undergraduate studies these professionals should take subjects geared to handle this aspect. The scope of this qualitative study was to evaluate the awareness with respect to orthothanasia of undergraduates in medicine, nursing and psychology courses in a university. Trigger questions in semi-structured interviews were conducted with 22 students. The interviews were recorded and transcribed for content analysis and core identification themes. Three categories were identified: knowledge about orthothanasia; who should be involved in this process; and feelings experienced when facing death. The data revealed that students have scant knowledge about the subject, consider the family involvement in the orthothanasia decision to be important and they do not feel prepared to deal with death situations. The conclusion points to the need to change the focus on the end-of-life issue in the undergraduate courses in the area of health care in order to prepare the future professional adequately.

Apoptosis after gamma irradiation. Is it an important cell death modality?

PubMed Central

Siles, E.; Villalobos, M.; Jones, L.; Guerrero, R.; Eady, J. J.; Valenzuela, M. T.; Núñez, M. I.; McMillan, T. J.; Ruiz de Almodóvar, J. M.

1998-01-01

Apoptosis and necrosis are two different forms of cell death that can be induced by cytotoxic stress, such as ionizing radiation. We have studied the importance of apoptotic death induced after treatment with 6 Gy of gamma-irradiation in a panel of eight human tumour cell lines of different radiosensitivities. Three different techniques based on the detection of DNA fragmentation have been used, a qualitative one--DNA ladder formation --and two quantitative approaches--in situ tailing and comet assay. No statistically significant relationship between the two quantitative assays was found (r= 0.327, P = 0.159) so these methods seem to show different aspects of the process of cell death. The presence of the DNA ladder related well to the end-labelling method in that the least amount of end labelling was seen in samples in which necrotic degradation rather than apoptotic ladders were seen. However, as the results obtained by the comet assay are not in agreement with the DNA ladder experiments, we suggest that the distinction between the degraded DNA produced by apoptosis and necrosis may be difficult by this technique. Finally, although apoptosis has been proposed to be dependent on p53 functionality, and this may explain differences in cellular radiosensitivity, no statistically significant relationship was found between these parameters and apoptosis in the eight cell lines studied. PMID:9862569

Conducting Research Interviews with Bereaved Family Carers: When Do We Ask?

PubMed Central

O'Connor, Moira

2015-01-01

Abstract Background: Interviews with bereaved family carers to examine the end-of-life experience of the deceased are important tools for palliative care researchers, but the ethics of approaching the bereaved when they are grieving and vulnerable is often debated. Objective: The aim of this study was to explore the insights of bereaved family carers about the most appropriate time to be involved in a research interview about the end of life and death of their family member. Methods: This qualitative study used a social constructionist framework. Twenty-two bereaved family carers of people with motor neurone disease (MND) and cancer were interviewed in Western Australia. Results: Most family carers (86%) feel comfortable being interviewed about the death of their family member within the first 5 months of bereavement, with 43% reporting they could be interviewed within weeks after death. Family carers reported that recall would be better earlier in bereavement and felt it may be helpful to them to talk about their experiences earlier. They said bereaved people should be allowed to decide for themselves when to be involved in an interview. Conclusions: These findings indicate that interviews with the bereaved may be most fruitful for researchers and beneficial to family carers when they are allowed to make the choice about timing for themselves, beginning weeks after the death of their family member. PMID:25517136

Truck Drivers' Experiences and Perspectives Regarding Factors Influencing Traffic Accidents: A Qualitative Study.

PubMed

Karimi Moonaghi, Hossein; Ranjbar, Hossein; Heydari, Abbas; Scurlock-Evans, Laura

2015-08-01

Traffic accidents are a major public health problem, leading to death and disability. Although pertinent studies have been conducted, little data are available in Iran. This study explored the experiences of truck drivers and their perspectives regarding factors contributing to traffic accidents. Eighteen truck drivers, purposively sampled, participated in semi-structured interviews. Data were analyzed using qualitative content analysis. A main theme, lack of ability to control stress, emerged as a factor influencing the incidence of traffic accidents. This main theme was found to have three subthemes: poor organization of the job, lack of workplace facilities and proper equipment, and unsupportive environment. Although several factors were found to contribute to traffic accidents, their effects were not independent, and all were considered significant. Identifying factors that contribute to traffic accidents requires a systematic and holistic approach. Findings could be used by the transportation industry and community health centers to prevent traffic accidents. © 2015 The Author(s).

Determination of cellular injury and death thresholds following exposure to high voltage 10ns electrical pulses

NASA Astrophysics Data System (ADS)

Ibey, Bennett L.; Roth, Caleb C.; Bernhard, Joshua A.; Pakhomov, Andrei G.; Wilmink, Gerald J.; Pakhomova, Olga

2011-03-01

Intense, nanosecond-duration electric pulses (nsEP) have been introduced as a novel modality to alter cellular function, with a mechanism of action qualitatively different from micro- and millisecond duration pulses used in electroporation. In this study, we determined the thresholds for plasma membrane injury (within 15 minutes) and cell death (at 24 hours) for 4 different cell types (CHO-K1, HeLa, Jurkat and U937). Plasma membrane injury was measured by flow cytometry using two fluorescent dyes, namely Annexin V-FITC, which binds to phosphatidylserine (PS) upon its externalization (subtle membrane injury), and propidium iodide (PI), which is typically impermeable to the cell, but enters when large pores are formed in the plasma membrane. In all cell types, 10-ns pulses caused phosphatidylserine (PS) externalization at low doses (<150kV/cm and 100 pulses for each cell type) and no PI uptake. Jurkat and U937 cell lines showed substantial cell death without uptake of PI (15 minutes post exposure) suggesting either delayed permeabilization due to swelling, or damage to intracellular components. In CHO-K1 and HeLa cell lines, PI uptake occurred at low doses relative to that necessary to cause cell death suggesting a necrotic death similar to longer pulse exposures. These findings suggest that nanosecond pulses may be beneficial in applications that require selective elimination of specific cell types.

The business of death: a qualitative study of financial concerns of widowed older women.

PubMed

DiGiacomo, Michelle; Lewis, Joanne; Phillips, Jane; Nolan, Marie; Davidson, Patricia M

2015-04-18

The feminisation of ageing and increasing number of widowed women in contemporary society has significant implications. Older women are at risk of poor health, social, and economic outcomes upon widowhood. The aim of the study was to describe women's experiences in the period soon after their husbands' death, including their financial issues and concerns, and the ways in which these experiences impacted on the transition to widowhood late in life. This was a longitudinal study using serial in-depth semi-structured interviews with 21 community-dwelling women over the age of 65 in Australia. Verbatim transcripts underwent Interpretive Phenomenological Analysis. Thematic analysis revealed: 1) administrative burden increases vulnerability; 2) gender roles impact on transitions; and 3) financial adjustments render housing insecurity and health risk. High administrative burden within the context of significant grief and mourning was a defining feature of the early bereavement period. Complicated protracted administrative processes, insensitive interactions, and reminders of loss contributed to distress, anxiety and feelings of demoralisation. Several women identified assumption of household financial management as the most difficult aspect of coping with their husband's death. Older women may have unmet needs for assistance with administrative, financial, and legal issues immediately following spousal death and potentially for years afterward. Lack of familiarity and absence of instrumental support with financial and legal issues signal the need for policy reform, resources to improve financial literacy in women throughout the life course, increased advocacy, and consideration of different support and service models.

[Development and Evaluation of a Self-Reflection Program for Intensive Care Unit Nurses Who Have Experienced the Death of Pediatric Patients].

PubMed

Kang, Hyun Ju; Bang, Kyung Sook

2017-06-01

This study aims to develop a self-reflection program for nurses who have experienced the death of pediatric patients in the intensive care unit and to evaluate its effectiveness. The self-reflection program was developed by means of the following four steps: establishment of the goal through investigation of an initial request, drawing up the program, preliminary research, and implementation and improvement of the program. The study employed a methodological triangulation to evaluate the effectiveness of the program. Participants were 38 nurses who had experienced the death of pediatric patients (experimental group=15, control group=23); they were recruited using convenience sampling. The self-reflection program was provided over 6 weeks (6 sessions). Data were collected from April to August, 2014 and analyzed using t-tests and content analysis. The quantitative results showed that changes in personal growth (t=-6.33, p<.001) and burnout scores (z=-2.76, p=.005) were better in the experimental group compared to the control group. The qualitative results exhibited two themes, namely "personal growth" and "professional growth", and ten sub-themes. The self-reflection program developed by this study was effective in helping nurses who had experienced the death of pediatric patients to achieve personal growth through self-reflection, and it was confirmed that the program can be applied in a realistic clinical nursing setting. Furthermore, it can be recommended as an intervention program for clinical nurses. © 2017 Korean Society of Nursing Science

Accepting transitions: African Americans discuss end of life.

PubMed

Yancu, Cecile N; Farmer, Deborah F; Graves, Mara J; Rhinehardt, April; Leahman, Dee

2015-06-01

African Americans typically underuse hospice care; this study explores their end of life attitudes. An iterative focus group strategy generated qualitative data using 4 baseline groups and 1 confirmatory focus group recruited from predominantly African American churches. Each group consisted of 8 to 14 adults. Investigators analyzed data for dominant themes, representatives from baseline groups returned to discuss the results. A total of 43 African Americans (male: 8 [18.6]; female: 35 [81.4]) participated in initial discussions, with 10 returning for follow-up. The prevailing theme was transitions; with life to death dominating discourse; other themes included curative to palliative care and acceptance of death as inevitable. Among African Americans, outreach efforts may be strengthened by reframing the dying process as the product of many transitions and reaching out to faith-based communities. © The Author(s) 2014.

Parents' experience of a follow-up meeting after a child's death in the Paediatric Intensive Care Unit.

PubMed

Brink, Helle L; Thomsen, Anja K; Laerkner, Eva

2017-02-01

'To identify parents' experience of a follow up meeting and to explore whether the conversation was adequate to meet the needs of parents for a follow-up after their child's death in the Paediatric Intensive Care Unit (PICU). Qualitative method utilising semi-structured interviews with six pairs of parents 2-12 weeks after the follow-up conversation. The interviews were held in the parents' homes at their request. Data were analysed using a qualitative, descriptive approach and thematic analysis. Four main themes emerged: (i) the way back to the PICU; (ii) framework; (iii) relations and (iv) closure. The parents expressed nervousness before the meeting, but were all pleased to have participated in these follow-up meetings. The parents found it meaningful that the follow-up meeting was interdisciplinary, since the parents could have answers to their questions both about treatment and care. It was important that the staff involved in the follow-up meeting were those who had been present through the hospitalisation and at the time of the child's death. Parents experienced the follow-up meeting as being a closure of the course in the PICU, regardless the length of the hospitalisation. Copyright © 2016 Elsevier Ltd. All rights reserved.

A qualitative study of oncologists' approaches to end-of-life care.

PubMed

Jackson, Vicki A; Mack, Jennifer; Matsuyama, Robin; Lakoma, Mathew D; Sullivan, Amy M; Arnold, Robert M; Weeks, Jane C; Block, Susan D

2008-07-01

To understand how oncologists provide care at the end of life, the emotions they experience in the provision of this care, and how caring for dying patients may impact job satisfaction and burnout. A face-to-face survey and in-depth semistructured interview of 18 academic oncologists who were asked to describe the most recent inpatient death on the medical oncology service. Physicians were asked to describe the details of the patient death, their involvement with the care of the patient, the types and sequence of their emotional reactions, and their methods of coping. Grounded theory qualitative methods were utilized in the analysis of the transcripts. Physicians, who viewed their physician role as encompassing both biomedical and psychosocial aspects of care, reported a clear method of communication about end-of-life (EOL) care, and an ability to positively influence patient and family coping with and acceptance of the dying process. These physicians described communication as a process, made recommendations to the patient using an individualized approach, and viewed the provision of effective EOL care as very satisfying. In contrast, participants who described primarily a biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease, and an absence of collegial support. In their descriptions of communication encounters with patients and families, these physicians did not seem to feel they could impact patients' coping with and acceptance of death and made few recommendations about EOL treatment options. Physicians' who viewed EOL care as an important role described communicating with dying patients as a process and reported increased job satisfaction. Further research is necessary to determine if educational interventions to improve physician EOL communication skills could improve physician job satisfaction and decrease burnout.

Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue

PubMed Central

Meier, Emily A.; Gallegos, Jarred V.; Montross-Thomas, Lori P.; Depp, Colin A.; Irwin, Scott A.; Jeste, Dilip V.

2016-01-01

There is little agreement about what constitutes good death or successful dying. The authors conducted a literature search for published, English-language, peer-reviewed reports of qualitative and quantitative studies that provided a definition of a good death. Stakeholders in these articles included patients, prebereaved and bereaved family members, and healthcare providers (HCPs). Definitions found were categorized into core themes and subthemes, and the frequency of each theme was determined by stakeholder (patients, family, HCPs) perspectives. Thirty-six studies met eligibility criteria, with 50% of patient perspective articles including individuals over age 60 years. We identified 11 core themes of good death: preferences for a specific dying process, pain-free status, religiosity/spiritualty, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with HCP, and other. The top three themes across all stakeholder groups were preferences for dying process (94% of reports), pain-free status (81%), and emotional well-being (64%). However, some discrepancies among the respondent groups were noted in the core themes: Family perspectives included life completion (80%), quality of life (70%), dignity (70%), and presence of family (70%) more frequently than did patient perspectives regarding those items (35%–55% each). In contrast, religiosity/spirituality was reported somewhat more often in patient perspectives (65%) than in family perspectives (50%). Taking into account the limitations of the literature, further research is needed on the impact of divergent perspectives on end-of-life care. Dialogues among the stakeholders for each individual must occur to ensure a good death from the most critical viewpoint—the patient’s. PMID:26976293

Dying with motor neurone disease, what can we learn from family caregivers?

PubMed Central

Ray, Robin A.; Brown, Janice; Street, Annette F.

2012-01-01

Abstract Background  Increasingly, people with neurodegenerative illness are cared for at home until close to death. Yet, discussing the reality of dying remains a social taboo. Objective  To examine the ways, family caregivers of people living with motor neurone disease (MND) experienced the dying of their relative and to identify how health practitioners can better prepare families for end‐of‐life care. Design  Secondary analysis was undertaken on data sets generated from two longitudinal qualitative studies employing similar data collection and analysis methods. Combining data sets increased participant numbers in a low incidence disease group. Setting and participants  Primary studies were undertaken with family caregivers in England and Australia. Interview and observational data were collected mostly in home. Participants who discussed dying and death formed the sample for secondary analysis. Results  Combined data revealed four major themes: planning for end of life, unexpected dying, dignity in the dying body and positive end to MND. Despite short survival predictions, discussions among family members about dying were often sporadic and linked to loss of hope. Effective planning for death assisted caregivers to manage the final degenerative processes of dying. When plans were not effectively communicated or enacted, capacity to preserve personhood was reduced. Discussion and Conclusion  Returning death and dying to social discourse will raise the level of community awareness and normalize conversations about end‐of‐life care. Strategies for on‐going, effective communication that facilitates advance care planning among patients, their families and practitioners are essential to improve dying and death for people with MND and their family caregivers. PMID:22512686

Patients' perceptions and experiences of cardiovascular disease and diabetes prevention programmes: A systematic review and framework synthesis using the Theoretical Domains Framework.

PubMed

Shaw, Rachel L; Holland, Carol; Pattison, Helen M; Cooke, Richard

2016-05-01

This review provides a worked example of 'best fit' framework synthesis using the Theoretical Domains Framework (TDF) of health psychology theories as an a priori framework in the synthesis of qualitative evidence. Framework synthesis works best with 'policy urgent' questions. The review question selected was: what are patients' experiences of prevention programmes for cardiovascular disease (CVD) and diabetes? The significance of these conditions is clear: CVD claims more deaths worldwide than any other; diabetes is a risk factor for CVD and leading cause of death. A systematic review and framework synthesis were conducted. This novel method for synthesizing qualitative evidence aims to make health psychology theory accessible to implementation science and advance the application of qualitative research findings in evidence-based healthcare. Findings from 14 original studies were coded deductively into the TDF and subsequently an inductive thematic analysis was conducted. Synthesized findings produced six themes relating to: knowledge, beliefs, cues to (in)action, social influences, role and identity, and context. A conceptual model was generated illustrating combinations of factors that produce cues to (in)action. This model demonstrated interrelationships between individual (beliefs and knowledge) and societal (social influences, role and identity, context) factors. Several intervention points were highlighted where factors could be manipulated to produce favourable cues to action. However, a lack of transparency of behavioural components of published interventions needs to be corrected and further evaluations of acceptability in relation to patient experience are required. Further work is needed to test the comprehensiveness of the TDF as an a priori framework for 'policy urgent' questions using 'best fit' framework synthesis. Copyright © 2016 Elsevier Ltd. All rights reserved.

[Hypnosis as a resource in palliative care. A qualitative study of the contribution of hypnosis to the care of oncology patients].

PubMed

Teike Luethi, Fabienne; Currat, Thierry; Spencer, Brenda; Jayet, Nicolas; Cantin, Boris

2012-09-01

Hypnosis is recognised in medicine as an effective complementary therapy. However, few qualitative data are available concerning the benefits it may bring. This qualitative exploratory study aimed to examine the contribution of hypnosis to the care of advanced cancer patients. Results demonstrate that hypnosis is an effective and efficient means of developing the resources of people suffering from serious illness. After an average of four hypnotherapy sessions, patients said they were able to locate previously unexploited resources within themselves and were able to become autonomous in the use of self-hypnosis. The major benefit reported concerned a reduction in anxiety. For patients experiencing anxiety about death, hypnosis allowed them, within a therapeutic environment perceived as safe, to explore different facets of their fears and to develop adaptive strategies. Aside from slight fatigue experienced during the sessions, no adverse side-effects were reported. In conclusion, this study exploring the effects of hypnosis allowed us to identify important benefits for patients suffering from advanced cancer. Consequently, replication on a larger scale is recommended in order to ascertain the extent to which it is possible to generalise from these results and in order better to define the characteristics of patients most likely to benefit from this therapy.

Undergraduate nursing students' transformational learning during clinical training.

PubMed

Melin-Johansson, Christina; Österlind, Jane; Hagelin, Carina Lundh; Henoch, Ingela; Ek, Kristina; Bergh, Ingrid; Browall, Maria

2018-04-02

Undergraduate nursing students encounter patients at the end of life during their clinical training. They need to confront dying and death under supportive circumstances in order to be prepared for similar situations in their future career. To explore undergraduate nursing students' descriptions of caring situations with patients at the end of life during supervised clinical training. A qualitative study using the critical incident technique was chosen. A total of 85 students wrote a short text about their experiences of caring for patients at the end of life during their clinical training. These critical incident reports were then analysed using deductive and inductive content analysis. The theme 'students' transformational learning towards becoming a professional nurse during clinical training' summarises how students relate to patients and relatives, interpret the transition from life to death, feel when caring for a dead body and learn end-of-life caring actions from their supervisors. As a preparation for their future profession, students undergoing clinical training need to confront death and dying while supported by trained supervisors and must learn how to communicate about end-of-life issues and cope with emotional stress and grief.

The myth of the replacement child: parents' stories and practices after perinatal death.

PubMed

Grout, L A; Romanoff, B D

2000-03-01

Parents bereaved by perinatal death adapt to their losses in different ways. When bereaved parents give birth to a child or children subsequent to a perinatal death, their constructions of the family necessarily change. The subsequent child is thought to be at risk of psychopathology (the replacement child syndrome) if parents have not sufficiently grieved their losses. This qualitative interview study examines the family stories told by bereaved parents, with particular attention to how parents represent the dead child and subsequent children in the current family structure. We categorized parents' stories as those which suggested that parents replaced the loss by an emphasis on parenting subsequent children, or maintained a connection to the dead child through storytelling and ritual behavior. The two ways in which parents maintained the connection were to preserve the space in the family that the dead child would have inhabited, or to create an on-going relationship with the dead child for themselves and their subsequent children. There seem to be multiple paths to parenting through bereavement. The place of rituals and memorial behavior is also examined.

Resilience for family carers of advanced cancer patients-how can health care providers contribute? A qualitative interview study with carers.

PubMed

Røen, Ingebrigt; Stifoss-Hanssen, Hans; Grande, Gunn; Brenne, Anne-Tove; Kaasa, Stein; Sand, Kari; Knudsen, Anne Kari

2018-05-01

Caring for advanced cancer patients affects carers' psychological and physical health. Resilience has been defined as "the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat." The aim of this study was to explore factors promoting carer resilience, based on carers' experiences with and preferences for health care provider support. Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers-a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer-patient relation. Health care providers may enhance carers' resilience by a series of simple interventions. Education should address carers' support needs and resilience. Systematic assessment of carers' support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

Soft tissue massage: early intervention for relatives whose family members died in palliative cancer care.

PubMed

Cronfalk, Berit S; Ternestedt, Britt-Marie; Strang, Peter

2010-04-01

This paper explores how bereaved relatives experienced soft tissue massage during the first four months after the death of a family member who was in palliative cancer care. Death of a close family member or friend is recognised as being an emotional and existential turning point in life. Previous studies emphasise need for various support strategies to assist relatives while they are grieving. Qualitative design. Eighteen bereaved relatives (11 women and seven men) received soft tissue massage (25 minutes, hand or foot) once a week for eight weeks. In-depth interviews were conducted after the end of the eight-week periods. Interviews were analysed using a qualitative descriptive content analysis method. Soft tissue massage proved to be helpful and to generate feelings of consolation in the first four months of grieving. The main findings were organised into four categories: (1) a helping hand at the right time, (2) something to rely on, (3) moments of rest and (4) moments of retaining energy. The categories were then conceptualised into this theme: feelings of consolation and help in learning to restructure everyday life. Soft tissue massage was experienced as a commendable source of consolation support during the grieving process. An assumption is that massage facilitates a transition toward rebuilding identity, but more studies in this area are needed. Soft tissue massage appears to be a worthy, early, grieving-process support option for bereaved family members whose relatives are in palliative care.

Mandated reporters' experiences with reporting child maltreatment: a meta-synthesis of qualitative studies.

PubMed

McTavish, Jill R; Kimber, Melissa; Devries, Karen; Colombini, Manuela; MacGregor, Jennifer C D; Wathen, C Nadine; Agarwal, Arnav; MacMillan, Harriet L

2017-10-16

To systematically search for research about the effectiveness of mandatory reporting of child maltreatment and to synthesise qualitative research that explores mandated reporters' (MRs) experiences with reporting. As no studies assessing the effectiveness of mandatory reporting were retrieved from our systematic search, we conducted a meta-synthesis of retrieved qualitative research. Searches in Medline (Ovid), Embase, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Sociological Abstracts, Education Resources Information Center, Criminal Justice Abstracts and Cochrane Library yielded over 6000 citations, which were deduplicated and then screened by two independent reviewers. English-language, primary qualitative studies that investigated MRs' experiences with reporting of child maltreatment were included. Critical appraisal involved a modified checklist from the Critical Appraisal Skills Programme and qualitative meta-synthesis was used to combine results from the primary studies. All healthcare and social-service settings implicated by mandatory reporting laws were included. Included studies crossed nine high-income countries (USA, Australia, Sweden, Taiwan, Canada, Norway, Finland, Israel and Cyprus) and three middle-income countries (South Africa, Brazil and El Salvador). The studies represent the views of 1088 MRs. Factors that influence MRs' decision to report and MRs' views towards and experiences with mandatory reporting of child maltreatment. Forty-four articles reporting 42 studies were included. Findings indicate that MRs struggle to identify and respond to less overt forms of child maltreatment. While some articles (14%) described positive experiences MRs had with the reporting process, negative experiences were reported in 73% of articles and included accounts of harm to therapeutic relationships and child death following removal from their family of origin. The findings of this meta-synthesis suggest that there are many potentially harmful experiences associated with mandatory reporting and that research on the effectiveness of this process is urgently needed. © 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.

Socio-cultural and service delivery dimensions of maternal mortality in rural central India: a qualitative exploration using a human rights lens

PubMed Central

Jat, Tej Ram; Deo, Prakash R.; Goicolea, Isabel; Hurtig, Anna-Karin; San Sebastian, Miguel

2015-01-01

Background Despite the avoidable nature of maternal mortality, unacceptably high numbers of maternal deaths occur in developing countries. Considering its preventability, maternal mortality is being increasingly recognised as a human rights issue. Integration of a human rights perspective in maternal health programmes could contribute positively in eliminating avertable maternal deaths. This study was conducted to explore socio-cultural and service delivery–related dimensions of maternal deaths in rural central India using a human rights lens. Design Social autopsies were conducted for 22 maternal deaths during 2011 in Khargone district in central India. The data were analysed using thematic analysis. The factors associated with maternal deaths were classified by using the ‘three delays’ framework and were examined by using a human rights lens. Results All 22 women tried to access medical assistance, but various factors delayed their access to appropriate care. The underestimation of the severity of complications by family members, gender inequity, and perceptions of low-quality delivery services delayed decisions to seek care. Transportation problems and care seeking at multiple facilities delayed reaching appropriate health facilities. Negligence by health staff and unavailability of blood and emergency obstetric care services delayed receiving adequate care after reaching a health facility. Conclusions The study highlighted various socio-cultural and service delivery–related factors which are violating women's human rights and resulting in maternal deaths in rural central India. This study highlights that, despite the health system's conscious effort to improve maternal health, normative elements of a human rights approach to maternal health (i.e. availability, accessibility, acceptability, and quality of maternal health services) were not upheld. The data and analysis suggest that the deceased women and their relatives were unable to claim their entitlements and that the duty bearers were not successful in meeting their obligations. Based on the findings of our study, we conclude that to prevent maternal deaths, further concentrated efforts are required for better community education, women's empowerment, and health systems strengthening to provide appropriate and timely services, including emergency obstetric care, with good quality. PMID:25840595

Socio-cultural and service delivery dimensions of maternal mortality in rural central India: a qualitative exploration using a human rights lens.

PubMed

Jat, Tej Ram; Deo, Prakash R; Goicolea, Isabel; Hurtig, Anna-Karin; San Sebastian, Miguel

2015-01-01

Despite the avoidable nature of maternal mortality, unacceptably high numbers of maternal deaths occur in developing countries. Considering its preventability, maternal mortality is being increasingly recognised as a human rights issue. Integration of a human rights perspective in maternal health programmes could contribute positively in eliminating avertable maternal deaths. This study was conducted to explore socio-cultural and service delivery-related dimensions of maternal deaths in rural central India using a human rights lens. Social autopsies were conducted for 22 maternal deaths during 2011 in Khargone district in central India. The data were analysed using thematic analysis. The factors associated with maternal deaths were classified by using the 'three delays' framework and were examined by using a human rights lens. All 22 women tried to access medical assistance, but various factors delayed their access to appropriate care. The underestimation of the severity of complications by family members, gender inequity, and perceptions of low-quality delivery services delayed decisions to seek care. Transportation problems and care seeking at multiple facilities delayed reaching appropriate health facilities. Negligence by health staff and unavailability of blood and emergency obstetric care services delayed receiving adequate care after reaching a health facility. The study highlighted various socio-cultural and service delivery-related factors which are violating women's human rights and resulting in maternal deaths in rural central India. This study highlights that, despite the health system's conscious effort to improve maternal health, normative elements of a human rights approach to maternal health (i.e. availability, accessibility, acceptability, and quality of maternal health services) were not upheld. The data and analysis suggest that the deceased women and their relatives were unable to claim their entitlements and that the duty bearers were not successful in meeting their obligations. Based on the findings of our study, we conclude that to prevent maternal deaths, further concentrated efforts are required for better community education, women's empowerment, and health systems strengthening to provide appropriate and timely services, including emergency obstetric care, with good quality.

Effects of naloxone distribution to likely bystanders: Results of an agent-based model.

PubMed

Keane, Christopher; Egan, James E; Hawk, Mary

2018-05-01

Opioid overdose deaths in the US rose dramatically in the past 16 years, creating an urgent national health crisis with no signs of immediate relief. In 2017, the President of the US officially declared the opioid epidemic to be a national emergency and called for additional resources to respond to the crisis. Distributing naloxone to community laypersons and people at high risk for opioid overdose can prevent overdose death, but optimal distribution methods have not yet been pinpointed. We conducted a sequential exploratory mixed methods design using qualitative data to inform an agent-based model to improve understanding of effective community-based naloxone distribution to laypersons to reverse opioid overdose. The individuals in the model were endowed with cognitive and behavioral variables and accessed naloxone via community sites such as pharmacies, hospitals, and urgent-care centers. We compared overdose deaths over a simulated 6-month period while varying the number of distribution sites (0, 1, and 10) and number of kits given to individuals per visit (1 versus 10). Specifically, we ran thirty simulations for each of thirteen distribution models and report average overdose deaths for each. The baseline comparator was no naloxone distribution. Our simulations explored the effects of distribution through syringe exchange sites with and without secondary distribution, which refers to distribution of naloxone kits by laypersons within their social networks and enables ten additional laypersons to administer naloxone to reverse opioid overdose. Our baseline model with no naloxone distribution predicted there would be 167.9 deaths in a six month period. A single distribution site, even with 10 kits picked up per visit, decreased overdose deaths by only 8.3% relative to baseline. However, adding secondary distribution through social networks to a single site resulted in 42.5% fewer overdose deaths relative to baseline. That is slightly higher than the 39.9% decrease associated with a tenfold increase in the number of sites, all distributing ten kits but with no secondary distribution. This suggests that, as long as multiple kits are picked up per visit, adding secondary distribution is at least as effective as increasing sites from one to ten. Combining the addition of secondary distribution with an increase in sites from one to ten resulted in a 61.1% drop in deaths relative to the baseline. Adding distribution through a syringe exchange site resulted in a drop of approximately 65% of deaths relative to baseline. In fact, when enabling distribution through a clean-syringe site, the secondary distribution through networks contributed no additional drops in deaths. Community-based naloxone distribution to reverse opioid overdose may significantly reduce deaths. Optimal distribution methods may include secondary distribution so that the person who picks up naloxone kits can enable others in the community to administer naloxone, as well as targeting naloxone distribution to sites where individuals at high-risk for opioid overdose death are likely to visit, such as syringe-exchange programs. This study design, which paired exploratory qualitative data with agent-based modeling, can be used in other settings seeking to implement and improve naloxone distribution programs. Copyright © 2018 The Author(s). Published by Elsevier B.V. All rights reserved.

Socio-cultural factors, gender roles and religious ideologies contributing to Caesarian-section refusal in Nigeria.

PubMed

Ugwu, Nnanna U; de Kok, Bregje

2015-08-12

The death of women from pregnancy-related causes is a serious challenge that international development initiatives, including the Millennium Development Goals, have been trying to redress for decades. The majority of these pregnancy-related deaths occur in developing countries especially in Sub-Saharan Africa. The provision of Emergency Obstetric Care (EmOC), including Caesarean section (CS) has been identified as one of the key ingredients necessary for the reduction of high maternal mortality ratios. However, it appears that creating access to EmOC facilities is not all that is required to reduce maternal mortality: socio-cultural issues in Sub-Saharan countries including Nigeria seem to deter women from accepting CS. This study seeks to explore some of the socio-cultural concerns that reinforce delays and non-acceptance of CS in a Nigerian community. This is a mixed method study that combined both qualitative and quantitative strategies of enquiry. The hospital's delivery records from 2006-2010 provided data for quantitative analysis. This quantitative data was supplemented with prospective data collected during one month. Semi-structured interviews, focus group discussions (FGD) and informal observations served as the sources of data on the qualitative end. In total, 22% of maternity clients refused CS and more than 90% of the CSs in the focal hospital were emergencies which may indicate late arrival at the hospital after seeking assistance elsewhere. The qualitative analysis reveals that socio-cultural meanings informed by gender and religious ideologies, the relational consequences of having a C-section, and the role of alternative providers are some key factors which influence when, where and whether women will accept C-section or not. There is need to find means of facilitating necessary CS by addressing the prevailing socio-cultural norms and expectations that hinder its acceptance. Engaging and guiding alternative providers (traditional birth attendants and faith healers) who wield much power in their communities, will be important to minimize delays and improve cultural acceptability of CS.

Empowering members of a rural southern community in Nigeria to plan to take action to prevent maternal mortality: A participatory action research project.

PubMed

Esienumoh, Ekpoanwan E; Allotey, Janette; Waterman, Heather

2018-04-01

To facilitate the empowerment of members of a rural community to plan to take action to prevent maternal mortality. Globally, about 300,000 maternal deaths occur yearly. Sub-Saharan Africa and Southern Asia regions account for almost all the deaths. Within those regions, India and Nigeria account for over a third of the global maternal deaths. Problem of maternal mortality in Nigeria is multifaceted. About 80% of maternal deaths are avoidable, given strategies which include skilled attendants, emergency obstetric care and community mobilisation. In this article, a strategy of community empowerment to plan to take action to prevent maternal mortality is discussed. Participatory action research was used. Twelve volunteers were recruited as coresearchers into the study through purposive and snowball sampling who, following an orientation workshop, undertook participatory qualitative data collection with an additional 29 community members. Participatory thematic analysis of the data was undertaken which formed the basis of the plan of action. Community members attributed maternal morbidities and deaths to superstitious causes, delayed referrals by traditional birth attendants, poor transportation and poor resourcing of health facilities. Following critical reflection, actions were planned to empower the people to prevent maternal deaths through community education and advocacy meetings with stakeholders to improve health and transportation infrastructures; training of existing traditional birth attendants in the interim and initiating their collaboration with skilled birth attendants. The community is a resource which if mobilised through the process of participatory action research can be empowered to plan to take action in collaboration with skilled birth attendants to prevent maternal mortality. Interventions to prevent maternal deaths should include community empowerment to have better understanding of their circumstances as well as their collaboration with health professionals. © 2018 John Wiley & Sons Ltd.

Validation of Inverse Seasonal Peak Mortality in Medieval Plagues, Including the Black Death, in Comparison to Modern Yersinia pestis-Variant Diseases

PubMed Central

Welford, Mark R.; Bossak, Brian H.

2009-01-01

Background Recent studies have noted myriad qualitative and quantitative inconsistencies between the medieval Black Death (and subsequent “plagues”) and modern empirical Y. pestis plague data, most of which is derived from the Indian and Chinese plague outbreaks of A.D. 1900±15 years. Previous works have noted apparent differences in seasonal mortality peaks during Black Death outbreaks versus peaks of bubonic and pneumonic plagues attributed to Y. pestis infection, but have not provided spatiotemporal statistical support. Our objective here was to validate individual observations of this seasonal discrepancy in peak mortality between historical epidemics and modern empirical data. Methodology/Principal Findings We compiled and aggregated multiple daily, weekly and monthly datasets of both Y. pestis plague epidemics and suspected Black Death epidemics to compare seasonal differences in mortality peaks at a monthly resolution. Statistical and time series analyses of the epidemic data indicate that a seasonal inversion in peak mortality does exist between known Y. pestis plague and suspected Black Death epidemics. We provide possible explanations for this seasonal inversion. Conclusions/Significance These results add further evidence of inconsistency between historical plagues, including the Black Death, and our current understanding of Y. pestis-variant disease. We expect that the line of inquiry into the disputed cause of the greatest recorded epidemic will continue to intensify. Given the rapid pace of environmental change in the modern world, it is crucial that we understand past lethal outbreaks as fully as possible in order to prepare for future deadly pandemics. PMID:20027294

"Parents a dead end life": The main experiences of parents of children with leukemia.

PubMed

Jadidi, Rahmatollah; Hekmatpou, Davood; Eghbali, Aziz; Memari, Fereshteh; Anbari, Zohreh

2014-11-01

The quantitative studies show that due to the widespread prevalence, high death rate, high treatment expenses, and long hospital stay, leukemia influences the families and their children to a great extent. In this regard, no qualitative study has been conducted in Iran. So, this study was conducted in Arak in 2011 with the aim of expressing the experiences of the parents whose children suffered from leukemia. Using qualitative research approach, by applying content analysis method, 22 participants were interviewed in two educational hospitals during 2 months. The study was started by purposive sampling and continued by theoretical one. The data were analyzed based on the content analysis method. Data analysis showed that insolvency, knapsack problems, cancer secrecy, trust on God, self-sacrifice, adaptation, medical malpractice, and hospital facilities were the level 3 codes of parents' experiences and "parents a dead end life" was the main theme of this study. In this study, the experiences of the parents whose children suffered from cancer were studied deeply by the use of qualitative method, especially by the use of resources syncretism rather than studying quantitatively. Parents a dead end life emerged as the main theme of this study, emphasizing the necessity of paying further attention to the parents. On the other hand, making more use of parents' experiences and encouraging them helps make the treatment more effective. It is suggested that these experiences be shared with parents in the form of pamphlets distributed right at the beginning of the treatment process.

Understanding the patient experience through the power of film: A mixed method qualitative research study.

PubMed

Ogston-Tuck, Sherri; Baume, Kath; Clarke, Chris; Heng, Simon

2016-11-01

For decades film has proved to be a powerful form of communication. Whether produced as entertainment, art or documentary, films have the capacity to inform and move us. Films are a highly attractive teaching instrument and an appropriate teaching method in health education. It is a valuable tool for studying situations most transcendental to human beings such as pain, disease and death. The objectives were to determine how this helps students engage with their role as health care professionals; to determine how they view the personal experience of illness, disease, disability or death; and to determine how this may impact upon their provision of patient care. The project was underpinned by the film selection determined by considerate review, intensive scrutiny, contemplation and discourse by the research team. 7 films were selected, ranging from animation; foreign, documentary, biopic and Hollywood drama. Each film was shown discretely, in an acoustic lecture theatre projected onto a large screen to pre-registration student nurses (adult, child and mental health) across each year of study from different cohorts (n=49). A mixed qualitative method approach consisted of audio-recorded 5-minute reactions post film screening; coded questionnaires; and focus group. Findings were drawn from the impact of the films through thematic analysis of data sets and subjective text condensation categorised as: new insights looking through patient eyes; evoking emotion in student nurses; spiritual care; going to the moves to learn about the patient experience; self discovery through films; using films to link theory to practice. Deeper learning through film as a powerful medium was identified in meeting the objectives of the study. Integration of film into pre registration curriculum, pedagogy, teaching and learning is recommended. The teaching potential of film stems from the visual process linked to human emotion and experience. Its impact has the power to not only help in learning the values that underpin nursing, but also for respecting the patient experience of disease, disability, death and its reality. Copyright © 2016 Elsevier Ltd. All rights reserved.

Life course adversity in the lives of formerly homeless persons with serious mental illness: context and meaning.

PubMed

Padgett, Deborah K; Smith, Bikki Tran; Henwood, Benjamin F; Tiderington, Emmy

2012-07-01

This qualitative study assessed the frequency and subjective meaning of adverse experiences using case study analyses of interviews with 38 formerly homeless adults with co-occurring serious mental illness (SMI) and substance abuse histories. Adverse life events were inventoried using an adaptation of Lloyd and Turner's (2008) 41-item checklist. Participants averaged 8.8 adverse events, with approximately one-third having experienced incarceration (37%), suicidality (32%), abandonment by one or both parents (30%), and death of their mother (34%). Cross-case analyses yielded 3 themes: social losses because of death and estrangement; the significance of chronic stressors as well as acute events; and the cumulative lifetime nature of adversity. Findings suggest that life course experiences of trauma and loss have a cumulative influence in the lives of this population in addition and in relation to SMI, substance abuse, and homelessness. In this context, the mental health recovery movement should address prior adverse experiences beyond comorbid diagnoses in this population. © 2012 American Orthopsychiatric Association.

Barriers and facilitators to antiretroviral therapy adherence among Peruvian adolescents living with HIV: A qualitative study

PubMed Central

Wong, Milagros; Muñoz, Maribel; Valle, Emiliano; Leon, Segundo R.; Díaz Perez, Dayana; Kolevic, Lenka; Franke, Molly

2018-01-01

AIDS deaths among adolescents are increasing globally. This qualitative study investigated the barriers and facilitators to cART adherence among Peruvian adolescents living with HIV. Guided by a social ecological model, we analyzed transcripts from 24 psychosocial support groups for HIV-positive adolescents aged 13–17 years and 15 individual, in-depth interviews with cART providers and caregivers to identify the barriers and facilitators to cART adherence at the individual, family/caregiver and hospital levels. Most barriers and facilitators to cART adherence clustered at the individual and family/caregiver levels, centering on support provided to adolescents; history of declining health due to suboptimal cART adherence; side effects from antiretroviral drugs; and cART misinformation. Interventions to support adolescent HIV cART adherence should begin at the individual and family/caregiver levels and include an educational component. No adolescent living with HIV should die from AIDS in an era of accessible cART. PMID:29447226

Attitudes toward Infection Prophylaxis in Pediatric Oncology: A Qualitative Approach

PubMed Central

Diorio, Caroline; Tomlinson, Deborah; Boydell, Katherine M.; Regier, Dean A.; Ethier, Marie-Chantal; Alli, Amanda; Alexander, Sarah; Gassas, Adam; Taylor, Jonathan; Kellow, Charis; Mills, Denise; Sung, Lillian

2012-01-01

Background The risks and benefits of infection prophylaxis are uncertain in children with cancer and thus, preferences should be considered in decision making. The purpose of this report was to describe the attitudes of parents, children and healthcare professionals to infection prophylaxis in pediatric oncology. Methods The study was completed in three phases: 1) An initial qualitative pilot to identify the main attributes influencing the decision to use infection prophylaxis, which were then incorporated into a discrete choice experiment; 2) A think aloud during the discrete choice experiment in which preferences for infection prophylaxis were elicited quantitatively; and 3) In-depth follow up interviews. Interviews were recorded verbatim and analyzed using an iterative, thematic analysis. Final themes were selected using a consensus approach. Results A total of 35 parents, 22 children and 28 healthcare professionals participated. All three groups suggested that the most important factor influencing their decision making was the effect of prophylaxis on reducing the chance of death. Themes of importance to the three groups included antimicrobial resistance, side effects of medications, the financial impact of outpatient prophylaxis and the route and schedule of administration. Conclusion Effect of prophylaxis on risk of death was a key factor in decision making. Other identified factors were antimicrobial resistance, side effects of medication, financial impact and administration details. Better understanding of factors driving decision making for infection prophylaxis will help facilitate future implementation of prophylactic regiments. PMID:23112849

Attitudes toward infection prophylaxis in pediatric oncology: a qualitative approach.

PubMed

Diorio, Caroline; Tomlinson, Deborah; Boydell, Katherine M; Regier, Dean A; Ethier, Marie-Chantal; Alli, Amanda; Alexander, Sarah; Gassas, Adam; Taylor, Jonathan; Kellow, Charis; Mills, Denise; Sung, Lillian

2012-01-01

The risks and benefits of infection prophylaxis are uncertain in children with cancer and thus, preferences should be considered in decision making. The purpose of this report was to describe the attitudes of parents, children and healthcare professionals to infection prophylaxis in pediatric oncology. THE STUDY WAS COMPLETED IN THREE PHASES: 1) An initial qualitative pilot to identify the main attributes influencing the decision to use infection prophylaxis, which were then incorporated into a discrete choice experiment; 2) A think aloud during the discrete choice experiment in which preferences for infection prophylaxis were elicited quantitatively; and 3) In-depth follow up interviews. Interviews were recorded verbatim and analyzed using an iterative, thematic analysis. Final themes were selected using a consensus approach. A total of 35 parents, 22 children and 28 healthcare professionals participated. All three groups suggested that the most important factor influencing their decision making was the effect of prophylaxis on reducing the chance of death. Themes of importance to the three groups included antimicrobial resistance, side effects of medications, the financial impact of outpatient prophylaxis and the route and schedule of administration. Effect of prophylaxis on risk of death was a key factor in decision making. Other identified factors were antimicrobial resistance, side effects of medication, financial impact and administration details. Better understanding of factors driving decision making for infection prophylaxis will help facilitate future implementation of prophylactic regiments.

Grief and loss for patients before and after heart transplant.

PubMed

Poole, Jennifer; Ward, Jennifer; DeLuca, Enza; Shildrick, Margrit; Abbey, Susan; Mauthner, Oliver; Ross, Heather

2016-01-01

The purpose of the study was to examine the loss and grief experiences of patients waiting for and living with new hearts. There is much scholarship on loss and grief. Less attention has been paid to these issues in clinical transplantation, and even less on the patient experience. Part of a qualitative inquiry oriented to the work of Merleau-Ponty, a secondary analysis was carried out on audiovisual data from interviews with thirty participants. Patients experience loss and three forms of grief. Pre-transplant patients waiting for transplant experience loss and anticipatory grief related to their own death and the future death of their donor. Transplanted patients experience long-lasting complicated grief with respect to the donor and disenfranchised grief which may not be sanctioned. Loss as well as anticipatory, complicated and disenfranchised grief may have been inadvertently disregarded or downplayed. More research and attention is needed. Copyright © 2016 Elsevier Inc. All rights reserved.

Impacts on employment, finances, and lifestyle for working age people facing an expected premature death: A systematic review.

PubMed

Kochovska, Slavica; Luckett, Tim; Agar, Meera; Phillips, Jane L

2018-06-01

ABSTRACTObjective:The working ages (25-65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families. A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children. Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease. Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.

An escape from agony: a qualitative psychological autopsy study of women's suicide in a post-conflict northern Uganda.

PubMed

Kizza, Dorothy; Loa Knizek, Birthe; Kinyanda, Eugene; Hjelmeland, Heidi

2012-09-05

We set out to investigate suicide among women in a post-conflict context in Northern Uganda using qualitative psychological autopsy interviews. Three to five relatives and friends for each of the three suicides recruited were interviewed (N=11). Through interpretative phenomenological analysis (IPA) we found that the women all had been through traumatic experiences attributable to the protracted war/conflict between the rebel groups and Ugandan Government armed forces. Nevertheless, the decision of self-inflicted death seemed to have been due to a combination of unpleasant experiences/events that prevailed within the last 3 months prior to the suicide. These experiences are summarized in two broad themes: No control in life and No care. Changes in the traditional gender roles, men's quest for their lost masculinity, and women's attempt to fight for their rights that was perceived as a cultural transgression contributed to the women's suicides.

An escape from agony: A qualitative psychological autopsy study of women's suicide in a post-conflict Northern Uganda

PubMed Central

Knizek, Birthe Loa; Kinyanda, Eugene; Hjelmeland, Heidi

2012-01-01

We set out to investigate suicide among women in a post-conflict context in Northern Uganda using qualitative psychological autopsy interviews. Three to five relatives and friends for each of the three suicides recruited were interviewed (N=11). Through interpretative phenomenological analysis (IPA) we found that the women all had been through traumatic experiences attributable to the protracted war/conflict between the rebel groups and Ugandan Government armed forces. Nevertheless, the decision of self-inflicted death seemed to have been due to a combination of unpleasant experiences/events that prevailed within the last 3 months prior to the suicide. These experiences are summarized in two broad themes: No control in life and No care. Changes in the traditional gender roles, men's quest for their lost masculinity, and women's attempt to fight for their rights that was perceived as a cultural transgression contributed to the women's suicides. PMID:22989691

Adolescents' Views of Guns in a High-Violence Community

ERIC Educational Resources Information Center

Black, Sally; Hausman, Alice

2008-01-01

Firearms account for the majority of deaths among young Black men in America. This article presents a qualitative investigation of youth temptations, emotional reactions, and subsequent behavior with respect to guns. Twenty-three youth enrolled in a community-based firearm reduction program have participated in interviews on retrospective…

Maternal complications in a geographically challenging and hard to reach district of Bangladesh: a qualitative study

PubMed Central

Biswas, Animesh; Dalal, Koustuv; Abdullah, Abu Sayeed Md; Gifford, Mervyn; Halim, MA

2016-01-01

Background: Maternal complications contribute to maternal deaths in developing countries. Bangladesh still has a high prevalence of maternal mortality, which is often preventable. There are some geographically challenging and hard to reach rural districts in Bangladesh and it is difficult to get information about maternal complications in these areas. In this study, we examined the community lay knowledge of possible pregnancy complications. We also examined the common practices associated with complications and we discuss the challenges for the community. Methods: The study was conducted in Moulvibazar of north east Bangladesh, a geographically challenged, difficult to reach district. Qualitative methods were used to collect the information. Pregnant women, mothers who had recently delivered, their guardians and traditional birth attendants participated in focus group discussions. Additionally, in-depth interviews were conducted with the family members. Thematic analyses were performed. Results: The study revealed that there is a lack of knowledge of maternal complications. In the majority of cases, the mothers did not receive proper treatment for maternal complications.   There are significant challenges that these rural societies need to address: problems of ignorance, traditional myths and family restrictions on seeking better treatment. Moreover, traditional birth attendants and village doctors also have an important role in assuring appropriate, effective and timely treatment. Conclusions:  The rural community lacks adequate knowledge on maternal complications.  Reduction of the societal barriers including barriers within the family can improve overall practices. Moreover, dissemination of adequate information to the traditional birth attendant and village doctors may improve the overall situation, which would eventually help to reduce maternal deaths. PMID:27853517

An Existential Perspective on Death Anxiety, Retirement, and Related Research Problems.

PubMed

Osborne, John W

2017-06-01

Aspects of existentialism relevant to existence and death anxiety (DA) are discussed. Included are the "thrownness" of existence, being-with-others, the motivational influence of inevitable death, the search for meaning, making the most of existence by taking responsibility for one's own life, and coping with existential isolation. The attempted separation of DA from object anxiety is a significant difficulty. The correlations among age, gender, and DA are variable. Personality and role-oriented problems in the transition to retirement are discussed along with Erikson's notion of "generativity" as an expression of the energy and purpose of mid-life. Furthermore, methodological and linguistic problems in DA research are considered. The article suggests qualitative methodologies as an interpersonal means of exploring DA within the contexts of psychotherapy and counselling.

Migrant deaths at the Arizona-Mexico border: Spatial trends of a mass disaster.

PubMed

Giordano, Alberto; Spradley, M Katherine

2017-11-01

Geographic Information Science (GIScience) technology has been used to document, investigate, and predict patterns that may be of utility in both forensic academic research and applied practice. In examining spatial and temporal trends of the mass disaster that is occurring along the U.S.-Mexico border, other researchers have highlighted predictive patterns for search and recovery efforts as well as water station placement. The purpose of this paper is to use previously collected spatial data of migrant deaths from Arizona to address issues of data uncertainty and data accuracy that affect our understanding of this phenomenon, including local and federal policies that impact the U.S.-Mexico border. The main objective of our study was to explore how the locations of migrant deaths have varied over time. Our results confirm patterns such as a lack of relationship between Border Patrol apprehensions and migrant deaths, as well as highlight new patterns such as the increased positional accuracy of migrant deaths recorded closer to the border. This paper highlights the importance of using positionally accurate data to detect spatio-temporal trends in forensic investigations of mass disasters: without qualitative and quantitative information concerning the accuracy of the data collected, the reliability of the results obtained remains questionable. We conclude by providing a set of guidelines for standardizing the collection and documentation of migrant remains at the U.S.-Mexico border. Copyright © 2017 Elsevier B.V. All rights reserved.

Nursing Care at the Time of Death: A Bathing and Honoring Practice.

PubMed

Rodgers, Debra; Calmes, Beth; Grotts, Jonathan

2016-05-01

To explore family members' experience of a bathing and honoring practice after a loved one's death in the acute care setting.
. A descriptive, qualitative design using a semistructured telephone interview script.
. The Inpatient Adult Oncology Unit at Santa Barbara Cottage Hospital in California. 
. 13 family members who participated in the bathing and honoring practice after their loved one's death on the oncology unit.
. Participants were selected by purposive sampling and interviewed by telephone three to six months after their loved one's death. Interviews using a semistructured script with open-ended questions were recorded, transcribed, verified, and analyzed using phenomenologic research techniques to identify common themes of experience.
. 24 first-level themes and 11 superordinate themes emerged from the data. All participants indicated that the bathing and honoring practice was a positive experience and supported the grieving process. The majority found the practice to be meaningful and stated that it honored their loved one. Many expressed that the bathing and honoring was spiritually significant in a nondenominational way and that they hope it will be made available to all families of patients who die in the hospital. 
. After patient death, a bathing and honoring practice with family member participation is positive and meaningful, and it supports family members' initial grieving.
. This study is a first step toward establishing specific nursing interventions as evidence-based practice that can be incorporated in routine nursing care for patients and families at the end of life.

Parental Physical Proximity in End-of-Life Care in the PICU.

PubMed

Falkenburg, Jeannette L; Tibboel, Dick; Ganzevoort, Ruard R; Gischler, Saskia; Hagoort, Jacobus; van Dijk, Monique

2016-05-01

Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay physically close. This study explores in what sense physical aspects of end-of-life care in the PICU influence the parent-child relationship. Retrospective, qualitative interview study. Level 3 PICU in Erasmus Medical Center in the Netherlands. Thirty-six parents of 20 children who had died in this unit 5 years previously. Parents vividly remembered the damage done to the child's physical appearance, an inevitable consequence of medical treatment. They felt frustrated and hurt when they could not hold their child. Yet they felt comforted if facilitated to be physically close to the dying child, like lying with the child in one bed, holding the child in the hour of death, and washing the child after death. End-of-life treatment in the PICU presents both a barrier and an opportunity for parents to stay physically connected to their child. Parents' experiences suggest that aspects of physicality in medical settings deserve more attention. Better understanding of the significance of bodily aspects-other than pain and symptom management-improves end-of-life support and should be part of the humane approach to families.

[Silence pact from the perspective of caretakers of palliative care patients].

PubMed

Cejudo López, Ángela; López López, Begoña; Duarte Rodríguez, Miguel; Crespo Serván, María Pilar; Coronado Illescas, Concepción; de la Fuente Rodríguez, Carlota

2015-01-01

To determine why terminally-ill patients, family caregivers and health care providers make a pact of silence about the terminal status of the patient, and to identify the attitudes, experiences and opinions of family caregivers concerning the conspiracy of silence in palliative care. A qualitative phenomenological study based on an interpretive analysis, conducted in Primary Health Care, Seville, Spain. Study dimensions: knowledge of the diagnosis and prognosis of the condition; disclosure of information; reaction to information received, feelings and approach to death; information disclosed to the patient and reasons behind partial disclosure; communication between patients, families, and health care providers. Family caregivers of patients on palliative care suspicious about a pact of silence. Family caregivers hamper professional-patient communication; use of deceit to conceal the truth; suspicion that the patient knows the truth; the clinician conceals the truth; paternalist attitudes; feelings of sadness, grief, resignation, acceptance of the disease. The pact of silence has negative effects on coping with death, quality of life in the last days of life, and mourning. Communication between patients, health care providers, and families should be improved to prevent the pact of silence, and help patients cope with death. Copyright © 2015 Elsevier España, S.L.U. All rights reserved.

[Experiences of Individuals With Suicidal Ideation and Attempts].

PubMed

Rendón-Quintero, Eduardo; Rodríguez-Gómez, Rodolfo

2016-01-01

Suicide is a major public health problem. It covers about half of violent deaths and results in approximately one million deaths annually. Although completed suicide rates in Colombia are relatively low when compared with other countries, suicidal behavior, represented not only by completed suicide, is a significant mental health problem. To understand life experiences of a group of subjects related to the phenomenon of ideation and suicide attempt. A qualitative study with a psychodynamic approach. In-depth interviews were conducted in order to explore thought processes, emotions, motivations and experiences that underlie and accompany the suicide attempt. Five women and 3 men were interviewed. The average age was 29 years. The exploration of subjective experiences in the present study showed that loneliness and psychic pain were linked to hopelessness, pessimism and discouragement. Also, the illusion of death represents an invitation to suicide attempt. It is important to consider the subjective assessment that patients with suicidal risk make of their depression and stressful life situations. Additionally, the concepts of loneliness and psychic pain have a leading role in the interaction between discourse and the experiences of the participants interviewed. Copyright © 2015 Asociación Colombiana de Psiquiatría. Publicado por Elsevier España. All rights reserved.

Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue.

PubMed

Meier, Emily A; Gallegos, Jarred V; Thomas, Lori P Montross; Depp, Colin A; Irwin, Scott A; Jeste, Dilip V

2016-04-01

There is little agreement about what constitutes good death or successful dying. The authors conducted a literature search for published, English-language, peer-reviewed reports of qualitative and quantitative studies that provided a definition of a good death. Stakeholders in these articles included patients, prebereaved and bereaved family members, and healthcare providers (HCPs). Definitions found were categorized into core themes and subthemes, and the frequency of each theme was determined by stakeholder (patients, family, HCPs) perspectives. Thirty-six studies met eligibility criteria, with 50% of patient perspective articles including individuals over age 60 years. We identified 11 core themes of good death: preferences for a specific dying process, pain-free status, religiosity/spirituality, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with HCP, and other. The top three themes across all stakeholder groups were preferences for dying process (94% of reports), pain-free status (81%), and emotional well-being (64%). However, some discrepancies among the respondent groups were noted in the core themes: Family perspectives included life completion (80%), quality of life (70%), dignity (70%), and presence of family (70%) more frequently than did patient perspectives regarding those items (35%-55% each). In contrast, religiosity/spirituality was reported somewhat more often in patient perspectives (65%) than in family perspectives (50%). Taking into account the limitations of the literature, further research is needed on the impact of divergent perspectives on end-of-life care. Dialogues among the stakeholders for each individual must occur to ensure a good death from the most critical viewpoint-the patient's. Copyright © 2016 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

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.

Living with burn scars caused by self-immolation among women in Iraqi Kurdistan: A qualitative study.

PubMed

Mirlashari, Jila; Nasrabadi, Alireza Nikbakht; Amin, Pakestan Mohammad

2017-03-01

Patients with burns have to live with a variety of long-term physical and psychosocial consequences. Burns lead to prolonged hospital stay, disfiguring scars, disability, and even death. Since self-immolation is common in women of Iraqi Kurdistan, the present study sought to explore the experiences of women living with scars caused by self-immolation. This paper was part of a qualitative research study. A purposive sample of 18 female self-immolation survivors from Iraqi Kurdistan was selected, and 21 individual interviews were conducted and analyzed using conventional content analysis. Four categories emerged during the data analysis: (1) feelings of disbelief, regret, and anger caused by post-burn scars; (2) desperately seeking solutions; (3) grief due to disappointment and surrender to despair; and (4) rejection and isolation. In conclusion, individuals with scars and disfigurements sometimes adopted inappropriate measures to deal with the psychological problems caused by others' behaviors and wrong perceptions. Educational and support programs are hence indicated to promote awareness levels of self-immolation survivors, their families, and the whole society. Copyright © 2016 Elsevier Ltd and ISBI. All rights reserved.

"If you cannot tolerate that risk, you should never become a physician": a qualitative study about existential experiences among physicians.

PubMed

Aase, M; Nordrehaug, J E; Malterud, K

2008-11-01

Physicians are exposed to matters of existential character at work, but little is known about the personal impact of such issues. To explore how physicians experience and cope with existential aspects of their clinical work and how such experiences affect their professional identities, a qualitative study using individual semistructured interviews has analysed accounts of their experiences related to coping with such challenges. Analysis was by systematic text condensation. The purposeful sample comprised 10 physicians (including three women), aged 33-66 years, residents or specialists in cardiology or cardiothoracic surgery, working in a university hospital with 24-hour emergency service and one general practitioner. Participants described a process by which they were able to develop a capacity for coping with the existential challenges at work. After episodes perceived as shocking or horrible earlier in their career, they at present said that they could deal with death and mostly keep it at a distance. Vulnerability was closely linked to professional responsibility and identity, perceived as a burden to be handled. These demands were balanced by an experience of meaning related to their job, connected to making a difference in their patients' lives. Belonging to a community of their fellows was a presupposition for coping with the loneliness and powerlessness related to their vulnerable professional position. Physicians' vulnerability facing life and death has been underestimated. Belonging to caring communities may assist growth and coping on exposure to existential aspects of clinical work and developing a professional identity.

Bereaved relatives’ experiences during the incurable phase of cancer: a qualitative interview study

PubMed Central

Wijnhoven, Marleen N; Terpstra, Wim E; van Rossem, Ronald; Haazer, Carolien; Gunnink-Boonstra, Nicolette; Sonke, Gabe S; Buiting, Hilde M

2015-01-01

Objective To examine bereaved relatives’ experiences from time of diagnosis of incurable cancer until death with specific emphasis on their role in the (end-of-life) decision-making concerning chemotherapy. Design Qualitative interview study. Setting Hospital-based. Participants and methods In-depth interviews with 15 close relatives of patients who died from non-small cell lung cancer or pancreatic cancer, using a thematic content analysis. Results All relatives reported that patients’ main reason to request chemotherapy was the possibility to prolong life. Relatives reported that patients receiving chemotherapy had more difficulty to accept the incurable nature of their disease than patients who did not. They mostly followed the patients’ treatment wish and only infrequently suggested ceasing chemotherapy (because of side effects) despite sometimes believing that this would be a better option. Relatives continuously tried to support the patient in either approaching the death or in attaining hope to continue life satisfactorily. Most relatives considered the chemotherapy period meaningful, since it sparked patients’ hope and was what patients wanted. Cessation of chemotherapy caused a relief but coincided with physical deterioration and an increased caregivers’ role; many relatives recalled this latter period as more burdensome. Conclusions Relatives tend to follow patients’ wish to continue or cease chemotherapy, without expressing their own feelings, although they were more inclined to opt cessation. They experience a greater caregiver role after cessation and their feelings of responsibility associated with the disease can be exhausting. More attention is needed to reduce relatives’ distress at the end of life, also to fully profit from this crucial form of (informal) healthcare. PMID:26608635

The suffering in silence of older parents whose child died of cancer: A qualitative study.

PubMed

Van Humbeeck, Liesbeth; Dillen, Let; Piers, Ruth; Grypdonck, Mieke; Van Den Noortgate, Nele

2016-01-01

As life expectancy grows, the death of an adult child becomes a highly prevalent problem for older adults. The present study is based on nine interviews and explores the experience of parents (≥70 years) outliving an adult child. The bereaved parents described some silencing processes constraining their expression of grief. When an adult dies, the social support system nearly automatically directs its care towards the bereaved nuclear family. Parental grief at old age is therefore often not recognized and/or acknowledged. Health care providers should be sensitive to the silent grief of older parents both in geriatric and oncology care settings.

A Qualitative Exploration of Self-Learning to Improve Alcoholic Beverage Server Practices

ERIC Educational Resources Information Center

Willingham, Mark

2016-01-01

Waiters who serve alcoholic beverages at the majority of bars and restaurants in the United States are apt to serve alcohol to patrons who are visually intoxicated, notwithstanding laws prohibiting such service. Adverse effects of this practice include patron injuries, deaths, and law violations resulting in fines, incarceration, and lawsuits.…

Barriers to early presentation and diagnosis of breast cancer among African women living in sub-Saharan Africa

PubMed Central

Akuoko, Cynthia Pomaa; Armah, Ernestina; Sarpong, Theresa; Quansah, Dan Yedu; Amankwaa, Isaac

2017-01-01

Background Breast cancer (BC) has been described as the leading cause of cancer deaths among women especially in the developing world including sub Saharan Africa (SSA). Delayed presentation and late diagnosis at health facilities are parts of the contributing factors of high BC mortality in Africa. This review aimed to appraise the contributing factors to delayed breast cancer presentation and diagnosis among SSA women. Methods Five databases encompassing medical and social sciences were systematically searched using predefined search terms linked with breast cancer presentation and diagnosis and sub Saharan Africa. Reference lists of relevant papers were also hand searched. Quality of quantitative and qualitative articles were assessed using the National Institute of Health (NIH) Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies and the Critical Appraisal Skills Programme (CASP) quality appraisal checklist. Thematic analysis was used to synthesize the qualitative studies to integrate findings. Results Fourteen (14) quantitative studies, two (2) qualitative studies and one (1) mixed method study merited inclusion for analysis. This review identified low knowledge of breast cancer among SSA women. This review also found lack of awareness of early detection treatment, poor perception of BC, socio-cultural factors such as belief, traditions and fear as factors impacting African women’s health seeking behavior in relation to breast cancer. Conclusion Improving African women’s knowledge and understanding will improve behaviors related to breast cancer and facilitate early presentation and detection and enhance proper management and treatment of breast cancer. PMID:28192444

Social autopsy for identifying causes of adult mortality

PubMed Central

Gupta, Mamta; Kaur, Manmeet; Lakshmi, P. V. M.; Prinja, Shankar; Singh, Tarundeep; Sirari, Titiksha; Kumar, Rajesh

2018-01-01

Verbal autopsy methods have been developed to determine medical causes of deathforprioritizing disease control programs. Additional information on social causesmay facilitate designing of more appropriate prevention strategies. Use of social autopsy in investigations of causes of adult deaths has been limited. Therefore, acommunity-based study was conducted in NandpurKalour Block of Fatehgarh Sahib District in Punjab (India)for finding social causes of adult deaths. An integrated verbal and social autopsy toolwas developed and verbal autopsies of 600 adult deaths, occurring over a reference period of one year, were conducted in 2014. Quantitative analysis described the socio-demographic characteristics of the deceased, number and type of consultations from health care providers, and type of care received during illness. Qualitative data was analyzed to find out social causes of death by thematic analysis. The median duration of illness from symptom onset till death was 9 days (IQR = 1–45 days). At the onset of illness, 72 (12%) deceased utilized home remedies and 424 (70.7%)received care from a clinic/hospital, and 104 (17.3%) died withoutreceiving any care. The number of medical consultations varied from one to six (median = 2). The utilization of government health facilities and qualified allopathic doctor increased with each consultation (p value<0.05). The top five social causes of adult deaths in a rural area of Punjab in India. (1) Non availability of medical practitioner in the vicinity, (2) communication gaps between doctor and patient on regular intake of medication, (3) delayed referral by service provider, (4) poor communication with family on illness, and (5) perception of illness to be ‘mild’ by the family or care taker. To conclude, social autopsy tool should be integrated with verbal autopsy tool for identification of individual, community, and health system level factors associated with adult mortality. PMID:29851982

Meanings and purposes of caring for a family member: an autoethnography.

PubMed

Hoppes, Steve

2005-01-01

Engagement in two interlinked areas of occupation, familial social participation and caring for my father at the end of his life, led to a journey of self-discovery. A qualitative research methodology, autoethnography, is used to develop a narrative that examines engagement in these two occupations before, during, and after my father's illness and death. I discuss meanings and purposes of familial social participation and caregiving, suggesting that transforming fear of death to awareness of death is a central purpose of caregiving. Implications for therapists and caregivers include considerations about the value of occupation, discussion of a continuum of caregiving, examination of boundaries when caring for a parent, thoughts about the roles of altruism, love, anger, and "bad faith" in caregiving, and analysis of sons as caregivers for fathers. Further research on meanings and purposes of caregiving is proposed.

“Parents a dead end life”: The main experiences of parents of children with leukemia

PubMed Central

Jadidi, Rahmatollah; Hekmatpou, Davood; Eghbali, Aziz; Memari, Fereshteh; Anbari, Zohreh

2014-01-01

Background: The quantitative studies show that due to the widespread prevalence, high death rate, high treatment expenses, and long hospital stay, leukemia influences the families and their children to a great extent. In this regard, no qualitative study has been conducted in Iran. So, this study was conducted in Arak in 2011 with the aim of expressing the experiences of the parents whose children suffered from leukemia. Materials and Methods: Using qualitative research approach, by applying content analysis method, 22 participants were interviewed in two educational hospitals during 2 months. The study was started by purposive sampling and continued by theoretical one. The data were analyzed based on the content analysis method. Resluts: Data analysis showed that insolvency, knapsack problems, cancer secrecy, trust on God, self-sacrifice, adaptation, medical malpractice, and hospital facilities were the level 3 codes of parents’ experiences and “parents a dead end life” was the main theme of this study. Conclusion: In this study, the experiences of the parents whose children suffered from cancer were studied deeply by the use of qualitative method, especially by the use of resources syncretism rather than studying quantitatively. Parents a dead end life emerged as the main theme of this study, emphasizing the necessity of paying further attention to the parents. On the other hand, making more use of parents’ experiences and encouraging them helps make the treatment more effective. It is suggested that these experiences be shared with parents in the form of pamphlets distributed right at the beginning of the treatment process. PMID:25558257

Knowledge, attitudes and practices on adolescent vaccination among parents, teachers and adolescents in Africa: a systematic review protocol

PubMed Central

2014-01-01

Background Vaccines are the most successful and cost-effective public health interventions available to avert vaccine-preventable diseases and deaths. Despite progress in the field of adolescent health, many young people in Africa still get sick and die from vaccine-preventable diseases due to lack of vaccination. Parents, adolescents and teachers are key players with regard to implementation of adolescent vaccination policies. Therefore, understanding their knowledge, attitudes and practices towards adolescent vaccination may provide clues on what can be done to improve vaccine uptake among adolescents. The aim of this study is to conduct a qualitative and quantitative systematic review on knowledge, attitudes and practices on adolescent vaccination among parents, teachers and adolescents in Africa. Methods We will include both quantitative and qualitative primary studies. Eligible quantitative studies include both intervention and observational studies. Qualitative studies to be included are focus group discussions, direct observations, in-depth interviews and case ethnographic studies. We will search PubMed, Cochrane Central Register of Controlled Trials, Scopus, Web of Science, WHOLIS, Africa Wide and CINAHL for eligible studies with no time and language limits. We will also check reference lists of included studies for other eligible reports. Two authors will independently screen the search output, select studies and extract data, resolving discrepancies by consensus and discussion. We will analyse qualitative data using thematic analysis where applicable, and quantitative studies findings will be presented in a narrative synthesis form based on the outcomes. Discussion The findings from this systematic review will guide the identification of gaps on knowledge, attitudes and practices among the key role players on adolescent vaccination. We anticipate that our findings will guide the development of adolescent-focused vaccination policy in Africa, which is virtually non-existent at present. Systematic review registration This review is registered with PROSPERO, registration number CRD42014010395. PMID:25200458

Reading the Bible for guidance, comfort, and strength during stressful life events.

PubMed

Hamilton, Jill B; Moore, Angelo D; Johnson, Khishaana A; Koenig, Harold G

2013-01-01

The use of religious practices to promote mental health among African Americans is well documented. African Americans are more likely to report strong religious affiliations and to use religion over prescribed medications for mental health problems. However, few studies have explored how African Americans use religious practices in response to stressful life events. The aim of this study is to examine how African American women and men find comfort in using scripture passages from The Bible. Fifty-four African American adults residing in the Southeastern United States participated in a qualitative descriptive study using open-ended semistructured interviews. Participants were asked to describe their use of scripture passages from The Bible and the personal meanings associated with these scriptures in the context of a family death or life-threatening illness. These participants used scripture passages categorized as God as Protector, God as Beneficent, Praise and Thanksgiving, God as Healer, Memory of Forefathers, Prayers to God, and Life after Death. Few gender differences were noted. However, women were more likely to use scripture passages of God as Protector and Life after Death, whereas men were more likely to use God as Beneficent and God as Healer. The religious practice of reading scripture passages from The Bible is a mental health-promoting strategy used during stressful life events. The findings of this study have practical uses for nurses and can be used to inform acceptable and sensitive approaches in addressing mental health issues and spiritual care needs in African American patients.

"Perhaps I will die young." Fears and worries regarding disease and death among Danish adolescents and young adults with cancer. A mixed method study.

PubMed

Hølge-Hazelton, Bibi; Timm, Helle U; Graugaard, Christian; Boisen, Kirsten A; Sperling, Cecilie Dyg

2016-11-01

A cross-sectional national study was initiated in order to evaluate healthcare services and survivorship from the perspective of Danish adolescents and young adults (AYAs) with cancer. The purpose of the paper was to examine (Q1) to what extend Danish AYAs experienced fears and worries about dying; (Q2) with whom, if anyone, they had shared those worries; and finally, (Q3) how fears and worries influenced their daily life. The emphasis will be on Q3. A 151-item questionnaire (including two closed- and one open-ended questions about fears of death and dying) was distributed among all 15-29-year-old Danes registered with a cancer diagnosis from 2009 to 2013. A total study population of 822 persons participated. Data was analyzed using a mixed design of descriptive statistics and qualitative content analysis. Q1: Almost 80 % of AYAs with cancer expressed some worries about death; hereof, more than half of them expressed quite a bit or very much. The analysis showed significant gender differences, whereas age and duration of disease did not have any significant impact on such thoughts. Q2: One third had not talked to anybody about his or her worries. Q3: The analysis resulted in three overall categories: fear of disease and death having little or no influence (n = 100), fear influencing in various ways (n = 215), and fear of disease and death having a substantial influence (n = 75). The majority of AYAs had experienced fears and worries about dying, but one third of them had not talked to anybody about those thoughts. It is an important clinical point that young age does not preclude fears and worries about dying in AYAs with cancer.

Breaking the news or fueling the epidemic? Temporal association between news media report volume and opioid-related mortality.

PubMed

Dasgupta, Nabarun; Mandl, Kenneth D; Brownstein, John S

2009-11-18

Historical studies of news media have suggested an association between reporting and increased drug abuse. Period effects for substance use have been documented for different classes of legal and illicit substances, with the suspicion that media publicity may have played major roles in their emergence. Previous analyses have drawn primarily from qualitative evidence; the temporal relationship between media reporting volume and adverse health consequences has not been quantified nationally. We set out to explore whether we could find a quantitative relationship between media reports about prescription opioid abuse and overdose mortality associated with these drugs. We assessed whether increases in news media reports occurred before or after increases in overdose deaths. Our ecological study compared a monthly time series of unintentional poisoning deaths involving short-acting prescription opioid substances, from 1999 to 2005 using multiple cause-of-death data published by the National Center for Health Statistics, to monthly counts of English-language news articles mentioning generic and branded names of prescription opioids obtained from Google News Archives from 1999 to 2005. We estimated the association between media volume and mortality rates by time-lagged regression analyses. There were 24,272 articles and 30,916 deaths involving prescription opioids during the seven-year study period. Nationally, the number of articles mentioning prescription opioids increased dramatically starting in early 2001, following prominent coverage about the nonmedical use of OxyContin. We found a significant association between news reports and deaths, with media reporting preceding fatal opioid poisonings by two to six months and explaining 88% (p<0.0001, df 78) of the variation in mortality. While availability, structural, and individual predispositions are key factors influencing substance use, news reporting may enhance the popularity of psychoactive substances. Albeit ecological in nature, our finding suggests the need for further evaluation of the influence of news media on health. Reporting on prescription opioids conforms to historical patterns of news reporting on other psychoactive substances.

Housing influences among sleep-related infant injury deaths in the USA.

PubMed

Chu, Tracy; Hackett, Martine; Kaur, Navpreet

2016-06-01

This article examines the role of housing conditions in sleep-related infant injury death, a leading cause of infant mortality in the USA. The use of an unsafe sleep surface is a major risk factor for sleep-related infant injury. This exploratory study examined contextual circumstances, specifically those related to the physical environment, which may contribute to caregivers' decisions to place an infant on an unsafe sleep surface. It employed a retrospective review of 255 sleep-related infant injury death cases in a large urban area from 2004 to 2010 where an infant was found sleeping on an unsafe sleep surface, including 122 cases where a crib or bassinet was identified in the home. Quantitative findings indicated no differences in demographic or risk characteristics between infants with cribs or bassinets and those without them. Qualitative findings suggested the lack of crib or bassinet use may be related to environmental factors influenced by poverty, specifically crowded living space, room temperature and vermin infestation. This study suggests that infants may be at risk of sleep-related injury deaths even when a crib or bassinet is present in the home and supports the consideration of housing conditions in health promotion efforts to reduce infant mortality. Understanding environmental factors that may contribute to infants sleeping on an unsafe surface can help maternal child health and public health professionals develop more appropriate interventions that address deleterious living conditions. © The Author 2015. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

A Systems Biological View of Life-and-Death Decision with Respect to Endoplasmic Reticulum Stress-The Role of PERK Pathway.

PubMed

Márton, Margita; Kurucz, Anita; Lizák, Beáta; Margittai, Éva; Bánhegyi, Gábor; Kapuy, Orsolya

2017-01-05

Accumulation of misfolded/unfolded proteins in the endoplasmic reticulum (ER) leads to the activation of three branches (Protein kinase (RNA)-like endoplasmic reticulum kinase [PERK], Inositol requiring protein 1 [IRE-1] and Activating trascription factor 6 [ATF6], respectively) of unfolded protein response (UPR). The primary role of UPR is to try to drive back the system to the former or a new homeostatic state by self-eating dependent autophagy, while excessive level of ER stress results in apoptotic cell death. Our study focuses on the role of PERK- and IRE-1-induced arms of UPR in life-or-death decision. Here we confirm that silencing of PERK extends autophagy-dependent survival, whereas the IRE-1-controlled apoptosis inducer is downregulated during ER stress. We also claim that the proper order of surviving and self-killing mechanisms is controlled by a positive feedback loop between PERK and IRE-1 branches. This regulatory network makes possible a smooth, continuous activation of autophagy with respect to ER stress, while the induction of apoptosis is irreversible and switch-like. Using our knowledge of molecular biological techniques and systems biological tools we give a qualitative description about the dynamical behavior of PERK- and IRE-1-controlled life-or-death decision. Our model claims that the two arms of UPR accomplish an altered upregulation of autophagy and apoptosis inducers during ER stress. Since ER stress is tightly connected to aging and age-related degenerative disorders, studying the signaling pathways of UPR and their role in maintaining ER proteostasis have medical importance.

Experiences and Expectations of Bereavement Contact among Caregivers of Patients with Advanced Cancer.

PubMed

Makarem, Maisam; Mohammed, Shan; Swami, Nadia; Pope, Ashley; Kevork, Nanor; Krzyzanowska, Monika; Rodin, Gary; Hannon, Breffni; Zimmermann, Camilla

2018-05-16

Contact with bereaved caregivers is not standard practice among cancer physicians, and little is known about its impact on caregivers. Our aim was to describe the experiences and opinions of caregivers regarding bereavement contact from healthcare providers (HCP). Semistructured qualitative interviews were conducted with 61 bereaved caregivers. Bereaved caregivers of advanced cancer patients who had completed a randomized controlled trial of an early palliative care intervention were approached one to five years after the patient's death. Caregivers completed qualitative interviews from April 2012 to March 2015 after completion of quantitative measures. In semistructured interviews, bereaved caregivers were asked to describe the contact they received from HCP after the patient's death and their opinions about bereavement contact. We used thematic analysis informed by grounded theory to code and analyze the data. Of 60 caregivers included in the study, 30 (50%) received bereavement contact. There were no thematic differences between trial arms. The themes "contact reflects caring," "contact offers support," and "contact facilitates closure" were prominent among those who were contacted. "Contact is a courtesy," "contact is not always necessary," and "caregiver-initiated contact" were most evident among those who were not contacted. Overall, contact was appreciated by those who received it; for those who did not, reactions included rationalization, ambivalence, and regret. No negative consequences of contact were reported. Bereavement contact is well received and may be missed if not provided. These data support integration of bereavement contact into routine supportive care for caregivers.

Maternal filicide in a cohort of English Serious Case Reviews.

PubMed

Sidebotham, Peter; Retzer, Ameeta

2018-03-02

A national mixed-methods study of English Serious Case Reviews (SCRs) was carried out to better understand the characteristics and circumstances of maternally perpetrated filicides, to compare these with paternally perpetrated cases, and to identify learning points for mental health professionals. Published reports for all SCRs of children in England dying as a result of abuse or neglect from 2011 to 2014 were subject to qualitative analysis using a system of layered reading and inductive thematic analysis, along with descriptive and comparative quantitative analysis. There were 86 deaths directly attributable to child maltreatment within the immediate family. The mother was the suspected perpetrator in 20. Twelve of the mother perpetrators were victims of domestic violence, while 15 of the father perpetrators were known to be perpetrators of domestic violence. Those deaths resulting from impulsive violence or severe, persistent cruelty are almost exclusively perpetrated by males, while those with an apparent intent to kill the child are slightly more likely to be perpetrated by mothers. Four key themes were identified through the qualitative analysis: domestic violence, maternal mental illness, separation and maternal isolation, and the invisibility of the child. These findings highlight the important role of domestic violence and its interaction with maternal mental health. Professionals working with mothers with mental health problems need to adopt a supportive but professionally curious stance, to be alert to signs of escalating stress or worsening mental ill-health, and to provide supportive and accessible structures for at-risk families.

Conversations, coping, & connectedness: a qualitative study of women who have experienced involuntary pregnancy loss.

PubMed

Van, Paulina

2012-01-01

The purpose of this qualitative study was to describe processes and strategies used by women to cope after pregnancy loss. Twenty women with a history of involuntary pregnancy loss were interviewed. All of the women were in the last month of a subsequent pregnancy, married or partnered, and most were EuroAmerican or Asian American and had completed college. Taped interviews, fieldnotes, and analytical notes were transcribed then subsequently coded and developed in individual or team sessions. Construction and confirmation of the categories and related themes derived from the data was a collaborative process. Three themes were revealed that described the coping behaviors used by the women: being myself, connecting with others, and avoiding and pretending. The core concept of connectedness and coping after involuntary pregnancy loss was further validated in this study. The purpose of this study was to describe processes and strategies that facilitate coping for 20 women, pregnant subsequent to an involuntary pregnancy loss (IPL). Involuntary pregnancy loss (IPL) refers to miscarriages, ectopic pregnancies, fetal deaths, and stillbirths (Van & Meleis, 2003). This current study was designed to replicate two prior qualitative studies, with African-American women, by the author (Patterson, 2000; Van, 2001). Based on the author's previous work, a theoretical framework entitled "A Model of Living with Grief after Pregnancy Loss" was constructed (Patterson, 2000). For the current study, a more diverse sample was used to potentially expand the applicability of the Model of Living with Grief after Pregnancy Loss to women who are of races other than African American.

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.

Using Action Research to Design Bereavement Software: Engaging People with Intellectual Disabilities for Effective Development

ERIC Educational Resources Information Center

Read, Sue; Nte, Sol; Corcoran, Patsy; Stephens, Richard

2013-01-01

Background: Loss is a universal experience and death is perceived as the ultimate loss. The overarching aim of this research is to produce a qualitative, flexible, interactive, computerised tool to support the facilitation of emotional expressions around loss for people with intellectual disabilities. This paper explores the process of using…

Physical, social, psychological and existential trajectories of loss and adaptation towards the end of life for older people living with frailty: a serial interview study.

PubMed

Lloyd, Anna; Kendall, Marilyn; Starr, John M; Murray, Scott A

2016-10-20

The experiences of people with cancer and organ disease have been described across different dimensions of need as they approach death. Such information is lacking for frail older people approaching death, but could highlight how a palliative approach might be relevant for this population. Cognitively intact, community dwelling adults considered to be moderately or severely frail were recruited from a medical day hospital. Those recruited nominated an informal carer and case-linked professional. Qualitative in-depth serial interviews with older people and their informal carers were conducted over an 18 month period, and single interviews with case-linked healthcare professionals. Interviews were recorded, transcribed and narrative analytical techniques were used to compile case studies. Thirty-four participants (13 patients, 13 informal carers and 8 healthcare professionals) completed 40 individual, 14 joint and 8 professional interviews. Five patients died during the study. The analysis highlighted a dynamic balance between losses and adaptations. Three typical patterns of multi-dimensional change emerged. 1) Maintenance of psychological and existential well-being with a gradual social decline mirroring the physical deterioration. 2) a gradual reduction in both psychological and existential well-being. 3) a marked downturn in social, psychological and existential well-being before death. Frail older people sustained their well-being through maintaining a sense-of-self, garnering support from carers and community structures, and focusing on living from day to day. Their well-being lessened when they lost their sense-of-self, feeling alienated from the world, and confused over the cause of their circumstances. Death remained distant and 'undiagnosed'. Social and community frameworks were essential for supporting their well-being. Multidimensional end-of-life trajectories for frail older people differed from those with other conditions. Alleviating psychological, social and existential distress should be a priority of care as frail older people reach the end of life. The current palliative care model is problematic for this group. Care should address future concerns and not necessarily involve a focus on death or place of death.

[Maternal deaths related to social vulnerabilities. Results from the French confidential enquiry into maternal deaths, 2010-2012].

PubMed

Tessier, V; Leroux, S; Guseva-Canu, I

2017-12-01

The theme of deprivation is new for the ENCMM. In view of the perceived increase in the number of maternal deaths that may be related to a deprivation situation, we sought to understand the main dimensions that could contribute to maternal death in this context, in order to propose a definition. The selection of cases made a posteriori is mainly based on a qualitative judgment. Between 2010 and 2012, among the deaths evaluated by the CNEMM, one or more elements related to social vulnerability were identified in 8.6% of the cases (18 deaths). The direct criteria used were the concepts of "deprivation" or "social difficulties", difficulties of housing, language barriers and isolation. The absence of prenatal care was retained as an indirect marker. We excluded cases where psychiatric pathology and/or addiction were predominant. Of the 18 cases identified with deprivation factors, death was considered "unavoidable" in 2 cases (11%), "certainly avoidable" or "possibly avoidable" in 13 cases (72%). In 3 cases (17%), avoidability could not be determined. Avoidability was related to the content and adequacy of care in 11 cases out of 13 (85%) and the patient's interaction with the health care system in 10 of 18 cases (56%). The analysis of maternal deaths among women in precarious situations points out that the link between socio-economic deprivation and poor maternal health outcomes potentially includes a specific risk of maternal death. Copyright © 2017 Elsevier Masson SAS. All rights reserved.

"It's a traumatic illness, traumatic to witness." A qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T-cell lymphoma.

PubMed

Orlowska, D; Selman, L E; Beynon, T; Radcliffe, E; Whittaker, S; Child, F; Harding, R

2018-02-16

Cutaneous T-cell lymphomas (CTCL) are rare cancers which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement. To explore the experiences of bereaved family caregivers of patients with CTCL. Single semi-structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra-regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement. Fifteen carers of eleven deceased patients participated. Experiences clustered under four themes 1 Complexity of care and medical intervention 2 Carer roles in advanced CTCL 3 Person vs. organisation-centred care in advanced CTCL 4 Knowing and not knowing: reflections on dying, death and bereavement Caregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi-professional roles as a result. Advanced disease made high demands on both organisational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable. Subthemes within each theme provide more detail about caregiver experiences. Family caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organisational flexibility and of good communication between health care providers in advanced CTCL. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

A study of volatile organic compounds evolved from the decaying human body.

PubMed

Statheropoulos, M; Spiliopoulou, C; Agapiou, A

2005-10-29

Two men were found dead near the island of Samos, Greece, in the Mediterranean sea. The estimated time of death for both victims was 3-4 weeks. Autopsy revealed no remarkable external injuries or acute poisoning. The exact cause of death remained unclear because the bodies had advanced decomposition. Volatile organic compounds (VOCs) evolved from these two corpses were determined by thermal desorption/gas chromatography/mass spectrometry analysis (TD/GC/MS). Over 80 substances have been identified and quantified. The most prominent among them were dimethyl disulfide (13.39 nmol/L), toluene (10.11 nmol/L), hexane (5.58 nmol/L), benzene 1,2,4-trimethyl (4.04 nmol/L), 2-propanone (3.84 nmol/L), 3-pentanone (3.59 nmol/L). Qualitative and quantitative differences among the evolved VOCs and CO2 mean concentration values might indicate different rates of decomposition between the two bodies. The study of the evolved VOCs appears to be a promising adjunct to the forensic pathologist as they may offer important information which can be used in his final evaluation.

Social representations of mothers about gestational hypertension and premature birth.

PubMed

de Souza, Nilba Lima; de Araújo, Ana Cristina Pinheiro Fernandes; Costa, Iris do Ceu Clara

2013-01-01

To identify the meanings attributed by mothers to hypertensive disorders of pregnancy (HDPs) and their consequences, such as premature birth and hospitalization of the infant in the neonatal intensive care unit (NICU). A qualitative study, based on the Central Nucleus Theory, with 70 women who had hypertensive disorders of pregnancy and preterm delivery. We used the technique of free word association (FWAT) with three stimuli: high blood pressure during pregnancy, prematurity and NICU. We obtained 1007 evocations, distributed as follows: high blood pressure during pregnancy (335) prematurity (333) and NICU (339). These constituted three thematic units: representation of HDPs, prematurity and the NICU. The categories death and negative aspects were inherent to the three units analyzed, followed by coping strategies and needs for care present in HDPs and prematurity. The study had death as its central nucleus, and highlighted the subjective aspects present in the high risk pregnancy and postpartum cycle. It is hoped that this research will contribute to qualifying nursing care for women confronting the problem of HDPs, so that they can cope with less impacts from the adverse effects of high risk pregnancy and birth.

Palliative care team visits. Qualitative study through participant observation.

PubMed

Alfaya Góngora, Maria Del Mar; Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz

2016-03-30

To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.

Fertility intentions and interest in integrated family planning services among women living with HIV in Nyanza Province, Kenya: a qualitative study.

PubMed

Harrington, Elizabeth K; Newmann, Sara J; Onono, Maricianah; Schwartz, Katie D; Bukusi, Elizabeth A; Cohen, Craig R; Grossman, Daniel

2012-01-01

Despite increasing efforts to address the reproductive health needs of people living with HIV, a high unmet need for contraception exists among HIV+ women in sub-Saharan Africa. This study explores the fertility intentions and family planning (FP) preferences of Kenyan women accessing HIV treatment. We conducted 30 semistructured interviews and qualitatively analyzed the data with a grounded theory approach. Fears of premature death, financial hardship, and perinatal HIV transmission emerged as reasons for participants' desire to delay/cease childbearing. Participants strongly identified FP needs, yet two-thirds were using male condoms alone or no modern method of contraception. Women preferred the HIV clinic as the site of FP access for reasons of convenience, provider expertise, and a sense of belonging, though some had privacy concerns. Our findings support the acceptability of integrated FP and HIV services. Efforts to empower women living with HIV to prevent unintended pregnancies must expand access to contraceptive methods, provide confidential services, and take into account women's varied reproductive intentions.

The perspectives of young adults on recovery from repeated suicide-related behavior.

PubMed

Bergmans, Yvonne; Langley, John; Links, Paul; Lavery, James V

2009-01-01

This qualitative study sought to develop an understanding of how young adults between the ages of 18-25 years, who have a history of two or more suicide attempts, transition away from high-risk suicide-related behaviors. To understand the transition to safer behaviors and to provide clinical suggestions for those who provide care to this population. Sixteen young adults under the age of 25 years, who had completed at least one cycle of intervention for people with repeated suicide attempts, participated in this qualitative, grounded theory study. The young adults described a pathway that included three major elements: (a) "living to die", (b) ambivalence and tipping/turning points, and (c) a process of recovery that included small steps or phases (pockets of recovery) toward life. The journey was not always experienced as steady movement forward, and the potential for relapse either in the young people's behavior or their wish to engage in their relationship with death could ebb and flow. Clinicians need to be aware that the struggle to live is a process involving a fluid pathway moving between three key elements.

Impact of the 2008 economic and financial crisis on child health: a systematic review.

PubMed

Rajmil, Luis; Fernandez de Sanmamed, María-José; Choonara, Imti; Faresjö, Tomas; Hjern, Anders; Kozyrskyj, Anita L; Lucas, Patricia J; Raat, Hein; Séguin, Louise; Spencer, Nick; Taylor-Robinson, David

2014-06-01

The aim of this study was to provide an overview of studies in which the impact of the 2008 economic crisis on child health was reported. Structured searches of PubMed, and ISI Web of Knowledge, were conducted. Quantitative and qualitative studies reporting health outcomes on children, published since 2007 and related to the 2008 economic crisis were included. Two reviewers independently assessed studies for inclusion. Data were synthesised as a narrative review. Five hundred and six titles and abstracts were reviewed, from which 22 studies were included. The risk of bias for quantitative studies was mixed while qualitative studies showed low risk of bias. An excess of 28,000-50,000 infant deaths in 2009 was estimated in sub-Saharan African countries, and increased infant mortality in Greece was reported. Increased price of foods was related to worsening nutrition habits in disadvantaged families worldwide. An increase in violence against children was reported in the U.S., and inequalities in health-related quality of life appeared in some countries. Most studies suggest that the economic crisis has harmed children's health, and disproportionately affected the most vulnerable groups. There is an urgent need for further studies to monitor the child health effects of the global recession and to inform appropriate public policy responses.

Impact of the 2008 Economic and Financial Crisis on Child Health: A Systematic Review

PubMed Central

Rajmil, Luis; Fernandez de Sanmamed, María-José; Choonara, Imti; Faresjö, Tomas; Hjern, Anders; Kozyrskyj, Anita L.; Lucas, Patricia J.; Raat, Hein; Séguin, Louise; Spencer, Nick; Taylor-Robinson, David

2014-01-01

The aim of this study was to provide an overview of studies in which the impact of the 2008 economic crisis on child health was reported. Structured searches of PubMed, and ISI Web of Knowledge, were conducted. Quantitative and qualitative studies reporting health outcomes on children, published since 2007 and related to the 2008 economic crisis were included. Two reviewers independently assessed studies for inclusion. Data were synthesised as a narrative review. Five hundred and six titles and abstracts were reviewed, from which 22 studies were included. The risk of bias for quantitative studies was mixed while qualitative studies showed low risk of bias. An excess of 28,000–50,000 infant deaths in 2009 was estimated in sub-Saharan African countries, and increased infant mortality in Greece was reported. Increased price of foods was related to worsening nutrition habits in disadvantaged families worldwide. An increase in violence against children was reported in the U.S., and inequalities in health-related quality of life appeared in some countries. Most studies suggest that the economic crisis has harmed children’s health, and disproportionately affected the most vulnerable groups. There is an urgent need for further studies to monitor the child health effects of the global recession and to inform appropriate public policy responses. PMID:25019121

“Dulling the edges”: Young Men’s use of alcohol to deal with grief following the death of a male friend

PubMed Central

Creighton, Genevieve; Oliffe, John; Matthews, Jennifer; Saewyc, Elizabeth

2015-01-01

Background The death of a male friend can be challenging for men because expressions of grief can be governed and restrained by dominant ideals of masculinity. It is common for young men to engage in health risk practices, such as alcohol overuse, to deal with feelings of sadness. Objective This qualitative study investigated the ways that young men use alcohol in the process of grieving the accidental death of a male friend. Methods Participants included 35 men 19–25 years old, and 22 men, ages 26–35 who participated in individual semi-structured interviews between 2010–2012. Results Methodology informed by grounded theory and narrative analysis was used to analyse and interpret the transcribed interviews, focusing on the ways that men used alcohol in the grief process. Through data analysis we inductively derived three themes: 1) Using Alcohol to Dull the Pain and 2) Using Alcohol to Purge Sadness, and 3) Troubled Drinking. Conclusions This study provides evidence to show that men’s binge drinking following tragic loss is a means to express emotion and connect with others. Health interventions for young men who have lost a male peer need to be sensitive to gendered norms that inform grief practices and work with them to discern pathways toward recovery that promote long term wellness. PMID:26202615

"Dulling the Edges": Young Men's Use of Alcohol to Deal With Grief Following the Death of a Male Friend.

PubMed

Creighton, Genevieve; Oliffe, John; Matthews, Jennifer; Saewyc, Elizabeth

2016-02-01

The death of a male friend can be challenging for men because expressions of grief can be governed and restrained by dominant ideals of masculinity. It is common for young men to engage in health risk practices, such as alcohol overuse, to deal with feelings of sadness. This qualitative study investigated the ways that young men use alcohol in the process of grieving the accidental death of a male friend. Participants included 35 men 19 to 25 years old and 22 men 26 to 35 years old who participated in individual semistructured interviews between 2010 and 2012. Methodology informed by grounded theory and narrative analysis was used to analyse and interpret the transcribed interviews, focusing on the ways that men used alcohol in the grief process. Through data analysis we inductively derived three themes: (1) Using Alcohol to Dull the Pain, (2) Using Alcohol to Purge Sadness, and (3) Troubled Drinking. This study provides evidence to show that men's binge drinking following tragic loss is a means to express emotion and connect with others. Health interventions for young men who have lost a male peer need to be sensitive to gendered norms that inform grief practices and work with them to discern pathways toward recovery that promote long-term wellness. © 2015 Society for Public Health Education.

Initiation and continuation of smoking in iran: a qualitative content analysis.

PubMed

Ebrahimi, Hossein; Sahebihagh, Mohammad Hasan; Ghofranipour, Fazlollah; Sadegh Tabrizi, Jafar

2014-10-01

Smoking is the cause for many preventable deaths worldwide. The rate of smoking has not increased in Iran in the past two decades, but its increase among adolescents and young adults is a concern. This study investigates the risk factors of initiation and continuation of smoking in Iran using a qualitative approach. This is a qualitative content analysis study conducted on 12 smokers and 6 non-smokers in 4 selected cities in Iran. Data were collected with deep and semi-structured interviews, verbatim transcription and simultaneously coding. Then, they were analyzed through content analysis. Three themes and 16 subcategories emerged. The themes were personal inefficacy with 6 subgroups included inadequate information, low age, curiosity, consideration of smoking not as a major problem, wrong beliefs, and making reasons. Family inefficacy with 4 subgroups included poor authority, lack of reaction, existence of stressors, and history of smoking. Vulnerable social environment with 6 subgroups included poverty, social stressors, magnification of smoking, network of cigarette smoking, smoking as a norm and convenience of access. Recognition of smoking among children, modification of wrong beliefs about smoking, empowerment of the individuals against smoking from the very childhood, consideration of familial stress and crisis, and ultimately, paying attention to the role of social variables will play a major role in prevention of smoking and encouraging individuals to quit smoking.

Exploring spirituality in Iranian healthy elderly people: A qualitative content analysis

PubMed Central

Rahimi, Abolfazl; Anoosheh, Monireh; Ahmadi, Fazlollah; Foroughan, Mahshid

2013-01-01

Background: Spirituality is recognized as a personally important matter to the elderly, and there are evidences of its impact on their health. The aim of this study was to explore the concept of spirituality from the perspectives of Iranian healthy elderly individuals. Materials and Methods: A conventional qualitative content analysis of carried out with 21 healthy elderly people from both male and female genders were chosen using a purposive sampling method in Tehran in 2010-2011. Data collection was done through semi structured interviews. A qualitative content analysis was used to analyze the participants’ experiences and perceptions on spirituality, using a central question ‘what characterizes the spirituality in the Iranian healthy elderly people?’ Results: The following categories emerged from the data analysis: (1) Spiritual health, with four sub categories including saying prayer as a calming factor; beneficence as a way to God; loss of psychological and spiritual support; faith as a way to happiness; (2) spiritual beliefs, with three sub categories including seeking help from God in difficulties; God's power over life and death; doing good deeds is the God's will; and (3) religious practice with three sub categories including saying prayer; reading Quran; and going to mosque, religious ceremonies and pilgrimage. Conclusions: In this study was found that spirituality was a fundamental element in elderly individuals’ lives that help them to adapt with daily living conditions. PMID:23983748

Exploring spirituality in Iranian healthy elderly people: A qualitative content analysis.

PubMed

Rahimi, Abolfazl; Anoosheh, Monireh; Ahmadi, Fazlollah; Foroughan, Mahshid

2013-03-01

Spirituality is recognized as a personally important matter to the elderly, and there are evidences of its impact on their health. The aim of this study was to explore the concept of spirituality from the perspectives of Iranian healthy elderly individuals. A conventional qualitative content analysis of carried out with 21 healthy elderly people from both male and female genders were chosen using a purposive sampling method in Tehran in 2010-2011. Data collection was done through semi structured interviews. A qualitative content analysis was used to analyze the participants' experiences and perceptions on spirituality, using a central question 'what characterizes the spirituality in the Iranian healthy elderly people?' THE FOLLOWING CATEGORIES EMERGED FROM THE DATA ANALYSIS: (1) Spiritual health, with four sub categories including saying prayer as a calming factor; beneficence as a way to God; loss of psychological and spiritual support; faith as a way to happiness; (2) spiritual beliefs, with three sub categories including seeking help from God in difficulties; God's power over life and death; doing good deeds is the God's will; and (3) religious practice with three sub categories including saying prayer; reading Quran; and going to mosque, religious ceremonies and pilgrimage. In this study was found that spirituality was a fundamental element in elderly individuals' lives that help them to adapt with daily living conditions.

Aging in complex interdependency networks.

PubMed

Vural, Dervis C; Morrison, Greg; Mahadevan, L

2014-02-01

Although species longevity is subject to a diverse range of evolutionary forces, the mortality curves of a wide variety of organisms are rather similar. Here we argue that qualitative and quantitative features of aging can be reproduced by a simple model based on the interdependence of fault-prone agents on one other. In addition to fitting our theory to the empiric mortality curves of six very different organisms, we establish the dependence of lifetime and aging rate on initial conditions, damage and repair rate, and system size. We compare the size distributions of disease and death and see that they have qualitatively different properties. We show that aging patterns are independent of the details of interdependence network structure, which suggests that aging is a many-body effect, and that the qualitative and quantitative features of aging are not sensitively dependent on the details of dependency structure or its formation.

When Men Grieve: Widowers' Stories of Coping With Their Wives' Deaths.

PubMed

Silverman, Phyllis R; Thomson, Susan

2018-06-01

To increase our understanding of the role gender plays in spousal loss, this qualitative study analyzes bereavement narratives of 33 recent widowers, aged 45-89 years, all of whom accessed the National Widowers' Organization website. In particular, we look at how these widowers' lives changed, the impact of changing gender norms, and coping strategies. To illuminate the temporal process evident in these narratives, we utilize Silverman's nonlinear characteristics of bereavement and the anthropological concept of liminality. In contrast to studies of widowers in earlier decades, our analysis reveals questioning and rejection of stereotypical masculine gender norms, a wide variety of creative responses to spousal loss, and the need for individualized support.

Siblings caring for and about pediatric palliative care patients.

PubMed

Gaab, Erin M; Owens, Glynn R; MacLeod, Roderick D

2014-01-01

The experiences of young people who have siblings with life-limiting illnesses are not well understood. The study proposed to identify the concerns of siblings of pediatric palliative care (PPC) patients. Semistructured interviews were administered to participants and analyzed using qualitative inductive thematic analysis. Study subjects were 18 siblings of PPC patients aged 9 to 22 living in the Auckland area. The siblings of PPC patients held concerns about their siblings' impending death and desires to be involved in their lives and care. Siblings may benefit from opportunities to be involved in conversations about mortality and the care of their ill sibling. They are able to express their concerns and help provide care to PPC patients.

Staff experiences and perceptions of working with in-patients who are suicidal: qualitative analysis

PubMed Central

Awenat, Yvonne; Peters, Sarah; Shaw-Nunez, Emma; Gooding, Patricia; Pratt, Daniel; Haddock, Gillian

2017-01-01

Background Suicidal behaviour is frequent in psychiatric in-patients and much staff time and resources are devoted to assessing and managing suicide risk. However, little is known about staff experiences of working with in-patients who are suicidal. Aims To investigate staff experiences of working with in-patients who are suicidal. Method Qualitative study guided by thematic analysis of semi-structured interviews with mental health staff with experience of psychiatric in-patient care. Results Twenty staff participated. All had encountered in-patient suicide deaths or attempts. Three key themes were identified: (a) experiences of suicidality, (b) conceptualising suicidality and (c) talking about suicide. Conclusions Suicidal behaviour in psychiatric wards has a large impact on staff feelings, practice and behaviour. Staff felt inadequately equipped to deal with such behaviours, with detrimental consequences for patients and themselves. Organisational support is lacking. Training and support should extend beyond risk assessment to improving staff skills in developing therapeutic interactions with in-patients who are suicidal. PMID:28642259

A qualitative study exploring women's beliefs about physical activity after stillbirth.

PubMed

Huberty, Jennifer L; Coleman, Jason; Rolfsmeyer, Katherine; Wu, Serena

2014-01-17

Research provides strong evidence for improvements in depressive symptoms as a result of physical activity participation in many populations including pregnant and post-partum women. Little is known about how women who have experienced stillbirth (defined as fetal death at 20 or more weeks of gestation) feel about physical activity or use physical activity following this experience. The purpose of this study was to qualitatively explore women's beliefs about physical activity following a stillbirth. This was an exploratory qualitative research study. Participants were English-speaking women between the ages of 19 and 44 years who experienced a stillbirth in the past year from their recruitment date. Interviews were conducted over the phone or in-person based on participants' preferences and location of residence and approximately 30-45 minutes in length. Twenty-four women participated in the study (M age = 33 ± 3.68 years; M time since stillbirth = 6.33 ± 3.06 months). Women's beliefs about physical activity after stillbirth were coded into the following major themes: barriers to physical activity (emotional symptoms and lack of motivation, tired, lack of time, guilt, letting go of a pregnant body, and seeing other babies), benefits to physical activity (feeling better emotionally/mentally, helping women to cope or be therapeutic), importance of physical activity (working through grief, time for self), motivators for physical activity (body shape/weight, health, more children, be a role model, already an exerciser). Health care providers and their role in physical activity participation was also a major theme. This is the first study to qualitatively explore beliefs about physical activity in women after a stillbirth. Women who have experienced stillbirth have unique beliefs about physical activity related to their experience with stillbirth. Findings from this study may help to improve the health and quality of life for women who have experienced stillbirth by utilizing physical activity as a strategy for improving depressive symptoms associated with experiencing a stillbirth. Future research in this area is highly warranted.

How do accountability problems lead to maternal health inequities? A review of qualitative literature from Indian public sector.

PubMed

Hamal, Mukesh; Dieleman, Marjolein; De Brouwere, Vincent; de Cock Buning, Tjard

2018-01-01

There are several studies from different geographical settings and levels on maternal health, but none analyzes how accountability problems may contribute to the maternal health outcomes. This study aimed to analyze how accountability problems in public health system lead to maternal deaths and inequities in India. A conceptual framework was developed bringing together accountability process (in terms of standard setting, performance assessment, accountability (or answerability, and enforceability) -an ongoing cyclical feedback process at different levels of health system) and determinants of maternal health to analyze the influence of the process on the determinant leading to maternal health outcomes . A scoping review of qualitative and mixed-methods studies from public health sector in India was conducted. A narrative and interpretive synthesis approach was applied to analyze data. An overarching influence of health system-related factors over non-health system-related factors leading to maternal deaths and inequities was observed. A potential link among such factors was identified with gaps in accountability functions at all levels of health system pertaining to policy gaps or conflicting/discriminatory policies and political commitment. A large number of gaps were also observed concerning performance or implementation of existing standards. Inherent to these issues was potentially a lack of proper monitoring and accountability functions. A critical role of power was observed influencing the accountability functions. The narrative and interpretive synthesis approach allowed to integrate and reframe the relevant comparable information from the limited empirical studies to identify the hot spots of systemic flaws from an accountability perspective. The framework highlighted problems in health system beyond health service delivery to wider areas such as policy or politics justifying their relevance and importance in such analysis. A crucial message from the study pertains to a need to move away from the traditional concept of viewing accountability as a blame-game approach and a concern of limited frontline health workers towards a constructive and systemic approach.

Surviving spinal cord injury in low income countries

PubMed Central

2014-01-01

Background Mortality rates from injuries are higher for people from poorer economic backgrounds than those with higher incomes (according to the World Health Organization [WHO]), and health care professionals and organisations dealing with people with disabilities experience that individuals with spinal cord injury (SCI) in low income countries face serious challenges in their daily lives. Objectives The aims of this study were to explore life expectancy (life expectancy is the average remaining years of life of an individual) and the situation of persons living with SCI in low income settings. Method Literature studies and qualitative methods were used. Qualitative data was collected through semi-structured interviews with 23 informants from four study sites in Zimbabwe representing persons with SCI, their relatives and rehabilitation professionals. Results There are few publications available about life expectancy and the daily life of persons with SCI in low income countries. Those few publications identified and the study findings confirm that individuals with SCI are experiencing a high occurrence of pressure sores and urinary tract infections leading to unnecessary suffering, often causing premature death. Pain and depression are frequently reported and stigma and negative attitudes are experienced in society. Lack of appropriate wheelchairs and services, limited knowledge about SCI amongst health care staff, limited access to health care and rehabilitation services, loss of employment and lack of financial resources worsen the daily challenges. Conclusion The study indicates that life expectancy for individuals with SCI in low income settings is shorter than for the average population and also with respect to individuals with SCI in high income countries. Poverty worsened the situation for individuals with SCI, creating barriers that increase the risk of contracting harmful pressure sores and infections leading to premature death. Further explorations on mortality and how individuals with SCI and their families in low income settings are coping in their daily life are required to provide comprehensive evidences. PMID:28730012

Bereaved relatives' experiences during the incurable phase of cancer: a qualitative interview study.

PubMed

Wijnhoven, Marleen N; Terpstra, Wim E; van Rossem, Ronald; Haazer, Carolien; Gunnink-Boonstra, Nicolette; Sonke, Gabe S; Buiting, Hilde M

2015-11-25

To examine bereaved relatives' experiences from time of diagnosis of incurable cancer until death with specific emphasis on their role in the (end-of-life) decision-making concerning chemotherapy. Qualitative interview study. Hospital-based. In-depth interviews with 15 close relatives of patients who died from non-small cell lung cancer or pancreatic cancer, using a thematic content analysis. All relatives reported that patients' main reason to request chemotherapy was the possibility to prolong life. Relatives reported that patients receiving chemotherapy had more difficulty to accept the incurable nature of their disease than patients who did not. They mostly followed the patients' treatment wish and only infrequently suggested ceasing chemotherapy (because of side effects) despite sometimes believing that this would be a better option. Relatives continuously tried to support the patient in either approaching the death or in attaining hope to continue life satisfactorily. Most relatives considered the chemotherapy period meaningful, since it sparked patients' hope and was what patients wanted. Cessation of chemotherapy caused a relief but coincided with physical deterioration and an increased caregivers' role; many relatives recalled this latter period as more burdensome. Relatives tend to follow patients' wish to continue or cease chemotherapy, without expressing their own feelings, although they were more inclined to opt cessation. They experience a greater caregiver role after cessation and their feelings of responsibility associated with the disease can be exhausting. More attention is needed to reduce relatives' distress at the end of life, also to fully profit from this crucial form of (informal) healthcare. 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/

Positional plagiocephaly reduces parental adherence to SIDS Guidelines and inundates the health system.

PubMed

Martiniuk, A; Jacob, J; Faruqui, N; Yu, W

2016-11-01

This study sought to better understand parent, grandparent and clinician views of prevention, treatment and costs of plagiocephaly. A qualitative study was conducted using focus groups and semi-structured interviews. A grounded theory approach was taken to build theories from the qualitative data collected. A subjectivist epistemological orientation was taken under the paradigm of positivism. Ninety-one parents, 6 grandparents and 24 clinicians were recruited from the community as well as primary and tertiary care clinics. Plagiocephaly worried most parents because it could permanently affect their child's 'looks' and some thought it would affect a child's development. Parents were 'willing to do anything' to prevent plagiocephaly including using products or sleeping positions that are contraindicated under sudden infant death syndrome guidelines. Parents found the care pathway convoluted and inconsistent messages were given from different health providers. For clinicians, the high prevalence of flat head is 'clogging up their patient pool', taking up time they used to spend with children with more severe conditions. There is a need to re-emphasize sudden infant death syndrome guidelines for families when they present with an infant with plagiocephaly. Stronger messaging regarding the lack of safety of current pillows marketed to prevent flat head may be useful to decrease their use. Increasing education for all health professionals including general practitioners, allied health and complementary health providers and standardizing assessment and referral criteria may allow the majority of diagnosis and treatment of positional plagiocephaly to occur at points of first contact (e.g. general practitioners, community nurse) and may prevent further burden on the health care system. © 2016 John Wiley & Sons Ltd.

Gastrostomy feeding in cerebral palsy: a systematic review

PubMed Central

Sleigh, G; Brocklehurst, P

2004-01-01

Aims: To determine benefits and risks for gastrostomy or jejunostomy feeding compared with oral feeding for children with cerebral palsy. Methods: Systematic review. Search strategy: electronic databases—Cochrane Library, Medline, Embase, Cinahl, Lilacs, databases of theses, grey literature. Included: relevant systematic reviews, randomised controlled trials, observational studies, case reports. Excluded: non-systematic reviews and qualitative research. Participants: children with cerebral palsy. Intervention: use of gastrostomy or jejunostomy tube to provide nutrition. Outcome: evaluated outcome measures included death, growth, gastro-oesophageal reflux, other complications, psychosocial aspects, and caregiver wellbeing. Results: No relevant systematic reviews or randomised controlled trials were found. Two cohort studies, 15 case series, and eight case reports met the inclusion criteria. Eight studies specifically described percutaneous endoscopic gastrostomy as the intervention. Weight gain resulted from gastrostomy feeding in most cases. There was an approximately fourfold increased risk of death reported in one cohort study for the gastrostomy fed children. Many complications were reported, including potential for increased gastro-oesophageal reflux and fluid aspiration into the lungs. Conclusions: Benefits associated with gastrostomy or jejunostomy feeding are difficult to assess from the available evidence. Risks of gastrostomy, particularly in relation to surgical complications, have been described but the size of the risk could not be quantified. The finding of a higher death rate for children fed by gastrostomy may merely reflect the greater disability of these compared with orally fed children. Lack of available evidence and the substantial risk of bias in observational studies suggests that a well conducted randomised controlled trial of sufficient size will be needed to answer these problems. PMID:15155398

Factors influencing pre-hospital care time intervals in Iran: a qualitative study.

PubMed

Khorasani-Zavareh, Davoud; Mohammadi, Reza; Bohm, Katarina

2018-06-23

Pre-hospital time management provides better access to victims of road traffic crashes (RTCs) and can help minimize preventable deaths, injuries and disabilities. While most studies have been focused on measuring various time intervals in the pre-hospital phase, to our best knowledge there is no study exploring the barriers and facilitators that affects these various intervals qualitatively. The present study aimed to explore factors affecting various time intervals relating to road traffic incidents in the pre-hospital phase and provides suggestions for improvements in Iran. The study was conducted during 2013-2014 at both the national and local level in Iran. Overall, 18 face-to-face interviews with emergency medical services (EMS) personnel were used for data collection. Qualitative content analysis was employed to analyze the data. The most important barriers in relation to pre-hospital intervals were related to the manner of cooperation by members of the public with the EMS and their involvement at the crash scene, as well as to pre-hospital system factors, including the number and location of EMS facilities, type and number of ambulances and manpower. These factors usually affect how rapidly the EMS can arrive at the scene of the crash and how quickly victims can be transferred to hospital. These two categories have six main themes: notification interval; activation interval; response interval; on-scene interval; transport interval; and delivery interval. Despite more focus on physical resources, cooperation from members of the public needs to be taken in account in order to achieve better pre-hospital management of the various intervals, possibly through the use of public education campaigns.

[Forensic Analysis of 20 Dead Cases Related to Heroin Abuse].

PubMed

Huang, W Q; Li, L H; Li, Z; Hong, S J

2016-08-01

To perform retrospective analysis on 20 dead cases related to heroin abuse, and to provide references for the forensic assessment of correlative cases. Among 20 dead cases related to heroin abuse, general situation, using method of drug, cause of death and result of forensic examination were analyzed by statistical analysis for summarizing the cause of death and pathologic changes. The dead were mostly young adults, with more male than female. The results of histopathological examinations showed non-specific pathological changes. There were four leading causes of death, including acute poisoning of heroin abuse or leakage （13 cases, 65%）, concurrent diseases caused by heroin abuse （3 cases, 15%）, inspiratory asphyxia caused by taking heroin （2 cases, 10%）, and heroin withdrawal syndrome （2 cases, 10%）. The forensic identification on dead related to heroin abuse must base on the comprehensive autopsy, and combine with the qualitative and quantitative analysis of heroin and its metabolites in death and the case information, as well as the scene investigation. Copyright© by the Editorial Department of Journal of Forensic Medicine

Social representations of obstetricians and neonatologists about fetal and early neonatal death certificate in the city of São Paulo.

PubMed

Schoeps, Daniela; Lefevre, Fernando; Silva, Zilda Pereira; Novaes, Hillegonda Maria Dutilh; Raspantini, Priscila Ribeiro; de Almeida, Márcia Furquim

2014-01-01

The insatisfactory completeness of the variables in the Death Certificate (DC) makes it difficult to obtain specific perinatal mortality indicators. To assess the social representation of physicians about the perinatal DC. Twenty-five physicians were interviewed in 15 hospitals in the city of São Paulo, in 2009. Qualitative analysis was performed with the Collective Subject Discourse technique. The DC is primarily considered according to its legal aspect. Physicians feel responsible for fulfilling the cause of death. The majority of them reported receiving help from other professionals to complete information on maternal characteristics and identification variables. There is lack of information on the mother's pre-natal conditions, which can make it difficult to identify the perinatal cause of death, mainly in the Unified Health System (SUS) hospitals. Some participants received specific DC training only when attending medical schools. The organization of medical work may affect the completion of the DC, especially in hospitals from SUS. Other professionals contributed to this task and their training can improve the quality of information.

INVESTIGATION OF A MIXTURE CONTAINING ALPRAZOLAM, CODEINE AND PARACETAMOL USING THIN-LAYER AND HIGH PERFORMANCE LIQUID CHROMATOGRAPHY METHODS.

PubMed

Ciegis, Paulius; Zevzikovas, Andrejus; Zevzikoviene, Augusta; Nenortiene, Palma; Kazlauskiene, Daiva

2016-01-01

The increasing drug consumption in Lithuania and all over the world makes us think about the negative consequences - the risk of toxicity. Fast and accurate identification of material that caused the poisoning reduces the probability in death cases and makes easier to determine the main cause of death. The results have shown that the most appropriate systems of solvents for qualitative analysis by TLC method of the mixture consisting of alprazolam, codeine and paracetanol are: system "D" (trichloromethane : acetone : conc. ammonia = 55 : 40 : 5 (v/v/v)) and system "F" (trichloromethane : diethyl ether: isobutanol : conc. ammonia = 50 : 30 : 15 : 5 (v/v/v/v)). For qualitative analysis of the mixture consisting of alprazolam, codeine and paracetamol by HPLC method the chromatographic column ACE C18 (25 cm x 4.6 mm x 5 µm), gradient elution mode (mixture of 3% acetic acid and methanol and the flow rate 1 mL/min have been used. The injection volume was 10 pL. Photodiode array detector (210 - 240 nm range) has been used. UV absorption spectra of materials measured using photodiode array detector have been identical to those presented in the scientific literature.

Harms of unsuccessful donation after circulatory death: An exploratory study.

PubMed

Taylor, Lauren J; Buffington, Anne; Scalea, Joseph R; Fost, Norman; Croes, Kenneth D; Mezrich, Joshua D; Schwarze, Margaret L

2018-02-01

While donation after circulatory death (DCD) has expanded options for organ donation, many who wish to donate are still unable to do so. We conducted face-to-face interviews with family members (N = 15) who had direct experience with unsuccessful DCD and 5 focus groups with professionals involved in the donation process. We used qualitative content analysis to characterize the harms of nondonation as perceived by participants. Participants reported a broad spectrum of harms affecting organ recipients, donors, and donor families. Harms included waste of precious life-giving organs and hospital resources, inability to honor the donor's memory and character, and impaired ability for families to make sense of tragedy and cope with loss. Donor families empathized with the initial hope and ultimate despair of potential recipients who must continue their wait on the transplant list. Focus group members reinforced these findings and highlighted the struggle of families to navigate the uncertainty regarding the timing of death during the donation process. While families reported significant harm, many appreciated the donation attempt. These findings highlight the importance of organ donation to donor families and the difficult experiences associated with current processes that could inform development of alternative donation strategies. © 2017 The American Society of Transplantation and the American Society of Transplant Surgeons.

Strengths and weaknesses in the implementation of maternal and perinatal death reviews in Tanzania: perceptions, processes and practice.

PubMed

Armstrong, C E; Lange, I L; Magoma, M; Ferla, C; Filippi, V; Ronsmans, C

2014-09-01

Tanzania institutionalised maternal and perinatal death reviews (MPDR) in 2006, yet there is scarce evidence on the extent and quality of implementation of the system. We reviewed the national policy documentation and explored stakeholders' involvement in, and perspectives of, the role and practices of MPDR in district and regional hospitals, and assessed current capacity for achieving MPDR. We reviewed the national MPDR guidelines and conducted a qualitative study using semi-structured interviews. Thirty-two informants in Mara Region were interviewed within health administration and hospitals, and five informants were included at the central level. Interviews were analysed for comparison of statements across health system level, hospital, profession and MPDR experience. The current MPDR system does not function adequately to either perform good quality reviews or fulfil the aspiration to capture every facility-based maternal and perinatal death. Informants at all levels express differing understandings of the purpose of MPDR. Hospital reviews fail to identify appropriate challenges and solutions at the facility level. Staff are committed to the process of maternal death review, with routine documentation and reporting, yet action and response are insufficient. The confusion between MPDR and maternal death surveillance and response results in a system geared towards data collection and surveillance, failing to explore challenges and solutions from within the remit of the hospital team. This reduces the accountability of the health workers and undermines opportunities to improve quality of care. We recommend initiatives to strengthen the quality of facility-level reviews in order to establish a culture of continuous quality of care improvement and a mechanism of accountability within facilities. Effective facility reviews are an important peer-learning process that should remain central to quality of care improvement strategies. © 2014 John Wiley & Sons Ltd.

"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.

Epidemiological response to a suspected excess of cancer among a group of workers exposed to multiple radiological and chemical hazards

PubMed Central

Baysson, H; Laurier, D; Tirmarche, M; Valenty, M; Giraud, J

2000-01-01

OBJECTIVE—An excess of cancer was suspected by workers of the metallurgy department at the French Atomic Energy Commissariat (CEA) after several deaths from cancer were reported in 1983 and 1984. After a descriptive study performed by the CEA in 1985 the results of which were not conclusive enough to put an end to the controversy, the present cohort study was undertaken in 1989.
METHODS—As no specific exposure, or a precise cancer site was suspected, it was decided to include all subjects who had worked at the metallurgy department for at least 1 year between 1950 and 1968. The cohort was followed up to 31 December 1990. Individual occupational exposures were determined retrospectively for each year from 1950 to 1990, both qualitatively (annual job, and hazard records, and assistance from former workers) and quantitatively (for external radiation). On the basis of these exposures, three types of occupational tasks were identified: handling of chemicals, radionuclides, and external radiation. Standardised mortality ratios (SMRs) were calculated to estimate the risk of death, and the existence of an association between risk of cancer and each of the three tasks was tested.
RESULTS—The cohort included 356 workers, followed up for an average of 30 years (total of 10 820 person-years). The number of deaths from all causes and from all cancer sites were respectively 44 and 21. No excess of cancer deaths was found for the study period (SMR 0.77), nor was there a peak in 1983-4. The risk of death from all cancer sites increased with the duration of exposure to chemicals.
CONCLUSION—The results do not justify the workers' impression of an excess of cancer. They suggest, however, that the duration of work at some tasks that involved handling chemicals may be an indicator of risk of cancer. Communication to the workers during the study played an important part in reducing their concern, contributing to their better understanding of the results.


Keywords: epidemiology; cancer; mortality; cluster; occupational exposures PMID:10810101

Turkey’s Epidemiological and Demographic Transitions: 1931-2013

PubMed Central

Bakar, Coşkun; Oymak, Sibel; Maral, Işıl

2017-01-01

Background: The causes of death have changed with regard to the epidemiological and demographic events in society. There is no evidence of prior research into the epidemiological transition in Turkey. This transition in Turkey should be observed starting with the Ottoman Empire period (19th to early 20th century). However, information about the Ottoman Empire is quite limited. Aims: To discuss the epidemiological and demographic transitions in Turkey, using demographic, educational and urbanization data in our present study. Study Design: A descriptive archive study. Methods: Mortality statistics dating from 1931 and published by the Turkish Statistical Institute were analysed, and the causes of death were coded and classified according to ICD-10. Other data were obtained from the published reports and studies regarding the issue. Results: In the 1930s, Turkey’s life expectancy was low (aged 40 years), fertility and mortality rates were high (respectively 45% and 31%), and the main causes of death were infectious diseases. Nowadays, life expectancy is close to 80 years, the total fertility rate has dropped to 2.1 per woman, and the main causes of death are chronic diseases and cancer. The population rate in the urban areas has increased steadily from 24.2% in 1927 to 77.3% in 2012. level of education has also increased during this period. In 1935, less than 10% of women were literate, and in 2013 90% were literate. Qualitative and quantitative increase have been observed in the presentation and access of healthcare services compared to the early years of the Republic. Conclusion: Turkey has been undergoing a modernization period in the last 200 years, and it is believed that the epidemiological and demographic transitions result from this period. This process has led to urbanization and an increase in the level of education, as well as a decrease in premature deaths, lower fertility rates, and an increase in the elderly population and chronic diseases. It is therefore our conclusion that Turkey needs policies regarding the elderly population and the management of chronic diseases. PMID:28443561

Perspectives on cervical cancer screening among educated Muslim women in Dubai (the UAE): a qualitative study.

PubMed

Khan, Sarah; Woolhead, Gillian

2015-10-24

Cervical cancer (CC) is the seventh leading cause of death among women in the United Arab Emirates (UAE), with most deaths attributed to late detection of this cancer. The UAE lacks a national CC screening programme. Thus, cervical screening is only performed opportunistically during women's visits to health facilities. CC screening rates in the UAE are as low as 16.9 %, and little is known about the perspectives of the nation's educated Muslim women regarding screening. Consequently, the aim of this study is to explore Muslim women's perspectives towards cervical screening in Dubai to promote strategies for increasing its uptake, thereby leading to a decrease in morbidity and mortality associated with CC. Interpretivist and social constructivist epistemological approaches were applied for this qualitative study. Data were obtained through 13 in-depth interviews. Purposive and snowballing methods were used to recruit six South Asian women and seven Emirati women living in Dubai. Thematic content analysis was concurrently applied with comparative analysis to the data. Four themes regarding women's perceptions of CC emerged from the data. First, CC was considered a 'silent disease' that could be detected with early screening. However, it was also associated with extramarital sexual relations, which negatively influenced screening uptake. Second, women's fear, pain and embarrassment, along with cultural influences, deterred them from undergoing screening. Third, a growing mistrust of allopathic medicine and impersonal healthcare promoted a negative view of screening. Last, women became aware of screening mainly when they were pregnant or receiving fertility treatment. The study highlighted a number of important factors relating to cultural, religious and sexual behaviour that shaped educated Muslim women's perspectives on CC screening. Evidently, the current opportunistic approach to screening is flawed. A national awareness programme on CC screening should be developed, tailored to the sociocultural norms of the Muslim community, to promote knowledge regarding the causes of CC and the importance of screening.

Multimorbid outpatients: A high frequency of FP appointments and/or family difficulties, should alert FPs to the possibility of death or acute hospitalization occurring within six months; A primary care feasibility study

PubMed Central

Nabbe, Patrice; Billot Grasset, Alice; Le Floch, Bernard; Grall, Pauline; Derriennic, Jeremy; odorico, Michele; Lalande, Sophie; le Goff, Delphine; Barais, Marie; Chiron, Benoit; Lingner, Heidrun; Guillou, Morgane; Barraine, Pierre

2017-01-01

Background The European General Practitioners Research Network (EGPRN) designed and validated a comprehensive definition of multimorbidity using a systematic literature review and qualitative research throughout Europe. This definition was tested as a model to assess death or acute hospitalization in multimorbid outpatients. Objective To assess which criteria in the EGPRN concept of multimorbidity could detect outpatients at risk of death or acute hospitalization in a primary care cohort at a 6-month follow-up and to assess whether a large scale cohort with FPs would be feasible. Method Family Physicians included a random sample of multimorbid patients who attended appointments in their offices from July to December 2014. Inclusion criteria were those of the EGPRN definition of Multimorbidity. Exclusion criteria were patients under legal protection and those unable to complete the 2-year follow-up. Statistical analysis was undertaken with uni- and multivariate analysis at a 6-month follow-up using a combination of approaches including both automatic classification and expert decision making. A Multiple Correspondence Analysis (MCA) completed the process with a projection of illustrative variables. A logistic regression was finally performed in order to identify and quantify risk factors for decompensation. Results 19 FPs participated in the study. 96 patients were analyzed. 3 different clusters were identified. MCA showed the central function of psychosocial factors and peaceful versus conflictual relationships with relatives in all clusters. While taking into account the limit of a small cohort, age, frequency of family physician visits and extent of family difficulties were the factors which predicted death or acute hospitalization. Conclusion A large scale cohort seems feasible in primary care. A sense of alarm should be triggered to prevent death or acute hospitalization in multimorbid older outpatients who have frequent family physician visits and who experience family difficulties. PMID:29095849

Personalizing death in the intensive care unit: the 3 Wishes Project: a mixed-methods study.

PubMed

Cook, Deborah; Swinton, Marilyn; Toledo, Feli; Clarke, France; Rose, Trudy; Hand-Breckenridge, Tracey; Boyle, Anne; Woods, Anne; Zytaruk, Nicole; Heels-Ansdell, Diane; Sheppard, Robert

2015-08-18

Dying in the complex, efficiency-driven environment of the intensive care unit can be dehumanizing for the patient and have profound, long-lasting consequences for all persons attendant to that death. To bring peace to the final days of a patient's life and to ease the grieving process. Mixed-methods study. 21-bed medical-surgical intensive care unit. Dying patients and their families and clinicians. To honor each patient, a set of wishes was generated by patients, family members, or clinicians. The wishes were implemented before or after death by patients, families, clinicians (6 of whom were project team members), or the project team. Quantitative data included demographic characteristics, processes of care, and scores on the Quality of End-of-Life Care-10 instrument. Semistructured interviews of family members and clinicians were transcribed verbatim, and qualitative description was used to analyze them. Participants included 40 decedents, at least 1 family member per patient, and 3 clinicians per patient. The 159 wishes were implemented and classified into 5 categories: humanizing the environment, tributes, family reconnections, observances, and "paying it forward." Scores on the Quality of End-of-Life Care-10 instrument were high. The central theme from 160 interviews of 170 persons was how the 3 Wishes Project personalized the dying process. For patients, eliciting and customizing the wishes honored them by celebrating their lives and dignifying their deaths. For families, it created positive memories and individualized end-of-life care for their loved ones. For clinicians, it promoted interprofessional care and humanism in practice. Impaired consciousness limited understanding of patients' viewpoints. The 3 Wishes Project facilitated personalization of the dying process through explicit integration of palliative and spiritual care into critical care practice. Hamilton Academy of Health Science Research Organization, Canadian Intensive Care Foundation.

Caught between intending and doing: older people ideating on a self-chosen death

PubMed Central

van Wijngaarden, Els; Leget, Carlo; Goossensen, Anne

2016-01-01

Objectives The aim of this paper is to provide insight into what it means to live with the intention to end life at a self-chosen moment from an insider perspective. Setting Participants who lived independent or semidependent throughout the Netherlands. Participants 25 Dutch older citizens (mean age of 82 years) participated. They were ideating on a self-chosen death because they considered their lives to be no longer worth living. Inclusion criteria were that they: (1) considered their lives to be ‘completed’; (2) suffered from the prospect of living on; (3) currently wished to die; (4) were 70 years of age or older; (5) were not terminally ill; (6) considered themselves to be mentally competent; (7) considered their death wish reasonable. Design In this qualitative study, in-depth interviews were carried out in the participants’ everyday home environment (median lasting 1.56 h). Verbatim transcripts were analysed based on the principles of phenomenological thematic analysis. Results The liminality or ‘in-betweenness’ of intending and actually performing self-directed death (or not) is characterised as a constant feeling of being torn explicated by the following pairs of themes: (1) detachment and attachment; (2) rational and non-rational considerations; (3) taking control and lingering uncertainty; (4) resisting interference and longing for support; (5) legitimacy and illegitimacy. Conclusions Our findings show that the in-between period emerges as a considerable, existential challenge with both rational and non-rational concerns and thoughts, rather than a calculative, coherent sum of rational considerations. Our study highlights the need to take due consideration of all ambiguities and ambivalences present after a putatively rational decision has been made in order to develop careful policy and support for this particular group of older people. PMID:26781505

Journey to vaccination: a protocol for a multinational qualitative study.

PubMed

Wheelock, Ana; Miraldo, Marisa; Parand, Anam; Vincent, Charles; Sevdalis, Nick

2014-01-31

In the past two decades, childhood vaccination coverage has increased dramatically, averting an estimated 2-3 million deaths per year. Adult vaccination coverage, however, remains inconsistently recorded and substandard. Although structural barriers are known to limit coverage, social and psychological factors can also affect vaccine uptake. Previous qualitative studies have explored beliefs, attitudes and preferences associated with seasonal influenza (flu) vaccination uptake, yet little research has investigated how participants' context and experiences influence their vaccination decision-making process over time. This paper aims to provide a detailed account of a mixed methods approach designed to understand the wider constellation of social and psychological factors likely to influence adult vaccination decisions, as well as the context in which these decisions take place, in the USA, the UK, France, India, China and Brazil. We employ a combination of qualitative interviewing approaches to reach a comprehensive understanding of the factors influencing vaccination decisions, specifically seasonal flu and tetanus. To elicit these factors, we developed the journey to vaccination, a new qualitative approach anchored on the heuristics and biases tradition and the customer journey mapping approach. A purposive sampling strategy is used to select participants who represent a range of key sociodemographic characteristics. Thematic analysis will be used to analyse the data. Typical journeys to vaccination will be proposed. Vaccination uptake is significantly influenced by social and psychological factors, some of which are under-reported and poorly understood. This research will provide a deeper understanding of the barriers and drivers to adult vaccination. Our findings will be published in relevant peer-reviewed journals and presented at academic conferences. They will also be presented as practical recommendations at policy and industry meetings and healthcare professionals' forums. This research was approved by relevant local ethics committees.

Journey to vaccination: a protocol for a multinational qualitative study

PubMed Central

Wheelock, Ana; Miraldo, Marisa; Parand, Anam; Vincent, Charles; Sevdalis, Nick

2014-01-01

Introduction In the past two decades, childhood vaccination coverage has increased dramatically, averting an estimated 2–3 million deaths per year. Adult vaccination coverage, however, remains inconsistently recorded and substandard. Although structural barriers are known to limit coverage, social and psychological factors can also affect vaccine uptake. Previous qualitative studies have explored beliefs, attitudes and preferences associated with seasonal influenza (flu) vaccination uptake, yet little research has investigated how participants’ context and experiences influence their vaccination decision-making process over time. This paper aims to provide a detailed account of a mixed methods approach designed to understand the wider constellation of social and psychological factors likely to influence adult vaccination decisions, as well as the context in which these decisions take place, in the USA, the UK, France, India, China and Brazil. Methods and analysis We employ a combination of qualitative interviewing approaches to reach a comprehensive understanding of the factors influencing vaccination decisions, specifically seasonal flu and tetanus. To elicit these factors, we developed the journey to vaccination, a new qualitative approach anchored on the heuristics and biases tradition and the customer journey mapping approach. A purposive sampling strategy is used to select participants who represent a range of key sociodemographic characteristics. Thematic analysis will be used to analyse the data. Typical journeys to vaccination will be proposed. Ethics and dissemination Vaccination uptake is significantly influenced by social and psychological factors, some of which are under-reported and poorly understood. This research will provide a deeper understanding of the barriers and drivers to adult vaccination. Our findings will be published in relevant peer-reviewed journals and presented at academic conferences. They will also be presented as practical recommendations at policy and industry meetings and healthcare professionals’ forums. This research was approved by relevant local ethics committees. PMID:24486678

Early parental adjustment and bereavement after childhood cancer death.

PubMed

Barrera, Maru; O'Connor, Kathleen; D'Agostino, Norma Mammone; Spencer, Lynlee; Nicholas, David; Jovcevska, Vesna; Tallet, Susan; Schneiderman, Gerald

2009-07-01

This study comprehensively explored parental bereavement and adjustment at 6 months post-loss due to childhood cancer. Interviews were conducted with 18 mothers and 13 fathers. Interviews were transcribed verbatim and analyzed based on qualitative methodology. A model describing early parental bereavement and adaptation emerged with 3 domains: (1) Perception of the Child, describing bereavement and adjustment prior to and after the loss; (2) Perception of Others, including relationships with partners, surviving children, and their social network; and (3) Perception of the World, exploring parents' perceived meanings of the experience in the context of their worldview. Domains are illustrated by quotes. Profiles of parental bereavement emerged.

Building a Middle-Range Theory of Adaptive Spirituality.

PubMed

Dobratz, Marjorie C

2016-04-01

The purpose of this article is to describe a Roy adaptation model based- research abstraction, the findings of which were synthesized into a middle-range theory (MRT) of adaptive spirituality. The published literature yielded 21 empirical studies that investigated religion/spirituality. Quantitative results supported the influence of spirituality on quality of life, psychosocial adjustment, well-being, adaptive coping, and the self-concept mode. Qualitative findings showed the importance of spiritual expressions, values, and beliefs in adapting to chronic illness, bereavement, death, and other life transitions. These findings were abstracted into six theoretical statements, a conceptual definition of adaptive spirituality, and three hypotheses for future testing. © The Author(s) 2016.

Experiences and Expressions of Spirituality at the End of Life in the Intensive Care Unit.

PubMed

Swinton, Marilyn; Giacomini, Mita; Toledo, Feli; Rose, Trudy; Hand-Breckenridge, Tracy; Boyle, Anne; Woods, Anne; Clarke, France; Shears, Melissa; Sheppard, Robert; Cook, Deborah

2017-01-15

The austere setting of the intensive care unit (ICU) can suppress expressions of spirituality. To describe how family members and clinicians experience and express spirituality during the dying process in a 21-bed medical-surgical ICU. Reflecting the care of 70 dying patients, we conducted 208 semistructured qualitative interviews with 76 family members and 150 clinicians participating in the Three Wishes Project. Interviews were recorded and transcribed verbatim. Data were analyzed by three investigators using qualitative interpretive description. Participants characterize dying as a spiritual event. Spirituality is an integral part of the life narrative of the patient before, during, and after death. Experiences and expressions of spirituality for patients, families, and clinicians during end-of-life care in the ICU are supported by eliciting and implementing wishes in several ways. Eliciting wishes stimulates conversations for people of diverse spiritual orientations to respond to death in personally meaningful ways that facilitate continuity and closure, and ease emotional trauma. Soliciting wishes identifies positive aspirations, which provide comfort in the face of death. The act of soliciting wishes brings clinician humanity to the fore. Wishing makes individual spiritual preferences and practices more accessible. Wishes may be grounded in spiritual goals, such as peace, comfort, connections, and tributes; they may seek a spiritually enhanced environment or represent specific spiritual interventions. Family members and clinicians consider spirituality an important dimension of end-of-life care. The Three Wishes Project invites and supports the expression of myriad forms of spirituality during the dying process in the ICU.

Cultural imperatives and the ethics of verbal autopsies in rural Ghana

PubMed Central

Aborigo, Raymond A.; Allotey, Pascale; Tindana, Paulina; Azongo, Daniel; Debpuur, Cornelius

2013-01-01

Background Due to a paucity of statistics from vital registration systems in developing countries, the verbal autopsy (VA) approach has been used to obtain cause-specific mortality data by interviewing lay respondents on the signs and symptoms experienced by the deceased prior to death. In societies where the culture of mourning is adhered to, the use of VA could clash with traditional norms, thus warranting ethical consideration by researchers. Objective The study was designed to explore the ethics and cultural context of collecting VA information through a demographic and health surveillance system in the Kassena-Nankana District (KND) of Ghana. Study Design Data were collected through qualitative in-depth interviews (IDIs) with four field staff involved in the routine conduct of VAs, four physicians who code VAs, 20 selected respondents to the VA tool, and eight opinion leaders in the KND. The interviews were supplemented with observation by the researchers and with the field notes of field workers. Interviews were audio-recorded, and local language versions transcribed into English. Thematic analysis was performed using QSR NVivo 8 software. Results The data indicate that cultural sensitivities in VA procedures at both the individual and family levels need greater consideration not only for ethical reasons but also to ensure the quality of the data. Discussions of some deaths are culturally prohibited and therefore lead to refusal of interviews. Families were also concerned about the confidentiality of information because of the potential of blame for the death. VA teams do not necessarily engage in culturally appropriate bereavement practices such as the presentation of tokens. The desire by families for feedback on the cause of death, which is currently not provided by researchers, was frequently expressed. Finally, no standard exists on the culturally acceptable time interval between death and VA interviews. Conclusion Ethical issues need to be given greater consideration in the collection of cause of death data, and this can be achieved through the establishment of processes that allow active engagement with communities, authorities of civil registrations, and Institutional Review Boards to take greater account of local contexts. PMID:24054087

Assessing the capability to experience a 'good death': A qualitative study to directly elicit expert views on a new supportive care measure grounded in Sen's capability approach

PubMed Central

2018-01-01

Background Sen’s capability approach is underspecified; one decision left to those operationalising the approach is how to identify sets of relevant and important capabilities. Sen has suggested that lists be developed for specific policy or research objectives through a process of public reasoning and discussion. Robeyns offers further guidance in support of Sen’s position, suggesting that lists should be explicit, discussed and defended; methods be openly scrutinised; lists be considered both in terms of what is ideal and what is practical (‘generality’); and that lists be exhaustive. Here, the principles suggested by Robeyns are operationalised to facilitate external scrutiny of a list of capabilities identified for use in the evaluation of supportive end of life care. Methods This work started with an existing list of seven capabilities (the ICECAP-SCM), identified as being necessary for a person to experience a good death. Semi-structured qualitative interviews were conducted with 20 experts in economics, psychology, ethics and palliative care, to facilitate external scrutiny of the developed list. Interviews were recorded, transcribed and analysed using constant comparison. Results The seven capabilities were found to encompass concepts identified as important by expert stakeholders (to be exhaustive) and the measure was considered feasible for use with patients receiving care at the end of life. Conclusion The rigorous development of lists of capabilities using both initial participatory approaches with affected population groups, and subsequent assessment by experts, strengthens their democratic basis and may encourage their use in policy contexts. PMID:29466414

Spouses' reflections on implantable cardioverter defibrillator treatment with focus on the future and the end-of-life: a qualitative content analysis.

PubMed

Fluur, Christina; Bolse, Kärstin; Strömberg, Anna; Thylén, Ingela

2014-08-01

To explore future reflections of spouses living with an implantable cardioverter defibrillator recipient with focus on the end-of-life phase in an anticipated palliative phase. A history of or risk for life-threatening arrhythmias may require an implantable cardioverter defibrillator. Despite the life-saving capacity of the device, eventually life will come to an end. As discussion about preferences of shock therapy at end-of-life phase seldom takes place in advance, the implantable cardioverter defibrillator recipients may face defibrillating shocks in the final weeks of their lives, adding to stress and anxiety in patients and their families. Qualitative study with in-depth interviews analysed with a content analysis. Interviews were performed with 18 spouses of medically stable implantable cardioverter defibrillator recipients during 2011-2012. The spouses described how they dealt with changes in life and an uncertain future following the implantable cardioverter defibrillator implantation. Six subcategories conceptualized the spouses' concerns: Aspiring for involvement; Managing an altered relationship; Being attentive to warning signs; Worries for deterioration in the partner's health; Waiting for the defibrillating shock; and Death is veiled in silence. Despite the partner's serious state of health; terminal illness or death and the role of the device was seldom discussed with healthcare professionals or the implantable cardioverter defibrillator recipient. Open and honest communication was requested as important to support coping with an unpredictable life situation and to reduce worries and uncertainty about the future and end-of-life. © 2013 John Wiley & Sons Ltd.

The role of HIV testing, counselling, and treatment in coping with HIV/AIDS in Uganda: a qualitative analysis.

PubMed

Nyanzi-Wakholi, Barbara; Lara, Antonieta Medina; Watera, Christine; Munderi, Paula; Gilks, Charles; Grosskurth, Heiner

2009-07-01

HIV/AIDS has had a devastating impact at individual, household and community levels. This qualitative research investigates the role of HIV voluntary counselling and testing (VCT) and treatment in enabling HIV-positive Ugandans to cope with this disease. Twelve predetermined focus group discussions (FGDs) were conducted; six with men and six with women. Half of the men and women's groups were receiving antiretroviral therapy (ART) and half were not. An FGD was held with the health care providers administering ART. Testing for HIV was perceived as soliciting a death warrant. Participants affirmed that the incentive for testing was the possibility of accessing free ART. They described experiencing gender-variant stigma and depression on confirming their HIV status and commended the role of counselling in supporting them to adopt positive living. For those receiving ART, counselling reinforced treatment adherence. The findings also revealed gender differences in treatment adherence strategies. ART was described to reduce disease symptoms and restore physical health allowing them to resume their daily activities. Additionally, ART was preferred over traditional herbal treatment because it had clear dosages, expiry dates and was scientifically manufactured. Those that were not receiving ART bore myths and misconceptions about the effectiveness and side effects of ART, delaying the decision to seek treatment. Stigma and the attached concern of HIV/AIDS-related swift death, is a major barrier for VCT. Based on this study's findings, ensuring the provision of quality assured and gender conscious VCT and ART delivery services will enhance positive living and enforce compliance to ART programmes.

Nurses' Experiences With Patients Who Die From Failure to Rescue After Surgery.

PubMed

Bacon, Cynthia Thornton

2017-05-01

To describe the lived experiences of hospital nurses caring for surgical patients who died from failure to rescue (FTR). A qualitative phenomenologic approach was used. Methods to ensure rigor and trustworthiness were incorporated into the design. The investigator conducted one-on-one semistructured interviews with 14 nurses, and data were analyzed using Colaizzi's methods. Six themes were identified: (a) the environment surrounding the FTR was unexpected; (b) FTR was unexpected but not preventable; (c) nurses were emotionally ill-prepared for the FTR; (d) nurse outcomes are different in unexpected versus expected death; (e) nurses' roles as protectors are important; and (f) FTR effects future nursing practice. Nurses' reactions after an FTR surgical death may be different when there is no identified nursing error contributing to the event. There may be key differences between deaths that are simply unexpected and those that involve FTR. The importance of mentoring junior nurses in protective surveillance skills is vital. Developing an understanding of nurses' experiences with FTR can assist nurse leaders to better support nurses who experience FTR deaths. Insight into the environment surrounding FTR deaths provides a foundation for future research aimed at improving patient safety and quality through an improved working environment for nurses. © 2017 Sigma Theta Tau International.

Death and help expected from nurses when dying.

PubMed

Shih, Fu-Jin; Gau, Meei-Ling; Lin, Yaw-Sheng; Pong, Suang-Jing; Lin, Hung-Ru

2006-07-01

This project was undertaken to ascertain the perceptions of a group of Taiwan's fourth-year bachelor of science in nursing (BSN) students regarding death and help expected from nurses during the dying process. Within the Chinese culture, death is one of the most important life issues. However, in many Chinese societies it is difficult for people to reveal their deepest feelings to their significant others or loved ones. It was in this context that this project was developed because little is known about how Taiwan's nursing students perceive death and the dying process. Using an open-ended, self-report questionnaire, 110 senior BSN students recorded their thoughts on: (1) their fears before physical death; (2) afterlife destinations; and (3) the help they would expect from nurses when dying. The data were analyzed using a three-layer qualitative thematic analysis. The students' reported needs during the dying process were directed towards three main goals: (1) help in reaching the 'triple targets of individual life'; (2) help in facilitating in-depth support so that both the dying person and significant others can experience a blessed farewell; and (3) help in reaching a destination in the afterlife. The results support the belief of dying as a transition occurring when life weans itself from the mortal world and prepares for an afterlife.

Life review in advanced age: qualitative research on the 'start in life' of 90-year-olds in the Lothian Birth Cohort 1921.

PubMed

Lapsley, Hilary; Pattie, Alison; Starr, John M; Deary, Ian J

2016-04-01

This research report presents findings on 'start in life' from a qualitative study of 90-year-olds from the Lothian Birth Cohort 1921. The study aimed to contextualise the LBC1921 cohort in time and place, describe cohort members' experiences of family and schooling and stimulate further inquiry into the relationships between 'start in life' and risk and resilience factors relating to longevity and healthy ageing. Scottish education and family life in the early 1930s are briefly described. Life review questionnaire: A qualitative Life Review Questionnaire was developed, requiring free-text handwritten responses. Its 'Start in Life' section focused on schooling and family support. Wave 4 of the Lothian Birth Cohort 1921 involved testing 129 members near to their 90(th) birthday. They reside largely in Edinburgh and its environs. The Life Review Questionnaire was administered to 126 participants, 54 % women. Qualitative analysis: Thematic analysis was the qualitative technique used to categorise, code and extract meaning from questionnaire text. Narratives were extracted from the data to present illustrative stories. Narratives of start in life gave contextual description. Thematic analysis showed LBC1921 members enjoying their schooling, highlighting teachers, academic achievement, school activities and school friendships. Personal qualities, family circumstances and aspects of schooling sometimes hindered educational performance. Family life was recalled mostly with warmth and parents were often portrayed as valuing education and supporting learning and development. Family adversity from poverty, parental illness and parental death was often mitigated by support from parents (or the remaining parent). Overall, most cohort members believed that they had got off to a good 'start in life'. This qualitative investigation of 'start in life' adds context and richness to quantitative investigations of the sizeable LBC1921 cohort, stimulating fresh insights and hypotheses into the relationship between child risk and resilience factors that may influence ageing. It demonstrates the utility and wider application of the Life Review Questionnaire. Although the surviving cohort is not representative of their childhood peers, their words provide insight into the processes of weaving experience and memory into a rich texture of meanings that may help create wellbeing across a lifetime.

Penna Bit-String Model with Constant Population

NASA Astrophysics Data System (ADS)

de Oliveira, P. M. C.; de Oliveira, S. Moss; Sá Martins, J. S.

We removed from the Penna model for biological aging any random killing Verhulst factor. Deaths are due only to genetic diseases and the population size is fixed, instead of fluctuating around some constant value. We show that these modifications give qualitatively the same results obtained in an earlier paper, where the random killings (used to avoid an exponential increase of the population) were applied only to newborns.

Designing a model for trauma system management using public health approach: the case of Iran.

PubMed

Tarighi, Payam; Tabibi, Seyed Jamaledin; Motevalian, Seyed Abbas; Tofighi, Shahram; Maleki, Mohammad Reza; Delgoshaei, Bahram; Panahi, Farzad; Masoomi, Gholam Reza

2012-01-01

Trauma is a leading cause of death and disability around the world. Injuries are responsible for about six million deaths annually, of which ninety percent occur in developing countries. In Iran, injuries are the most common cause of death among age groups below fifty. Trauma system development is a systematic and comprehensive approach to injury prevention and treatment whose effectiveness has been proved. The present study aims at designing a trauma system management model as the first step toward trauma system establishment in Iran. In this qualitative research, a conceptual framework was developed based on the public health approach and three well-known trauma system models. We used Benchmarks, Indicators and Scoring (BIS) to analyze the current situation of Iran trauma care system. Then the trauma system management was designed using the policy development phase of public health approach The trauma system management model, validated by a panel of experts, describes lead agency, trauma system plan, policy-making councils, and data-based control according to the four main functions of management: leading, planning, organizing and controlling. This model may be implemented in two phases: the exclusive phase, focusing on resource integration and the inclusive phase, which concentrates on system development. The model could facilitate the development of trauma system in Iran through pilot studies as the assurance phase of public health approach. Furthermore, the model can provide a practical framework for trauma system management at the international level.

Paradox of Prescribing Late Chemotherapy: Oncologists Explain.

PubMed

Bluhm, Minnie; Connell, Cathleen M; De Vries, Raymond G; Janz, Nancy K; Bickel, Kathleen E; Silveira, Maria J

2016-12-01

The value of chemotherapy for patients with cancer in the last weeks of life warrants examination. Late chemotherapy may not improve survival or quality of life but typically precludes hospice enrollment and may result in additional symptoms, increased use of other aggressive treatments, and worsening quality of life. Few studies have explored oncologists' rationales for administering chemotherapy near death. This study examines the self-reported factors that influence oncologists' decisions about late chemotherapy. In-depth individual interviews were conducted with 17 oncologists through a semistructured interview guide. Interviews were audio recorded and transcribed verbatim. Transcripts were coded and analyzed using conventional content analysis, a qualitative method that allows the detection and analysis of patterns in the data. Clinical factors take priority in determining late chemotherapy decisions when clear treatment choices exist. When clinical factors are ambiguous, emotion becomes a highly salient influence. Oncologists view late chemotherapy to be patient driven and use it to palliate emotional distress and maintain patient hope even when physical benefit is unexpected. Oncologists experience unique and difficult challenges when caring for dying patients, including emotionally draining communication, overwhelming responsibility for life/death, limitations of oncology to heal, and prognostic uncertainty. These challenges are also eased by offering late chemotherapy. The findings reveal a nuanced understanding of why oncologists find it difficult to refuse chemotherapy treatment for patients near death. Optimal end-of-life treatment decisions require supportive interventions and system change, both of which must take into account the challenges oncologists face.

The experience of living with advanced-stage cancer: a thematic synthesis of the literature.

PubMed

García-Rueda, N; Carvajal Valcárcel, A; Saracíbar-Razquin, M; Arantzamendi Solabarrieta, M

2016-07-01

The aim of the study was to understand the experience of people living with advanced-stage cancer through literature. The search included The Cochrane Library, PubMed, PsycInfo, CINAHL and Cuiden. Thirteen studies were included. A qualitative meta-synthesis was conducted. One thread emerged from the thematic synthesis: the desire to live as normally as possible, despite being aware of the proximity of death. Three themes also emerged: "a process that is unique" with its four sub-themes; "support network" and "health context," each of them having two sub-themes. This study concludes that living with advanced-stage cancer is a unique and complex process which has both positive and negative aspects. The review provides a comprehensive view of the experience, which considers the importance of the support network and the health context in which the person lives. In this study, "normalcy" is the adjustment to the new reality and living as closely as possible to the way one lived before the disease, while developing a new relationship with being finite and death. A better understanding of the experience of living with advanced-stage cancer will help health professionals to identify the needs of the patients in order to plan individual, high-quality care. © 2016 John Wiley & Sons Ltd.

Adult patient decision-making regarding implantation of complex cardiac devices: a scoping review.

PubMed

Malecki-Ketchell, Alison; Marshall, Paul; Maclean, Joan

2017-10-01

Complex cardiac rhythm management device (CRMD) therapy provides an important treatment option for people at risk of sudden cardiac death. Despite the survival benefit, device implantation is associated with significant physical and psychosocial concerns presenting considerable challenges for the decision-making process surrounding CRMD implantation for patients and physicians. The purpose of this scoping review was to explore what is known about how adult (>16 years) patients make decisions regarding implantation of CRMD therapy. Published, peer reviewed, English language studies from 2000 to 2016 were identified in a search across eight healthcare databases. Eligible studies were concerned with patient decision-making for first time device implantation. Quality assessment was completed using the mixed methods appraisal tool for all studies meeting the inclusion criteria. The findings of eight qualitative and seven quantitative studies, including patients who accepted or declined primary or secondary sudden cardiac death prevention devices, were clustered into two themes: knowledge acquisition and the process of decision-making, exposing similarities and distinctions with the treatment decision-making literature. The review revealed some insight in to the way patients approach decision-making but also exposed a lack of clarity and research activity specific to CRMD patients. Further research is recommended to support the development and application of targeted decision support mechanisms.

Mothers’ Perception of Quality of Services from Health Centers after Perinatal Loss

PubMed Central

Sereshti, Manije; Nahidi, Fateme; Simbar, Masomeh; Ahmadi, Fazlollah; Bakhtiari, Maryam; Zayeri, Farid

2016-01-01

Introduction Perinatal loss is one of the most stressful life events that parents and caregivers experience. Providing an empathetic, caring environment to support mothers who experience perinatal loss is necessary. The aim of this study was to assess mothers’ perception of the quality of services received from health centers after perinatal loss. Methods This study was conducted in 2014–2015 using qualitative content analysis. Participants in the study were 40 women with a history of miscarriage, stillbirth, or neonatal death who live in Tehran and Shahrekord, Iran. Data were collected from the participants through semi-structured, in-depth interviews, and they were analyzed using qualitative content analysis. Results One theme and six main categories were developed, and they indicated the mothers’ experiences and understandings of the quality of service received after perinatal loss. The major theme was ‘dissatisfaction with the quality of care received.’ The main categories included: 1) effective communication, 2) expecting responsiveness, 3) expecting to respect the patient’s dignity, 4) expecting better care, 5) tension of medical expenses, and 6) insufficient facilities. Conclusion The findings of this study highlighted the weaknesses, inadequacies, strengths, and opportunities in providing health services. They can help reproductive health policy-makers reduce the pain and suffering of the affected families with appropriate measures. PMID:27054012

Do nursing homes for older people have the support they need to provide end-of-life care? A mixed methods enquiry in England

PubMed Central

Seymour, Jane E; Kumar, Arun; Froggatt, Katherine

2011-01-01

Nursing homes are a common site of death, but older residents receive variable quality of end-of-life care. We used a mixed methods design to identify external influences on the quality of end-of-life care in nursing homes. Two qualitative case studies were conducted and a postal survey of 180 nursing homes surrounding the case study sites. In the case studies, qualitative interviews were held with seven members of nursing home staff and 10 external staff. Problems in accessing support for end-of-life care reported in the survey included variable support by general practitioners (GPs), reluctance among GPs to prescribe appropriate medication, lack of support from other agencies, lack of out of hours support, cost of syringe drivers and lack of access to training. Most care homes were implementing a care pathway. Those that were not rated their end-of-life care as in need of improvement or as average. The case studies suggest that critical factors in improving end-of-life care in nursing homes include developing clinical leadership, developing relationships with GPs, the support of ‘key’ external advocates and leverage of additional resources by adoption of care pathway tools. PMID:21282349

"Ebola kills generations": Qualitative discussions with Liberian healthcare providers.

PubMed

Bell, Sue Anne; Munro-Kramer, Michelle L; Eisenberg, Marisa C; Williams, Garfee; Amarah, Patricia; Lori, Jody R

2017-02-01

the purpose of this study was to explore healthcare providers' perceptions and reactions to the Ebola Virus Disease (EVD) epidemic. a descriptive, qualitative study design was employed. Focus groups were conducted with Liberian healthcare providers who participated in care of patients with EVD. the study was conducted in Bong County, Liberia (population: 333,000), which was severely affected, with over 650 reported cases and close to 200 deaths by the end of 2015. the total sample of 58 participants, included 11 nurses, ten traditional birth attendants (TBAs), four midwives, 28 general community health volunteers, three physician assistants, one community member and one pharmacy dispenser. five core themes related to changes in healthcare practices and interactions since the EVD outbreak were identified based on the results of the focus groups; fear, stigma, resource constraints, lack of knowledge and training, and shifting cultural practices. this work represents a preliminary understanding of Liberian healthcare workers reactions to the EVD epidemic, and highlights the significant issues they faced as they attempted to care for patients and protect themselves. while the EVD epidemic has been declared over, preparedness activities for future disease outbreaks must continue. This study can inform future healthcare policy initiatives as well as preparedness activities targeted towards healthcare workers in low resource settings. Copyright © 2016 Elsevier Ltd. All rights reserved.

Perceptions of teenage women about marriage in adolescence in an Iranian setting: A qualitative study

PubMed Central

Mardi, Afrouz; Ebadi, Abbas; Shahbazi, Shirin

2018-01-01

Background and aim Early marriage threatens the health and human rights of millions of girls all around the world. The aim of this study was to explore the perceptions of Iranian teenage women about marriage in adolescence. Methods A qualitative study was conducted based on the conventional content analysis approach on 14 teenage married women (aged13–19 years) who attended all urban-rural healthcare centers (4 centers) in Ardabil, Iran between May 2016 and Jan 2017. Data were collected through in-depth semi-structured interviews. Purposeful sampling was continued until data saturation. The data were analyzed using the Graneheim and Landman strategies. Results The mean age at marriage was 13.2 (SD=1.25) years and the duration of marital life ranged from 45 days to 3 years. During the data analysis, three main categories were extracted that each of them consisted of three sub-categories. The main categories, included “a false sense of sexual development”, “death of dreams”, and “threatened independence”. Conclusion Results of this study revealed that teenage women could not comprehend opportunities in life. These findings could help health care providers and policy makers to provide teenage women with special care and better support to prevent negative consequences of early marriage. PMID:29629050

Parental consent for bone marrow transplantation in the case of genetic disorders.

PubMed

Prows, C A; McCain, G C

1997-01-01

To describe the responses of mothers and fathers who were offered bone marrow transplantation (BMT) for their children with genetic disorders. Qualitative. Private hospital rooms/offices. Six mothers and 4 fathers of children with genetic disorders. The basic social-psychological problem confronting the parents was the conflicting alternatives of life versus death for their children. It was certain that these children would die from their genetic disorders but without having to endure the pain and suffering of a BMT. The BMT would be difficult, possibly resulting in death, but with a chance of survival. Parents believed that BMT was the only chance of survival for their children, leaving them no choice except to pursue the BMT treatment.

Witnessing a body in decline: Men's and women's perceptions of an altered physical appearance.

PubMed

Hilário, Ana Patrícia

2016-01-01

There has been a tendency within the literature to ignore how men and women who are very ill and at the end of life perceive and experience their visibly altered bodies. This article aims to provide new insights about this matter. A qualitative research approach was adopted. In-depth interviews were conducted with 10 hospice patients, 20 family members, and 20 members of hospice staff. Findings reveal that because of masculine and feminine norms, physical appearance is more a matter of concern to women than to men who are close to death. This contradicts theories that suggest that patients experience a disinvestment on their sense of masculinity and femininity alongside the process of bodily deterioration and decay prior impending potential death.

Public awareness of palliative care in Sweden.

PubMed

Westerlund, Caroline; Tishelman, Carol; Benkel, Inger; Fürst, Carl Johan; Molander, Ulla; Rasmussen, Birgit H; Sauter, Sylvia; Lindqvist, Olav

2018-06-01

The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region. Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.

Exploring the Experience of Life Stress Among Black Women with a History of Fetal or Infant Death: a Phenomenological Study.

PubMed

Brown, Kyrah K; Lewis, Rhonda K; Baumgartner, Elizabeth; Schunn, Christy; Maryman, J'Vonnah; LoCurto, Jamie

2017-06-01

Disparate birth outcomes among Black women continue to be a major public health problem. Whereas prior research has investigated the influence of stress on Black women's birth outcomes, few studies have explored how stress is experienced among Black women across the life course. The objectives of this study were to describe the experience of stress across the life course among Black women who reported a history of fetal or infant death and to identify stressful life events (SLE) that may not be represented in the widely used SLE inventory. Using phenomenological, qualitative research design, in-depth interviews were conducted with six Black women in Kansas who experienced a fetal or infant death. Analyses revealed that participants experienced multiple, co-occurring stressors over the course of their lives and experienced a proliferation of stress emerging in early life and persisting into adulthood. Among the types of stressors cited by participants, history of sexual assault (trauma-related stressor) was a key stressful life event that is not currently reflected in the SLE inventory. Our findings highlight the importance of using a life-course perspective to gain a contextual understanding of the experiences of stress among Black women, particularly those with a history of adverse birth outcomes. Further research investigating Black women's experiences of stress and the mechanisms by which stress impacts their health could inform efforts to reduce disparities in birth outcomes. An additional focus on the experience and impact of trauma-related stress on Black women's birth outcomes may also be warranted.

Barriers to the effective treatment and prevention of malaria in Africa: A systematic review of qualitative studies

PubMed Central

2009-01-01

Background In Africa, an estimated 300-500 million cases of malaria occur each year resulting in approximately 1 million deaths. More than 90% of these are in children under 5 years of age. To identify commonly held beliefs about malaria that might present barriers to its successful treatment and prevention, we conducted a systematic review of qualitative studies examining beliefs and practices concerning malaria in sub-Saharan African countries. Methods We searched Medline and Scopus (1966-2009) and identified 39 studies that employed qualitative methods (focus groups and interviews) to examine the knowledge, attitudes, and practices of people living in African countries where malaria is endemic. Data were extracted relating to study characteristics, and themes pertaining to barriers to malaria treatment and prevention. Results The majority of studies were conducted in rural areas, and focused mostly or entirely on children. Major barriers to prevention reported included a lack of understanding of the cause and transmission of malaria (29/39), the belief that malaria cannot be prevented (7/39), and the use of ineffective prevention measures (12/39). Thirty-seven of 39 articles identified barriers to malaria treatment, including concerns about the safety and efficacy of conventional medicines (15/39), logistical obstacles, and reliance on traditional remedies. Specific barriers to the treatment of childhood malaria identified included the belief that a child with convulsions could die if given an injection or taken to hospital (10/39). Conclusion These findings suggest that large-scale malaria prevention and treatment programs must account for the social and cultural contexts in which they are deployed. Further quantitative research should be undertaken to more precisely measure the impact of the themes uncovered by this exploratory analysis. PMID:19852857

Knowledge, attitudes, and practices related to uterotonic drugs during childbirth in Karnataka, India: a qualitative research study.

PubMed

Deepak, Nitya Nand; Mirzabagi, Ellie; Koski, Alissa; Tripathi, Vandana

2013-01-01

India has the highest annual number of maternal deaths of any country. As obstetric hemorrhage is the leading cause of maternal death in India, numerous efforts are under way to promote access to skilled attendance at birth and emergency obstetric care. Current initiatives also seek to increase access to active management of the third stage of labor for postpartum hemorrhage prevention, particularly through administration of an uterotonic after delivery. However, prior research suggests widespread inappropriate use of uterotonics at facilities and in communities-for example, without adequate monitoring or referral support for complications. This qualitative study aimed to document health providers' and community members' current knowledge, attitudes, and practices regarding uterotonic use during labor and delivery in India's Karnataka state. 140 in-depth interviews were conducted from June to August 2011 in Bagalkot and Hassan districts with physicians, nurses, recently delivered women, mothers-in-law, traditional birth attendants (dais), unlicensed village doctors, and chemists (pharmacists). Many respondents reported use of uterotonics, particularly oxytocin, for labor augmentation in both facility-based and home-based deliveries. The study also identified contextual factors that promote inappropriate uterotonic use, including high value placed on pain during labor; perceived pressure to provide or receive uterotonics early in labor and delivery, perhaps leading to administration of uterotonics despite awareness of risks; and lack of consistent and correct knowledge regarding safe storage, dosing, and administration of oxytocin. These findings have significant implications for public health programs in a context of widespread and potentially increasing availability of uterotonics. Among other responses, efforts are needed to improve communication between community members and providers regarding uterotonic use during labor and delivery and to target training and other interventions to address identified gaps in knowledge and ensure that providers and pharmacists have up-to-date information regarding proper usage of uterotonic drugs.

Telemedicine’s Potential to Support Good Dying in Nigeria: A Qualitative Study

PubMed Central

van Gurp, Jelle; Soyannwo, Olaitan; Odebunmi, Kehinde; Dania, Simpa; van Selm, Martine; van Leeuwen, Evert; Vissers, Kris; Hasselaar, Jeroen

2015-01-01

Objectives This qualitative study explores Nigerian health care professionals’ concepts of good dying/a good death and how telemedicine technologies and services would fit the current Nigerian palliative care practice. Materials and Methods Supported by the Centre for Palliative Care Nigeria (CPCN) and the University College Hospital (UCH) in Ibadan, Nigeria, the authors organized three focus groups with Nigerian health care professionals interested in palliative care, unstructured interviews with key role players for palliative care and representatives of telecom companies, and field visits to primary, secondary and tertiary healthcare clinics that provided palliative care. Data analysis consisted of open coding, constant comparison, diagramming of categorizations and relations, and extensive member checks. Results The focus group participants classified good dying into 2 domains: a feeling of completion of the individual life and dying within the community. Reported barriers to palliative care provision were socio-economic consequences of being seriously ill, taboos on dying and being ill, restricted access to adequate medical–technical care, equation of religion with medicine, and the faulty implementation of palliative care policy by government. The addition of telemedicine to Nigeria’s palliative care practice appears problematic, due to irregular bandwidth, poor network coverage, and unstable power supply obstructing interactivity and access to information. However, a tele-education ‘lite’ scenario seemed viable in Nigeria, wherein low-tech educational networks are central that build on non-synchronous online communication. Discussion Nigerian health care professionals’ concepts on good dying/a good death and barriers and opportunities for palliative care provision were, for the greater part, similar to prior findings from other studies in Africa. Information for and education of patient, family, and community are essential to further improve palliative care in Africa. Telemedicine can only help if low-tech solutions are applied that work around network coverage problems by focusing on non-synchronous online communication. PMID:26030154

Assimilation of Web-Based Urgent Stroke Evaluation: A Qualitative Study of Two Networks

PubMed Central

Mathiassen, Lars; Switzer, Jeffrey A; Adams, Robert J

2014-01-01

Background Stroke is a leading cause of death and serious, long-term disability across the world. Urgent stroke care treatment is time-sensitive and requires a stroke-trained neurologist for clinical diagnosis. Rural areas, where neurologists and stroke specialists are lacking, have a high incidence of stroke-related death and disability. By virtually connecting emergency department physicians in rural hospitals to regional medical centers for consultations, specialized Web-based stroke evaluation systems (telestroke) have helped address the challenge of urgent stroke care in underserved communities. However, many rural hospitals that have deployed telestroke have not fully assimilated this technology. Objective The objective of this study was to explore potential sources of variations in the utilization of a Web-based telestroke system for urgent stroke evaluation and propose a telestroke assimilation model to improve stroke care performance. Methods An exploratory, qualitative case study of two telestroke networks, each comprising an academic stroke center (hub) and connected rural hospitals (spokes), was conducted. Data were collected from 50 semistructured interviews with 40 stakeholders, telestroke usage logs from 32 spokes, site visits, published papers, and reports. Results The two networks used identical technology (called Remote Evaluation of Acute isCHemic stroke, REACH) and were of similar size and complexity, but showed large variations in telestroke assimilation across spokes. Several observed hub- and spoke-related characteristics can explain these variations. The hub-related characteristics included telestroke institutionalization into stroke care, resources for the telestroke program, ongoing support for stroke readiness of spokes, telestroke performance monitoring, and continuous telestroke process improvement. The spoke-related characteristics included managerial telestroke championship, stroke center certification, dedicated telestroke coordinator, stroke committee of key stakeholders, local neurological expertise, and continuous telestroke process improvement. Conclusions Rural hospitals can improve their stroke readiness with use of telestroke systems. However, they need to integrate the technology into their stroke delivery processes. A telestroke assimilation model may improve stroke care performance. PMID:25601232

Knowledge, Attitudes, and Practices Related to Uterotonic Drugs during Childbirth in Karnataka, India: A Qualitative Research Study

PubMed Central

Deepak, Nitya Nand; Mirzabagi, Ellie; Koski, Alissa; Tripathi, Vandana

2013-01-01

Background and Objectives India has the highest annual number of maternal deaths of any country. As obstetric hemorrhage is the leading cause of maternal death in India, numerous efforts are under way to promote access to skilled attendance at birth and emergency obstetric care. Current initiatives also seek to increase access to active management of the third stage of labor for postpartum hemorrhage prevention, particularly through administration of an uterotonic after delivery. However, prior research suggests widespread inappropriate use of uterotonics at facilities and in communities–for example, without adequate monitoring or referral support for complications. This qualitative study aimed to document health providers’ and community members’ current knowledge, attitudes, and practices regarding uterotonic use during labor and delivery in India’s Karnataka state. Methods 140 in-depth interviews were conducted from June to August 2011 in Bagalkot and Hassan districts with physicians, nurses, recently delivered women, mothers-in-law, traditional birth attendants (dais), unlicensed village doctors, and chemists (pharmacists). Results Many respondents reported use of uterotonics, particularly oxytocin, for labor augmentation in both facility-based and home-based deliveries. The study also identified contextual factors that promote inappropriate uterotonic use, including high value placed on pain during labor; perceived pressure to provide or receive uterotonics early in labor and delivery, perhaps leading to administration of uterotonics despite awareness of risks; and lack of consistent and correct knowledge regarding safe storage, dosing, and administration of oxytocin. Conclusions These findings have significant implications for public health programs in a context of widespread and potentially increasing availability of uterotonics. Among other responses, efforts are needed to improve communication between community members and providers regarding uterotonic use during labor and delivery and to target training and other interventions to address identified gaps in knowledge and ensure that providers and pharmacists have up-to-date information regarding proper usage of uterotonic drugs. PMID:23638148

Breaking the News or Fueling the Epidemic? Temporal Association between News Media Report Volume and Opioid-Related Mortality

PubMed Central

Dasgupta, Nabarun; Mandl, Kenneth D.; Brownstein, John S.

2009-01-01

Background Historical studies of news media have suggested an association between reporting and increased drug abuse. Period effects for substance use have been documented for different classes of legal and illicit substances, with the suspicion that media publicity may have played major roles in their emergence. Previous analyses have drawn primarily from qualitative evidence; the temporal relationship between media reporting volume and adverse health consequences has not been quantified nationally. We set out to explore whether we could find a quantitative relationship between media reports about prescription opioid abuse and overdose mortality associated with these drugs. We assessed whether increases in news media reports occurred before or after increases in overdose deaths. Methodology/Principal Findings Our ecological study compared a monthly time series of unintentional poisoning deaths involving short-acting prescription opioid substances, from 1999 to 2005 using multiple cause-of-death data published by the National Center for Health Statistics, to monthly counts of English-language news articles mentioning generic and branded names of prescription opioids obtained from Google News Archives from 1999 to 2005. We estimated the association between media volume and mortality rates by time-lagged regression analyses. There were 24,272 articles and 30,916 deaths involving prescription opioids during the seven-year study period. Nationally, the number of articles mentioning prescription opioids increased dramatically starting in early 2001, following prominent coverage about the nonmedical use of OxyContin. We found a significant association between news reports and deaths, with media reporting preceding fatal opioid poisonings by two to six months and explaining 88% (p<0.0001, df 78) of the variation in mortality. Conclusions/Significance While availability, structural, and individual predispositions are key factors influencing substance use, news reporting may enhance the popularity of psychoactive substances. Albeit ecological in nature, our finding suggests the need for further evaluation of the influence of news media on health. Reporting on prescription opioids conforms to historical patterns of news reporting on other psychoactive substances. PMID:19924221

Spiritual care and kidney disease in NZ: a qualitative study with New Zealand renal specialists.

PubMed

Egan, Richard; Macleod, Rod; Tiatia, Ramona; Wood, Sarah; Mountier, Jane; Walker, Rob

2014-11-01

People with chronic kidney disease have a shortened life expectancy and carry a high symptom burden. Research suggests that attending to renal patients' spiritual needs may contribute to an improvement in their quality of life. The aim of this qualitative study was to investigate the provision of spiritual care in New Zealand renal units from the perspective of specialists. The study followed a generic qualitative approach and included semi-structured interviews with specialists recruited from New Zealand's ten renal centres. Five specialist doctors and nine specialist nurses were recruited for interviews. Understandings of spirituality were broad, with most participants having an inclusive understanding. Patients' spiritual needs were generally acknowledged and respected though formal spiritual assessments were not done. Consideration of death was discussed as an often-unexamined need. The dominant position was that the specialists did not provide explicit spiritual care of patients but there was some ad hoc provision offered through pre-dialysis educators, family meetings, Māori liaison staff members and the efforts of individuals. Chaplains were well used in some services. Participants had received no pre and little in-service training or education in spiritual care. Suggestions for improvements included in-service training, better utilization of chaplaincy services and training in advance care planning. Most participants indicated they would attempt to provide some form of spiritual care, either directly or by referring the patient to appropriate services. However, participants generally demonstrated a lack of confidence in addressing a patient's spiritual needs. © 2014 Asian Pacific Society of Nephrology.

Identifying fallacious arguments in a qualitative study of antipsychotic prescribing in dementia.

PubMed

Donyai, Parastou

2017-10-01

Dementia can result in cognitive, noncognitive and behavioural symptoms which are difficult to manage. Formal guidelines for the care and management of dementia in the UK state that antipsychotics should only be prescribed where fully justified. This is because inappropriate use, particularly problematic in care-home settings, can produce severe side effects including death. The aim of this study was to explore the use of fallacious arguments in professionals' deliberations about antipsychotic prescribing in dementia in care-home settings. Fallacious arguments have the potential to become unremarkable discourses that construct and validate practices which are counter to guidelines. This qualitative study involved interviews with 28 care-home managers and health professionals involved in caring for patients with dementia. Potentially fallacious arguments were identified using qualitative content analysis and a coding framework constructed from existing explanatory models of fallacious reasoning. Fallacious arguments were identified in a range of explanations and reasons that participants gave for in answer to questions about initiating, reducing doses of and stopping antipsychotics in dementia. The dominant fallacy was false dichotomy. Appeal to popularity, tradition, consequence, emotion, or fear, and the slippery slope argument was also identified. Fallacious arguments were often formulated to present convincing cases whereby prescribing antipsychotics or maintaining existing doses (versus not starting medication or reducing the dose, for example) appeared as the only acceptable decision but this is not always the case. The findings could help health professionals to recognise and mitigate the effect of logic-based errors in decisions about the prescribing of antipsychotics in dementia. © 2016 Royal Pharmaceutical Society.

Dysphonia, Perceived Control, and Psychosocial Distress: A Qualitative Study.

PubMed

Misono, Stephanie; Haut, Caroline; Meredith, Liza; Frazier, Patricia A; Stockness, Ali; Michael, Deirdre D; Butcher, Lisa; Harwood, Eileen M

2018-05-11

The purpose of this qualitative study was to examine relationships between psychological factors, particularly perceived control, and voice symptoms in adults seeking treatment for a voice problem. Semistructured interviews of adult patients with a clinical diagnosis of muscle tension dysphonia were conducted and transcribed. Follow-up interviews were conducted as needed for further information or clarification. A multidisciplinary team analyzed interview content using inductive techniques. Common themes and subthemes were identified. A conceptual model was developed describing the association between voice symptoms, psychological factors, precipitants of ongoing voice symptoms, and perceived control. Thematic saturation was reached after 23 interviews. No participants reported a direct psychological cause for their voice problem, although half described significant life events preceding voice problem onset (eg, miscarriage and other health events, interpersonal conflicts, and family members' illnesses, injuries, and deaths). Participants described psychological influences on voice symptoms that led to rapid exacerbation of their voice symptoms. Participants described the helpfulness of speech therapy and sometimes also challenges of applying techniques in daily life. They also discussed personal coping strategies that included behavioral (eg, avoiding triggers and seeking social support) and psychological (eg, mind-body awareness and emotion regulation) components. Voice-related perceived control was associated with adaptive emotional and behavioral responses, which appeared to facilitate symptom improvement. In this qualitative pilot study, participant narratives suggested that psychological factors and emotions influence voice symptoms, facilitating development of a preliminary conceptual model of how adaptive and maladaptive responses develop and how they influence vocal function. Copyright © 2018 The Voice Foundation. Published by Elsevier Inc. All rights reserved.

Bereaved mothers' and fathers' perceptions of a legacy intervention for parents of infants in the NICU.

PubMed

Akard, T F; Duffy, M; Hord, A; Randall, A; Sanders, A; Adelstein, K; Anani, U E; Gilmer, M J

2018-01-01

Legacy-making, actions or behaviors aimed at being remembered, may be one strategy to enhance coping and improve grief outcomes for bereaved parents and siblings. While legacy interventions have been developed and tested in pediatric and adult populations, legacy activities specific to bereaved parents in the neonatal intensive care unit remain unexplored. This study explored bereaved parents' perceptions of a digital storytelling legacy-making intervention for parents after the death of an infant. Six bereaved mothers and fathers participated in a focus group interview three to 12 months after the death of an infant in the NICU. A semi-structured interview guide with open-ended questions was used to obtain parent self-reports. Qualitative content analysis identified emerging themes. Four major themes emerged regarding participants' perceptions of a legacy intervention: (a) parents' willingness to participate in a legacy intervention, (b) parents' suggestions for a feasible intervention, (c) parents' suggestions for an acceptable intervention, and (d) parents' perceived benefits of legacy-making. Participants reported that a legacy-making intervention via digital storytelling would be feasible, acceptable, and beneficial for NICU parents. Study results support the need and desire for legacy-making services to be developed and offered in the NICU.

Death in the clinic: women's perceptions and experiences of discarding supernumerary IVF embryos.

PubMed

de Lacey, Sheryl

2017-03-01

Perspectives on the status of human embryos and whether they should be discarded differ globally. Some countries protect embryos in law while in other countries embryos 'die' or 'succumb' in assisted reproductive technology clinics on a daily basis. This study analyses interview data drawn from a larger qualitative study conducted in South Australia from 2004-2007. 21 women and 12 of 21 partners were interviewed about the decision they made to discard their embryos. The analysis reported here sought to examine the ways in which women constructed and experienced the decision to discard embryos. The article highlights the ways in which embryo discard is a contested discursive space. Embryo death is sequestered through their confinement in the laboratory and their invisibility to the naked eye. The clinic treated embryo discard as disposal of biological waste and failed to acknowledge the meaning of the event. By contrast women experienced emotional bereavement described as similar to early pregnancy loss, and described experiences of attachment and grief. For sensitive and compassionate care these differences in perceptions of embryo discard need to be addressed. © 2016 Foundation for the Sociology of Health & Illness.

Healthy Ageing in People with Intellectual Disabilities from Managers' Perspective: A Qualitative Study.

PubMed

Johansson, Maria; Björne, Petra; Runesson, Ingrid; Ahlström, Gerd

2017-08-18

An increasing number of people with intellectual disability (ID) are reaching older ages today although they experience more health problems than the older population without ID. Leaders in intellectual disability services can greatly influence the conditions for a healthy ageing, and the aim of the present study was to explore healthy ageing in this group from the perspective of the leaders. Interviews with 20 leaders were subjected to qualitative content analysis. The findings gave rise to the overall theme ageing in dependence, which emerged from the following six categories: Supporting self-determination; Inaccessible activities after retirement; Signs of decline; Increased and specific needs for support and care; A non-question of gender; Aspects concerning the end of life and death. A prerequisite for healthy ageing in the case of people with ID is, according to the leaders, that they can live the life according to their preferences and make independent choices whilst at the same time receiving adequate support. With the shrinking of their social network after retirement, they become increasingly dependent on staff and leaders in the group home, who need to know what healthy ageing implies.

Multi-stakeholder perspectives on access, availability and utilization of emergency obstetric care services in Lagos, Nigeria: A mixed-methods study

PubMed Central

Wright, Kikelomo; Sonoiki, Olatunji; Ilozumba, Onaedo; Ajayi, Babatunde; Okikiolu, Olawunmi; Akinola, Oluwarotimi

2017-01-01

Globally, Nigeria is the second most unsafe country to be pregnant, with Lagos, its economic nerve center having disproportionately higher maternal deaths than the national average. Emergency obstetric care (EmOC) is effective in reducing pregnancyrelated morbidities and mortalities. This mixed-methods study quantitatively assessed women’s satisfaction with EmOC received and qualitatively engaged multiple key stakeholders to better understand issues around EmOC access, availability and utilization in Lagos. Qualitative interviews revealed that regarding access, while government opined that EmOC facilities have been strategically built across Lagos, women flagged issues with difficulty in access, compounded by perceived high EmOC cost. For availability, though health workers were judged competent, they appeared insufficient, overworked and felt poorly remunerated. Infrastructure was considered inadequate and paucity of blood and blood products remained commonplace. Although pregnant women positively rated the clinical aspects of care, as confirmed by the survey, satisfaction gaps remained in the areas of service delivery, care organization and responsiveness. These areas of discordance offer insight to opportunities for improvements, which would ensure that every woman can access and use quality EmOC that is sufficiently available. PMID:29456825

[Healthcare professionals' perceptions of Islamic beliefs and traditions as barriers to organ donation and transplantation in Algeria].

PubMed

Laidouni, Nouhad; Briones-Vozmediano, Érica; Garrido Clemente, Pilar; Gil González, Diana

The aim of this study is to explore healthcare professionals' perception of the influence of Islamic beliefs and traditions concerning organ donation and transplants in Algeria. Exploratory qualitative study using individual semi-structured interviews of 17 healthcare professionals (9 men, 8 women) of different specialties in a University hospital in Algiers (Algeria). Qualitative content analysis of transcripts was performed using the computer software ATLAS.ti 5. Healthcare professionals believe that religious beliefs do not affect living donation but say they have a negative impact on donation of cadaveric organs due to the existence of myths derived from the Islamic religion and lack of knowledge of the Algerian population about the positioning of religious leaders in relation to organ donation and transplantation. There is confusion among the Algerian population on the position of Islam around organ donation and transplantation, mainly to the detriment of the rate of cadaveric donation. Collaboration between the health sector and religious leaders to raise public awareness could improve the willingness of the population to donate organs after death. Copyright © 2016 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

Elders' Experiences During Return Visits to the Emergency Department: A Phenomenographic Study in Taiwan.

PubMed

Han, Chin-Yen; Lin, Chun-Chih; Goopy, Suzanne; Hsiao, Ya-Chu; Barnard, Alan

Elders often experience multiple chronic diseases associated with frequent early return visits to emergency departments (EDs). There is limited knowledge of the experiences and concerns of elders during ED return visits. The purpose of the research was to explore the experiences of elders during ED return visits, with a view toward identifying factors that contribute to return visits. The qualitative approach of phenomenography was used. Data were collected at one ED in a 3,000-bed medical center in Taiwan. Inclusion criteria were aged 65 or above and return visits to the ED within 72 hours of discharge from an index ED visit. The seven steps of qualitative data analysis for a phenomenographic study were employed to develop understanding of participants' experiences. Thirty return-visit elders were interviewed in 2014. Four categories of description were established from the participants' accounts. These were "being tricked by ED staff," "doctor shopping," "a sign of impending death," and "feeling fatalistic." The outcome space of elders with early return visits to ED was characterized as "seeking the answer." Index ED visits are linked to return visits for Taiwanese elders through physiological, psychological, and social factors.

Healthy Ageing in People with Intellectual Disabilities from Managers’ Perspective: A Qualitative Study

PubMed Central

Björne, Petra; Runesson, Ingrid

2017-01-01

An increasing number of people with intellectual disability (ID) are reaching older ages today although they experience more health problems than the older population without ID. Leaders in intellectual disability services can greatly influence the conditions for a healthy ageing, and the aim of the present study was to explore healthy ageing in this group from the perspective of the leaders. Interviews with 20 leaders were subjected to qualitative content analysis. The findings gave rise to the overall theme ageing in dependence, which emerged from the following six categories: Supporting self-determination; Inaccessible activities after retirement; Signs of decline; Increased and specific needs for support and care; A non-question of gender; Aspects concerning the end of life and death. A prerequisite for healthy ageing in the case of people with ID is, according to the leaders, that they can live the life according to their preferences and make independent choices whilst at the same time receiving adequate support. With the shrinking of their social network after retirement, they become increasingly dependent on staff and leaders in the group home, who need to know what healthy ageing implies. PMID:28820435

[SIM and SINASC: social representation of nurses and professional in administrative sectors who work in hospitals in the city of São Paulo].

PubMed

Schoeps, Daniela; Almeida, Marcia Furquim de; Raspantini, Priscila Ribeiro; Novaes, Hillegonda Maria Dutilh; Silva, Zilda Pereira da; Lefevre, Fernando

2013-05-01

Few studies have analyzed the SINASC (Live Birth Information System) and MIS (Mortality Information System) applying qualitative methodology seeking to understand data production processes and contexts. This article aims to study the social representation of health professionals about Live Birth Certificates (LBC) and perinatal Death Certificates (DC). A total of 24 interviews were conducted with nurses and other professionals of 16 Unified Health System (SUS) and non-SUS hospitals of the city of São Paulo in 2009. Qualitative methodology was adopted along with the Collective Subject Discourse technique. Professionals acknowledged that they are an integral part of the information production process of SINASC and their reports indicate that they incorporate it in their work routine. They also perceive that training activities are a tool to understand the information produced by them and are aware of the utility of LBC information. Although physicians are legally responsible for the DC, other professionals frequently provide some of the information to complete it. The professionals see themselves as participants of the SINASC. Despite providing information to complete the DC, they do not see themselves as participants of the MIS operation.

A cross-sectional study on the relationship of job stress with natural killer cell activity and natural killer cell subsets among healthy nurses.

PubMed

Morikawa, Yuko; Kitaoka-Higashiguchi, Kazuyo; Tanimoto, Chie; Hayashi, Midori; Oketani, Reiko; Miura, Katsuyuki; Nishijo, Muneko; Nakagawa, Hideaki

2005-09-01

The present study investigated the effects of job stress on cellular immune function, such as NK cell activity and NK cell subsets. The participants were 61 female nurses aged 23-59, who worked in a public psychiatric hospital in Ishikawa, Japan. Each subject completed the Nursing Job Stressor Scale (NJSS) and their NK cell activity and lymphocyte surface antigens (CD16+56+) were evaluated as immune system parameters. The NJSS has seven subscales: conflict with other nursing staff, nursing role conflict, conflict with physicians or autonomy, conflict with death or dying, quantitative work load, qualitative work load and conflict with patients. Factors influencing NK cell activity, and the proportion and cell counts of CD16+56+ lymphocytes were evaluated. Increase in quantitative work load significantly decreased NK cell activity. Conversely, no linear relationship was observed between qualitative work load and immunological variables, with the highest percentage of CD16+56+ lymphocytes observed among participants in the medium work load group. The other five NJSS subscales did not relate to immune parameters. In conclusion, the results suggest that perceived job strains, particularly quantitative work load, decreased NK cell function.

Palliative care team visits. Qualitative study through participant observation

PubMed Central

Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz

2016-01-01

Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources. PMID:27226663

Finding common ground to achieve a "good death": family physicians working with substitute decision-makers of dying patients. A qualitative grounded theory study.

PubMed

Tan, Amy; Manca, Donna

2013-01-22

Substitute decision-makers are integral to the care of dying patients and make many healthcare decisions for patients. Unfortunately, conflict between physicians and surrogate decision-makers is not uncommon in end-of-life care and this could contribute to a "bad death" experience for the patient and family. We aim to describe Canadian family physicians' experiences of conflict with substitute decision-makers of dying patients to identify factors that may facilitate or hinder the end-of-life decision-making process. This insight will help determine how to best manage these complex situations, ultimately improving the overall care of dying patients. Grounded Theory methodology was used with semi-structured interviews of family physicians in Edmonton, Canada, who experienced conflict with substitute decision-makers of dying patients. Purposeful sampling included maximum variation and theoretical sampling strategies. Interviews were audio-taped, and transcribed verbatim. Transcripts, field notes and memos were coded using the constant-comparative method to identify key concepts until saturation was achieved and a theoretical framework emerged. Eleven family physicians with a range of 3 to 40 years in clinical practice participated.The family physicians expressed a desire to achieve a "good death" and described their role in positively influencing the experience of death.Finding Common Ground to Achieve a "Good Death" for the Patient emerged as an important process which includes 1) Building Mutual Trust and Rapport through identifying key players and delivering manageable amounts of information, 2) Understanding One Another through active listening and ultimately, and 3) Making Informed, Shared Decisions. Facilitators and barriers to achieving Common Ground were identified. Barriers were linked to conflict. The inability to resolve an overt conflict may lead to an impasse at any point. A process for Resolving an Impasse is described. A novel framework for developing Common Ground to manage conflicts during end-of-life decision-making discussions may assist in achieving a "good death". These results could aid in educating physicians, learners, and the public on how to achieve productive collaborative relationships during end-of-life decision-making for dying patients, and ultimately improve their deaths.

Tracing shadows: How gendered power relations shape the impacts of maternal death on living children in sub Saharan Africa.

PubMed

Yamin, Alicia Ely; Bazile, Junior; Knight, Lucia; Molla, Mitike; Maistrellis, Emily; Leaning, Jennifer

2015-06-01

Driven by the need to better understand the full and intergenerational toll of maternal mortality (MM), a mixed-methods study was conducted in four countries in sub-Saharan Africa to investigate the impacts of maternal death on families and children. The present analysis identifies gender as a fundamental driver not only of maternal, but also child health, through manifestations of gender inequity in household decision making, labor and caregiving, and social norms dictating the status of women. Focus group discussions were conducted with community members, and in depth qualitative interviews with key-informants and stakeholders, in Tanzania, Ethiopia, Malawi, and South Africa between April 2012 and October 2013. Findings highlight that socially constructed gender roles, which define mothers as caregivers and fathers as wage earners, and which limit women's agency regarding childcare decisions, among other things, create considerable gaps when it comes to meeting child nutrition, education, and health care needs following a maternal death. Additionally, our findings show that maternal deaths have differential effects on boy and girl children, and exacerbate specific risks for girl children, including early marriage, early pregnancy, and school drop-out. To combat both MM, and to mitigate impacts on children, investment in health services interventions should be complemented by broader interventions regarding social protection, as well as aimed at shifting social norms and opportunity structures regarding gendered divisions of labor and power at household, community, and society levels. Copyright © 2015 The Authors. Published by Elsevier Ltd.. All rights reserved.

Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care.

PubMed

Rapoport, Adam; Shaheed, Jenny; Newman, Christine; Rugg, Maria; Steele, Rose

2013-05-01

Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under specific circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. All parents were satisfied with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option.

Acceptance of dying: a discourse analysis of palliative care literature.

PubMed

Zimmermann, Camilla

2012-07-01

The subject of death denial in the West has been examined extensively in the sociological literature. However, there has not been a similar examination of its "opposite", the acceptance of death. In this study, I use the qualitative method of discourse analysis to examine the use of the term "acceptance" of dying in the palliative care literature from 1970 to 2001. A Medline search was performed by combining the text words "accept or acceptance" with the subject headings "terminal care or palliative care or hospice care", and restricting the search to English language articles in clinical journals discussing acceptance of death in adults. The 40 articles were coded and analysed using a critical discourse analysis method. This paper focuses on the theme of acceptance as integral to palliative care, which had subthemes of acceptance as a goal of care, personal acceptance of healthcare workers, and acceptance as a facilitator of care. For patients and families, death acceptance is a goal that they can be helped to attain; for palliative care staff, acceptance of dying is a personal quality that is a precondition for effective practice. Acceptance not only facilitates the dying process for the patient and family, but also renders care easier. The analysis investigates the intertextuality of these themes with each other and with previous texts. From a Foucauldian perspective, I suggest that the discourse on acceptance of dying represents a productive power, which disciplines patients through apparent psychological and spiritual gratification, and encourages participation in a certain way to die. Copyright © 2012 Elsevier Ltd. All rights reserved.

Two perspectives on organ donation: experiences of potential donor families and intensive care physicians of the same event.

PubMed

Sanner, Margareta A

2007-12-01

The aim was to explore how relatives and physicians understood cases where organ donation had been requested and what factors were salient for the decision on donation. Physicians of 25 deceased patients and 20 relatives were interviewed. The material was analyzed using qualitative methods. Eleven patients had declared their wishes on donation before death; in 14 cases the relatives had to decide. Half of these relatives accepted donation and half refused. The donation request was of secondary importance to the families; they were totally occupied by the death and initially tried to avoid the request by regarding "no" as a nonresponse. They needed support to relieve their immediate reactions of uneasiness, start rational thought processes, and reach well-grounded answers. The basis for requesting donation was good; relatives, with regard to circumstances, had been well prepared for the death by continuous information from the physicians and had confidence in staff, accepted that the question was raised, and understood the death criteria. However, about half the physicians experienced conflicts regarding prerequisites of procuring organs and dealing with relatives. Three different approaches were displayed: prodonation, neutral, and ambivalent. Only physicians with a prodonation approach received acceptance for donation.

Getting to the Heart of Being the Match: A Qualitative Analysis of Bone Marrow Donor Recruitment and Retention among College Students

ERIC Educational Resources Information Center

Kaster, Elizabeth C.; Rogers, Charles R.; Jeon, Kwon Chan; Rosen, Brittany

2014-01-01

Introduction: For those with certain blood or bone cancers, bone marrow donation can mean the difference between life and death. The National Marrow Donor Program® (NMDP) operates the largest bone marrow registry of potential donors; however, at times when potential matches are identified, many donors opt not to donate. The purpose of this study…

Connecting Police Violence With Reproductive Health.

PubMed

Premkumar, Ashish; Nseyo, Onouwem; Jackson, Andrea V

2017-01-01

Since the police-involved deaths of Michael Brown and Freddie Gray, activists have argued for connecting police violence with reproductive justice. We argue that systematic violence, including police violence, should be evaluated in relation to reproductive health outcomes of individual patients and communities. Beyond emphasizing the relationship between violence and health outcomes, both qualitative and epidemiologic data can be used by activists and caregivers to effectively care for individuals from socially marginalized communities.

A Rasch scaling validation of a 'core' near-death experience.

PubMed

Lange, Rense; Greyson, Bruce; Houran, James

2004-05-01

For those with true near-death experiences (NDEs), Greyson's (1983, 1990) NDE Scale satisfactorily fits the Rasch rating scale model, thus yielding a unidimensional measure with interval-level scaling properties. With increasing intensity, NDEs reflect peace, joy and harmony, followed by insight and mystical or religious experiences, while the most intense NDEs involve an awareness of things occurring in a different place or time. The semantics of this variable are invariant across True-NDErs' gender, current age, age at time of NDE, and latency and intensity of the NDE, thus identifying NDEs as 'core' experiences whose meaning is unaffected by external variables, regardless of variations in NDEs' intensity. Significant qualitative and quantitative differences were observed between True-NDErs and other respondent groups, mostly revolving around the differential emphasis on paranormal/mystical/religious experiences vs. standard reactions to threat. The findings further suggest that False-Positive respondents reinterpret other profound psychological states as NDEs. Accordingly, the Rasch validation of the typology proposed by Greyson (1983) also provides new insights into previous research, including the possibility of embellishment over time (as indicated by the finding of positive, as well as negative, latency effects) and the potential roles of religious affiliation and religiosity (as indicated by the qualitative differences surrounding paranormal/mystical/religious issues).

Stillbirth: the mother's experience and implications for improving care.

PubMed

Cacciatore, Joanne; Bushfield, Suzanne

2007-01-01

More children die as a result of stillbirth than all other causes of infant deaths combined (Ananth, Shiliang, Kinzler, and Kramer, 2005; Goldenberg, Kirby, and Culhane, 2004; Froen, 2005; National Institute of Health, 2004); yet, mothers experiencing stillbirth are often left without support afterwards (Kubler-Ross, 2004; Fahey-McCarthy, 2003; Fletcher 2002; Saddler, 1987; DeFrain, 1986; Kirkley-Best & Kellner, 1982). Despite social work's growing involvement in care at the end of life, parents of stillborn children have not experienced consistent, relevant, and competent professional care in coping with the tragedy of death. Forty-seven women between the ages of 19 and 51 were recruited through nonprofit agencies that provide bereavement care to grieving families. Results of this qualitative study suggest that stillbirth is emotionally complex with long-lasting symptoms of grief and significant struggles to find meaning. The findings also support the need for perceived psychosocial and spiritual support from professional caregivers, family, and friends. The women's own experiences argue for comprehensive approaches to support the grief and loss of stillbirth, and for the importance of social work involvement in both immediate and longer term interventions.

Bereaved Parents’ and Siblings’ Reports of Legacies Created by Children With Cancer

PubMed Central

Foster, Terrah L.; Gilmer, Mary Jo; Davies, Betty; Barrera, Maru; Fairclough, Diane; Vannatta, Kathryn; Gerhardt, Cynthia A.

2010-01-01

This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8–18 years). Individual interviews were completed at home approximately 10.68 months (SD = 3.48) after the child’s death. Content analysis of interviews indicated that many children living with cancer did specific things to be remembered, such as making crafts for others, willing away belongings, writing letters to loved ones, and giving special gifts. Some children, particularly those who were very ill or died unexpectedly, did not intentionally do or say anything to be remembered. Legacies included bereaved individuals remembering children’s qualities, concern for family, and beliefs about afterlife. Having advanced cancer appeared to motivate children to influence others’ lives and prepare for their own deaths. Children’s advice about how to live life inspired bereaved family members. Findings contribute to the current knowledge of legacy-making in children and offer implications for practice and future research. PMID:20032298

Homicidal ideation in family carers of people with dementia.

PubMed

O'Dwyer, Siobhan T; Moyle, Wendy; Taylor, Tara; Creese, Jennifer; Zimmer-Gembeck, Melanie J

2016-11-01

Family carers of people with dementia have higher than average rates of suicidal ideation, but there has been no research on homicidal ideation in this population. The aim of this study was to explore thoughts of homicide in family carers of people with dementia. A descriptive qualitative approach was taken. Twenty-one Australian carers (7 men, 14 women) participated in individual, in-depth interviews and the transcripts were analysed thematically. Seven themes were identified in the data - active thoughts of homicide; understanding homicidal thoughts in others; passive thoughts of death; euthanasia; homicidal thoughts in other caregiving situations; abuse; and disclosing thoughts of harm. Two of the 21 participants had actively contemplated the homicide of their care recipient, four expressed a passive desire for the care recipient's death, and four reported physically or verbally abusing the care recipient. Only one carer had previously disclosed these experiences. Homicidal ideation is a real and significant phenomenon among family carers of people with dementia. Service providers and health professionals are encouraged to identify and support carers contemplating homicide, but to do so in a way that recognises the broader social context of carer burden.

A qualitative study: potential benefits and challenges of traditional healers in providing aspects of palliative care in rural South Africa.

PubMed

Campbell, L M; Amin, N N

2014-01-01

This article draws on selected palliative care providers' views and experiences to reflect on the potential benefits and possible challenges of involving traditional healers in palliative care in rural areas of South Africa. There is increasing consensus that palliative care should be offered by a range of professional and non-professional healthcare givers. Including non-professionals such as traditional healers in a palliative care team may strengthen care provisioning as they have intimate knowledge of patients' local culture and spiritual beliefs. Employing the qualitative method of photo-elicitation, one-on-one discussions about the photographs taken by participants were conducted. The participants - 4 palliative care nurses and 17 home-based care workers - were purposively selected to provide in-depth information about their experiences as palliative caregivers in rural homes. Healthcare workers' experiences revealed that the patients they cared for valued traditional rituals connected to illness, dying, death and bereavement. Participants suggested that traditional healers should be included in palliative care training programs as they could offer appropriate psychological, cultural and spiritual care. A challenge identified by participants was the potential of traditional healers to foster a false sense of longevity in patients facing death. The importance of recognising the value of traditional practices in palliative care should not be underrated in rural South Africa. Traditional healers could enhance palliative care services as they have deep, insider knowledge of patients' spiritual needs and awareness of cultural practices relating to illness, death, dying and bereavement. Incorporating traditional healers into healthcare services where there are differences in the worldviews of healthcare providers and patients, and a sensitivity to mediate cultural differences between caregivers and patients, could have the benefit of providing appropriate care in rural spaces. Considering the influences of cultural and spiritual beliefs on the wellbeing of patients living in rural areas, the inclusion of traditional healers in a palliative care team is a sensible move. It is, nevertheless, important to note that unanticipated challenges may arise with respect to power differentials within the palliative care team and to beliefs that contradict medical prognosis.

Diet and physical activity for children's health: a qualitative study of Nepalese mothers’ perceptions

PubMed Central

Oli, Natalia; Vaidya, Abhinav; Subedi, Madhusudan; Eiben, Gabriele; Krettek, Alexandra

2015-01-01

Objectives Non-communicable diseases account for 50% of all deaths in Nepal and 25% result from cardiovascular diseases. Previous studies in Nepal indicate a high burden of behavioural cardiovascular risk factors, suggesting a low level of knowledge, attitude and practice/behaviour regarding cardiovascular health. The behavioural foundation for a healthy lifestyle begins in early childhood, when mothers play a key role in their children's lives. This qualitative study, conducted in a Nepalese peri-urban community, aimed to explore mothers’ perception of their children's diet and physical activity. Design We notated, tape-recorded and transcribed all data collected from six focus group discussions, and used qualitative content analysis for evaluation and interpretation. Setting The study was conducted in the Jhaukhel-Duwakot Health Demographic Surveillance Site in the Bhaktapur district of Nepal. Participants Local health workers helped recruit 61 women with children aged 5–10 years. We distributed participants among six different groups according to educational status. Results Although participants understood the importance of healthy food, they misunderstood its composition, perceiving it as unappetising and appropriate only for sick people. Furthermore, participants did not prioritise their children's physical activities. Moreover, mothers believed they had limited control over their children's dietary habits and physical activity. Finally, they opined that health educational programmes would help mothers and recommended various intervention strategies to increase knowledge regarding a healthy lifestyle. Conclusions Our data reveal that mothers of young children in a peri-urban community of Nepal lack adequate and accurate understanding about the impact of a healthy diet and physical activity. Therefore, to prevent future cardiovascular disease and other non-communicable diseases among children, Nepal needs health education programmes to improve mothers’ cardiovascular health knowledge, attitude and behaviour. PMID:26351183

"A life of living death": the experiences of people living with chronic low back pain in rural Nigeria.

PubMed

Igwesi-Chidobe, Chinonso N; Kitchen, Sheila; Sorinola, Isaac O; Godfrey, Emma L

2017-04-01

This study explored the experiences of people living with non-specific chronic low back pain (CLBP) in a rural Nigerian community. Qualitative in-depth semi-structured face-to-face interviews were conducted with purposively sampled participants until data saturation. Questions explored back pain beliefs, coping/management strategies and daily activities. Thematic analysis of transcripts was performed using the Framework approach. Themes showed that back pain beliefs were related to manual labour/deprivation, infection/degeneration, spiritual/cultural beliefs and rural-urban divide. These beliefs impacted on gender roles resulting in adaptive or maladaptive coping. Adaptive coping was facilitated by positive beliefs, such as not regarding CLBP as an illness, whereas viewing CLBP as illness stimulated maladaptive coping strategies. Spirituality was associated with both adaptive and maladaptive coping. Maladaptive coping strategies led to dissatisfaction with health care in this community. CLBP-related disability in rural Nigeria is strongly influenced by beliefs that facilitate coping strategies that either enhance or inhibit recovery. Interventions should therefore target maladaptive beliefs while emphasizing behavioural modification. Implications for Rehabilitation Non-specific chronic low back pain (CLBP) is highly prevalent and responsible for much pain and disability in rural Nigeria. No qualitative study has investigated the experiences of people living with CLBP in rural Nigeria or any other rural African context. Qualitative study of peoples' experiences of living with CLBP in rural Nigeria has the potential of exposing complex socio-cultural and psychological factors associated with CLBP which has potential implications for designing effective interventions. The results of this study may inform the development of complex interventions for reducing the disability associated with CLBP in rural Nigeria and other rural African contexts.

Impact of quarantine on the 2003 SARS outbreak: a retrospective modeling study.

PubMed

Hsieh, Ying-Hen; King, Chwan-Chuan; Chen, Cathy W S; Ho, Mei-Shang; Hsu, Sze-Bi; Wu, Yi-Chun

2007-02-21

During the 2003 Severe Acute Respiratory Syndrome (SARS) outbreak, traditional intervention measures such as quarantine and border control were found to be useful in containing the outbreak. We used laboratory verified SARS case data and the detailed quarantine data in Taiwan, where over 150,000 people were quarantined during the 2003 outbreak, to formulate a mathematical model which incorporates Level A quarantine (of potentially exposed contacts of suspected SARS patients) and Level B quarantine (of travelers arriving at borders from SARS affected areas) implemented in Taiwan during the outbreak. We obtain the average case fatality ratio and the daily quarantine rate for the Taiwan outbreak. Model simulations is utilized to show that Level A quarantine prevented approximately 461 additional SARS cases and 62 additional deaths, while the effect of Level B quarantine was comparatively minor, yielding only around 5% reduction of cases and deaths. The combined impact of the two levels of quarantine had reduced the case number and deaths by almost a half. The results demonstrate how modeling can be useful in qualitative evaluation of the impact of traditional intervention measures for newly emerging infectious diseases outbreak when there is inadequate information on the characteristics and clinical features of the new disease-measures which could become particularly important with the looming threat of global flu pandemic possibly caused by a novel mutating flu strain, including that of avian variety.

Detection of leachables and cytotoxicity after exposure to methacrylate- and epoxy-based root canal sealers in vitro.

PubMed

Lodienė, Greta; Kopperud, Hilde M; Ørstavik, Dag; Bruzell, Ellen M

2013-10-01

Root canal sealing materials may have toxic potential in vitro depending on the cell line, cytotoxicity assay, material chemistry, and degree of polymer curing. The aims of the present study were to detect leaching components from epoxy- or methacrylate-based root canal sealers and to investigate the degree of cytotoxicity after exposure to extracts from these materials. Qualitative determination of substances released from the materials was performed by gas- and liquid chromatography/mass spectrometry. Submandibular salivary gland acinar cell death (apoptosis/necrosis) was determined using a fluorescence staining/microscopy technique. The major leachable monomer from the epoxy-based material was bisphenol-A diglycidyl ether (BADGE), whereas leachables from the methacrylate-based materials were mainly triethylene glycol dimethacrylate (TEGDMA), urethane dimethacrylate (UDMA), hydroxyethyl methacrylate (HEMA), and polyethyleneglycol dimethacrylate (PEGDMA). Exposure to diluted extracts of cured methacrylate-based materials caused a postexposure time-dependent increase in cell death. This effect was not demonstrated as a result of exposure to undiluted extract of cured epoxy-based material. Extracts of all fresh materials induced apoptosis significantly, but at lower dilutions of the epoxy- than the methacrylate-based materials. The degree of leaching, determined from the relative chromatogram peak heights of eluates from the methacrylate-based sealer materials, corresponded with the degree of cell death induced by extracts of these materials. © 2013 Eur J Oral Sci.

Ethical Challenges for an Understanding of Suffering: Voluntary Stopping of Eating and Drinking and the Wish to Hasten Death in Advanced Patients

PubMed Central

Rodríguez-Prat, Andrea; Monforte-Royo, Cristina; Balaguer, Albert

2018-01-01

Some persons with advanced disease but no significant cognitive impairments consciously decide to stop taking food and fluids orally, even though they remain physically able to do so. The question is to what extent voluntarily stopping eating and drinking (VSED) may be considered an expression of a wish to hasten death, in the sense that the latter has been defined recently. We analyze the data reported in some studies in relation to primary care patients who died as a result of VSED and examine their results in light of the qualitative findings of patients that expressed a wish to die. In our view, VSED can be understood as a response to physical/psychological/spiritual suffering, as an expression of a loss of self, a desire to live but not in this way, a way of ending suffering, and as a kind of control over one’s life. Thus, VSED is consistent with the wish to hasten death. Prior to interpreting this act as a deliberate expression of personal autonomy, it is important to explore all possible areas of suffering, including physical symptoms, psychological distress, existential suffering, and social aspects. Failure to do so will mean that we run the risk of abandoning a fellow human being to his or her suffering. PMID:29651244

Descriptions of euthanasia as social representations: comparing the views of Finnish physicians and religious professionals.

PubMed

Jylhänkangas, Leila; Smets, Tinne; Cohen, Joachim; Utriainen, Terhi; Deliens, Luc

2014-03-01

In many western societies health professionals play a powerful role in people's experiences of dying. Religious professionals, such as pastors, are also confronted with the issues surrounding death and dying in their work. It is therefore reasonable to assume that the ways in which death-related topics, such as euthanasia, are constructed in a given culture are affected by the views of these professionals. This qualitative study addresses the ways in which Finnish physicians and religious professionals perceive and describe euthanasia and conceptualises these descriptions and views as social representations. Almost all the physicians interviewed saw that euthanasia does not fit the role of a physician and anchored it to different kinds of risks such as the slippery slope. Most of the religious and world-view professionals also rejected euthanasia. In this group, euthanasia was rejected on the basis of a religious moral code that forbids killing. Only one of the religious professionals - the freethinker with an atheist world-view - accepted euthanasia and described it as a personal choice, as did the one physician interviewed who accepted it. The article shows how the social representations of euthanasia are used to protect professional identities and to justify their expert knowledge of death and dying. © 2013 The Authors. Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd.

"I Am Ready and Willing to Provide the Service … Though My Religion Frowns on Abortion"-Ghanaian Midwives' Mixed Attitudes to Abortion Services: A Qualitative Study.

PubMed

Oppong-Darko, Prince; Amponsa-Achiano, Kwame; Darj, Elisabeth

2017-12-04

Unsafe abortion is a major preventable public health problem and contributes to high mortality among women. Ghana has ratified international conventions to prevent unwanted pregnancies and provide safe abortion services, legally authorizing midwives to provide induced abortion services in certain circumstances. The aim of the study was to understand midwives' readiness to be involved in legal induced abortions, should the law become less restricted in Ghana. A qualitative study design, with a topic guide for individual in-depth interviews of selected midwives, was adopted. The interviews were tape-recorded and analyzed using content analysis. Participants emphasized their willingness to reduce maternal mortalities, their experiences of maternal deaths, and their passion for the health of pregnant women. Knowledge of Ghana's abortion law was generally low. Different views were expressed regarding readiness to engage in abortion services. Some expressed it as being sinful and against their religion to assist in abortion care, whilst others felt it was good to save the lives of women. The midwives made it clear that unsafe abortions are common, stigmatizing and contributing to maternal mortality, issues that must be addressed. They made various suggestions to reduce this preventable tragedy.

The lived experience with idiopathic pulmonary fibrosis: a qualitative study.

PubMed

Overgaard, Dorthe; Kaldan, Gudrun; Marsaa, Kristoffer; Nielsen, Thyge Lynghøj; Shaker, Saher Burhan; Egerod, Ingrid

2016-05-01

The disease course in idiopathic pulmonary fibrosis (IPF) is variable, but patients experience a progressive decline in lung function and increased symptom burden leading to death. Little is known about the patients' experience and their needs during the disease course or about the burden on family caregivers. Both patients and family caregivers face an altered life as the disease progresses. The aim of our study was to increase knowledge of life with IPF for patients and family caregivers.This study had a qualitative descriptive design using in-depth dyadic interviews with IPF patients (n=25) and family caregivers (n=24). We used the five-step analysis from the framework method and analysed the data on three levels: the patient, the family caregivers and couple level.The following six themes emerged as the main results: information and disclosure, reactional dyssynchrony, perpetual vigilance, emotional ambivalence, gradual and tacit role shift, and adapted coping strategies.Our findings suggest that IPF patients need information at the time of diagnosis, but some issues should be paced as the disease progresses. A palliation plan was demanded by patients and their caregivers. Further efforts are required to provide palliative care to IPF patients starting at the time of diagnosis. Copyright ©ERS 2016.

Exploring perceptions and preferences of patients, families, physicians, and nurses regarding cancer disclosure: a descriptive qualitative study.

PubMed

Abazari, Parvaneh; Taleghani, Fariba; Hematti, Simin; Ehsani, Maryam

2016-11-01

The aim of this study was to explore perceptions and preferences of cancer patients, their families, physicians, and nurses in disclosing cancer diagnosis. We selected 35 participants (15 patients, 6 family members, 9 physicians, and 5 nurses) by purposive sampling. We collected data by in-depth interviews and used qualitative content analysis for analysis. Data analysis resulted in three categories: (1) establishing a basis for breaking bad news; (2) adjusting to the tragedy of bad news; and (3) helping the patient cope with the shattering news. The first category comprised the following subcategories: provision of proper background; adhering to a patient-centered approach; and being unhurried. The second category comprised the following subcategories: cancer as a cultural taboo; death as a frightening vision of unattainable dreams and punishment; hope as an opening in the utter darkness of disease; and empathy as liniment for the injuries of disease. The third category comprised the following subcategories: the family as the most powerful healing source for the patient; the force of spirituality in achieving peace; and a multiprofessional, harmonious physician-centered team. The findings of this study can help healthcare teams break the bad news of cancer diagnosis in a more effective, satisfactory, and culture-based manner for patients and their families.

Existential challenges in young people living with a cancer diagnosis.

PubMed

Odh, Ida; Löfving, Martina; Klaeson, Kicki

2016-10-01

In Sweden, approximately 500 people between the ages of 15 and 39 are diagnosed with cancer each year. When someone is diagnosed with a life-threatening disease, existential issues are easily triggered. Young adults are in a developmental phase of life and are exposed to an extra amount of pressure. The Internet and social media are a daily part of the life of young adults and the use of blogs is common. The aim of this study was to elucidate the theoretical framework of Yalom and his four 'givens' expressed in blogs written by young adults living with various cancer diagnoses in Sweden. This study used a qualitative method in which written stories from six public blogs were analysed using qualitative content analysis. The findings offer valuable in-depth knowledge about the existential issues in this population. The results can be described as a journey with several existential challenges and with death as an impending threat. The bloggers' awareness of their mortality was described as creating a sense of loss and existential loneliness. This study shows that young adults are empowered by the writing of blogs and that blogs can play an important part in increasing wellbeing and a sense of coherence within this population. Copyright © 2016 Elsevier Ltd. All rights reserved.

Return to drug use and overdose after release from prison: a qualitative study of risk and protective factors.

PubMed

Binswanger, Ingrid A; Nowels, Carolyn; Corsi, Karen F; Glanz, Jason; Long, Jeremy; Booth, Robert E; Steiner, John F

2012-01-01

Former inmates are at high risk for death from drug overdose, especially in the immediate post-release period. The purpose of the study is to understand the drug use experiences, perceptions of overdose risk, and experiences with overdose among former prisoners. This qualitative study included former prison inmates (N=29) who were recruited within two months after their release. Interviewers conducted in-person, semi-structured interviews which explored participants' experiences and perceptions. Transcripts were analyzed utilizing a team-based method of inductive analysis. The following themes emerged: 1) Relapse to drugs and alcohol occurred in a context of poor social support, medical co-morbidity and inadequate economic resources; 2) former inmates experienced ubiquitous exposure to drugs in their living environments; 3) intentional overdose was considered "a way out" given situational stressors, and accidental overdose was perceived as related to decreased tolerance; and 4) protective factors included structured drug treatment programs, spirituality/religion, community-based resources (including self-help groups), and family. Former inmates return to environments that strongly trigger relapse to drug use and put them at risk for overdose. Interventions to prevent overdose after release from prison may benefit from including structured treatment with gradual transition to the community, enhanced protective factors, and reductions of environmental triggers to use drugs.

“I Am Ready and Willing to Provide the Service … Though My Religion Frowns on Abortion”—Ghanaian Midwives’ Mixed Attitudes to Abortion Services: A Qualitative Study

PubMed Central

Oppong-Darko, Prince; Amponsa-Achiano, Kwame

2017-01-01

Background: Unsafe abortion is a major preventable public health problem and contributes to high mortality among women. Ghana has ratified international conventions to prevent unwanted pregnancies and provide safe abortion services, legally authorizing midwives to provide induced abortion services in certain circumstances. Objective: The aim of the study was to understand midwives’ readiness to be involved in legal induced abortions, should the law become less restricted in Ghana. Methods: A qualitative study design, with a topic guide for individual in-depth interviews of selected midwives, was adopted. The interviews were tape-recorded and analyzed using content analysis. Results: Participants emphasized their willingness to reduce maternal mortalities, their experiences of maternal deaths, and their passion for the health of pregnant women. Knowledge of Ghana’s abortion law was generally low. Different views were expressed regarding readiness to engage in abortion services. Some expressed it as being sinful and against their religion to assist in abortion care, whilst others felt it was good to save the lives of women. Conclusion: The midwives made it clear that unsafe abortions are common, stigmatizing and contributing to maternal mortality, issues that must be addressed. They made various suggestions to reduce this preventable tragedy. PMID:29207521

Ethical issues for hospice volunteers.

PubMed

Berry, Patricia; Planalp, Sally

Health care professionals usually receive professional education in ethics, but the half million hospice volunteers in the United States may receive only brief training that is limited to confidentiality and the volunteer role. The purpose of this study was to explore ethical issues hospice volunteers confront in their work. Interviews with 39 hospice volunteers were conducted, audio recorded, transcribed, and analyzed using qualitative methods. Prominent themes were dilemmas about gifts, patient care and family concerns, issues related to volunteer roles and boundaries, and issues surrounding suicide and hastening death. Suggestions for training include discussions of ethics after initial training once volunteers had confronted ethical issues, with special emphasis on strategies for negotiating their uneasy role positioned between health care professional and friend.

Childhood experiences and complicated grief: a study of adult children of alcoholics.

PubMed

Brabant, S; Martof, M

1993-09-01

For the most part, grief research concentrates on type of loss (e.g., loss of spouse, parent, or child) and/or type of death (e.g., expected or sudden). In contrast, the present paper focuses on a category of persons generally assumed to have had troubled childhoods, adult children of alcoholics (ACOAs). Because of assumed problematic histories, the grief process of ACOAs should be expected to differ from the grief process of non-ACOAs. Using both quantitative and qualitative techniques, 27 ACOAs and 20 non-ACOAs, recruited by newspaper, radio, and word-of-mouth, are compared across characteristics generally associated with ACOAs and/or unresolved grief. Implications for counseling are presented.

Terrorism and resilience: adolescents' and teachers' responses to September 11, 2001.

PubMed

Noppe, Illene C; Noppe, Lloyd D; Bartell, Denise

2006-01-01

This study examined the impact of terrorism on adolescents, who may be resolving developmental issues regarding their vulnerability to death. Approximately 4 months after the September 11th attacks, a survey was given to 973 Upper Midwest adolescents and teachers. Quantitative analyses indicated that adolescents (especially girls) were frightened and upset but also used many coping strategies. Qualitative analyses suggested that adolescents were angry as well as tired of hearing about the events. Teachers discussed the attack's historical significance, student safety, and a desire to resume "normalcy." Adolescence resilience was seen by the making of a coherent narrative of September 11th and by focusing on their daily living.

A multiplexed method for kinetic measurements of apoptosis and proliferation using live-content imaging.

PubMed

Artymovich, Katherine; Appledorn, Daniel M

2015-01-01

In vitro cell proliferation and apoptosis assays are widely used to study cancer cell biology. Commonly used methodologies are however performed at a single, user-defined endpoint. We describe a kinetic multiplex assay incorporating the CellPlayer(TM) NucLight Red reagent to measure proliferation and the CellPlayer(TM) Caspase-3/7 reagent to measure apoptosis using the two-color, live-content imaging platform, IncuCyte(TM) ZOOM. High-definition phase-contrast images provide an additional qualitative validation of cell death based on morphological characteristics. The kinetic data generated using this strategy can be used to derive informed pharmacology measurements to screen potential cancer therapeutics.

[Retrospective study of the implementation of the qualitative PCR technique in biological samples for monitoring toxoplasmosis in pediatric patients receiving hematopoietic stem cell transplantation].

PubMed

Nigro, Mónica G; Figueroa, Carlos; Ledesma, Bibiana A

2014-01-01

Toxoplasmosis is an opportunistic infection caused by the parasite Toxoplasma gondii. The infection is severe and difficult to diagnose in patients receiving allogeneic hematopoietic stem cell transplantation (HSCT). Twelve patients receiving HSCT were monitored post-transplant, by qualitative PCR at the Children's Hospital S.A.M.I.C. "Prof. Dr. Juan P. Garrahan". The monitoring of these patients was defined by a history of positive serology for toxoplasmosis in the donor or recipient and because their hematologic condition did not allow the use of trimethoprim-sulfamethoxazole for prophylaxis. During the patients' monitoring, two of them with positive PCR results showed signs of illness by T. gondii and were treated with pyrimethamine-clindamycin. In two other patients, toxoplasmosis was the cause of death and an autopsy finding, showing negative PCR results. Four patients without clinical manifestations received treatment for toxoplasmosis because of positive PCR detection. In four patients there were no signs of toxoplasmosis disease and negative PCR results during follow-up. The qualitative PCR technique proved useful for the detection of toxoplasmosis reactivation in HSCT recipients, but has limitations in monitoring and making clinical decisions due to the persistence of positive PCR over time and manifestations of toxicity caused by the treatment. Copyright © 2014 Asociación Argentina de Microbiología. Publicado por Elsevier España. All rights reserved.

A qualitative study exploring women’s beliefs about physical activity after stillbirth

PubMed Central

2014-01-01

Background Research provides strong evidence for improvements in depressive symptoms as a result of physical activity participation in many populations including pregnant and post-partum women. Little is known about how women who have experienced stillbirth (defined as fetal death at 20 or more weeks of gestation) feel about physical activity or use physical activity following this experience. The purpose of this study was to qualitatively explore women’s beliefs about physical activity following a stillbirth. Methods This was an exploratory qualitative research study. Participants were English-speaking women between the ages of 19 and 44 years who experienced a stillbirth in the past year from their recruitment date. Interviews were conducted over the phone or in-person based on participants’ preferences and location of residence and approximately 30–45 minutes in length. Results Twenty-four women participated in the study (M age = 33 ± 3.68 years; M time since stillbirth = 6.33 ± 3.06 months). Women’s beliefs about physical activity after stillbirth were coded into the following major themes: barriers to physical activity (emotional symptoms and lack of motivation, tired, lack of time, guilt, letting go of a pregnant body, and seeing other babies), benefits to physical activity (feeling better emotionally/mentally, helping women to cope or be therapeutic), importance of physical activity (working through grief, time for self), motivators for physical activity (body shape/weight, health, more children, be a role model, already an exerciser). Health care providers and their role in physical activity participation was also a major theme. Conclusions This is the first study to qualitatively explore beliefs about physical activity in women after a stillbirth. Women who have experienced stillbirth have unique beliefs about physical activity related to their experience with stillbirth. Findings from this study may help to improve the health and quality of life for women who have experienced stillbirth by utilizing physical activity as a strategy for improving depressive symptoms associated with experiencing a stillbirth. Future research in this area is highly warranted. PMID:24433530

Attitudes of older adults with serious competing health risks toward their implantable cardioverter-defibrillators: a pilot study.

PubMed

Green, Ariel R; Boyd, Cynthia M; Rickard, John; Gomon, Robert; Leff, Bruce

2015-12-23

In elderly heart failure patients, the survival benefit of implantable cardioverter-defibrillators (ICDs) may be attenuated due to competing health risks, and the risk of adverse outcomes magnified. Our objective was to examine older adults' attitudes towards ICD implantation in the context of competing health risks, exploring the determinants of ICD decision-making among a group of patients who had faced the decision in the past. Telephone survey with a qualitative component. Patients were age ≥70 with single- or dual-chamber ICDs from a single academic cardiac device clinic. Health status was assessed with the Vulnerable Elders Survey (VES-13). Responses to open-ended questions were transcribed verbatim; an "editing analysis" approach was used to extract themes. Forty-four ICD recipients participated (mean age 77.5 years). Nineteen participants (43%) had VES-13 scores ≥3, indicating a 50% likelihood of death or functional decline within 2 years. Twenty-one participants (48%) had received prior ICD shocks. Forty participants (91%) said they would "definitely" choose to get an ICD again in their current health. By and large, patients revealed a strong desire to extend life, expressed complete confidence in the lifesaving capabilities of their ICDs, and did not describe consideration of competing health risks. In this pilot telephone survey with a qualitative component, nearly all older adults with ICDs would still choose to get an ICD despite high short-term risk of death or health deterioration. These findings suggest the need to partner more effectively with patients and families to decide how best to use medical technologies, particularly for older adults with competing risks.

Implementing a Death with Dignity program at a comprehensive cancer center.

PubMed

Loggers, Elizabeth Trice; Starks, Helene; Shannon-Dudley, Moreen; Back, Anthony L; Appelbaum, Frederick R; Stewart, F Marc

2013-04-11

The majority of Death with Dignity participants in Washington State and Oregon have received a diagnosis of terminal cancer. As more states consider legislation regarding physician-assisted death, the experience of a comprehensive cancer center may be informative. We describe the implementation of a Death with Dignity program at Seattle Cancer Care Alliance, the site of care for the Fred Hutchinson-University of Washington Cancer Consortium, a comprehensive cancer center in Seattle that serves the Pacific Northwest. Institution-level data were compared with publicly available statewide data from Oregon and Washington. A total of 114 patients inquired about our Death with Dignity program between March 5, 2009, and December 31, 2011. Of these, 44 (38.6%) did not pursue the program, and 30 (26.3%) initiated the process but either elected not to continue or died before completion. Of the 40 participants who, after counseling and upon request, received a prescription for a lethal dose of secobarbital (35.1% of the 114 patients who inquired about the program), all died, 24 after medication ingestion (60% of those obtaining prescriptions). The participants at our center accounted for 15.7% of all participants in the Death with Dignity program in Washington (255 persons) and were typically white, male, and well educated. The most common reasons for participation were loss of autonomy (97.2%), inability to engage in enjoyable activities (88.9%), and loss of dignity (75.0%). Eleven participants lived for more than 6 months after prescription receipt. Qualitatively, patients and families were grateful to receive the lethal prescription, whether it was used or not. Overall, our Death with Dignity program has been well accepted by patients and clinicians.

Death Rituals Reported by White, Black, and Hispanic Parents Following the ICU Death of an Infant or Child

PubMed Central

Brooten, Dorothy; Youngblut, JoAnne M.; Charles, Donna; Roche, Rosa; Hidalgo, Ivette; Malkawi, Fatima

2015-01-01

Purpose To examine rituals (disposing remains, wakes, funerals/burials, celebrations) of White, Black, Hispanic parents post ICU infant/child death. Design and methods Qualitative design, 63 parents completed English or Spanish semi-structured interviews at 7 & 13 months after infant’s/child’s death. Interviews were audio-recorded, transcribed verbatim, and entered into Atlas.ti for analysis. An inductive approach to thematization was used to develop codes. Results Parents: mean age 35.1 years (SD = 9.03); 33% Black, 27% White, 40% Hispanic; from 17 countries. Three themes emerged: immediately after death - shock and stress, needing help with arrangements, decisions on burial or cremation (conflicts due to finances, religion, culture), when and where to hold wakes, funerals/burials. Wakes and funerals - who prepares child’s body, appropriate dress (deceased child, mourners), who can come (cultural restrictions),-variations by child age, parent choice, culture, religion, country. After burial/cremation - being with family, milestone celebrations. Conclusion Child death is devastating for parents, other children, grandparents, and family members. Practice Implications. Rituals after child death require decisions about the child’s remains, wakes, funerals/burials at time of great pain for parents. This is especially true for newly immigrated parents and those with language barriers where making arrangements is especially hard and often very isolating. Health professionals who provide support need to be cognizant of practice differences based on religion, culture, economics, family traditions, and individual preference and provide as much support and resource as possible. A list of religious leaders representing the community’s cultures and funeral service providers who may provide lower cost burials/cremations is helpful. PMID:26639773

Burden of injury during the complex political emergency in northern Uganda

PubMed Central

Lett, Ronald R.; Kobusingye, Olive Chifefe; Ekwaru, Paul

2006-01-01

Background War injury is a public health problem that warrants global attention. This study aims to determine the burden of injury during a complex emergency in sub-Saharan Africa. Methods To determine the magnitude, causes, distribution, risk factors and cumulative burden of injury in a population experiencing armed conflict in northern Uganda since 1986 and to evaluate the living conditions and access to care for injury victims, we took a multistage, stratified, random sampling from the Gulu district to determine the rates of injury from 1994 to 1999. The Gulu district is endemic for malaria, tuberculosis, HIV and malnutrition and has a high maternal death rate. It is 1 of 3 districts in northern Uganda affected by war since 1986. The study participants included 8595 people from 1475 households. Of these, 73.0% lived in temporary housing, 46.0% were internally displaced and 81.0% were under 35 years of age. Trained interviewers administered a 3-part household survey in the local language. Quantitative data on injury, household environment, health care and demography were analyzed. Qualitative data from part 3 of the survey will be reported elsewhere. A similar rural district (Mukono) not affected by war was used for comparison. We studied injury risk factors, mortality and disability rates, accumulated deaths, access to care and living conditions. Results Of the study population, 14% were injured annually: gunshot injuries were the leading cause of death. The annual death rate from war injury was 7.8/1000 (95% confidence interval [CI] 7.0–8.5) and the disability rate was 11.3/1000 (95% CI 10.4–12.2). The annual excess injury mortality was 6.85/1000. Only 4.5% of the injured were combatants. Fifty percent of the injured received first aid, but only 13.0% of those who died reached hospital. The injury mortality in Gulu was 8.35-fold greater than that for Mukono. Conclusions The crisis in Gulu can be considered a complex political emergency. Protracted conflicts should not be ignored because of a low rate of injury death since the cumulative total is high. Political emergencies should be monitored, and when the mortality exceeds 3.5%, international intervention is indicated. The international and national failings of this protracted conflict should be critically analyzed so that such political emergencies can be prevented or terminated. PMID:16524144

Who listens to parents and is anything done?

PubMed

Mander, Rosemary

2014-01-01

The Listening to parents survey, which took place in early 2014, sought the views of parents bereaved by stillbirth or early neonatal death. The findings showed the marked variation in care provided. The low response rate may call into question the authority of the findings Research into perinatal loss seems to be unlikely to be operationalised. More qualitative research may make such implementation more feasible, hopefully making optimal care more certain for grieving parents.

The Chemical Adventures of Sherlock Holmes: The Death Puzzle at 221B Baker Street

NASA Astrophysics Data System (ADS)

Rybolt, Thomas R.; Waddell, Thomas G.

1999-04-01

This story describes a chemical mystery with an emphasis on medicinal chemistry and qualitative analysis. It is the tenth article in a series presenting a scientific problem in mystery format in the context of the popular and beloved characters Sherlock Holmes and Dr. Watson. There is a break in the story where the reader (students and teachers) can ponder and solve the mystery. Sherlock Holmes then provides his solution.

End of life care in sub-Saharan Africa: a systematic review of the qualitative literature.

PubMed

Gysels, Marjolein; Pell, Christopher; Straus, Lianne; Pool, Robert

2011-03-09

End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence. Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format. Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process. The data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.

Cell death induced by Morarah and Khaltita in hepatoma cancer cells (Huh-7).

PubMed

Baig, Saeeda; Alamgir, Mohiuddin

2009-10-01

To compare the combined and isolated growth inhibitory effects of Morarah and Khaltita (herbs) on hepatoma cell lines (Huh-7), through induction of apoptosis or necrosis. Comparative controlled in-vitro study. The Molecular Biology Laboratory, The Aga Khan University, Karachi, from June to December 2006. The growth of hepatoma cell lines (Huh-7) was checked by adding Khaltita and Morarah to the cells before culture in a 24 well plate. Six wells were selected and labeled for each of the four variables (controls, Khaltita, Morarah and mixture). After 2 days, cells were studied under an inverted phase contrast microscope and fields were recorded. Approximately four fields per slide of higher intensity were selected randomly to determine the dead cell density, and the procedure was repeated 10 or more times. Frequency and percentages were calculated for dead or alive cells in controls, Morarah, Khaltita and their mixture. Chi-square was used to compare the qualitative variables. P-values < 0.05 were considered significant. Morarah and Khaltita were found to induce statistically significant (p < 0.001) cell death in hepatoma cell lines (Huh-7). At a magnification of 40x, the controls showed 1% dead cells compared to 91% in Morarah, 83% in Khaltita and 73% in combined mixture of Khaltita and Morarah. At magnification of 20x, the controls showed 4% dead cells compared to 44% in Morarah, 47% in Khaltita and 49% in the combined mixture of Khaltita and Morarah. Morarah and Khaltita induced cell death in cultured hepatoma cells (Huh-7).

[Recognizing and defining dying. Analysis of end-of-life coverage in German nursing textbooks].

PubMed

Pleschberger, Sabine; Hornek, Alexandra

2011-08-01

Text books play an important role in basic education in nursing. This study aimed at capturing the extent and content of end-of-life issues in nursing text books in German language. For that reason, a quantitative and a qualitative analysis of relevant content in a comprehensive sample of nursing text books available (n = 65) were conducted. Whereas 29.2 % of the books do not cover the issue at all, 44.5 % dedicate a separate chapter to the issue of dying, which accounts for 1.34 % of all pages on average. Of all specialties, both surgery and internal medicine feature the lowest, and paediatrics and oncology the highest share of coverage. 41.53 % of all text books studied contain a definition of the term dying which is based on a great variety of approaches. 23 books list criteria that define the recognition of dying, 21 of which draw attention to symptoms of impending death. 84 % of the books refer to the work of Elisabeth Kübler-Ross. Overall, the amount of coverage of the issue of dying in nursing text books can be considered marginal by international comparison. What is problematic is the conceptual reduction to physiological signs of impending death and the lack of references to existing theoretical work. Integration of knowledge from the area of palliative care in all specialties is strongly needed. Additionally, there is a need for a stronger conceptual debate in order to avoid problems in communication about death and dying in nursing education and practice.

Protocol: changes in rates of opioid overdose and poisoning events in an integrated health system following the introduction of a formulation of OxyContin® with abuse-deterrent properties.

PubMed

Janoff, Shannon L; Perrin, Nancy A; Coplan, Paul M; Chilcoat, Howard D; Campbell, Cynthia I; Green, Carla A

2016-05-14

Addiction, overdoses and deaths resulting from prescription opioids have increased dramatically over the last decade. In response, several manufacturers have developed formulations of opioids with abuse-deterrent properties. For many of these products, the Food and Drug Administration (FDA) recognized the formulation with labeling claims and mandated post-marketing studies to assess the abuse-deterrent effects. In response, we assess differences in rates of opioid-related overdoses and poisonings prior to and following the introduction of a formulation of OxyContin® with abuse-deterrent properties. To assess effects of this formulation, electronic medical record (EMR) data from Kaiser Permanente Northwest (KPNW) and Kaiser Permanente Northern California (KPNC) are linked to state death data and compared to chart audits. Overdose and poisoning events will be categorized by intentionality and number of agents involved, including illicit drugs and alcohol. Using 6-month intervals over a 10-year period, trends will be compared in rates of opioid-related overdoses and poisoning events associated with OxyContin® to rates of events associated with other oxycodone and opioid formulations. Qualitative interviews with patients and relatives of deceased patients will be conducted to capture circumstances surrounding events. This study assesses and tracks changes in opioid-related overdoses and poisoning events prior to and following the introduction of OxyContin® with abuse-deterrent properties. Public health significance is high because these medications are designed to reduce abuse-related behaviors that lead to important adverse outcomes, including overdoses and deaths.

'I'll continue as long as I can, and die when I can't help it': a qualitative exploration of the views of end-of-life care by those affected by head and neck cancer (HNC).

PubMed

O'Sullivan, E M; Higginson, I J

2016-03-01

Evidence currently suggests that many people would prefer to die at home. However, optimal end-of-life homecare depends on the patient's ability to express their care preferences, prognostic awareness, complexity of care, concordance of patient/carer preferences and availability of appropriate services/support. This study explores Irish Head and Neck Cancer (HNC) patient and caregivers' views on end-of-life care (EoLC), an area hitherto little studied. Qualitative data were collected using semistructured, one-to-one interviews with HNC patients with therapeutic experience and their nearest caregivers (n=10, 7 patients, 3 carers). Interview topic guide was developed from the PRISMA EoLC survey. Thematic content analysis was employed to interpret findings. Thematic analysis identified five broad EoLC themes: prognostication, decision making, preferred focus of care/advanced care planning (ACP), preferred place of care/death, perceived barriers/supports to home death. Participants were very willing to discuss most aspects of EoLC, exhibiting no signs of distress. Patients were reluctant to discuss preferred focus-of-care and ACP. This seemed linked to an overly optimistic view of aggressive medical intervention. While carers favoured full patient involvement in decision making, patients were divided between wanting autonomy and those preferring a more passive approach. All expressed a preference for homecare, and most felt they would ideally prefer to die at home. However, decision making was considered a complex process intertwined with risks, responsibilities and commitments to others. Carer burden and symptom control were major concerns. Normalising discussions on EoLC may benefit those affected by HNC. However, in HNC, this needs to be done alongside discussions regarding potentially life-extending treatment, symptom management and support. 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/

Improving opioid safety practices in primary care: protocol for the development and evaluation of a multifaceted, theory-informed pilot intervention for healthcare providers

PubMed Central

Leece, Pamela; Buchman, Daniel Z; Hamilton, Michael; Timmings, Caitlyn; Shantharam, Yalnee; Moore, Julia; Furlan, Andrea D

2017-01-01

Introduction In North America, drug overdose deaths are reaching unprecedented levels, largely driven by increasing prescription opioid-related deaths. Despite the development of several opioid guidelines, prescribing behaviours still contribute to poor patient outcomes and societal harm. Factors at the provider and system level may hinder or facilitate the application of evidence-based guidelines; interventions designed to address such factors are needed. Methods and analysis Using implementation science and behaviour change theory, we have planned the development and evaluation of a comprehensive Opioid Self-Assessment Package, designed to increase adherence to the Canadian Opioid Guideline among family physicians. The intervention uses practical educational and self-assessment tools to provide prescribers with feedback on their current knowledge and practices, and resources to improve their practice. The evaluation approach uses a pretest and post-test design and includes both quantitative and qualitative methods at baseline and 6 months. We will recruit a purposive sample of approximately 10 family physicians in Ontario from diverse practice settings, who currently treat patients with long-term opioid therapy for chronic pain. Quantitative data will be analysed using basic descriptive statistics, and qualitative data will be analysed using the Framework Method. Ethics and dissemination The University Health Network Research Ethics Board approved this study. Dissemination plan includes publications, conference presentations and brief stakeholder reports. This evidence-informed, theory-driven intervention has implications for national application of opioid quality improvement tools in primary care settings. We are engaging experts and end users in advisory and stakeholder roles throughout our project to increase its national relevance, application and sustainability. The performance measures could be used as the basis for health system quality improvement indicators to monitor opioid prescribing. Additionally, the methods and approach used in this study could be adapted for other opioid guidelines, or applied to other areas of preventive healthcare and clinical guideline implementation processes. PMID:28446522

Challenges to discussing palliative care with people experiencing homelessness: a qualitative study

PubMed Central

Shulman, Caroline; Low, Joseph; Hewett, Nigel; Daley, Julian; Davis, Sarah; Brophy, Nimah; Howard, Diana; Vivat, Bella; Kennedy, Peter; Stone, Patrick

2017-01-01

Objectives To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care Setting Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services from three London boroughs. Participants People experiencing homelessness (n=28), formerly homeless people (n=10), health and social care providers (n=48), hostel staff (n=30) and outreach staff (n=10). Methods In this qualitative descriptive study, participants were recruited to interviews and focus groups across three London boroughs. Views and experiences of end-of-life care were explored with people with personal experience of homelessness, health and social care professionals and hostel and outreach staff. Saturation was reached when no new themes emerged from discussions. Results 28 focus groups and 10 individual interviews were conducted. Participants highlighted that conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Themes identified as challenges to such conversations included attitudes to death; the recovery focused nature of services for people experiencing homelessness; uncertainty regarding prognosis and place of care; and fear of negative impact. Conclusions This research highlights the need for a different approach to supporting people who are homeless and are experiencing advanced ill health, one that incorporates uncertainty and promotes well-being, dignity and choice. We propose parallel planning and mapping as a way of working with uncertainty. We acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless to be known and explored. PMID:29183927

Challenges to discussing palliative care with people experiencing homelessness: a qualitative study.

PubMed

Hudson, Briony F; Shulman, Caroline; Low, Joseph; Hewett, Nigel; Daley, Julian; Davis, Sarah; Brophy, Nimah; Howard, Diana; Vivat, Bella; Kennedy, Peter; Stone, Patrick

2017-11-28

To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care SETTING: Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services from three London boroughs. People experiencing homelessness (n=28), formerly homeless people (n=10), health and social care providers (n=48), hostel staff (n=30) and outreach staff (n=10 ). METHODS: In this qualitative descriptive study, participants were recruited to interviews and focus groups across three London boroughs. Views and experiences of end-of-life care were explored with people with personal experience of homelessness, health and social care professionals and hostel and outreach staff. Saturation was reached when no new themes emerged from discussions. 28 focus groups and 10 individual interviews were conducted. Participants highlighted that conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Themes identified as challenges to such conversations included attitudes to death; the recovery focused nature of services for people experiencing homelessness; uncertainty regarding prognosis and place of care; and fear of negative impact. This research highlights the need for a different approach to supporting people who are homeless and are experiencing advanced ill health, one that incorporates uncertainty and promotes well-being, dignity and choice. We propose parallel planning and mapping as a way of working with uncertainty. We acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless to be known and explored. © 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.

Trends of psychology-related research on euthanasia: a qualitative software-based thematic analysis of journal abstracts.

PubMed

Caputo, Andrea

2015-01-01

Euthanasia has received increasing attention in both academic and public debates as one of the most controversial issues. However, the contribution of psychology-related themes to the topic has had little role on these ongoing debates. The aim of the present study is twofold: (1) to explore the main themes relating to euthanasia as provided by psychology-related research; (2) to analyze the temporal trends of psychology-related research on euthanasia over the last decades. A comprehensive search of academic literature was conducted on PsychINFO database. A qualitative software-based thematic analysis was carried out on 602 journal abstracts published from 1935 to 2014. This study highlighted four different thematic areas which characterized the scientific discourse on euthanasia: (1) moral values, in terms of religious, philosophical, and social implications concerning the individual's decision to die; (2) professional ethics, in terms of health and social workers' legal responsibility in death assistance; (3) end-of-life care, with regard to medical options provided to support individuals nearing death; and (4) patient's right to healthcare, in terms of access to palliative care and better quality of dying. Euthanasia discourse over the last decades seems to be overall characterized by two main dimensions: (1) the increasing trend of social legitimacy and acceptability of euthanasia over time, which moved from ethical to healthcare issues; and (2) the curvilinear temporal trend about the request/provision process in euthanasia, which moved from patient's decision for ending life (mainly characterizing the most past and recent research) to the role of health professionals (with a peak in the 1990s). The results suggest palliative care as a potential future research area which can provide healthcare providers with skills to 'connect' with patients, understand patients' hidden agendas, and grant a good quality of life and dying process.

The trajectory of experience of critical care nurses in providing end-of-life care: A qualitative descriptive study.

PubMed

Ong, Keh Kiong; Ting, Kit Cheng; Chow, Yeow Leng

2018-01-01

To understand the perceptions of critical care nurses towards providing end-of-life care. There has been an increasing interest in end-of-life care in the critical care setting. In Singapore, approximately half of deaths in the hospital occur during critical care. While nurses are well positioned to provide end-of-life care to patients and their family members, they faced barriers to providing end-of-life care. Also, providing end-of-life care has profound positive and negative psychological effects on nurses, with the latter being more prominent. Qualitative descriptive design. Data collection was performed in a medical intensive care unit of a public tertiary hospital in Singapore. Ten registered nurses were purposively sampled and interviewed individually using a semi-structured interview guide. A codebook was developed to guide coding, and data were thematically analysed. Rigour was maintained. Nurses went through a trajectory of experience. They experienced the culture of care and developed dissatisfaction with it. The tension shaped their perception and meaning of life and death, and they developed mechanisms to reach resolution. This study provides insight on nurses' perception as a trajectory of experience and raised several implications on clinical practice, policy and research. There is a need to alleviate the tension nurses face and to facilitate coming to terms with the tension by improving the culture of care and supporting nurses. Nurses could be involved more in decision-making and empowered to start end-of-life care conversations within the team and with family members. Communication with family members and between nurses and doctors could be improved. Support for nurses providing end-of-life care could be enhanced through promoting social networks, education and bereavement support. Further research is needed to explore ways to support and empower nurses to provide end-of-life care in critical care. © 2017 John Wiley & Sons Ltd.

When fear of cancer recurrence becomes a clinical issue: a qualitative analysis of features associated with clinical fear of cancer recurrence.

PubMed

Mutsaers, Brittany; Jones, Georden; Rutkowski, Nicole; Tomei, Christina; Séguin Leclair, Caroline; Petricone-Westwood, Danielle; Simard, Sébastien; Lebel, Sophie

2016-10-01

Fear of cancer recurrence (FCR) is a common experience for cancer survivors. However, it remains unclear what characteristics differentiate non-clinical from clinical levels of FCR. The goal of this study was to investigate the potential hallmarks of clinical FCR. A convenience sample of 40 participants (n = 19 female) was drawn from another study (Lebel et al. in Qual Life Res 25:311-321. doi: 10.1007/s11136-015-1088-2 , 2016). The semi-structured interview for fear of cancer recurrence (Simard and Savard in J Cancer Surviv 9:481-491. doi: 10.1007/s11764-015-0424-4 , 2015) was used to identify participants with non-clinical and clinical FCR and qualitative analysis of these interviews was performed. Individuals with clinical FCR reported the following features: death-related thoughts, feeling alone, belief that the cancer would return, experiencing intolerance of uncertainty, having cancer-related thoughts and imagery that were difficult to control, daily and recurrent, lasted 30 minutes or more, increased over time, caused distress and impacted their daily life. Triggers of FCR and coping strategies did not appear to be features of clinical FCR as they were reported by participants with a range of FCR scores. While features of clinical FCR found in this analysis such as intrusive thoughts, distress and impact on functioning confirmed previous FCR research, other features spontaneously emerged from the interviews including "death-related thoughts," "feeling alone," and "belief that the cancer will return." The participants' descriptions of cancer-specific fear and worry suggest that FCR is a distinct phenomenon related to cancer survivorship, despite similarities with psychological disorders (e.g., Anxiety Disorders). Future research investigating the construct of FCR, and the distinguishing features of clinical FCR across a range of cancer types and gender is required.

Family Caregivers' Reflections on Experiences of Assisted Suicide in Switzerland: A Qualitative Interview Study.

PubMed

Gamondi, C; Pott, Murielle; Preston, Nancy; Payne, Sheila

2018-04-01

Thousands of family members worldwide are annually involved in assisted dying. Family participation in assisted dying has rarely been investigated and families' needs typically are not considered in assisted dying legislation and clinical guidelines. To explore family caregivers' reflections on experiences of assisted suicide in Switzerland. A cross-sectional qualitative interview study conducted in the Italian- and French-speaking regions of Switzerland. Interpretation and analysis were performed using qualitative content analysis. Twenty-eight close relatives and family carers of 18 patients who died by assisted suicide in Switzerland were interviewed. Family members perceived their involvement in assisted suicide as characterized by five phases; 1) contemplation, 2) gaining acceptance, 3) gaining permission, 4) organization, and 5) aftermath. Families can participate in these phases at diverse levels and with varying degrees of involvement. Important triggers for families and patients for transition between phases include patients' experiences of their life-threatening illnesses and related treatments, their increasing awareness of approaching death, and family member recognition of their loved one's unbearable suffering. Participating in assisted suicide created further demanding tasks for families in addition to their role of caregivers. Families appeared to be involved in the preparation of assisted suicide along with patients, irrespective of their personal values regarding assisted dying. Support for family members is essential if they are involved in tasks preparatory to assisted suicide. Clinical guidelines and policies concerning assisted dying should acknowledge and address family needs. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[Qualitative research about euthanasia concept, between Spanish doctors].

PubMed

Cuervo Pinna, M Á; Rubio, M; Altisent Trota, R; Rocafort Gil, J; Gómez Sancho, M

2016-01-01

The decriminalisation of euthanasia and assisted medical suicide has generated a continuous debate. The terminological confusion is one of the main difficulties in obtaining medical practice consensus. The objective of this study was to determine whether the terms of Euthanasia and physician assisted suicide are used with the same meaning by doctors in Extremadura (Spain). A qualitative study was conducted using two focus groups in which doctors from different specialties who attended a large number of terminal patients participated. No other focus group was required due to saturation. The sessions were tape recorded and transcribed by two experts in qualitative methodology. Atlas.ti software was used for the analysis. We were advised by the "Health Care at the end of life" Group of the Organizacion Médica Colegial of Spain. Terminological confusion was verified in: 1) The mixture of etymological, functional and social concepts, 2) the term Passive Euthanasia, 3) the association between euthanasia and physician assisted suicide, 4) the confusion with the equivalent "wish to hasten death", and 5) the difficulty of differentiating sedation with Euthanasia. There was consensus on some aspects: a) Full voluntariness, b) the condition of terminal illness, and c) the condition of unbearable symptoms. Conceptual variability persists in relation to the concept of Euthanasia, and is particularly noticeable in the persistence of the concept of passive euthanasia. It would be desirable to achieve a common language to assign a precise meaning to these words to help doctors in their professional practice. Copyright © 2015 SECA. Published by Elsevier Espana. All rights reserved.

Communication about HIV and death: Maternal reports of primary school-aged children's questions after maternal HIV disclosure in rural South Africa.

PubMed

Rochat, Tamsen J; Mitchell, Joanie; Lubbe, Anina M; Stein, Alan; Tomlinson, Mark; Bland, Ruth M

2017-01-01

Children's understanding of HIV and death in epidemic regions is under-researched. We investigated children's death-related questions post maternal HIV-disclosure. Secondary aims examined characteristics associated with death-related questions and consequences for children's mental health. HIV-infected mothers (N = 281) were supported to disclose their HIV status to their children (6-10 years) in an uncontrolled pre-post intervention evaluation. Children's questions post-disclosure were collected by maternal report, 1-2 weeks post-disclosure. 61/281 children asked 88 death-related questions, which were analysed qualitatively. Logistic regression analyses examined characteristics associated with death-related questions. Using the parent-report Child Behaviour Checklist (CBCL), linear regression analysis examined differences in total CBCL problems by group, controlling for baseline. Children's questions were grouped into three themes: 'threats'; 'implications' and 'clarifications'. Children were most concerned about the threat of death, mother's survival, and prior family deaths. In multivariate analysis variables significantly associated with asking death-related questions included an absence of regular remittance to the mother (AOR 0.25 [CI 0.10, 0.59] p = 0.002), mother reporting the child's initial reaction to disclosure being "frightened" (AOR 6.57 [CI 2.75, 15.70] p=<0.001) and level of disclosure (full/partial) to the child (AOR 2.55 [CI 1.28, 5.06] p = 0.008). Controlling for significant variables and baseline, all children showed improvements on the CBCL post-intervention; with no significant differences on total problems scores post-intervention (β -0.096 SE1.366 t = -0.07 p = 0.944). The content of questions children asked following disclosure indicate some understanding of HIV and, for almost a third of children, its potential consequence for parental death. Level of maternal disclosure and stability of financial support to the family may facilitate or inhibit discussions about death post-disclosure. Communication about death did not have immediate negative consequences on child behaviour according to maternal report. In sub-Saharan Africa, given exposure to death at young ages, meeting children's informational needs could increase their resilience. Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.

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/.

A qualitative feasibility study to inform a randomised controlled trial of fluid bolus therapy in septic shock

PubMed Central

O’Hara, Caitlin B; Canter, Ruth R; Mouncey, Paul R; Carter, Anjali; Jones, Nicola; Nadel, Simon; Peters, Mark J; Lyttle, Mark D; Harrison, David A; Rowan, Kathryn M; Inwald, David; Woolfall, Kerry

2018-01-01

Objective The Fluids in Shock (FiSh) Trial proposes to evaluate whether restrictive fluid bolus therapy (10 mL/kg) is more beneficial than current recommended practice (20 mL/kg) in the resuscitation of children with septic shock in the UK. This qualitative feasibility study aimed to explore acceptability of the FiSh Trial, including research without prior consent (RWPC), potential barriers to recruitment and participant information for a pilot trial. Design Qualitative interview study involving parents of children who had presented to a UK emergency department or been admitted to a paediatric intensive care unit with severe infection in the previous 3 years. Participants Twenty-one parents (seven bereaved) were interviewed 16 (median) months since their child’s hospital admission (range: 1–41). Results All parents said they would have provided consent for the use of their child’s data in the FiSh Trial. The majority were unfamiliar with RWPC, yet supported its use. Parents were initially concerned about the change from currently recommended treatment, yet were reassured by explanations of the current evidence base, fluid bolus therapy and monitoring procedures. Parents made recommendations about the timing of the research discussion and content of participant information. Bereaved parents stated that recruiters should not discuss research immediately after a child’s death, but supported a personalised postal ‘opt-out’ approach to consent. Conclusions Findings show that parents whose child has experienced severe infection supported the proposed FiSh Trial, including the use of RWPC. Parents’ views informed the development of the pilot trial protocol and site staff training. Trial registration number ISRCTN15244462—results. PMID:28847877

Support for using five attributes to describe spirituality among families with a parent in hospice.

PubMed

Stephenson, Pam Shockey; Sheehan, Denice; Shahrour, Ghada

2017-06-01

The importance of spirituality in the dying process is well documented. However, what spirituality means in these situations is hard to discern because few people (patients, families, researchers, or caregivers) will view spirituality in the same way. The present research supports the use of a spiritual framework consisting of five common attributes (meaning, beliefs, connections, self-transcendence, and value) as a mechanism for viewing spirituality for people nearing the end of life. Using qualitative interviews from two related studies, our study aims to describe the prevalence of spirituality and its nature according to these five spiritual attributes. Data from two previous studies were analyzed. The first employed the methods of grounded theory to understand the strategies adolescents used to manage the impending death of a parent. Some 61 participants from 26 families were interviewed, including ill parents/patients, well parents/caregivers, and adolescents. The second study consisted of 15 interviews with the surviving parent and adolescents from 6 of these families after the death of the parent. The original research from which these data were drawn did not seek to describe spirituality. However, spiritual themes were prevalent in the stories of many participants and included each of the five spiritual attributes. Our findings demonstrate the prevalence of spirituality in the everyday lives of these families and supports the use of the spiritual framework according to the five common attributes to describe spirituality.

Till Death Do Us Part: The Lived Experience of an Elderly Couple Who Chose to End Their Lives by Spousal Self-euthanasia.

PubMed

van Wijngaarden, Els J; Leget, Carlo J W; Goossensen, Anne

2016-12-01

This article provides the first qualitative account of spousal self-euthanasia in older people, a previously unexplored phenomenon. It investigates the lived experience of a Dutch elderly couple who strongly wished-and chose-to die together at a self-directed moment, despite not suffering from a life-threatening disease or severe depression. It describes their subjective experiences and considerations prior to their self-chosen death. The case study focuses on the particular experience of one elderly couple (aged above 70) by presenting two personal accounts from an insider perspective. These were analyzed using a thematic existential phenomenological method. Spousal self-euthanasia-which in the literature is associated with self-deliverance, self-determination, and a reasonable wish to die-is presented here as related to alienation from one's body and identity, the growing emptiness of life due to loss of activities, and an inability to reconcile oneself with one's changed "being-in-the-world." Their decision to end life is largely based on the anticipatory fear of further deterioration, further losing control, and not being able to control time and manner of death in the future. The couple's agreement to end their lives together, however, held both in an impasse, as their concerns, sense of time and logic differed significantly. In this case, a close relation between having a death wish and severe depression is questioned. This article concludes by outlining the practical implications for professionals working in gerontology and recommends further research on the relation between self-euthanasia and depression in elderly people. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Help, I need to develop communication skills on donation: the "VIDEO" model.

PubMed

Smudla, A; Mihály, S; Hegedüs, K; Nemes, B; Fazakas, J

2011-05-01

Information about brain stem death and donation can be influence the consent rate for donation and its psychosocial effects. The aim of this study was to create a "VIDEO" model that could be used to help physicians to develop communication skills. A video recorded 32 simulations of family interviews: 16 under-age and 16 adult donors. They were analyzed during 8 courses conducted in 2008 and 2009. During the VIDEO process, the visual presentation was followed by participants (n=192) discussing interactively the donation situation. After the transcription of the video records, family interviews were explored retrospectively regarding informing relatives about brain stem death and donation, typical communication gaps and common questions from families. The data were examined qualitatively and semiquantitatively. We think that teaching can be optimized by our results. A comprehensible explanation about brain stem death was provided to relatives in 65.63% of cases. The consent of the family was more important for the physicians than the application of the law in 93.75%; 78.13% of physicians emphasized altruism to support donation. Remarkable mistakes of communication included using the teams coma and brain stem death interchangeably (9.38%); applying expressions connected with life in the present tense (21.88%) and mechanically kept alive (21.88%); organ-focused behavior such as "organs to be usable" (34.38%). The frequent questions and statements of "relatives" were "heart beats" (100%), "did he really die?" (65.63%), "fear of loss of integrity of the corpse" (59.38%), and "wake up from the coma" (46.88%). Interaction with the family requires great preparation. The communication skills of physicians can be developed through the VIDEO model. The results can be integrated into educational programs that consider the particular features of the given country. Copyright © 2011 Elsevier Inc. All rights reserved.

Getting to the Heart of Being the Match: A Qualitative Analysis of Bone Marrow Donor Recruitment and Retention Among College Students

PubMed Central

Rogers, Charles R.; Jeon, Kwon Chan; Rosen, Brittany

2014-01-01

Introduction For those with certain blood or bone cancers, bone marrow donation can mean the difference between life and death. The National Marrow Donor Program® (NMDP) operates the largest bone marrow registry of potential donors; however, at times when potential matches are identified, many donors opt not to donate. The purpose of this study was to describe perspectives from college-aged students on recruitment to a bone marrow donation registry and retention to the registry/follow-through with the donation process. Methods Researchers employed a one-time qualitative study using 7 focus groups comprised of 10 – 11 college students each (n = 76). Results Results yielded three overarching themes: donor recruitment, donor retention, and factors contributing to the overall donation process. More specifically, this study identified key factors affecting bone marrow donation in an essential population: facilitators, barriers, knowledge, and ‘goodness’. Additionally, marketing and communication were found to be major determinants of potential donors staying with the NMDP. Conclusion Better explanations and awareness/promotion campaigns are necessary for recruiting potential donors to the NMDP and to increase the likelihood that the donor will follow through with the donation should a potential match be identified. Recommendations from this study may improve recruitment and retention rates among the NMDP campaigns targeting college students. PMID:25632376

Constructing Understandings of End-of-Life Care in Europe: A Qualitative Study Involving Cognitive Interviewing with Implications for Cross-National Surveys

PubMed Central

Bechinger-English, Dorothee; Bausewein, Claudia; Simon, Steffan T.; Harding, Richard; Higginson, Irene J.; Gomes, Barbara

2011-01-01

Abstract Background Although national findings regarding people's end-of-life care (EoLC) preferences and priorities are available within Europe, a lack of research coordination between countries has meant that cross-national understandings of EoLC remain unknown. Purpose To (1) identify English and German understandings of EoLC within the context of an EoLC survey, and (2) to synthesise these understandings to aid interpretation of results from a cross-national survey. Methods An inductive and interpretive two-phased sequential design involving (1) qualitative analysis of cognitive interview data from 15 English and 15 German respondents to develop country-related categories, and (2) qualitative synthesis to identify a conceptually coherent understanding of EoLC. Results Open and axial coding resulted in six English and six German categories. Commonalities included (a) the importance of social and relational dimensions, (b) dynamic decision making comprising uncertainty, (c) a valuing of life's quality and quantity, and (d) expectations for holistic care involving autonomy, choice, and timely information from trusted professionals. Differences involved attention to practical matters, and thoughts about prolongation of life, preferred place of death, and the role of media and context. Synthesis resulted in four concepts with underlying coherence: expectations of a high standard of EoLC involving autonomy, choice, and context; evolving decision making amid anticipated change; thoughts about living and existing; and worldviews shaping EoLC preferences in real and hypothetical scenarios. Conclusion Individual and country-related diversity must be remembered when quantifying EoLC understandings. Inductive-interpretive analysis of cognitive interview data aids interpretation of survey findings. Cross-national research coordination and qualitative synthesis assists EoLC in Europe. PMID:21306232

End-of-Life Decision Making in Palliative Care and Recommendations of the Council of Europe: Qualitative Secondary Analysis of Interviews and Observation Field Notes.

PubMed

Martins Pereira, Sandra; Fradique, Emília; Hernández-Marrero, Pablo

2018-05-01

End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations," aiming at improving decision-making processes and empowering professionals in making ELDs. To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs. Qualitative secondary analysis. Four qualitative datasets, including 44 interviews and 9 team observation field notes from previous studies with PC teams/professionals in Portugal. An analysis grid based on the abovementioned guide was created considering three dimensions: ethical and legal frameworks, decision-making process, and disputed/controversial issues. The majority of the professionals considered the ethical principle of autonomy paramount in end-of-life decision making. Justice and beneficence/nonmaleficence were also valued. Although not mentioned in the Guide, the professionals also considered other ethical principles when making ELDs, namely, responsibility, integrity, and dignity. Most of the interviewees and field notes referred to the collective interprofessional dimension of the decision-making process. Palliative sedation and the wish to hasten death were the most mentioned disputed/controversial issues. The nature, limitations, and benefits of qualitative secondary analysis are discussed. End-of-life decision-making processes made by Portuguese PC teams seem to be consistent with the guidelines of the CoE. Further research is needed about disputed/controversial issues and the actual use, effectiveness, and impact of ethical guidelines for end-of-life decision making on professionals' empowerment and for all parties involved.

[Cultural strategies for coping with infant death in a Pediatric Intensive Care Unit].

PubMed

González Gil, T

2008-01-01

To analyze what is the conceptualization the nurses have of child death in a Pediatric Intensive Care Unit (PICU) and identify sociocultural strategies for coping with it. qualitative methodology. Etnography. PICU University Hospital Gregorio Marañón. Madrid. nurses and nursing assistants who work in the PICU. Observation participant and semi-structured in-depth interview. Organization and analysis of the data: the analytic procedure posed from the Established Theory. SOFTWARE OF SUPPORT: Atlas-ti. Child death acquires specific meanings in the PICU context. Cognitive classifications and symbols give meaning to a reality to which the nursing professionals adapt through the creation of cultural coping strategies. Based on the data, 5 strategies could be identified: redefinition of the death concept, delay in identity assignment of the children, (funeral rituals), discharge metaphor, and avoidable condensed symbols. Hidden behind the indifferent aspects of our daily life, difficult social and cultural constructs support our living and working efforts. Through daily life Anthropology we can know and understand our relationship with all our surroundings. When we are aware of them, we can develop new resources and strategies to adapt to the difficult circumstances they cause, in this case, within the context of critical ill child care.

Disaster Management in Flash Floods in Leh (Ladakh): A Case Study

PubMed Central

Gupta, Preeti; Khanna, Anurag; Majumdar, S

2012-01-01

Background: On August 6, 2010, in the dark of the midnight, there were flash floods due to cloud burst in Leh in Ladakh region of North India. It rained 14 inches in 2 hours, causing loss of human life and destruction. The civil hospital of Leh was badly damaged and rendered dysfunctional. Search and rescue operations were launched by the Indian Army immediately after the disaster. The injured and the dead were shifted to Army Hospital, Leh, and mass casualty management was started by the army doctors while relief work was mounted by the army and civil administration. Objective: The present study was done to document disaster management strategies and approaches and to assesses the impact of flash floods on human lives, health hazards, and future implications of a natural disaster. Materials and Methods: The approach used was both quantitative as well as qualitative. It included data collection from the primary sources of the district collectorate, interviews with the district civil administration, health officials, and army officials who organized rescue operations, restoration of communication and transport, mass casualty management, and informal discussions with local residents. Results: 234 persons died and over 800 were reported missing. Almost half of the people who died were local residents (49.6%) and foreigners (10.2%). Age-wise analysis of the deaths shows that the majority of deaths were reported in the age group of 25–50 years, accounting for 44.4% of deaths, followed by the 11–25-year age group with 22.2% deaths. The gender analysis showed that 61.5% were males and 38.5% were females. A further analysis showed that more females died in the age groups <10 years and ≥50 years. Conclusions: Disaster preparedness is critical, particularly in natural disasters. The Army's immediate search, rescue, and relief operations and mass casualty management effectively and efficiently mitigated the impact of flash floods, and restored normal life. PMID:23112446

Effect of marital status on death rates. Part 2: Transient mortality spikes

NASA Astrophysics Data System (ADS)

Richmond, Peter; Roehner, Bertrand M.

2016-05-01

We examine what happens in a population when it experiences an abrupt change in surrounding conditions. Several cases of such ;abrupt transitions; for both physical and living social systems are analyzed from which it can be seen that all share a common pattern. First, a steep rising death rate followed by a much slower relaxation process during which the death rate decreases as a power law. This leads us to propose a general principle which can be summarized as follows: ;Any abrupt change in living conditions generates a mortality spike which acts as a kind of selection process;. This we term the Transient Shock conjecture. It provides a qualitative model which leads to testable predictions. For example, marriage certainly brings about a major change in personal and social conditions and according to our conjecture one would expect a mortality spike in the months following marriage. At first sight this may seem an unlikely proposition but we demonstrate (by three different methods) that even here the existence of mortality spikes is supported by solid empirical evidence.

Medical Findings and Toxicological Analysis in Infant Death by Balloon Gas Asphyxia: A Case Report.

PubMed

Cuypers, Eva; Rosier, Elien; Loix, Sara; Develter, Wim; Van Den Bogaert, Wouter; Wuestenbergs, Joke; Van de Voorde, Wim; Tytgat, Jan

2017-05-01

In recent years, the increasing number of asphyxiation cases due to helium inhalation is remarkable. All described cases in the literature where diagnosed as suicide. In this article, however, we describe a triple infant homicide in which helium, as balloon gas, was administered to three young children after sedation causing asphyxiation and death through the medical findings and toxicological analysis. During autopsy, in addition to standard toxicological samples, gas samples from lungs as well as lung tissue itself were directly collected into headspace vials. Besides routine toxicological analysis, which revealed toxic levels of doxylamine, qualitative analysis on gas and lung samples was performed using headspace gas chromatography-mass spectrometry. As carrier gas, the commonly used helium was replaced by nitrogen. In gas samples from lungs of all three children, no helium was found. Nevertheless, lung tissue samples were found positive on helium. Therefore, sedation followed by asphyxia due to helium inhalation can strongly be assumed as the cause of death of all three children. © The Author 2017. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

The use of focus groups in evaluating quality of life components among elderly Chinese people.

PubMed

Leung, Kai-Kuen; Wu, En-Chang; Lue, Bee-Horng; Tang, Li-Yu

2004-02-01

In Taiwan, to measure the quality of life (QOL) of elderly Chinese, one must rely on instruments developed in other Chinese or Western populations and not specifically for the elderly. The purpose of this study is to understand the components of QOL for elderly Chinese from Taiwan living in residential homes or in their communities. Forty-four elderly men and women divided into six focus groups were interviewed on video tape and the resultant recording was analyzed qualitatively by six independent researchers. The study yielded 15 QOL domains grouped into six dimensions: physical health (physical well-being, impact of illness, medical care), psychological health (mood states, life attitude and retrospection, philosophy of living, self-efficacy), social function (connectedness, exercise and leisure activities, social activities and services), living environment (living environment and arrangements, institutional factors), economic status, and religion and death (religion, death). For elderly Chinese in Taiwan, positive and negative life domains are equally important in the perception of life quality; person-environment interaction is a major consideration in the evaluation of QOL; family ties are an important component of QOL; traditional Chinese beliefs exert a positive influence on perceived QOL; and social functioning and vitality have a different meaning in Chinese compared to Western cultures.

“Having Another Child Would Be a Life or Death Situation for Her”: Understanding Pregnancy Termination Among Couples in Rural Bangladesh

PubMed Central

Hindin, Michelle J.

2008-01-01

Objectives. We conducted a mixed-method study in rural southwestern Bangladesh, a country in which an estimated 730 000 elective pregnancy terminations occur each year, to explore women's and couples’ motivations to terminate pregnancies. Methods. Quantitative data derived from a 1998 cross-sectional survey and a longitudinal demographic surveillance system (1998–2003) were combined with qualitative data gathered through 84 in-depth interviews conducted with 19 couples during 2004–2005. Results. Quantitative results indicated that 11% of couples reported a pregnancy termination in the study period; the rate was highest among couples who reported in 1998 that they wanted no more children (29%). Both wives’ and husbands’ fertility preferences independently and significantly predicted pregnancy termination. Qualitative findings showed that more than half of the participants had attempted to terminate a pregnancy at least once in their lifetime. Conclusions. Our results highlight the importance of collecting data from both partners and the influence of husbands’ fertility preferences on reproductive decisionmaking. The prevalence of reported pregnancy terminations in our population, along with the use of informal methods in termination attempts, highlights the need for continued provision of contraceptives and access to safe and affordable pregnancy termination services in this setting. PMID:18703439

Qualitative research to make practical sense of sustainability in primary health care projects implemented by non-governmental organizations.

PubMed

Sarriot, Eric G; Winch, Peter J; Ryan, Leo J; Edison, Jay; Bowie, Janice; Swedberg, Eric; Welch, Rikki

2004-01-01

Sustainability continues to be a serious concern for Primary Health Care (PHC) interventions targeting the death of millions of children in developing countries each year. Our work with over 30 Non-Governmental Organizations (NGOs) implementing USAID's Child Survival and Health Grants Program (CSHGP)-funded projects revealed the need for a study to develop a framework for sustainability assessment in these projects. We surveyed NGO informants and project managers through semi-structured interviews and questionnaires. This paper summarizes our study findings. The NGOs share key values about sustainability, but are skeptical about approaches perceived as disconnected from field reality. In their experience, sustainable achievements occur through the interaction of capable local stakeholders and communities. This depends strongly on enabling conditions, which NGO projects should advance. Sustainability assessment is multidimensional, value-based and embeds health within a larger sustainable development perspective. It reduces, but does not eliminate, the unpredictability of long-term outcomes. It should start with the consideration of the 'local systems' which need to develop a common purpose. Our ability to address the complexity inherent to sustainability thinking rests with the validity of the models used to design interventions. A participant, qualitative research approach helped us make sense of sustainability in NGO field practice.

A systematic review and thematic synthesis of qualitative studies on maternal emergency transport in low- and middle-income countries.

PubMed

Wilson, Amie; Hillman, Sarah; Rosato, Mikey; Skelton, John; Costello, Anthony; Hussein, Julia; MacArthur, Christine; Coomarasamy, Arri

2013-09-01

Most maternal deaths are preventable with emergency obstetric care; therefore, ensuring access is essential. There is little focused information on emergency transport of pregnant women. The literature on emergency transport of pregnant women in low- and middle-income countries (LMICs) was systematically reviewed and synthesized to explore current practices, barriers, and facilitators for transport utilization. MEDLINE, EMBASE, BNI, Cochrane Library, CINAHL, African Index Medicus, ASSIA, QUALIDATA, RHL, and Science Citation Index (inception to April 2012) were searched without language restriction. Studies using qualitative methodology and reporting on emergency transportation in LMICs were included. Thematic framework and synthesis through examination and translation of common elements were used to analyze and synthesize the data. Twenty-nine articles were included. Eight major themes were identified: time for transport; transport options; geography; local support; autonomy; culture; finance; and ergonomics. Key issues were transport availability; transport speed; terrain; meteorology; support; dependence for decision making; cultural issues; cost; and lack of safe, comfortable positioning during transport. Themes should be appreciated within local contexts to illuminate barriers and facilitators. Potential solutions include motorcycle ambulance programs, collaboration with taxi services, community education, subsidies, and vehicle maintenance. Copyright © 2013 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved.

Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes.

PubMed

Manheim, Chelsea E; Haverhals, Leah M; Jones, Jacqueline; Levy, Cari R

2016-01-01

The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans' family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans' families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans' needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans' end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran's death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.

A qualitative exploration of resilience in pre-adolescent AIDS orphans living in a residential care facility.

PubMed

Pienaar, Anja; Swanepoel, Zendré; van Rensburg, Hendrik; Heunis, Christo

2011-01-01

This article presents the findings of a study among a small group of South African AIDS orphans living in a residential care facility, Lebone Land. The research was conducted between June and September 2006. A qualitative, exploratory study consisting of in-depth, semistructured interviews with eight children and seven key informants aimed to identify and investigate developmental assets operating in the children's lives to help them cope amid exposure to adversities. The findings indicate that the developmental assets that facilitate coping and foster resilience in these children relate to four main components: external stressors and challenges, external supports, inner strengths and interpersonal and problem-solving skills. Emerging key themes relate to the experience of illness, death, poverty and violence, as well as the important roles of morality, social values, resistance skills, religion and faith in assisting these children in defining their purpose in life. To this end, constructive use of time, commitment to learning, goal-setting, problem-solving ability and self-efficacy are fundamental in the children's attainment of their future projections. Therefore, qualities such as optimism, perseverance and hope seem to permeate the children's process of recovery. Strong networks of support, particularly friendships with other children, also seem to contribute to developing and sustaining resilience.

SUDEP: To discuss or not? Recommendations from bereaved relatives.

PubMed

Ramachandran Nair, Rajesh; Jack, Susan M; Strohm, Sonya

2016-03-01

The overarching purpose of this descriptive and exploratory qualitative study was to understand the experiences of relatives of individuals whose deaths were identified as SUDEP and to explore their preferences regarding SUDEP counseling. The principles of fundamental qualitative description informed all design decisions. Stratified purposeful sampling included 27 bereaved relatives (parent, sibling, spouse or child), aged at least 18 years, of 21 persons who passed away because of SUDEP. In-depth one-to-one interviews were conducted. Directed content analysis was used to code, categorize, and synthesize the interview data. There was consensus among all participants that the risk of SUDEP should be discussed with patients by their healthcare providers. Relatives opted for information on SUDEP at the time of, or shortly following, the diagnosis of epilepsy. Neurologists were identified as the healthcare providers who should discuss SUDEP with patients during a face-to-face encounter, subsequently supplemented with written information. It was identified that, when discussing SUDEP, emphasis should be on the risk factors, possible preventive strategies, and the rarity of incidence. The results of this study indicated that bereaved relatives wanted neurologists to inform patients about the risk of SUDEP, with optimal timing and setting of SUDEP counseling determined on a case-by-case basis. Copyright © 2016 Elsevier Inc. All rights reserved.

Identifying the determinants of tuberculosis control in resource-poor countries: insights from a qualitative study in The Gambia.

PubMed

Harper, M; Ahmadu, F A; Ogden, J A; McAdam, K P; Lienhardt, C

2003-01-01

Despite the availability of effective treatment, tuberculosis (TB) remains a major cause of death from an infectious disease in the world, particularly in resource-poor countries. Among the chief reasons for this are deficiencies in case tracing and in adherence to treatment. In order to investigate the contribution of non-biological factors to these deficiencies, we carried out a qualitative study in The Gambia, West Africa, from October 2000 to March 2001. The methods used were focus group discussions, interviews, participant and non-participant observation, and case histories. Four domains were distinctively investigated: the TB patients, the community, the health care providers (including programme staff), and the donors and policy makers. Analysis of the data from all these sources indicated the contribution of a wide range of socio-anthropological factors which influence the success or otherwise of the TB control programme in The Gambia, i.e. gender, urban/rural residence, recourse to traditional healers, adherence to national health policies, knowledge about TB, migration, and socio-economic factors. It is concluded that all these factors must be taken into account in formulating interventions to improve detection of TB cases and patient adherence to treatment within the framework of the national TB control programmes, and proposals have been made for targeted interventions.

A mixed method thematic review: the importance of hope to the dying patient.

PubMed

Broadhurst, Kathleen; Harrington, Ann

2016-01-01

To review the literature and investigate the meaning of hope to patients receiving palliative care and to examine the themes that foster hope in those patients. Hope is often linked to the future and is a significant factor for patients dealing with adversity, such as a terminal illness. The concept of hope is underreported in the literature. Mixed method thematic review. CINAHL, Scopus, PsychINFO, Informit, PubMed, Science Direct, ProQuest, Web of Science and Google Scholar online databases were searched using keywords and inclusion and exclusion criteria published between 2003-2013. Twelve qualitative articles were thematically analysed using Braun and Clarke's (2006) steps to ascertain major themes and sub-themes. On analysis, the remaining three mixed method studies were found to reflect the themes generated by the qualitative studies. Seven key themes that increased hope were found: disease status; positive personal relationships; positive character traits; quality of life; setting and achieving goals; spirituality/religion; and hope after death. The importance of hope to dying patients was established. Hope is a very complex and personal phenomena requiring hope-enhancing strategies to be individualized. More research is needed with groups whose culture, youth or type of illness may affect their ability to foster and maintain hope. © 2015 John Wiley & Sons Ltd.

Patients' and family members' views on how clinicians enact and how they should enact incident disclosure: the "100 patient stories" qualitative study.

PubMed

Iedema, Rick; Allen, Suellen; Britton, Kate; Piper, Donella; Baker, Andrew; Grbich, Carol; Allan, Alfred; Jones, Liz; Tuckett, Anthony; Williams, Allison; Manias, Elizabeth; Gallagher, Thomas H

2011-07-25

To investigate patients' and family members' perceptions and experiences of disclosure of healthcare incidents and to derive principles of effective disclosure. Retrospective qualitative study based on 100 semi-structured, in depth interviews with patients and family members. Nationwide multisite survey across Australia. 39 patients and 80 family members who were involved in high severity healthcare incidents (leading to death, permanent disability, or long term harm) and incident disclosure. Recruitment was via national newspapers (43%), health services where the incidents occurred (28%), two internet marketing companies (27%), and consumer organisations (2%). Participants' recurrent experiences and concerns expressed in interviews. Most patients and family members felt that the health service incident disclosure rarely met their needs and expectations. They expected better preparation for incident disclosure, more shared dialogue about what went wrong, more follow-up support, input into when the time was ripe for closure, and more information about subsequent improvement in process. This analysis provided the basis for the formulation of a set of principles of effective incident disclosure. Despite growing prominence of open disclosure, discussion about healthcare incidents still falls short of patient and family member expectations. Healthcare organisations and providers should strengthen their efforts to meet patients' (and family members') needs and expectations.

Socio-Cultural Aspects of Chagas Disease: A Systematic Review of Qualitative Research

PubMed Central

Ventura-Garcia, Laia; Roura, Maria; Pell, Christopher; Posada, Elisabeth; Gascón, Joaquim; Aldasoro, Edelweis; Muñoz, Jose; Pool, Robert

2013-01-01

Background Globally, more than 10 million people are infected with Trypanosoma cruzi, which causes about 20 000 annual deaths. Although Chagas disease is endemic to certain regions of Latin America, migratory flows have enabled its expansion into areas where it was previously unknown. Economic, social and cultural factors play a significant role in its presence and perpetuation. This systematic review aims to provide a comprehensive overview of qualitative research on Chagas disease, both in endemic and non-endemic countries. Methodology/Principal Findings Searches were carried out in ten databases, and the bibliographies of retrieved studies were examined. Data from thirty-three identified studies were extracted, and findings were analyzed and synthesized along key themes. Themes identified for endemic countries included: socio-structural determinants of Chagas disease; health practices; biomedical conceptions of Chagas disease; patient's experience; and institutional strategies adopted. Concerning non-endemic countries, identified issues related to access to health services and health seeking. Conclusions The emergence and perpetuation of Chagas disease depends largely on socio-cultural aspects influencing health. As most interventions do not address the clinical, environmental, social and cultural aspects jointly, an explicitly multidimensional approach, incorporating the experiences of those affected is a potential tool for the development of long-term successful programs. Further research is needed to evaluate this approach. PMID:24069473

Provider perspectives on the enabling environment required for skilled birth attendance: a qualitative study in western Nepal.

PubMed

Morgan, Alison; Jimenez Soto, Eliana; Bhandari, Gajananda; Kermode, Michelle

2014-12-01

In Nepal, where difficult geography and an under-resourced health system contribute to poor health care access, the government has increased the number of trained skilled birth attendants (SBAs) and posted them in newly constructed birthing centres attached to peripheral health facilities that are available to women 24 h a day. This study describes their views on their enabling environment. Qualitative methods included semi-structured interviews with 22 SBAs within Palpa district, a hill district in the Western Region of Nepal; a focus group discussion with ten SBA trainees, and in-depth interviews with five key informants. Participants identified the essential components of an enabling environment as: relevant training; ongoing professional support; adequate infrastructure, equipment and drugs; and timely referral pathways. All SBAs who practised alone felt unable to manage obstetric complications because quality management of life-threatening complications requires the attention of more than one SBA. Maternal health guidelines should account for the provision of an enabling environment in addition to the deployment of SBAs. In Nepal, referral systems require strengthening, and the policy of posting SBAs alone, in remote clinics, needs to be reconsidered to achieve the goal of reducing maternal deaths through timely management of obstetric complications. © 2014 John Wiley & Sons Ltd.

Challenges to implementation of advance directives of will in hospital practice.

PubMed

Cogo, Silvana Bastos; Lunardi, Valéria Lerch; Quintana, Alberto Manuel; Girardon-Perlini, Nara Marilene Oliveira; Silveira, Rosemary Silva da

2016-01-01

to understand the difficulties and limitations in the implementation of advance directives of will in the hospital context. qualitative, exploratory and descriptive study conducted by means of semi-structured interviews with nurses, resident physicians and family caregivers. The data were analyzed by using discursive textual analysis based on the framework of bioethics principles. the following categories emerged: Terminality as an expression of loss and cure as an option for care; concerns about legal implications; advance directives of will demand patient autonomy and proper communication. limitations and difficulties in practice of advance directives of will from the perspective of the participants show, apart from countless conflicts and dilemmas regarding end-of life matters, that impending death experiences obstruct patients' wishes.

What do Non-clergy Spiritual Care Providers Contribute to End of Life Care in Israel? A Qualitative Study.

PubMed

Pagis, Michal; Tal, Orly; Cadge, Wendy

2017-04-01

Spiritual care is an increasingly important component of end of life care. As it emerges in Israel, it is intentionally built on a nonclerical model. Based on interviews with spiritual care providers in Israel, we find that they help patients and families talk about death and say goodbyes. They encourage the wrapping up of unfinished business, offer diverse cultural resources that can provide meaning, and use presence and touch to produce connection. As spiritual care emerges in Israel, providers are working with patients at the end of life in ways they see as quite distinct from rabbis. They offer broad frames of meaning to which patients from a range of religious traditions can connect.

Reflecting on one's own death: The existential questions that nurses face during end-of-life care.

PubMed

Karlsson, Margareta; Kasén, Anne; Wärnå-Furu, Carola

2017-04-01

When registered nurses care for patients at the end of life, they are often confronted with different issues related to suffering, dying, and death whether working in hospital or community care. Serious existential questions that challenge nurses' identities as human beings can arise as a result of these situations. The aim of our study was to describe and gain a deeper understanding of nurses' existential questions when caring for dying patients. Focus-group interviews with registered nurses who shared similar experiences and backgrounds about experiences in end-of-life care were employed to gain a deeper understanding about this sensitive subject. Focus-group interviews were performed in hospice care, in community care, and in a palliative care unit in western Sweden. A qualitative hermeneutic approach was employed to interpret the data. Nurses' existential questions balanced between responsibility and guilt in relation to their patients, between fear and courage in relation to being professional caregivers and fellow human beings, and between hope and despair in relation to the other's and their own death. Nurses in end-of-life care experience various emotions from patients related to things physical, spatial, and temporal. When nurses encounter these emotions as expressing a patient's suffering, they lead to challenges of balancing between different feelings in relation to patients, as both professional caregivers and fellow human beings. Nurses can experience growth both professionally and as human beings when caring for patients at the end of life.

After the death of a friend: Young Men’s grief and masculine identities

PubMed Central

Creighton, Genevieve; Oliffe, John L.; Butterwick, Shauna; Saewyc, Elizabeth

2015-01-01

Young men can have an uncomfortable relationship with grief. Socially constructed masculine ideals dictate that men be stoic in the aftermath of loss, most often expressing their sadness and despair as anger. Perhaps because of alignment to such masculine ideals little research has been done to explore young men’s grief – and chronicle the ways they think about loss, their responses and how they go about describing their identities after a tragic event. Using qualitative individual interviews and photo elicitation methods, we investigated the ways in which 25 men aged 19–25 grieved the accidental death of a male friend. The study was conducted from April 2010–December 2011. Causes of death were diverse, and included motor vehicle accidents, adventure sports, drug overdose and fights. The findings revealed men’s predominant grief responses as emptiness, anger, stoicism and sentimentality. Participants’ description of their grief responses illustrated the ways in which they struggled to reconcile feelings of vulnerability and manly ideals of strength and stoicism. We gained insight into men’s grief practices by looking at the ways in which they aligned themselves with a post-loss masculine identity. These identities, which included the adventurer, father-figure and the lamplighter, revealed gender-specific processes through which men understood and actively dealt with their tragic loss. The results offer novel insights to men’s grief and identity work that may serve to affirm other men’s experiences as well as guide counselling services targeted to young men. PMID:23517702

Best-practices approach to determination of blood alcohol concentration (BAC) at specific time points: Combination of ante-mortem alcohol pharmacokinetic modeling and post-mortem alcohol generation and transport considerations.

PubMed

Cowan, Dallas M; Maskrey, Joshua R; Fung, Ernest S; Woods, Tyler A; Stabryla, Lisa M; Scott, Paul K; Finley, Brent L

2016-07-01

Alcohol concentrations in biological matrices offer information regarding an individual's intoxication level at a given time. In forensic cases, the alcohol concentration in the blood (BAC) at the time of death is sometimes used interchangeably with the BAC measured post-mortem, without consideration for alcohol concentration changes in the body after death. However, post-mortem factors must be taken into account for accurate forensic determination of BAC prior to death to avoid incorrect conclusions. The main objective of this work was to describe best practices for relating ante-mortem and post-mortem alcohol concentrations, using a combination of modeling, empirical data and other qualitative considerations. The Widmark modeling approach is a best practices method for superimposing multiple alcohol doses ingested at various times with alcohol elimination rate adjustments based on individual body factors. We combined the selected ante-mortem model with a suggestion for an approach used to roughly estimate changes in BAC post-mortem, and then analyzed the available data on post-mortem alcohol production in human bodies and potential markers for alcohol production through decomposition and putrefaction. Hypothetical cases provide best practice approaches as an example for determining alcohol concentration in biological matrices ante-mortem, as well as potential issues encountered with quantitative post-mortem approaches. This study provides information for standardizing BAC determination in forensic toxicology, while minimizing real world case uncertainties. Copyright © 2016 Elsevier Inc. All rights reserved.

Family members' experiences with intensive care unit diaries when the patient does not survive.

PubMed

Johansson, Maria; Wåhlin, Ingrid; Magnusson, Lennart; Runeson, Ingrid; Hanson, Elizabeth

2018-03-01

The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU). A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos. The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting. Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient. © 2017 Nordic College of Caring Science.

After the death of a friend: young men's grief and masculine identities.

PubMed

Creighton, Genevieve; Oliffe, John L; Butterwick, Shauna; Saewyc, Elizabeth

2013-05-01

Young men can have an uncomfortable relationship with grief. Socially constructed masculine ideals dictate that men be stoic in the aftermath of loss, most often expressing their sadness and despair as anger. Perhaps because of alignment to such masculine ideals little research has been done to explore young men's grief--and chronicle the ways they think about loss, their responses and how they go about describing their identities after a tragic event. Using qualitative individual interviews and photo elicitation methods, we investigated the ways in which 25 men aged 19-25 grieved the accidental death of a male friend. The study was conducted from April 2010-December 2011. Causes of death were diverse, and included motor vehicle accidents, adventure sports, drug overdose and fights. The findings revealed men's predominant grief responses as emptiness, anger, stoicism and sentimentality. Participants' description of their grief responses illustrated the ways in which they struggled to reconcile feelings of vulnerability and manly ideals of strength and stoicism. We gained insight into men's grief practices by looking at the ways in which they aligned themselves with a post-loss masculine identity. These identities, which included the adventurer, father-figure and the lamplighter, revealed gender-specific processes through which men understood and actively dealt with their tragic loss. The results offer novel insights to men's grief and identity work that may serve to affirm other men's experiences as well as guide counselling services targeted to young men. Copyright © 2013 Elsevier Ltd. All rights reserved.

“This is Our Last Stop”: Negotiating End of Life Transitions in Assisted Living

PubMed Central

Ball, Mary M.; Kemp, Candace L.; Hollingsworth, Carole; Perkins, Molly M.

2014-01-01

Where people die has important implications for end-of-life (EOL) care. Assisted living (AL) increasingly is becoming a site of EOL care and a place where people die. AL residents are moving in older and sicker and with more complex care needs, yet AL remains largely a non-medical care setting that subscribes to a social rather than medical model of care. The aims of this paper are to add to the limited knowledge of how EOL is perceived, experienced, and managed in AL and to learn how individual, facility, and community factors influence these perceptions and experiences. Using qualitative methods and a grounded theory approach to study eight diverse AL settings, we present a preliminary model for how EOL care transitions are negotiated in AL that depicts the range of multilevel intersecting factors that shape EOL processes and events in AL. Facilities developed what we refer to as an EOL presence, which varied across and within settings depending on multiple influences, including, notably, the dying trajectories and care arrangements of residents at EOL, the prevalence of death and dying in a facility, and the attitudes and responses of individuals and facilities towards EOL processes and events, including how deaths were communicated and formally acknowledged and the impact of death and dying on residents and staff. Our findings indicate that in the majority of cases, EOL care must be supported by collaborative arrangements of care partners and that hospice care is a critical component. PMID:24984903

The relationship between grief adjustment and continuing bonds for parents who have lost a child.

PubMed

Ronen, Rama; Packman, Wendy; Field, Nigel P; Davies, Betty; Kramer, Robin; Long, Janet K

This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study methodology was used to describe six cases. Participants were classified into two groups based on scores on the Inventory of Complicated Grief. Commonalities in themes on the Continuing Bonds Interview and projective drawings were assessed. Those in the Non-Complicated Grief Group reported internalization of positive qualities and identification with the deceased child as a role model, whereas participants in the Complicated Grief Group did not report these experiences. In addition, the drawings of those in the Non-Complicated Grief Group were evaluated as more adaptive than those in the Complicated Grief Group.

Motivators and Barriers for Older People Participating in Resistance Training: A Systematic Review.

PubMed

Burton, Elissa; Farrier, Kaela; Lewin, Gill; Pettigrew, Simone; Hill, Anne-Marie; Airey, Phil; Bainbridge, Liz; Hill, Keith D

2017-04-01

Regular participation in resistance training is important for older people to maintain their health and independence, yet participation rates are low. The study aimed to identify motivators and barriers to older people participating in resistance training. A systematic review was conducted including quantitative, qualitative, and mixed-method studies. Searches generated 15,920 citations from six databases, with 14 studies (n = 1,937 participants) included. In total, 92 motivators and 24 barriers were identified. Motivators specific to participating in resistance training included preventing deterioration (disability), reducing risk of falls, building (toning) muscles, feeling more alert, and better concentration. Looking too muscular and thinking participation increased the risk of having a heart attack, stroke, or death, despite the minimal likelihood of these occurring, were barriers. The analysis indicates that increasing participation in resistance training among older people should focus on the specific benefits valued by older people and the dissemination of accurate information to counter misperceptions.

[Nursing students' perception of the learning process in a hospital setting].

PubMed

Alves, Elcilene Andreíne Terra Durgante; Cogo, Ana Luísa Petersen

2014-03-01

The aim of this study was to identijf how nursing students perceive and experience the learning process during curricular practice in a hospital setting. A qualitative, retrospective, documentary study was developed in an undergraduate nursing course. Data were comprised of 162 posts made by 34 students in the online discussion forum of the Learning Management System Moodle, during the first half of 2011. The following themes emergedfrom t he thematic content analysis: "nursing students' understanding about the professional practice," and "the teaching and learning process in the perspective of nursing students." The study demonstrated that the forum was a place for reporting experiences such as the description of the physical area, performing procedures, perception of nursing care activities, conJlicts with peers, coping with death and learning evaluation. The online discussion forum needs to be used by professors as a space of interaction so as to contribute to professional training.

Picturing Masculinities: Using Photoelicitation in Men’s Health Research

PubMed Central

Creighton, Genevieve M.; Brussoni, Mariana; Oliffe, John L.; Han, Christina

2015-01-01

This article explores the use of photo-elicitation methods in two men’s health studies. Discussed are the ways that photo-elicitation can facilitate conversation about health issues that might be otherwise challenging to access. In the first study, researchers explored 35 young men’s experiences of grief following the accidental death of a male peer. In the second study, researchers describe 64 fathers’ perceptions about their roles and identity with respect to child safety and risk. Photographs and accompanying narratives were analyzed and results were theorized using a masculinities framework. Discussed are the benefits of photo-elicitation, which include facilitating conversation about emotions, garnering insight into the structures and identities of masculinity in the context of men’s health. Considered also are some methodological challenges amid recommendations for ensuring reflexive practices. Based on the findings it is concluded that photo-elicitation can innovatively advance qualitative research in men’s health. PMID:26483294

[The right to die with dignity in an acute-care hospital: a qualitative study].

PubMed

Sepúlveda-Sánchez, Juana María; Morales-Asencio, Jose Miguel; Morales-Gil, Isabel María; Canca-Sánchez, José Carlos; Crespillo-García, Eva; Timonet-Andreu, Eva María

2014-01-01

To examine the perceptions and beliefs of doctors and nurses, and the barriers and facilitators they must address as regards the right to die with dignity in an acute-care hospital, and to consider the applicability of the provisions of Law 2/2010 of 8 April in this respect. A qualitative descriptive study, based on the focus group technique, using discourse analysis of the views of doctors and nurses responsible for the health care of terminal cancer and non-cancer patients in an acute-care hospital. The results obtained show that there are diverse obstacles to assure the rights of terminal patients, and to ensure the proper performance of their duties by healthcare professionals and institutions. The nature and impact of these difficulties depend on the characteristics of the patients and their families, the health workers involved, the organisation of health care, and cultural factors. The study highlights the need to improve the process of communication with patients and their families, to facilitate shared decision making and to establish measures to clarify issues such as palliative sedation and treatment limitation. It is necessary to improve the applicability of the law on living wills and dignified death in non-cancer specialist areas. Further training is needed regarding ethical, spiritual and anthropological aspects of care in these situations. Copyright © 2013 Elsevier España, S.L. All rights reserved.

Health‐related beliefs and experiences of Gypsies and Travellers: a qualitative study

PubMed Central

Van Cleemput, Patrice; Parry, Glenys; Thomas, Kate; Peters, Jean; Cooper, Cindy

2007-01-01

Objective To illuminate findings of the survey of the health status of Gypsies and Travellers by exploring their health‐related beliefs and experiences. Design Qualitative study of a purposive subsample from in‐depth interviews using framework analysis. Setting The homes or alternative community settings of the participants in five geographically dispersed study locations in England. Participants 27 Gypsies and Travellers with an experience of ill health, purposively sampled from a larger population participating in an epidemiological survey of health status. Results The experience of poor health and daily encounters of ill health among extended family members were normalised and accepted. Four major themes emerged relating to health beliefs and the effect of lifestyle on health for these respondents: the travelling way; low expectations of health; self‐reliance and staying in control; fatalism and fear of death. These themes dominated accounts of health experience and were relevant to the experience. These themes add richness to the health status data and inform our understanding. Conclusions Among Gypsies and Travellers, coherent cultural beliefs and attitudes underpin health‐related behaviour, and health experiences must be understood in this context. In this group, ill health is seen as normal, an inevitable consequence of adverse social experiences, and is stoically and fatalistically accepted. The provision of effective healthcare and improvement of poor health in Gypsies and Travellers will require multi‐agency awareness of these issues. PMID:17325396

Using movies to teach professionalism to medical students.

PubMed

Klemenc-Ketis, Zalika; Kersnik, Janko

2011-08-23

Professionalism topics are usually not covered as a separate lesson within formal curriculum, but in subtler and less officially recognized educational activities, which makes them difficult to teach and assess. Interactive methods (e.g. movies) could be efficient teaching methods but are rarely studied. The aims of this study were: 1) to test the relevance and usefulness of movies in teaching professionalism to fourth year medical students and, 2) to assess the impact of this teaching method on students' attitudes towards some professionalism topics. This was an education study with qualitative data analysis in a group of eleven fourth year medical students from the Medical School of University Maribor who attended an elective four month course on professionalism. There were 8 (66.7%) female students in the group. The mean age of the students was 21.9 ± 0.9 years. The authors used students' written reports and oral presentations as the basis for qualitative analysis using thematic codes. Students recognised the following dimensions in the movie: communication, empathy, doctors' personal interests and palliative care. It also made them think about their attitudes towards life, death and dying. The controlled environment of movies successfully enables students to explore their values, beliefs, and attitudes towards features of professionalism without feeling that their personal integrity had been threatened. Interactive teaching methods could become an indispensible aid in teaching professionalism to new generations.

Using movies to teach professionalism to medical students

PubMed Central

2011-01-01

Background Professionalism topics are usually not covered as a separate lesson within formal curriculum, but in subtler and less officially recognized educational activities, which makes them difficult to teach and assess. Interactive methods (e.g. movies) could be efficient teaching methods but are rarely studied. The aims of this study were: 1) to test the relevance and usefulness of movies in teaching professionalism to fourth year medical students and, 2) to assess the impact of this teaching method on students' attitudes towards some professionalism topics. Method This was an education study with qualitative data analysis in a group of eleven fourth year medical students from the Medical School of University Maribor who attended an elective four month course on professionalism. There were 8 (66.7%) female students in the group. The mean age of the students was 21.9 ± 0.9 years. The authors used students' written reports and oral presentations as the basis for qualitative analysis using thematic codes. Results Students recognised the following dimensions in the movie: communication, empathy, doctors' personal interests and palliative care. It also made them think about their attitudes towards life, death and dying. Conclusions The controlled environment of movies successfully enables students to explore their values, beliefs, and attitudes towards features of professionalism without feeling that their personal integrity had been threatened. Interactive teaching methods could become an indispensible aid in teaching professionalism to new generations. PMID:21861900

Moran-evolution of cooperation: From well-mixed to heterogeneous complex networks

NASA Astrophysics Data System (ADS)

Sarkar, Bijan

2018-05-01

Configurational arrangement of network architecture and interaction character of individuals are two most influential factors on the mechanisms underlying the evolutionary outcome of cooperation, which is explained by the well-established framework of evolutionary game theory. In the current study, not only qualitatively but also quantitatively, we measure Moran-evolution of cooperation to support an analytical agreement based on the consequences of the replicator equation in a finite population. The validity of the measurement has been double-checked in the well-mixed network by the Langevin stochastic differential equation and the Gillespie-algorithmic version of Moran-evolution, while in a structured network, the measurement of accuracy is verified by the standard numerical simulation. Considering the Birth-Death and Death-Birth updating rules through diffusion of individuals, the investigation is carried out in the wide range of game environments those relate to the various social dilemmas where we are able to draw a new rigorous mathematical track to tackle the heterogeneity of complex networks. The set of modified criteria reveals the exact fact about the emergence and maintenance of cooperation in the structured population. We find that in general, nature promotes the environment of coexistent traits.

Experiential health from an ageing and migration perspective: the case of older Finland-Swedes.

PubMed

Kulla, Gunilla; Ekman, Sirkka-Liisa; Sarvimäki, Anneli

2010-02-01

Research has shown that immigrants and minority groups tend to have a lower health status compared to the majority population. The Finnish immigrants in Sweden are no exception. The Finland-Swedes, i.e., persons living in Finland who have Swedish as their mother language, seem to be an exception, however. They have been found to have better health and longer life expectancy compared to the Finnish majority. Research on health among migrated Finland-Swedes is scarce. The aim of this study was to describe and deepen the understanding of how older Finland-Swedes living as immigrants in Sweden, as well as re-migrants in Finland, experienced their health. Data was collected through 39 qualitative interviews with 29 older Finland-Swedes aged 65 or more. Data was analysed through qualitative thematic content analysis. The analysis resulted in five themes: Ageing means becoming frail and closer to death; Despite frailty and old age it is possible to feel well and experience peace; Being grateful for health as a source of life; Health comes from inner strength and external sources; Migration meant a mental and physical burden to health. Overall, both ageing and migration were experienced as jeopardising health.

In the shadow of bad news – views of patients with acute leukaemia, myeloma or lung cancer about information, from diagnosis to cure or death

PubMed Central

Hoff, Lena; Tidefelt, Ulf; Thaning, Lars; Hermerén, Göran

2007-01-01

Background Many studies have been published about giving and receiving bad messages. However, only a few of them have followed the patients all the way through a disease as is done in this study. Many studies have been written about patients' coping strategies. In this study we will keep within the bounds of coping through information only. The aim of the study is to investigate patients' views of information during the trajectory of their disease, whether their reactions differ from each other and whether they differ in different phases of the disease. Methods Twelve patients with malignant haematological diseases or lung cancer were followed with interviews from diagnosis to recovery or into the terminal phase or at most for two years. The method is qualitative, using semi-structured interviews. Setting: Örebro University Hospital or the patient's home. Results All patients described themselves as well informed from the start but in later phases of their disease some of them came to express a great uncertainty about the progressing disease and about the approaching death. Most of them, regardless of whether they had a haematological malignancy or lung cancer, expressed a wish to be well informed all through the disease and even when the messages were bad. Different strategies for coping with information, however, affected how they then dealt with the information received. Four such coping strategies were found: 1) Information-dependent and accepting; 2) Information-dependent but denying; 3) Medically informed and accepting; 4) Medically informed but denying. Conclusion To several patients there was an unmet need for information about the progressing disease and the approaching death. To optimize the care of these patients it seems important that the physician is aware of patients' need for information even when the news is bad. Knowing the patient's information strategy could probably function as a key for the physician to communicate with patients on these matters. PMID:17250767

A Qualitative Study of Patient Motivation to Adhere to Combination Antiretroviral Therapy in South Africa

PubMed Central

Gray, Debra; Gengiah, Santhanalakshmi; Kunene, Pinky; Gengiah, Tanuja N.; Naidoo, Kogieleum; Grant, Alison D.

2015-01-01

Abstract Taken as prescribed, that is, with high adherence, combination antiretroviral therapy (ART) has changed HIV infection and disease from being a sure predictor of death to a manageable chronic illness. Adherence, however, is difficult to achieve and maintain. The CAPRISA 058 study was conducted between 2007 and 2009 to test the efficacy of individualized motivational counselling to enhance ART adherence in South Africa. As part of the overall trial, a qualitative sub-study was conducted, including 30 individual interviews and four focus group discussions with patients in the first 9 months of ART initiation. Data were inductively analyzed, using thematic analysis, to identify themes central to ART adherence in this context. Four themes emerged that characterize the participants' experiences and high motivation to adhere to ART. Participants in this study were highly motivated to adhere, as they acknowledged that ART was ‘life-giving’, in the face of a large amount of morbidity and mortality. They were further supported by techniques of routine remembering, and highlighted the importance of good social support and access to supportive healthcare workers, to their continued success in negotiating their treatment. Participants in the current study told us that their adherence motivation is enhanced by free accessible care, approachable and supportive healthcare workers, broad social acceptance of ART, and past first-hand experiences with AIDS-related co-morbidity and mortality. Programs that include specific attention to these aspects of care will likely be successful in the long term. PMID:25692575

Living with a Crucial Decision: A Qualitative Study of Parental Narratives Three Years after the Loss of Their Newborn in the NICU

PubMed Central

Caeymaex, Laurence; Speranza, Mario; Vasilescu, Caroline; Danan, Claude; Bourrat, Marie-Michèle

2011-01-01

Background The importance of involving parents in the end-of-life decision-making-process (EOL DMP) for their child in the neonatal intensive care unit (NICU) is recognised by ethical guidelines in numerous countries. However, studies exploring parents' opinions on the type of involvement report conflicting results. This study sought to explore parents' experience of the EOL DMP for their child in the NICU. Methods The study used a retrospective longitudinal design with a qualitative analysis of parental experience 3 years after the death of their child in four NICUs in France. 53 face-to-face interviews and 80 telephone interviews were conducted with 164 individuals. Semi-structured interviews were conducted to explore how parents perceived their role in the decision process, what they valued about physicians' attitudes in this situation and whether their long-term emotional well being varied according to their perceived role in the EOL DMP. Findings Qualitative analysis identified four types of perceived role in the DMP: shared, medical, informed parental decision, and no decision. Shared DM was the most appreciated by parents. Medical DM was experienced as positive only when it was associated with communication. Informed parental DM was associated with feelings of anxiousness and abandonment. The physicians' attitudes that were perceived as helpful in the long term were explicit sharing of responsibility, clear expression of staff preferences, and respectful care and language toward the child. Interpretation Parents find it valuable to express their opinion in the EOL DMP of their child. Nonetheless, they do need continuous emotional support and an explicit share of the responsibility for the decision. As involvement preferences and associated feelings can vary, parents should be able to decide what role they want to play. However, our study suggests that fully autonomous decisions should be misadvised in these types of tragic choices. PMID:22194873

A Framework for Categorizing Social Interactions Related to End-of-Life Care in Nursing Homes

PubMed Central

Bern-Klug, Mercedes

2009-01-01

Purpose: Almost half of people age 85 and older who die annually in the United States die as nursing home residents, yet because it is not always clear who is close to death, not all residents who might benefit from end-of-life care receive it. The purpose of this study is to develop a framework for organizing social interactions related to end-of-life care and to characterize the social construction of dying in two nursing homes. Design: Secondary analysis of qualitative ethnographic data collected before the death of 45 residents who were selected for the study on account of their “declining” health status. Methods: Field notes, medical chart data, and transcribed interviews corresponding to 45 residents in two nursing homes in a large Midwestern city were analyzed using qualitative descriptive methods guided by symbolic interaction and role theory. The data were also grouped by resident to facilitate the development of cases that illustrate the categories of social interactions. A second reader also categorized all the resident cases into one of five categories as a means of verifying the model. Results: A new framework of five categories to name the stance toward the possibility of dying is presented and illustrated with cases. The categories include: dying allowed, dying contested, mixed message dying, not dying, and not enough information. Cases are provided to illustrate the importance of recognizing the impact that social interactions can have on care. Over half the resident cases were classified as mixed message dying or not enough information, which speaks to the ambiguity regarding care plan goals found in the two nursing homes in the study. Implications: Social interactions related to the health care and dying status of a nursing home resident help to construct a social reality, and that social reality can affect the care the nursing home resident receives. Conversations about goals of care, and how these goals will be operationalized are important issues for discussion among residents (to the extent able), family, staff, and physicians. Social interactions, or the lack thereof, matter. PMID:19491358

Barriers to access and utilization of emergency obstetric care at health facilities in sub-Saharan Africa-a systematic review protocol.

PubMed

Geleto, Ayele; Chojenta, Catherine; Mussa, Abdulbasit; Loxton, Deborah

2018-04-16

Nearly 15% of all pregnancies end in fatal perinatal obstetric complications including bleeding, infections, hypertension, obstructed labor, and complications of abortion. Between 1990 and 2015, an estimated 10.7 million women died due to obstetric complications. Almost all of these deaths (99%) happened in developing countries, and 66% of maternal deaths were attributed to sub-Saharan Africa. The majority of cases of maternal mortalities can be prevented through provision of evidence-based potentially life-saving signal functions of emergency obstetric care. However, different factors can hinder women's ability to access and use emergency obstetric services in sub-Saharan Africa. Therefore, the aim of this review is to synthesize current evidence on barriers to accessing and utilizing emergency obstetric care in sub-Saharan African. Decision-makers and policy formulators will use evidence generated from this review in improving maternal healthcare particularly the emergency obstetric care. Electronic databases including MEDLINE, CINAHL, Embase, and Maternity and Infant Care will be searched for studies using predefined search terms. Articles published in English language between 2010 and 2017 with quantitative and qualitative design will be included. The identified papers will be assessed for meeting eligibility criteria. First, the articles will be screened by examining their titles and abstracts. Then, two reviewers will review the full text of the selected articles independently. Two reviewers using a standard data extraction format will undertake data extraction from the retained studies. The quality of the included papers will be assessed using the mixed methods appraisal tool. Results from the eligible studies will be qualitatively synthesized using the narrative synthesis approach and reported using the three delays model. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist will be employed to present the findings. This systematic review will present a detailed synthesis of the evidence for barriers to access and utilization of emergency obstetric care in sub-Saharan Africa over the last 7 years. This systematic review is expected to provide clear information that can help in designing maternal health policy and interventions particularly in emergency obstetric care in sub-Saharan Africa where maternal mortality remains high. PROSPERO CRD42017074102 .

Estimating the Post-Mortem Interval of skeletonized remains: The use of Infrared spectroscopy and Raman spectro-microscopy

NASA Astrophysics Data System (ADS)

Creagh, Dudley; Cameron, Alyce

2017-08-01

When skeletonized remains are found it becomes a police task to determine to identify the body and establish the cause of death. It assists investigators if the Post-Mortem Interval (PMI) can be established. Hitherto no reliable qualitative method of estimating the PMI has been found. A quantitative method has yet to be developed. This paper shows that IR spectroscopy and Raman microscopy have the potential to form the basis of a quantitative method.

"I started working because I was hungry": The consequences of food insecurity for children's well-being in rural Ethiopia.

PubMed

Morrow, Virginia; Tafere, Yisak; Chuta, Nardos; Zharkevich, Ina

2017-06-01

Food insecurity, the state of being without reliable access to a sufficient quantity of safe, nutritious food, is a persistent problem in rural Ethiopia. However, little qualitative research has explored how food insecurity affects children over time, from their point of view. What are the effects of economic 'shocks' such as illness, death, loss of livestock, drought and inflation on availability of food, and children's well-being? To what extent do social protection schemes (in this case, the Productive Safety Net Programme) mitigate the long-term effects of food insecurity for children? The paper uses a life-course approach, drawing on analysis of four rounds of qualitative longitudinal research conducted in 2007, 2008, 2011 and 2014, with eight case study children, as part of Young Lives, an ongoing cohort study. Children's descriptions of the importance of food and a varied diet (dietary diversity) in everyday life were expressed in a range of qualitative methods, including interviews, group discussions and creative methods. The paper suggests that while the overall picture of food security in Ethiopia has improved in the past decade, for the poorest rural families, food insecurity remains a major factor influencing decisions about a range of matters - children's time allocation, whether to continue in school, whether to migrate for work, and whether they marry. The paper argues that experiences of food insecurity need to be understood holistically, in relation to other aspects of children's lives, at differing stages of the life-course during childhood. The paper concludes that nutritional support beyond early childhood needs to be a focus of policy and programming. Copyright © 2017 Elsevier Ltd. All rights reserved.

Communication and interpretation of emotional distress within the friendships of young Irish men prior to suicide: a qualitative study.

PubMed

Sweeney, Lorna; Owens, Christabel; Malone, Kevin

2015-03-01

The potential for young men in crisis to be supported by their lay networks is an important issue for suicide prevention, due to the under-utilisation of healthcare services by this population. Central to the provision of lay support is the capability of social networks to recognise and respond effectively to young men's psychological distress and suicide risk. The aim of this qualitative study was to explore young men's narratives of peer suicide, in order to identify how they interpreted and responded to behavioural changes and indications of distress from their friend before suicide. In-depth qualitative interviews were conducted during 2009/10 with 15 Irish males (aged 19-30 years) who had experienced the death by suicide of a male friend in the preceding 5 years. The data were analysed using a thematic approach. Through the analysis of the participants' stories and experiences, we identified several features of young male friendships and social interactions that could be addressed to strengthen the support available to young men in crisis. These included the reluctance of young men to discuss emotional or personal issues within male friendships; the tendency to reveal worries and emotion only within the context of alcohol consumption; the tendency of friends to respond in a dismissive or disapproving way to communication of suicidal thoughts; the difficulty of knowing how to interpret a friend's inconsistent or ambiguous behaviour prior to suicide; and beliefs about the sort of person who takes their own life. Community-based suicide prevention initiatives must enhance the potential of young male social networks to support young men in crisis, through specific provisions for developing openness in communication and responsiveness, and improved education about suicide risk. © 2014 John Wiley & Sons Ltd.

Who Am I to Decide Whether This Person Is to Die Today? Physicians' Life-or-Death Decisions for Elderly Critically Ill Patients at the Emergency Department-ICU Interface: A Qualitative Study.

PubMed

Fassier, Thomas; Valour, Elizabeth; Colin, Cyrille; Danet, François

2016-07-01

We explored physicians' perceptions of and attitudes toward triage and end-of-life decisions for elderly critically ill patients at the emergency department (ED)-ICU interface. This was a qualitative study with thematic analysis of data collected through semistructured interviews (15 emergency physicians and 9 ICU physicians) and nonparticipant observations (324 hours, 8 units, in 2 hospitals in France). Six themes emerged: (1) Physicians revealed a representation of elderly patients that comprised both negative and positive stereotypes, and expressed the concept of physiologic age. (2) These age-related factors influenced physicians' decisionmaking in resuscitate/not resuscitate situations. (3) Three main communication patterns framed the decisions: interdisciplinary decisions, decisions by 2 physicians on their own, and unilateral decisions by 1 physician; however, some physicians avoided decisions, facing uncertainty and conflicts. (4) Conflicts and communication gaps occurred at the ED-ICU interface and upstream of the ED-ICU interface. (5) End-of-life decisions were perceived as more complex in the ED, in the absence of family or of information about elderly patients' end-of-life preferences, and when there was conflict with relatives, time pressure, and a lack of training in end-of-life decisionmaking. (6) During decisionmaking, patients' safety and quality of care were potentially compromised by delayed or denied intensive care and lack of palliative care. These qualitative findings highlight the cognitive heuristics and biases, interphysician conflicts, and communication gaps influencing physicians' triage and end-of-life decisions for elderly critically ill patients at the ED-ICU interface and suggest strategies to improve these decisions. Copyright © 2015 American College of Emergency Physicians. Published by Elsevier Inc. All rights reserved.

Control of cancer-related signal transduction networks

NASA Astrophysics Data System (ADS)

Albert, Reka

2013-03-01

Intra-cellular signaling networks are crucial to the maintenance of cellular homeostasis and for cell behavior (growth, survival, apoptosis, movement). Mutations or alterations in the expression of elements of cellular signaling networks can lead to incorrect behavioral decisions that could result in tumor development and/or the promotion of cell migration and metastasis. Thus, mitigation of the cascading effects of such dysregulations is an important control objective. My group at Penn State is collaborating with wet-bench biologists to develop and validate predictive models of various biological systems. Over the years we found that discrete dynamic modeling is very useful in molding qualitative interaction information into a predictive model. We recently demonstrated the effectiveness of network-based targeted manipulations on mitigating the disease T cell large granular lymphocyte (T-LGL) leukemia. The root of this disease is the abnormal survival of T cells which, after successfully fighting an infection, should undergo programmed cell death. We synthesized the relevant network of within-T-cell interactions from the literature, integrated it with qualitative knowledge of the dysregulated (abnormal) states of several network components, and formulated a Boolean dynamic model. The model indicated that the system possesses a steady state corresponding to the normal cell death state and a T-LGL steady state corresponding to the abnormal survival state. For each node, we evaluated the restorative manipulation consisting of maintaining the node in the state that is the opposite of its T-LGL state, e.g. knocking it out if it is overexpressed in the T-LGL state. We found that such control of any of 15 nodes led to the disappearance of the T-LGL steady state, leaving cell death as the only potential outcome from any initial condition. In four additional cases the probability of reaching the T-LGL state decreased dramatically, thus these nodes are also possible control targets. Our collaborators validated two of these predicted control mechanisms experimentally. Our work suggests that external control of a single node can be a fruitful therapeutic strategy.

A Short-Term Population Model of the Suicide Risk: The Case of Spain.

PubMed

De la Poza, Elena; Jódar, Lucas

2018-06-14

A relevant proportion of deaths by suicide have been attributed to other causes that produce the number of suicides remains hidden. The existence of a hidden number of cases is explained by the nature of the problem. Problems like this involve violence, and produce fear and social shame in victims' families. The existence of violence, fear and social shame experienced by victims favours a considerable number of suicides, identified as accidents or natural deaths. This paper proposes a short time discrete compartmental mathematical model to measure the suicidal risk for the case of Spain. The compartment model classifies and quantifies the amount of the Spanish population within the age intervals (16, 78) by their degree of suicide risk and their changes over time. Intercompartmental transits are due to the combination of quantitative and qualitative factors. Results are computed and simulations are performed to analyze the sensitivity of the model under uncertain coefficients.

Meaning-making in the aftermath of sudden infant death syndrome.

PubMed

Krueger, Guenther

2006-09-01

The reconstruction of meaning in the aftermath of sudden infant death syndrome (SIDS) is part of the grieving process but has to date been poorly understood. Earlier theorists including Freud, Bowlby and Kübler-Ross provided a foundation for what occurs during this time using stage theories. More recent researchers, often using qualitative techniques, have provided a more complex and expanded view that enhances our knowledge of meaning reconstruction following infant loss. This overview of representative contemporary authors compares and contrasts them with the longstanding models that are being supplanted within the emerging field of thanatology. Understanding parental reactions within this new framework can help healthcare professionals in dealing with those affected by SIDS and provide a more empathic and sensitive approach to individual differences. Parents' own accounts of their post-SIDS experience are consistent with these newer theories. Comprehending how parents cope and reconstruct their lives is an important element in providing appropriate psychological support services.

A Qualitative Synthesis of Families' and Students' Hospital-to-School Transition Experiences Following Acquired Brain Injury.

PubMed

Hartman, Laura R; Tibbles, Alana; Paniccia, Alicia; Lindsay, Sally

2015-01-01

Acquired brain injury (ABI) is one of the greatest causes of death and disability among children in Canada. Following ABI, children are required to transition back to school and adapt to the physical, cognitive, behavioral, social, and emotional demands of the school environment. We conducted a qualitative systematic review of students' and parents' experiences of the transition back to school following ABI. We identified 20 articles that met our inclusion criteria. Six themes emerged: (a) lack of ABI-specific education for families and professionals, (b) communication-related factors as a facilitator and/or barrier to transition, (c) emotional focus, (d) peer relationships, (e) supports, and (f) ABI sequelae in the classroom. Students' and families' personal motivations and abilities and the support they receive in their environment affect their experiences of transitioning back to school and the disrupted occupations they face.

A Qualitative Synthesis of Families’ and Students’ Hospital-to-School Transition Experiences Following Acquired Brain Injury

PubMed Central

Hartman, Laura R.; Tibbles, Alana; Paniccia, Alicia; Lindsay, Sally

2015-01-01

Acquired brain injury (ABI) is one of the greatest causes of death and disability among children in Canada. Following ABI, children are required to transition back to school and adapt to the physical, cognitive, behavioral, social, and emotional demands of the school environment. We conducted a qualitative systematic review of students’ and parents’ experiences of the transition back to school following ABI. We identified 20 articles that met our inclusion criteria. Six themes emerged: (a) lack of ABI-specific education for families and professionals, (b) communication-related factors as a facilitator and/or barrier to transition, (c) emotional focus, (d) peer relationships, (e) supports, and (f) ABI sequelae in the classroom. Students’ and families’ personal motivations and abilities and the support they receive in their environment affect their experiences of transitioning back to school and the disrupted occupations they face. PMID:28462322

Life course effects of early parental loss among very old African Americans.

PubMed

Johnson, Colleen L; Barer, Barbara M

2002-03-01

To analyze the life course effects of the early loss of one or both parents on very old Black Americans. Open-ended, semistructured interviews were used with a sample of 109 respondents aged 85 years and older. Correlations identified significant associations, and qualitative data illustrate life course trajectories of selected respondents. Those who lost a parent through death or desertion were less integrated into family and friendship groups in late life, and they had fewer social resources in general. Qualitative data describe three outcomes in the sample: those who grew up with both parents present, those who lost a parent but still reported a contented childhood, and those with disrupted families and negative effects. The respondents' open-ended commentary about their past lives and their current situation enhances understanding of connections between early life events and adaptation in old age.

Risk of vicarious trauma in nursing research: a focused mapping review and synthesis.

PubMed

Taylor, Julie; Bradbury-Jones, Caroline; Breckenridge, Jenna P; Jones, Christine; Herber, Oliver Rudolf

2016-10-01

To provide a snapshot of how vicarious trauma is considered within the published nursing research literature. Vicarious trauma (secondary traumatic stress) has been the focus of attention in nursing practice for many years. The most pertinent areas to invoke vicarious trauma in research have been suggested as abuse/violence and death/dying. What is not known is how researchers account for the risks of vicarious trauma in research. Focused mapping review and synthesis. Empirical studies meeting criteria for abuse/violence or death/dying in relevant Scopus ranked top nursing journals (n = 6) January 2009 to December 2014. Relevant papers were scrutinised for the extent to which researchers discussed the risk of vicarious trauma. Aspects of the studies were mapped systematically to a pre-defined template, allowing patterns and gaps in authors' reporting to be determined. These were synthesised into a coherent profile of current reporting practices and from this, a new conceptualisation seeking to anticipate and address the risk of vicarious trauma was developed. Two thousand five hundred and three papers were published during the review period, of which 104 met the inclusion criteria. Studies were distributed evenly by method (52 qualitative; 51 quantitative; one mixed methods) and by focus (54 abuse/violence; 50 death/dying). The majority of studies (98) were carried out in adult populations. Only two papers reported on vicarious trauma. The conceptualisation of vicarious trauma takes account of both sensitivity of the substantive data collected, and closeness of those involved with the research. This might assist researchers in designing ethical and protective research and foreground the importance of managing risks of vicarious trauma. Vicarious trauma is not well considered in research into clinically important topics. Our proposed framework allows for consideration of these so that precautionary measures can be put in place to minimise harm to staff. © 2016 John Wiley & Sons Ltd.

What Lies behind the Wish to Hasten Death? A Systematic Review and Meta-Ethnography from the Perspective of Patients

PubMed Central

Monforte-Royo, Cristina; Villavicencio-Chávez, Christian; Tomás-Sábado, Joaquin; Mahtani-Chugani, Vinita; Balaguer, Albert

2012-01-01

Background There is a need for an in-depth approach to the meaning of the wish to hasten death (WTHD). This study aims to understand the experience of patients with serious or incurable illness who express such a wish. Methods and Findings Systematic review and meta-ethnography of qualitative studies from the patient's perspective. Studies were identified through six databases (ISI, PubMed, PsycINFO, CINAHL, CUIDEN and the Cochrane Register of Controlled Trials), together with citation searches and consultation with experts. Finally, seven studies reporting the experiences of 155 patients were included. The seven-stage Noblit and Hare approach was applied, using reciprocal translation and line-of-argument synthesis. Six main themes emerged giving meaning to the WTHD: WTHD in response to physical/psychological/spiritual suffering, loss of self, fear of dying, the desire to live but not in this way, WTHD as a way of ending suffering, and WTHD as a kind of control over one's life (‘having an ace up one's sleeve just in case’). An explanatory model was developed which showed the WTHD to be a reactive phenomenon: a response to multidimensional suffering, rather than only one aspect of the despair that may accompany this suffering. According to this model the factors that lead to the emergence of WTHD are total suffering, loss of self and fear, which together produce an overwhelming emotional distress that generates the WTHD as a way out, i.e. to cease living in this way and to put an end to suffering while maintaining some control over the situation. Conclusions The expression of the WTHD in these patients is a response to overwhelming emotional distress and has different meanings, which do not necessarily imply a genuine wish to hasten one's death. These meanings, which have a causal relationship to the phenomenon, should be taken into account when drawing up care plans. PMID:22606338

Diet and physical activity for children's health: a qualitative study of Nepalese mothers' perceptions.

PubMed

Oli, Natalia; Vaidya, Abhinav; Subedi, Madhusudan; Eiben, Gabriele; Krettek, Alexandra

2015-09-08

Non-communicable diseases account for 50% of all deaths in Nepal and 25% result from cardiovascular diseases. Previous studies in Nepal indicate a high burden of behavioural cardiovascular risk factors, suggesting a low level of knowledge, attitude and practice/behaviour regarding cardiovascular health. The behavioural foundation for a healthy lifestyle begins in early childhood, when mothers play a key role in their children's lives. This qualitative study, conducted in a Nepalese peri-urban community, aimed to explore mothers' perception of their children's diet and physical activity. We notated, tape-recorded and transcribed all data collected from six focus group discussions, and used qualitative content analysis for evaluation and interpretation. The study was conducted in the Jhaukhel-Duwakot Health Demographic Surveillance Site in the Bhaktapur district of Nepal. Local health workers helped recruit 61 women with children aged 5-10 years. We distributed participants among six different groups according to educational status. Although participants understood the importance of healthy food, they misunderstood its composition, perceiving it as unappetising and appropriate only for sick people. Furthermore, participants did not prioritise their children's physical activities. Moreover, mothers believed they had limited control over their children's dietary habits and physical activity. Finally, they opined that health educational programmes would help mothers and recommended various intervention strategies to increase knowledge regarding a healthy lifestyle. Our data reveal that mothers of young children in a peri-urban community of Nepal lack adequate and accurate understanding about the impact of a healthy diet and physical activity. Therefore, to prevent future cardiovascular disease and other non-communicable diseases among children, Nepal needs health education programmes to improve mothers' cardiovascular health knowledge, attitude and behaviour. 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.

A qualitative study about the gendered experiences of motherhood and perinatal mortality in mountain villages of Nepal: implications for improving perinatal survival.

PubMed

Paudel, Mohan; Javanparast, Sara; Dasvarma, Gouranga; Newman, Lareen

2018-05-15

We aim to examine the gendered contexts of poor perinatal survival in the remote mountain villages of Nepal. The study setting comprised two remote mountain villages from a mid-western mountain district of Nepal that ranks lowest on the Human Development Index (0.304), and is reported as having the lowest child survival rates in the country. The findings are taken from a larger study of perinatal survival in remote mountain villages of Nepal, conducted through a qualitative methodological approach within a framework of social constructionist and critical theoretical perspectives. Data were collected through in-depth interviews with 42 women and their families, plus a range of healthcare providers (nurses/auxiliary nurses, female health volunteers, support staff, Auxiliary Health Worker and a traditional healer) and other stakeholders from February to June, 2015. Data were analysed with a comprehensive coding process utilising the thematic analysis technique. The social construction of gender is one of the key factors influencing poor perinatal survival in the villages in this study. The key emerging themes from the qualitative data are: (1) Gendered social construct and vulnerability for poor perinatal survival: child marriages, son preference and repeated child bearing; (2) Pregnancy and childbirth in intra-familial dynamics of relationships and power; and (3) Perception of birth as a polluted event: birth in Gotha (cowshed) and giving birth alone. Motherhood among women of a low social position is central to women and their babies experiencing vulnerabilities related to perinatal survival in the mountain villages. Gendered constructions along the continuum from pre-pregnancy to postnatal (girl settlement, a daughter-in-law, ritual pollution about mother and child) create challenges to ensuring perinatal survival in these villages. It is imperative that policies and programmes consider such a context to develop effective working strategies for sustained reduction of future perinatal deaths.

Probability distributions of hydraulic conductivity for the hydrogeologic units of the Death Valley regional ground-water flow system, Nevada and California

USGS Publications Warehouse

Belcher, Wayne R.; Sweetkind, Donald S.; Elliott, Peggy E.

2002-01-01

The use of geologic information such as lithology and rock properties is important to constrain conceptual and numerical hydrogeologic models. This geologic information is difficult to apply explicitly to numerical modeling and analyses because it tends to be qualitative rather than quantitative. This study uses a compilation of hydraulic-conductivity measurements to derive estimates of the probability distributions for several hydrogeologic units within the Death Valley regional ground-water flow system, a geologically and hydrologically complex region underlain by basin-fill sediments, volcanic, intrusive, sedimentary, and metamorphic rocks. Probability distributions of hydraulic conductivity for general rock types have been studied previously; however, this study provides more detailed definition of hydrogeologic units based on lithostratigraphy, lithology, alteration, and fracturing and compares the probability distributions to the aquifer test data. Results suggest that these probability distributions can be used for studies involving, for example, numerical flow modeling, recharge, evapotranspiration, and rainfall runoff. These probability distributions can be used for such studies involving the hydrogeologic units in the region, as well as for similar rock types elsewhere. Within the study area, fracturing appears to have the greatest influence on the hydraulic conductivity of carbonate bedrock hydrogeologic units. Similar to earlier studies, we find that alteration and welding in the Tertiary volcanic rocks greatly influence hydraulic conductivity. As alteration increases, hydraulic conductivity tends to decrease. Increasing degrees of welding appears to increase hydraulic conductivity because welding increases the brittleness of the volcanic rocks, thus increasing the amount of fracturing.

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.

The Shared Experience Help the Bereavement to Flow: A Family Support Group Evaluation.

PubMed

Henoch, Ingela; Berg, Christina; Benkel, Inger

2016-12-01

When a family member dies, a bereavement period is taking place for all family members. The death of a parent during childhood is a highly stressful event. This study evaluates families' experiences of family support groups when a parent has died. Families were participate in groups for children, teenagers, young adults, and parents in seven sessions. The same topic which was discussed in all groups. The support groups were evaluated qualitatively and quantitatively. The participants were satisfied with the groups and experienced that the shared experience facilitated bereavement to proceed. The results indicate that families' experiences is being more open about feelings in their own family. A support group can be one possibility to help the whole family in the bereavement. © The Author(s) 2015.

Companion Animal Death.

PubMed

Reisbig, Allison M J; Hafen, McArthur; Siqueira Drake, Adryanna A; Girard, Destiny; Breunig, Zachary B

2017-06-01

Human-animal relationships are increasingly incorporated into families as a normal part of family life. Despite this, relationships with animals are often viewed as inferior to human relationships. This becomes problematic during times of loss and grief when members of a grieving companion animal owner's support system do not understand the salience of the relationship with the animal. Veterinary and other helping professionals need basic information about the experience of companion animal loss in order to help support and normalize the experiences of grieving companion animal owners. The present study qualitatively describes human-animal relationships and the subsequent loss and coping experienced by owners of beloved companion animals. Comparison with human and other types of loss and factors unique to companion animal loss are discussed, and practical applications for veterinary and other helping professionals are provided.

Knowledge, attitudes and practices on adolescent vaccination among adolescents, parents and teachers in Africa: A systematic review.

PubMed

Abdullahi, Leila H; Kagina, Benjamin M; Cassidy, Tali; Adebayo, Esther F; Wiysonge, Charles S; Hussey, Gregory D

2016-07-25

Vaccines are the most successful and cost-effective public health interventions available to avert vaccine-preventable diseases and deaths. Despite global progress in adolescent health, many adolescents in Africa still get sick and die from vaccine-preventable diseases due to lack of vaccination. Adolescents, parents and teachers are key players in the development and implementation of adolescent vaccination policies. Optimal knowledge, attitudes and practices towards adolescent vaccination among these key players may improve vaccine uptake among adolescents. We conducted a qualitative and quantitative systematic review on knowledge, attitudes and practices of adolescent vaccination among adolescents, parents and teachers in Africa. We searched PubMed, Cochrane Central Register of Controlled Trials, Scopus, Web of Science, WHOLIS, Africa Wide and CINAHL for eligible quantitative and qualitative primary studies with no time limits. We also checked reference lists of included studies for eligible studies and searched grey literature. Two authors independently screened the search outputs, selected studies and extracted data; resolving discrepancies by consensus and discussion. Qualitative data were analysed using thematic analyses where applicable, while analyses from quantitative studies used different methods based on the type of outcomes. We included 18 cross-sectional studies in this review. The included studies were conducted in 10 out of the 54 countries in Africa. The 18 studies focused on a wide range of adolescent vaccines. Thirteen studies evaluated vaccines against Human Papilloma Virus, while each of the remaining 5 studies, evaluated vaccines against rabies, HIV, tetanus toxoid, tuberculosis and adolescent vaccines in general. Among the key players, we found low to moderate levels of knowledge about adolescent vaccination. Positive attitudes and practices towards adolescent vaccination, especially against Human Papilloma Virus were reported. Despite the low knowledge, our results showed high levels of acceptability to adolescent vaccination among adolescents, parents and teachers. It was evident in our review that all key demographics (parents, adolescents and teachers) were receptive towards adolescent vaccines. We propose relevant policy makers in Africa to consider continuous education programs such as those aimed to inform the parents, adolescents and teachers on adolescent vaccination. Copyright © 2016 Elsevier Ltd. All rights reserved.

A patient-initiated voluntary online survey of adverse medical events: the perspective of 696 injured patients and families

PubMed Central

Southwick, Frederick S; Cranley, Nicole M; Hallisy, Julia A

2015-01-01

Background Preventable medical errors continue to be a major cause of death in the USA and throughout the world. Many patients have written about their experiences on websites and in published books. Methods As patients and family members who have experienced medical harm, we have created a nationwide voluntary survey in order to more broadly and systematically capture the perspective of patients and patient families experiencing adverse medical events and have used quantitative and qualitative analysis to summarise the responses of 696 patients and their families. Results Harm was most commonly associated with diagnostic and therapeutic errors, followed by surgical or procedural complications, hospital-associated infections and medication errors, and our quantitative results match those of previous provider-initiated patient surveys. Qualitative analysis of 450 narratives revealed a lack of perceived provider and system accountability, deficient and disrespectful communication and a failure of providers to listen as major themes. The consequences of adverse events included death, post-traumatic stress, financial hardship and permanent disability. These conditions and consequences led to a loss of patients’ trust in both the health system and providers. Patients and family members offered suggestions for preventing future adverse events and emphasised the importance of shared decision-making. Conclusions This large voluntary survey of medical harm highlights the potential efficacy of patient-initiated surveys for providing meaningful feedback and for guiding improvements in patient care. PMID:26092166

Improving Maternal Health in Pakistan: Toward a Deeper Understanding of the Social Determinants of Poor Women’s Access to Maternal Health Services

PubMed Central

Salway, Sarah; Bhatti, Afshan; Shanner, Laura; Zaman, Shakila; Laing, Lory; Ellison, George T. H.

2014-01-01

Evidence suggests national- and community-level interventions are not reaching women living at the economic and social margins of society in Pakistan. We conducted a 10-month qualitative study (May 2010–February 2011) in a village in Punjab, Pakistan. Data were collected using 94 in-depth interviews, 11 focus group discussions, 134 observational sessions, and 5 maternal death case studies. Despite awareness of birth complications and treatment options, poverty and dependence on richer, higher-caste people for cash transfers or loans prevented women from accessing required care. There is a need to end the invisibility of low-caste groups in Pakistani health care policy. Technical improvements in maternal health care services should be supported to counter social and economic marginalization so progress can be made toward Millennium Development Goal 5 in Pakistan. PMID:24354817

'They have to show that they can make it': vitality as a criterion for the prognosis of premature infants.

PubMed

Brinchmann, B S

2000-03-01

In this article, the vitality of premature infants will be described and discussed. Vitality was one of the main factors in a grounded theory study in which the aim was to generate knowledge concerning the ethical decision-making processes with which nurses and physicians are faced in a neonatal unit. Which assessments underlie decisions about whether to start, continue or stop medical treatment of very sick premature babies? A descriptive study design, including 120 hours of field observations and 22 qualitative in-depth interviews with doctors and nurses, was chosen. Strauss and Glaser's comparative method was used to analyse the field observations and interviews. The findings indicate that life-and-death decisions are somewhat ambivalent; experience does not always make them easier. In situations of ambiguity, decisions also seem to be based upon the vitality of the babies concerned.

Improving maternal health in Pakistan: toward a deeper understanding of the social determinants of poor women's access to maternal health services.

PubMed

Mumtaz, Zubia; Salway, Sarah; Bhatti, Afshan; Shanner, Laura; Zaman, Shakila; Laing, Lory; Ellison, George T H

2014-02-01

Evidence suggests national- and community-level interventions are not reaching women living at the economic and social margins of society in Pakistan. We conducted a 10-month qualitative study (May 2010-February 2011) in a village in Punjab, Pakistan. Data were collected using 94 in-depth interviews, 11 focus group discussions, 134 observational sessions, and 5 maternal death case studies. Despite awareness of birth complications and treatment options, poverty and dependence on richer, higher-caste people for cash transfers or loans prevented women from accessing required care. There is a need to end the invisibility of low-caste groups in Pakistani health care policy. Technical improvements in maternal health care services should be supported to counter social and economic marginalization so progress can be made toward Millennium Development Goal 5 in Pakistan.

[Mind-body connection, parapsychological phenomena and spiritual healing. A review].

PubMed

Bonilla, Ernesto

2010-06-01

Evidence regarding the influence of the mind on the body is abundant. Several mind-body healing procedures are currently being used, among them hypnosis, biofeedback, meditation, visualizations, management of emotions and prayer. Since the Big Bang, we are entangled with everything. This interaction would let individuals to communicate with the minds and bodies of others. The field of parapsychological research has provided a lot of information about significant events, including apparitions, communications with the dead, near-death experiences and out of the body experiences. It looks apparently evident, that consciousness can persist in the absence of brain function. According to the model that assumes that it is consciousness and not matter, the base of everything that exists, what survives after death is the "quantum monad" or spirit. It is said that spiritual cures are practiced by discarnate physicians who diagnose and prescribe conventional treatments, but very often they use unknown procedures based on the management of energy fields that are currently being studied by many physicists. Representative examples of the practice of spiritual medicine were the mediums Ze Arigo, George Chapman, Barbara Guerrero (Pachita) and presently the Brazilian medium John of God. Case reports of paranormal phenomena observed and studied by honest and serious scientists are very important for the advancement of parapsychology, because it has not been clearly established which approach, the qualitative or the quantitative, is more useful for the development of this field.

[The household economy: a determinant of maternal death among indigenous women in Chiapas, Mexico].

PubMed

Herrera Torres, María del Carmen; Cruz Burguete, Jorge Luis; Robledo Hernández, Gabriela Patricia; Montoya Gómez, Guillermo

2006-02-01

To assess the determining role of financial situation and gender relations on maternal mortality among Indigenous women in Chiapas, Mexico. A quantitative/qualitative study was performed by means of a survey of 158 families, as well as in-depth interviews of persons linked to cases of maternal death, community leaders from throughout the region, and focal groups composed of traditional birth attendants. Decision-making surrounding women's health within the household is a critical problem because it is entirely in the hands of the husband and his relatives. In cases of high-risk pregnancy or birth, options for seeking care outside the community become limited, so that 48.7% of all obstetric cases are assisted by traditional birth attendants, 45.3% by relatives, and 6% by the mate. The problem is compounded by the high level of marginalization and very low human development index that characterize the region under study, by women's exclusion from the ownership of goods, including land, and by the fact that 97.7% of women only speak indigenous languages. Gender inequities within Indigenous families, together with a household economy that does not cover the basic necessities, are among the factors that keep women from receiving the necessary care during their reproductive processes. Because of the low socioeconomic status these women have, decisions surrounding care during pregnancy, birth, and the puerperium take a large toll on their health and their lives.

U.S. states and territories national tsunami hazard assessment, historic record and sources for waves

NASA Astrophysics Data System (ADS)

Dunbar, P. K.; Weaver, C.

2007-12-01

In 2005, the U.S. National Science and Technology Council (NSTC) released a joint report by the sub-committee on Disaster Reduction and the U.S. Group on Earth Observations titled Tsunami Risk Reduction for the United States: A Framework for Action (Framework). The Framework outlines the President's&pstrategy for reducing the United States tsunami risk. The first specific action called for in the Framework is to "Develop standardized and coordinated tsunami hazard and risk assessments for all coastal regions of the United States and its territories." Since NOAA is the lead agency for providing tsunami forecasts and warnings and NOAA's National Geophysical Data Center (NGDC) catalogs information on global historic tsunamis, NOAA/NGDC was asked to take the lead in conducting the first national tsunami hazard assessment. Earthquakes or earthquake-generated landslides caused more than 85% of the tsunamis in the NGDC tsunami database. Since the United States Geological Survey (USGS) conducts research on earthquake hazards facing all of the United States and its territories, NGDC and USGS partnered together to conduct the first tsunami hazard assessment for the United States and its territories. A complete tsunami hazard and risk assessment consists of a hazard assessment, exposure and vulnerability assessment of buildings and people, and loss assessment. This report is an interim step towards a tsunami risk assessment. The goal of this report is provide a qualitative assessment of the United States tsunami hazard at the national level. Two different methods are used to assess the U.S. tsunami hazard. The first method involves a careful examination of the NGDC historical tsunami database. This resulted in a qualitative national tsunami hazard assessment based on the distribution of runup heights and the frequency of runups. Although tsunami deaths are a measure of risk rather than hazard, the known tsunami deaths found in the NGDC database search were compared with the qualitative assessments based on frequency and amplitude. The second method to assess tsunami hazard involved using the USGS earthquake databases to search for possible earthquake sources near American coastlines to extend the NOAA/NGDC tsunami databases backward in time. The qualitative tsunami hazard assessment based on the results of the NGDC and USGS database searches will be presented.

Neonatal care in the home in northern rural Honduras: a qualitative study of the role of traditional birth attendants.

PubMed

Sacks, Emma; Bailey, Joanne Motiño; Robles, Chayla; Low, Lisa Kane

2013-01-01

Traditional birth attendants (TBAs) have limited ability to reduce maternal mortality, but may be able to have a significant impact on neonatal survival. This qualitative study explores TBAs' (possessive) experience with neonatal care in a rural Honduran community. In 6 semistructured focus groups, TBAs described services they routinely provide to newborns. Using Atlas.ti, Version 6.0. (ATLAS.ti Scientific Software Development GmbH, University of Berlin), transcripts were coded by bilingual researchers and analyzed by thematic content. TBAs demonstrated limited knowledge of newborn physiology, yet were aware of many internationally recommended practices. Despite attempts to follow recommendations, all TBAs expressed difficulty due to resource constraints. TBAs were strong advocates of immediate breast-feeding and skin-to-skin care, but they did not demonstrate knowledge regarding delayed bathing and thermal care. Most TBAs stated that a sick neonate could be identified immediately at birth; thus, infections or other illnesses developed in later days may be missed. TBAs did not believe they could have averted neonatal complications or deaths that had occurred under their care. For most healthy newborns, TBAs are the primary providers until the 2-month vaccine visit at the healthcare clinic. Improved TBA training focused on infection symptomotology, physiology, and thermoregulation for newborns may increase opportunities for improved health and timely referrals to healthcare facilities.

Genetic Test Results and Disclosure to Family Members: Qualitative Interviews of Healthcare Professionals' Perceptions of Ethical and Professional Issues in France.

PubMed

D' Audiffret Van Haecke, Diane; de Montgolfier, Sandrine

2016-06-01

The benefit of disclosing test results to next of kin is to improve prognosis and-in some cases-even prevent death though earlier monitoring or preventive therapies. Research on this subject has explored the question of intra-familial communication from the standpoint of patients and relatives but rarely, from the standpoint of healthcare professionals. The purpose of this study was to interview relevant healthcare professionals in France, where legislation framing the issue was recently passed. A qualitative study consisting of semi-structured interviews was set up to get a clearer picture of the challenges arising from this issue, its consequences in terms of medical care-service practices, and the positions that frontline professionals have taken in response to this new legal framework. The findings from eight interviews with 7 clinical geneticists and 1 genetic counselor highlight very different patterns of practices among care services and among the genetic diseases involved. It is equally crucial to investigate other issues such as the nature of genetic testing and its consequences in terms of disclosing results to kin, the question of the role of genetic counseling in the disclosure process, the question of prescription by non-geneticist clinicians, and practical questions linked to information content, consent and medical follow-up for patients and their relatives.

[Expectations of relatives of critically ill patients regarding medical information. Qualitative research study].

PubMed

Alonso-Ovies, A; Álvarez, J; Velayos, C; García, M M; Luengo, M J

2014-01-01

To determine and analyse the expectations, needs and experiences of relatives of critically ill patients as regards medical information and the level of their understanding. To find keys for improving communication and to draw up best practices in clinical information. Qualitative research study through semi-structured interviews carried out in a polyvalent adult intensive care unit (ICU) in a University Hospital. relatives of patients who were admitted to the ICU and who were discharged alive from the Unit. Ten interviews were performed taking into account diversification variables such as, type of family relationship with patients, patient age, length of ICU stay, origin, and location at the time of the interview. The results of the analysis of 10 interviews focused on: the subjective position of the family in the ICU (the agonizing wait), what the ICU represents for the family (surveillance and monitoring of a situation between life and death), perceived care (complete delegation of care), and medical information (what and how they expect and what and how they receive it), as much in the first information (sincerity, hope, delicacy) as in the successive. There is divergence between what families expect and what they get as regards medical information. To know the expectations of the families will help to provide higher quality care and more humane treatment in the ICU. Copyright © 2014 SECA. Published by Elsevier Espana. All rights reserved.

Patients’ and family members’ views on how clinicians enact and how they should enact incident disclosure: the “100 patient stories” qualitative study

PubMed Central

Allen, Suellen; Britton, Kate; Piper, Donella; Baker, Andrew; Grbich, Carol; Allan, Alfred; Jones, Liz; Tuckett, Anthony; Williams, Allison; Manias, Elizabeth; Gallagher, Thomas H

2011-01-01

Objectives To investigate patients’ and family members’ perceptions and experiences of disclosure of healthcare incidents and to derive principles of effective disclosure. Design Retrospective qualitative study based on 100 semi-structured, in depth interviews with patients and family members. Setting Nationwide multisite survey across Australia. Participants 39 patients and 80 family members who were involved in high severity healthcare incidents (leading to death, permanent disability, or long term harm) and incident disclosure. Recruitment was via national newspapers (43%), health services where the incidents occurred (28%), two internet marketing companies (27%), and consumer organisations (2%). Main outcome measures Participants’ recurrent experiences and concerns expressed in interviews. Results Most patients and family members felt that the health service incident disclosure rarely met their needs and expectations. They expected better preparation for incident disclosure, more shared dialogue about what went wrong, more follow-up support, input into when the time was ripe for closure, and more information about subsequent improvement in process. This analysis provided the basis for the formulation of a set of principles of effective incident disclosure. Conclusions Despite growing prominence of open disclosure, discussion about healthcare incidents still falls short of patient and family member expectations. Healthcare organisations and providers should strengthen their efforts to meet patients’ (and family members’) needs and expectations. PMID:21788260

Understanding the social context of fatal road traffic collisions among young people: a qualitative analysis of narrative text in coroners' records.

PubMed

Pilkington, Paul; Bird, Emma; Gray, Selena; Towner, Elizabeth; Weld, Sarah; McKibben, Mary-Ann

2014-01-24

Deaths and injuries on the road remain a major cause of premature death among young people across the world. Routinely collected data usually focuses on the mechanism of road traffic collisions and basic demographic data of those involved. This study aimed to supplement these routine sources with a thematic analysis of narrative text contained in coroners' records, to explore the wider social context in which collisions occur. Thematic analysis of narrative text from Coroners' records, retrieved from thirty-four fatalities among young people (16-24 year olds) occurring as a result of thirty road traffic collisions in a rural county in the south of England over the period 2005-2010. Six key themes emerged: social driving, driving experience, interest in motor vehicles, driving behaviour, perception of driving ability, and emotional distress. Social driving (defined as a group of related behaviours including: driving as a social event in itself (i.e. without a pre-specified destination); driving to or from a social event; driving with accompanying passengers; driving late at night; driving where alcohol or drugs were a feature of the journey) was identified as a common feature across cases. Analysis of the wider social context in which road traffic collisions occur in young people can provide important information for understanding why collisions happen and developing targeted interventions to prevent them. It can complement routinely collected data, which often focuses on events immediately preceding a collision. Qualitative analysis of narrative text in coroner's records may provide a way of providing this type of information. These findings provide additional support for the case for Graduated Driver Licensing programmes to reduce collisions involving young people, and also suggest that road safety interventions need to take a more community development approach, recognising the importance of social context and focusing on social networks of young people.

Socio-Psychological Factors Driving Adult Vaccination: A Qualitative Study

PubMed Central

Wheelock, Ana; Parand, Anam; Rigole, Bruno; Thomson, Angus; Miraldo, Marisa; Vincent, Charles; Sevdalis, Nick

2014-01-01

Background While immunization is one of the most effective and successful public health interventions, there are still up to 30,000 deaths in major developed economies each year due to vaccine-preventable diseases, almost all in adults. In the UK, despite comparatively high vaccination rates among ≧65 s (73%) and, to a lesser extent, at-risk ≤65 s (52%) in 2013/2014, over 10,000 excess deaths were reported the previous influenza season. Adult tetanus vaccines are not routinely recommended in the UK, but may be overly administered. Social influences and risk-perceptions of diseases and vaccines are known to affect vaccine uptake. We aimed to explore the socio-psychological factors that drive adult vaccination in the UK, specifically influenza and tetanus, and to evaluate whether these factors are comparable between vaccines. Methods 20 in-depth, face-to-face interviews were conducted with members of the UK public who represented a range of socio-demographic characteristics associated with vaccination uptake. We employed qualitative interviewing approaches to reach a comprehensive understanding of the factors influencing adult vaccination decisions. Thematic analysis was used to analyze the data. Results Participants were classified according to their vaccination status as regular, intermittent and non-vaccinators for influenza, and preventative, injury-led, mixed (both preventative and injury-led) and as non-vaccinators for tetanus. We present our finding around five overarching themes: 1) perceived health and health behaviors; 2) knowledge; 3) vaccination influences; 4) disease appraisal; and 5) vaccination appraisal. Conclusion The uptake of influenza and tetanus vaccines was largely driven by participants' risk perception of these diseases. The tetanus vaccine is perceived as safe and sufficiently tested, whereas the changing composition of the influenza vaccine is a cause of uncertainty and distrust. To maximize the public health impact of adult vaccines, policy should be better translated into high vaccination rates through evidence-based implementation approaches. PMID:25490542

Understanding the social context of fatal road traffic collisions among young people: a qualitative analysis of narrative text in coroners’ records

PubMed Central

2014-01-01

Background Deaths and injuries on the road remain a major cause of premature death among young people across the world. Routinely collected data usually focuses on the mechanism of road traffic collisions and basic demographic data of those involved. This study aimed to supplement these routine sources with a thematic analysis of narrative text contained in coroners’ records, to explore the wider social context in which collisions occur. Methods Thematic analysis of narrative text from Coroners’ records, retrieved from thirty-four fatalities among young people (16–24 year olds) occurring as a result of thirty road traffic collisions in a rural county in the south of England over the period 2005–2010. Results Six key themes emerged: social driving, driving experience, interest in motor vehicles, driving behaviour, perception of driving ability, and emotional distress. Social driving (defined as a group of related behaviours including: driving as a social event in itself (i.e. without a pre-specified destination); driving to or from a social event; driving with accompanying passengers; driving late at night; driving where alcohol or drugs were a feature of the journey) was identified as a common feature across cases. Conclusions Analysis of the wider social context in which road traffic collisions occur in young people can provide important information for understanding why collisions happen and developing targeted interventions to prevent them. It can complement routinely collected data, which often focuses on events immediately preceding a collision. Qualitative analysis of narrative text in coroner’s records may provide a way of providing this type of information. These findings provide additional support for the case for Graduated Driver Licensing programmes to reduce collisions involving young people, and also suggest that road safety interventions need to take a more community development approach, recognising the importance of social context and focusing on social networks of young people. PMID:24460955

Newspaper reporting and the emergence of charcoal burning suicide in Taiwan: A mixed methods approach.

PubMed

Chen, Ying-Yeh; Tsai, Chi-Wei; Biddle, Lucy; Niederkrotenthaler, Thomas; Wu, Kevin Chien-Chang; Gunnell, David

2016-03-15

It has been suggested that extensive media reporting of charcoal burning suicide was a key factor in the rapid spread of this novel method in many East Asian countries. But very few empirical studies have explored the relationship between media reporting and the emergence of this new method of suicide. We investigated the changing pattern of media reporting of charcoal burning suicides in Taiwan during 1998-2002 when this method of suicide increased most rapidly, assessing whether the characteristics of media reporting were associated with the changing incidence of suicide using this method. A mixed method approach, combining quantitative and qualitative analysis of newspaper content during 1998-2002 was used. We compared differences in reporting characteristics before and after the rapid increase in charcoal burning suicide. Point-biserial and Pearson correlation coefficients were calculated to quantify the associations between the media item content and changes in suicide rates. During the period when charcoal burning suicide increased rapidly, the number of reports per suicide was considerably higher than during the early stage (0.31 vs. 0.10). Detailed reporting of this new method was associated with a post-reporting increase in suicides using the method. Qualitative analysis of news items revealed that the content of reports of suicide by charcoal burning changed gradually; in the early stages of the epidemic (1999-2000) there was convergence in the terminology used to report charcoal burning deaths, later reports gave detailed descriptions of the setting in which the death occurred (2001) and finally the method was glamourized and widely publicized (2001-2002). Our analysis was restricted to newspaper reports and did not include TV or the Internet. Newspaper reporting was associated with the evolution and establishment of charcoal burning suicide. Working with media and close monitoring of changes in the incidence of suicide using a new method might help prevent a suicide epidemic such as charcoal burning suicide seen in Taiwan. Copyright © 2016 Elsevier B.V. All rights reserved.

The life review experience: Qualitative and quantitative characteristics.

PubMed

Katz, Judith; Saadon-Grosman, Noam; Arzy, Shahar

2017-02-01

The life-review experience (LRE) is a most intriguing mental phenomenon that fascinated humans from time immemorial. In LRE one sees vividly a succession of one's own life-events. While reports of LRE are abundant in the medical, psychological and popular literature, not much is known about LRE's cognitive and psychological basis. Moreover, while LRE is known as part of the phenomenology of near-death experience, its manifestation in the general population and in other circumstances is still to be investigated. In a first step we studied the phenomenology of LRE by means of in-depth qualitative interview of 7 people who underwent full LRE. In a second step we extracted the main characters of LRE, to develop a questionnaire and an LRE-score that best reflects LRE phenomenology. This questionnaire was then run on 264 participants of diverse ages and backgrounds, and the resulted score was further subjected to statistical analyses. Qualitative analysis showed the LRE to manifest several subtypes of characteristics in terms of order, continuity, the covered period, extension to the future, valence, emotions, and perspective taking. Quantitative results in the normal population showed normal distribution of the LRE-score over participants. Re-experiencing one's own life-events, so-called LRE, is a phenomenon with well-defined characteristics, and its subcomponents may be also evident in healthy people. This suggests that a representation of life-events as a continuum exists in the cognitive system, and maybe further expressed in extreme conditions of psychological and physiological stress. Copyright © 2016 Elsevier Inc. All rights reserved.

Communication and Quality of Care on Palliative Care Units: A Qualitative Study.

PubMed

Seccareccia, Dori; Wentlandt, Kirsten; Kevork, Nanor; Workentin, Kevin; Blacker, Susan; Gagliese, Lucia; Grossman, Daphna; Zimmermann, Camilla

2015-09-01

Clinician-patient communication is central in palliative care, but it has not been described qualitatively which specific elements of communication are important for high-quality palliative care, particularly in the inpatient setting. Our aim was to identify elements of communication that are central to quality of care and satisfaction with care on palliative care units (PCUs), as described by inpatients, family caregivers, and health care providers. Qualitative interviews with patients/caregivers and focus groups with staff were conducted on four PCUs. Semi-structured interviews and focus groups elicited thoughts about the characteristics of satisfaction with care and quality of care for PCU inpatients and their family caregivers. Data were analyzed using a grounded theory method with an inductive, constant comparison approach; themes were coded to saturation. There were 46 interviews and eight focus groups. Communication was the most prevalent theme regarding satisfaction and quality of care, with five subthemes describing elements important to patients, caregivers, and staff. These included: 1) building rapport with patients and families to build trust and kinship; 2) addressing expectations and explaining goals of care; 3) keeping patients and families informed about the patient's condition; 4) listening actively to validate patients' concerns and individual needs; and 5) providing a safe space for conversations about death and dying. Patients, family caregivers, and health care providers affirmed that communication is a central element of quality of care and family satisfaction on PCUs. The five subthemes identified may serve as a structure for education and for quality improvement tools in palliative care inpatient settings.

Sibling Supporters' Experiences of Giving Support to Siblings Who Have a Brother or a Sister With Cancer.

PubMed

Nolbris, Margaretha Jenholt; Nilsson, Stefan

Siblings of a child with a life-threatening disease, such as cancer, have a right to measures that promote their health and welfare. Siblings may find it hard to understand what is happening to the sick child with cancer and why he or she reacts as he or she does. The aim of the study was to explore sibling supporters' thoughts about the experiences they had in providing support for siblings with a brother or a sister with a life-threatening disease such as cancer. All the 12 sibling supporters currently working in Sweden participated in a qualitative, descriptive study from which 5 categories emerged, showing that the sibling supporters supported siblings from diagnosis until possible death. They enabled siblings who were in the same situation to meet each other and arranged activities suited to their ages, as well as offering an encouraging environment. To help the siblings, the sibling supporters found it necessary to interact with both the parents and the ward staff. The sibling supporters felt that their support was important and necessary in helping siblings promote their own health both when the sick child was alive and also after his or her death. The experience of the sibling supporters was that they listened to the siblings' stories and met them when they were in their crisis. The study confirms that sibling supporters should be a part of the health care team that treat and support the family when a child has cancer.

Early Interventions Following the Death of a Parent: Protocol of a Mixed Methods Systematic Review.

PubMed

Pereira, Mariana; Johnsen, Iren; Hauken, May Aa; Kristensen, Pål; Dyregrov, Atle

2017-06-29

Previous meta-analyses examined the effectiveness of interventions for bereaved children showing small to moderate effect sizes. However, no mixed methods systematic review was conducted on bereavement interventions following the loss of a parent focusing on the time since death in regard to the prevention of grief complications. The overall purpose of the review is to provide a rigorous synthesis of early intervention after parental death in childhood. Specifically, the aims are twofold: (1) to determine the rationales, contents, timeframes, and outcomes of early bereavement care interventions for children and/or their parents and (2) to assess the quality of current early intervention studies. Quantitative, qualitative, and mixed methods intervention studies that start intervention with parentally bereaved children (and/or their parents) up to 6 months postloss will be included in the review. The search strategy was based on the Population, Interventions, Comparator, Outcomes, and Study Designs (PICOS) approach, and it was devised together with a university librarian. The literature searches will be carried out in the Medical Literature Analysis and Retrieval System Online (MEDLINE), PsycINFO, Excerpta Medica Database (EMBASE), and Cumulative Index to Nursing and Allied Health Literature (CINAHL). The Mixed Methods Appraisal Tool will be used to appraise the quality of eligible studies. All data will be narratively synthetized following the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews. The systematic review is ongoing and the data search has started. The review is expected to be completed by the end of 2017. Findings will be submitted to leading journals for publication. In accordance with the current diagnostic criteria for prolonged grief as well as the users' perspectives literature, this systematic review outlines a possible sensitive period for early intervention following the death of a parent. The hereby presented protocol ensures the groundwork and transparency for the process of conducting the systematic review. International Prospective Register of Systematic Reviews (PROSPERO) CRD42017064077; http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42017064077 (Archived by WebCite at http://www.webcitation.org/6rMq6F0fv). ©Mariana Pereira, Iren Johnsen, May Aa Hauken, Pål Kristensen, Atle Dyregrov. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 29.06.2017.

Patient and Health Care Professional Decision-Making to Commence and Withdraw from Renal Dialysis: A Systematic Review of Qualitative Research

PubMed Central

Flemming, Kate; Murtagh, Fliss E.M.; Johnson, Miriam J.

2015-01-01

Background and objective To ensure that decisions to start and stop dialysis in ESRD are shared, the factors that affect patients and health care professionals in making such decisions must be understood. This systematic review sought to explore how and why different factors mediate the choices about dialysis treatment. Design, setting, participants, & measurements MEDLINE, Embase, CINAHL, and PsychINFO were searched for qualitative studies of factors that affect patients’ or health care professionals’ decisions to commence or withdraw from dialysis. A thematic synthesis was conducted. Results Of 494 articles screened, 12 studies (conducted from 1985 to 2014) were included. These involved 206 patients (most receiving hemodialysis) and 64 health care professionals (age ranges: patients, 26–93 years; professionals, 26–61 years). For commencing dialysis, patients based their choice on "gut instinct," as well as deliberating over the effect of treatment on quality of life and survival. How individuals coped with decision-making was influential: Some tried to take control of the problem of progressive renal failure, whereas others focused on controlling their emotions. Health care professionals weighed biomedical factors and were led by an instinct to prolong life. Both patients and health care professionals described feeling powerless. With regard to dialysis withdrawal, only after prolonged periods on dialysis were the realities of life on dialysis fully appreciated and past choices questioned. By this stage, however, patients were physically dependent on treatment. As was seen with commencing dialysis, individuals coped with treatment withdrawal in a problem- or emotion-controlling way. Families struggled to differentiate between choosing versus allowing death. Health care teams avoided and queried discussions regarding dialysis withdrawal. Patients, however, missed the dialogue they experienced during predialysis education. Conclusions Decision-making in ESRD is complex and dynamic and evolves over time and toward death. The factors at work are multifaceted and operate differently for patients and health professionals. More training and research on open communication and shared decision-making are needed. PMID:25943310

Improving opioid safety practices in primary care: protocol for the development and evaluation of a multifaceted, theory-informed pilot intervention for healthcare providers.

PubMed

Leece, Pamela; Buchman, Daniel Z; Hamilton, Michael; Timmings, Caitlyn; Shantharam, Yalnee; Moore, Julia; Furlan, Andrea D

2017-04-26

In North America, drug overdose deaths are reaching unprecedented levels, largely driven by increasing prescription opioid-related deaths. Despite the development of several opioid guidelines, prescribing behaviours still contribute to poor patient outcomes and societal harm. Factors at the provider and system level may hinder or facilitate the application of evidence-based guidelines; interventions designed to address such factors are needed. Using implementation science and behaviour change theory, we have planned the development and evaluation of a comprehensive Opioid Self-Assessment Package, designed to increase adherence to the Canadian Opioid Guideline among family physicians. The intervention uses practical educational and self-assessment tools to provide prescribers with feedback on their current knowledge and practices, and resources to improve their practice. The evaluation approach uses a pretest and post-test design and includes both quantitative and qualitative methods at baseline and 6 months. We will recruit a purposive sample of approximately 10 family physicians in Ontario from diverse practice settings, who currently treat patients with long-term opioid therapy for chronic pain. Quantitative data will be analysed using basic descriptive statistics, and qualitative data will be analysed using the Framework Method. The University Health Network Research Ethics Board approved this study. Dissemination plan includes publications, conference presentations and brief stakeholder reports. This evidence-informed, theory-driven intervention has implications for national application of opioid quality improvement tools in primary care settings. We are engaging experts and end users in advisory and stakeholder roles throughout our project to increase its national relevance, application and sustainability. The performance measures could be used as the basis for health system quality improvement indicators to monitor opioid prescribing. Additionally, the methods and approach used in this study could be adapted for other opioid guidelines, or applied to other areas of preventive healthcare and clinical guideline implementation processes. © 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.