Personality traits and chronic disease: implications for adult personality development.

PubMed

Sutin, Angelina R; Zonderman, Alan B; Ferrucci, Luigi; Terracciano, Antonio

2013-11-01

Personality traits have been associated with chronic disease. Less is known about the longitudinal relation between personality and disease and whether chronic disease is associated with changes in personality. Method. Participants from the Baltimore Longitudinal Study of Aging (N = 2,008) completed the Revised NEO Personality Inventory and a standard medical interview at regularly scheduled visits; the Charlson Comorbidity Index, a weighted sum of 19 serious diseases, was derived from this interview. Using data from 6,685 visits, we tested whether personality increased risk of disease and whether disease was associated with personality change. Measured concurrently, neuroticism and conscientiousness were associated with greater disease burden. The impulsiveness facet of neuroticism was the strongest predictor of developing disease across the follow-up period: For every standard deviation increase in impulsiveness, there was a 26% increased risk of developing disease and a 36% increased risk of getting more ill. Personality traits changed only modestly with disease: As participants developed chronic illnesses, they became more conservative (decreased openness). Discussion. This research indicates that personality traits confer risk for disease, in part, through health-risk behaviors. These traits, however, were relatively resistant to the effect of serious disease.

Service use and costs for persons experiencing chronic homelessness in Philadelphia: a population-based study.

PubMed

Poulin, Stephen R; Maguire, Marcella; Metraux, Stephen; Culhane, Dennis P

2010-11-01

This study is the first to examine the distribution of service utilization and costs with a population-based sample that experienced chronic homelessness in sheltered and unsheltered locations in a large U.S. city. This study used shelter and street outreach records from a large U.S. city to identify 2,703 persons who met federal criteria for chronic homelessness during a three-year period. Identifiers for these persons were matched to administrative records for psychiatric care, substance abuse treatment, and incarceration. Twenty percent of the persons who incurred the highest costs for services accounted for 60% of the total service costs of approximately $20 million a year (or approximately $12 million). Most of the costs for this quintile were for psychiatric care and jail stays. Eighty-one percent of the persons in the highest quintile had a diagnosis of a serious mental illness, and 83% of the persons in the lowest quintile had a history of substance abuse treatment without a diagnosis of a serious mental illness. Supportive housing models for people with serious mental illness who experience chronic homelessness may be associated with substantial cost offsets, because the use of acute care services diminishes in an environment of housing stability and access to ongoing support services. However, because persons with substance use issues and no recent history of mental health treatment used relatively fewer and less costly services, cost neutrality for these persons may require less service-intensive programs and smaller subsidies.

Chronically Ill Children: A Psychologically and Emotionally Deviant Population?

ERIC Educational Resources Information Center

Tavormina, J. B.; And Others

To investigate vulnerability to psychological and emotional stress among chronically ill children, a battery of personality tests was selectively administered to 144 children (5- to 19-years-old) afflicted with one of the following conditions: diabetes, asthma, cystic fibrosis, or hearing impairment. Analyses centered on comparisons of norms…

A Comparison of Somatic Compliants among Depressed and Non-Depressed Older Persons.

ERIC Educational Resources Information Center

Waxman, Howard; And Others

1985-01-01

Examined the relationship among somatic complaints, chronic medical illness, and depression in 127 community elderly. Depression and chronic medical illness were significant contributors to somatic complaining both alone and in interaction. Demographic variables and social supports were largely unrelated to depression, somatic complaints, or…

Weight reduction among people with severe and persistent mental illness after health behavior counseling and monitoring.

PubMed

Katekaru, Matthew; Minn, Carol E; Pobutsky, Ann M

2015-04-01

The high prevalence of obesity and associated chronic conditions in persons with severe and persistent mental illness has contributed to a mortality rate that is nearly two times higher than the overall population. In 2008, the Central O'ahu Community Mental Health Center of the Hawai'i State Department of Health, Adult Mental Health Division began an unfunded, health counseling intervention pilot project to address such concerns for the health of persons with severe and persistent mental illness. This article reviews the results of this intervention. Forty-seven persons with schizophrenia or related disorders were included in the intervention which involved health counseling and monitoring of weight as a risk factor for chronic disease. After five years of counseling and monitoring, medical chart reviews were conducted for each person for data on weight change. Analysis showed weight loss and improvements in body mass index. The results of this project show potential for long-term counseling and monitoring as an intervention for obesity in persons with severe and persistent mental illness.

Perceptions of chronically ill and healthy consumers about electronic personal health records: a comparative empirical investigation.

PubMed

Cocosila, Mihail; Archer, Norm

2014-07-23

To develop a model of consumer perceptions of electronic personal health records (PHRs) and validate it in a comparative study between consumers who report having a chronic illness and those who report being well. A model of PHR use motivators and barriers was built and tested through a national survey across Canada. Data were collected from 800 individuals, 18 years or older. Half reported having a chronic illness or disability and half reported being well. Analyses were performed with structural equation modelling techniques. A total of 389 answers from chronically ill and 383 from well participants were collected. Perceived usefulness was the key explanation of the intention to use PHRs for both ill and well people (total effect of 0.601 and 0.565, respectively) followed by security, privacy and trust in PHRs (total effect of 0.377 and 0.479, respectively). Conversely, computer anxiety was perceived as a significant barrier (total effect of -0.327 for ill individuals and -0.212 for well individuals). The model proposed was appropriate in explaining key consumer positive and negative perceptions on electronic PHR use. We found little difference in perceptions of electronic PHRs between chronically ill and well individuals, although self-reporting their health status might have influenced the results. To increase the adoption rate of electronic PHRs among both chronically ill and well consumers it is necessary to reinforce consumer perceptions of the usefulness of and trust in these eHealth technologies while mitigating their anxieties about computer use in general. 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.

Newly identified psychiatric illness in one general practice: 12-month outcome and the influence of patients' personality.

PubMed Central

Wright, A F; Anderson, A J

1995-01-01

BACKGROUND. Relatively little is known about the natural history and outcome of psychological problems in patients who present to general practitioners. Only a small proportion of such patients are seen by specialists. Clinical experience suggests that patient personality is one of the factors influencing outcome in patients diagnosed as having psychiatric illness. AIM. This study set out to examine prospectively the progress and 12-month outcome of patients with newly identified psychiatric illness, and the association of patients' personality with outcome. METHOD. One hundred and seventy one patients with clinically significant psychiatric illness attending one practice in a Scottish new town were followed up prospectively (96 presented with psychological symptoms and 75 with somatic symptoms), and were compared with a group of 127 patients with chronic physical illness. Patients were assessed in terms of psychiatric state, social problems and personality using both computer-based and pencil and paper tests in addition to clinical assessments at each consultation during the follow-up year and structured interview one year after recruitment. RESULTS. Most of the improvement in psychiatric state scores on the 28-item general health questionnaire occurred in the first six months of the illness. Of the 171 patients with psychiatric illness 34% improved quickly and remained well, 54% had an intermittent course but had improved at 12-month follow up while 12% pursued a chronic course without improvement. The mean number of consultations in the follow-up year was 8.4 for patients presenting with psychological symptoms, 7.2 for those presenting with somatic symptoms and 6.6 for patients with chronic physical illness. The Eysenck N score proved a strong predictor of the outcome of new psychiatric illness. CONCLUSION. Only one in three patients with newly identified psychiatric illness improved quickly and and remained well, reflecting the importance of continuing care of patients with psychological problems. This study has confirmed the feasibility of simple personality testing in everyday practice and shown a link between Eysenck N score and the outcome of new psychiatric illness. The predictive value of the Eysenck N score in general practice requires further research. PMID:7702888

Providing Effective Early Intervention Vocational Rehabilitation at the Community Level

ERIC Educational Resources Information Center

Allaire, Saralynn J.; Niu, Jingbo; Zhu, Yanyan; Brett, Belle

2011-01-01

The purpose of this study was to evaluate the translation of positive research findings about a job retention intervention for persons with chronic illnesses to rehabilitation practice. A program to provide the intervention was developed and marketed in the community. Fifty-seven consumers with chronic illnesses received the intervention provided…

Chronic illness and Hmong shamans.

PubMed

Helsel, Deborah; Mochel, Marilyn; Bauer, Robert

2005-04-01

Among the challenges health care personnel in California's central valley face has been finding ways to help Hmong Americans manage chronic illness. Interviews were conducted with 11 Hmong shamans diagnosed with diabetes or hypertension and were qualitatively analyzed to ascertain respondents' understanding and management of their illnesses. Hmong shamans are influential individuals within their communities and are often the resource persons to whom patients turn for information on health. Understanding the shamans' perspective on chronic illness was seen as a gateway to understanding how the broader Hmong American community perceived these conditions. The concept of chronic illness was not well understood, resulting in sporadic medication and dietary regimens, limited awareness of potential complications, and a persistent impression that these illnesses could be cured rather than managed. Suggestions for patient educators include family and community involvement in care regimens and the use of descriptive terminology to identify the disease.

Patient activation in primary healthcare: a comparison between healthier individuals and those with a chronic illness.

PubMed

Wong, Sabrina T; Peterson, Sandra; Black, Charlyn

2011-05-01

Current policy directions place increasing expectations on patients to actively engage in their care, especially in chronic disease management. We examined relationships between patient activation and multiple dimensions of primary healthcare (PHC), including access, utilization, responsiveness, interpersonal communication, and satisfaction for patients with and without chronic illness. Cross-sectional, random digit dial survey conducted in British Columbia (BC), Canada. Stratified sample of adults (n=504), aged 19 to 90 years, who had visited their regular provider within the past 24 months. All data were weighted to represent residents living in BC. Patient activation and PHC experiences include accessibility, continuity, whole-person care, interpersonal communication, responsiveness, chronic disease management, and satisfaction. The multivariate models provide evidence that both quantity of time and quality of interactions with one's regular provider are associated with higher patient activation. Those with no chronic illness had higher activation scores when they spent more time talking with their regular provider, experienced less hurried communication, or if their test results were explained. The more time people with chronic illness are able to spend with their physician, the more activated they were. Chronic illness respondents also had higher activation scores if they reported higher whole-person care or if they were more satisfied. Positive interactions between the patient and the provider can influence the patient's abilities to engage in and be confident in maintaining/improving his/her health. Supporting patients in becoming actively engaged, in ways that work for them, is essential to providing high quality care, especially among those with a chronic condition.

Illness perception, coping and adherence to treatment among patients with chronic kidney disease.

PubMed

Vélez-Vélez, Esperanza; Bosch, Ricardo J

2016-04-01

To analyse the predictive value of illness representations on treatment adherence and coping strategies in a group of patients on haemodialysis. Understanding the cognitive and emotional factors that influence adherence behaviour and coping strategies and determining their relationship to sociodemographic factors remain a challenge; meeting this challenge would encourage comprehensive patient care, thereby improving their quality of life Cross-sectional study with predictive means in a sample of 135 patients on haemodialysis. Data collection occurred from September 2010-January 2012 and tools included the following: sociodemographic data, Illness Perception Questionnaire-Revised, the Cuestionario de Afrontamiento del Estrés and the Morisky-Green test to study adherence to treatment. Being a woman, having a greater knowledge of the disease and having a poorer sense of personal control affected adherence to treatment on controlling for each factor. 'Identity', 'personal control' and 'adherence' were associated with a proactive coping strategy, whereas 'evolution' and 'gender' were related independently to avoidance coping strategies; those who believed that their illness had a chronic course were more likely to cope by avoiding the problem and this tendency was stronger among women. This study provides evidence supporting the role of gender, knowledge about the disease and sense of personal control in adherence to therapeutic regimens of patients in chronic haemodialysis. The identification and characterization of patients' perception of chronic illness may represent a useful framework to influence disease outcomes such as adherence. © 2015 John Wiley & Sons Ltd.

The use of information and communication technology to meet chronically ill patients' needs when living at home.

PubMed

Skär, Lisa; Söderberg, Siv

2011-01-01

The aim of the study was to describe influences, benefits, and limitations in using information and communication technology to meet chronically ill patients' needs when living at home. The study is a descriptive, exploratory designed pilot study and the intervention was performed using an electronic communication program enabling communication between ill persons and the district nurse in real time by web cam pictures and sound. The participant used the programme once or twice a week from February to August 2008. Data were collected by means of repeated interviews and logbook notes, and were subjected to qualitative content analysis. The results showed that all participants appreciated being able to communicate regardless of time and place and their experiences of using information and communication technology revealed that it created feelings of safety and security. The information and communication technology became a tool in their communication and improved nursing care among seriously chronically ill persons living at home.

The Role of Personal Health Record Systems in Chronic Disease Management.

PubMed

Prashad, Reshma

2017-01-01

Chronic illnesses account for the largest portion of healthcare spending in Canada; they are the leading cause of premature death. As a result, healthcare organizations are focused on improving both health and financial outcomes. Addressing chronic illnesses involves more frequent and impactful interactions with both current patients and those at risk of developing a chronic condition. This transformation requires that healthcare organizations shift from a system based solely on in-person interactions to one that leverages digital solutions that support interactions regardless of the patients' location. Personal health record systems (PHRS) can facilitate patients' access to their health data at any time of the day, anywhere in the world. PHRS also offers a myriad of features to help providers' engage, educate and empower patients to make proactive and preventive care a reality. Discussed in this paper are the ways in which PHRS can support the optimal management of chronic conditions and the current barriers to widespread adoption.

Depression and anxiety in patients on chronic hemodialysis in University Clinical Hospital Mostar.

PubMed

Klarić, Miro; Letica, Ivona; Petrov, Bozo; Tomić, Monika; Klarić, Branka; Letica, Ludvig; Francisković, Tanja

2009-12-01

Depression and anxiety are prevailing mental problem in patients on chronic hemodialysis and they have great influence on outcome of illness. Additionally, these disorders are rarely identified in that population of patients and they are insufficiently treated. The aim of this study was to assess the prevalence of depression and anxiety in patients on chronic hemodialysis in University Clinical Hospital Mostar and to examine the correlation between the demographic variables and the time spent on dialysis with depression and anxiety levels. The experimental group consisted of 56 patients on chronic hemodialysis in Mostar Clinical Hospital. The control group 1 consisted of 53 patients diagnosed with a chronic illness and treated for at least a year, while the control group 2 consisted of 51 persons who were not diagnosed with any chronic somatic or mental illness. Demographic data were collected using the constructed questionnaire. The Beck Depression Inventory-BDI was used to determine depression, while the Spielberger State-Trait Anxiety Inventory-STAI was used to determine anxiety. We recorded significantly higher prevalence of depression in patients on chronic dialysis (51.8%) than in patients with a chronic illness (41.5%) and persons without chronic illnesses (9.8%; p < 0.001). Trait anxiety level was significantly higher in hemodialysed patients compared to the other two groups (p = 0.006) but there were no significant differences in state anxiety level. The study has not shown any significant difference in the prevalence of depression and anxiety level regarding the differences in sex, gender and education level, apart from a higher level of state anxiety in patients with a lower education level (p = 0.032). These results indicate that patients on hemodialysis have a significantly higher level of depression and a higher level of trait anxiety compared to patients with chronic illnesses and especially compared to general population.

A qualitative study examining health literacy and chronic illness self-management in Hispanic and non-Hispanic older adults

PubMed Central

Jacobs, Robin J; Ownby, Raymond L; Acevedo, Amarilis; Waldrop-Valverde, Drenna

2017-01-01

Purpose Chronic illness and low levels of health literacy affect health outcomes for many individuals, particularly older adults and racial/ethnic minorities. This study sought to understand the knowledge, strengths, and areas of need regarding self-management of chronic illness in order to lay the groundwork for content development of an intervention to increase health literacy and maximize patient engagement in chronic disease self-care. Patients and methods In-depth, qualitative interviews were conducted in Spanish and English with 25 older adults with various chronic illnesses. Topics included knowledge and understanding of chronic conditions, medications, and disease self-management skills. Qualitative data were coded by searching text and conducting cross-case analysis. An inductive analysis was then employed to allow for the patterns and themes to emerge. Results Emerged themes included 1) social support, 2) coping strategies, 3) spirituality, 4) chronic disease health literacy, 5) anger, and 6) depression. While participants had a general overall knowledge of chronic illness, they had deficits in knowledge regarding their own illnesses and medications. Conclusion Chronic illness self-management is a complex and dynamic behavioral process. This study identified themes that leverage patient motivation to engage in self-care in a personalized manner. This information will guide the development of an intervention to promote health literacy and optimal disease self-management. PMID:28461754

When work and satisfaction with life do not go hand in hand: health barriers and personal resources in the participation of people with chronic physical disabilities.

PubMed

van Campen, Cretien; Cardol, Mieke

2009-07-01

People with chronic physical disabilities participate less in both paid and voluntary work and are less satisfied with their lives than people without health problems. Governments and scientists have suggested that participation in employment is the main road to well-being. We analysed national survey data on the participation in work and satisfaction with life, comparing people with a chronic illness and a physical disability (n=603) to people with a chronic illness but without a physical disability (n=1199) and the general population (n=6128) in the Netherlands. The results show that the relationship between happiness and work is different for people with a chronic illness and a physical disability, as compared to the other two populations. Fewer people with a chronic illness and disability were categorized as 'satisfied people with work' (i.e. participating in work and satisfied with their life), while most people belonged to a group of 'satisfied people without work' and, surprisingly, not to the expected group of 'dissatisfied people without work'. In order to explain this exceptional distribution we modelled satisfied participation in work as an outcome of a balance between personal resources and barriers. By means of discriminant regression analysis, we identified the severity of motor disability as the main barrier, and education level and age, as the main resource factors that distinguish between 'satisfied people with work' and others among the group of people with a chronic illness and a physical disability.

A Metasynthesis of Factors Affecting Self-Management of Chronic Illness

PubMed Central

SCHULMAN-GREEN, Dena; JASER, Sarah S.; PARK, Chorong; WHITTEMORE, Robin

2015-01-01

Aim To identify factors that may serve as facilitators and barriers to self-management described by adults living with chronic illness by conducting a qualitative metasynthesis. Background Self-management is an individuals’ active management of a chronic illness in collaboration with their family members and clinicians. Design Qualitative metasynthesis. Data Sources We analyzed studies (N=53) published between January 2000–May 2013 that described factors affecting self-management in chronic illness as reported by adults aged over 18 years with chronic illness. Review Methods Sandelowsi and Barroso approach to qualitative metasynthesis: literature search; quality appraisal; analysis; and synthesis of findings. Results Collectively, article authors reported on sixteen chronic illnesses, most commonly diabetes (N=28) and cardiovascular disease (N=20). Participants included men and women (mean age=57, range 18–94) from twenty countries representing diverse races and ethnicities. We identified five categories of factors affecting self-management: Personal/Lifestyle Characteristics; Health Status; Resources; Environmental Characteristics; and Health Care System. Factors may interact to affect self-management and may exist on a continuum of positive (facilitator) to negative (barrier). Conclusion Understanding factors that influence self-management may improve assessment of self-management among adults with chronic illness and may inform interventions tailored to meet individuals’ needs and improve health outcomes. PMID:26781649

The Impact of Family Behaviors and Communication Patterns on Chronic Illness Outcomes: A Systematic Review

PubMed Central

Rosland, Ann-Marie; Heisler, Michele; Piette, John D.

2013-01-01

In general, social support from family members affects chronic illness outcomes, but evidence on which specific family behaviors are most important to adult patient outcomes has not been summarized. We systematically reviewed studies examining the effect of specific family member behaviors and communication patterns on adult chronic illness self-management and clinical outcomes. Thirty studies meeting inclusion criteria were identified, representing 22 participant cohorts, and including adults with arthritis, chronic cardiovascular disease, diabetes, and/or end stage renal disease. Family emphasis on self-reliance and personal achievement, family cohesion, and attentive responses to symptoms were associated with better patient outcomes. Critical, overprotective, controlling, and distracting family responses to illness management were associated with negative patient outcomes. Study limitations included cross-sectional designs (11 cohorts), however results from longitudinal studies were similar. Findings suggest that future interventions aiming to improve chronic illness outcomes should emphasize increased family use of attentive coping techniques and family support for the patient’s autonomous motivation. PMID:21691845

Monitoring physical functioning as the sixth vital sign: evaluating patient and practice engagement in chronic illness care in a primary care setting--a quasi-experimental design

PubMed Central

2012-01-01

Background In Canada, one in three adults or almost 9 million people report having a chronic condition. Over two thirds of total deaths result from cardiovascular disease, diabetes, cancer and respiratory illness and 77% of persons ≥65 years have at least one chronic condition. Persons with chronic disease are at risk for functional decline; as a result, there is an increased awareness of the significance of functional status as an important health outcome. The purpose of this study was to determine whether patients who receive a multi-component rehabilitation intervention, including online monitoring of function with feedback and self-management workshops, showed less functional decline than case matched controls who did not receive this intervention. In addition, we wanted to determine whether capacity building initiatives within the Family Health Team promote a collaborative approach to Chronic Disease Management. Methods A population-based multi-component rehabilitation intervention delivered to persons with chronic illnesses (≥ 44 yrs) (n = 60) was compared to a group of age and sex matched controls (n = 60) with chronic illnesses receiving usual care within a primary healthcare setting. The population-based intervention consisted of four main components: (1) function-based individual assessment and action planning, (2) rehabilitation self-management workshops, (3) on-line self-assessment of function and (4) organizational capacity building. T-tests and chi-square tests were used for continuous and categorical variables respectively in baseline comparison between groups. Results Two MANOVA showed significant between group differences in patient reported physical functioning (Λ = 0.88, F = (2.86) = 5.97. p = 0.004) and for the physical performance measures collectively as the dependent variable (Λ = 0.80, F = (6.93) = 3.68. p = 0.0025). There were no within group differences for the capacity measures. Conclusion It is feasible to monitor physical functioning as a health outcome for persons with chronic illness in primary care. The timeline for this study was not sufficient to show an increase in the capacity within the team; however there were some differences in patient outcomes. The short timeline was likely not sufficient to build the capacity required to support this approach. Trial registration NCT00859638 PMID:22471378

The Trade-Offs of Developing a Case Management Model for Chronically Mentally Ill People.

ERIC Educational Resources Information Center

Belcher, John R.

1993-01-01

Addresses role of case management in care of chronically mentally ill persons. Notes that case management can be effective if designed so that services match client needs and service costs are measured accurately. Contends that profit-maximizing nature of U.S. health care system makes some form of capitation likely in design of case management…

The Effects of a Leisure Education Program upon Persons with Chronic Mental Illnesses Who Reside in Group Homes

ERIC Educational Resources Information Center

Mitchell, Lynda Leftridge

1998-01-01

The purpose of the research study was to investigate the leisure behavior, social avoidance and distress, social self-efficacy, life satisfaction, global function, and negative symptoms of 26 individuals with chronic mental illnesses who reside in group homes. The study used a treatment group and a control group design to evaluate the…

Been There, Done That: The Experience of Acting as a Young Adult Mentor to Adolescents Living With Chronic Illness.

PubMed

Ahola Kohut, Sara; Stinson, Jennifer; Forgeron, Paula; Luca, Stephanie; Harris, Lauren

2017-10-01

To explore the perceived benefits and challenges of acting as a young adult peer mentor to adolescents with chronic illness. A qualitative descriptive study, using interviews and a focus group, explored the perceptions of young adult peer mentors following participation in the iPeer2Peer program, a Skype-based peer-mentorship program for adolescents with chronic illness. Interviews and focus group data were transcribed and analyzed using inductive content analysis. Ten peer mentors (20.00 ± 1.49 years old, range 17-22 years; diagnosed with chronic pain [n = 4] or juvenile idiopathic arthritis [n = 6]) who mentored four mentees (±2.55 mentees, range = 1-10 mentees) participated. Four main categories were identified: social connection, personal growth, mentor role in mentee growth, and logistics of mentorship. Acting as a peer mentor online is a feasible and rewarding experience that supports the mentor's own illness self-management, social connection, and personal growth. © The Author 2017. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Older Families and Chronic Disabling Illness: Predicting Better Adaptation.

ERIC Educational Resources Information Center

Young, Rosalie F.

Although illness is often linked to low morale among the elderly, most persons cope with and adjust to illness. A hypothesized model of favorable family response to illness suggests the importance of resources as mediators to avoid crisis. To test this model, 53 older patients with lung disease and their spouses were interviewed about individual…

Parent Preferences for Shared Decision-making in Acute Versus Chronic Illness.

PubMed

Tom, Dina M; Aquino, Christian; Arredondo, Anthony R; Foster, Byron A

2017-10-01

The goal of this study was to examine preferences for shared decision-making (SDM) in parents of acutely ill versus chronically ill children in the inpatient setting. Additionally, we explored the effect of parental perception of illness severity and uncertainty in illness on decision-making preference. In this cross-sectional study, we surveyed parents of children admitted to pediatric inpatient units at an academic, tertiary-care hospital. Surveys were administered in person and used validated tools to assess SDM preferences and uncertainty in illness. Descriptive statistics evaluated associations stratified by acute versus chronic illness, and multivariable analyses were performed. Of the 200 parents who participated, the majority were women (78%), Hispanic (81.5%), English speaking (73%), between 30 and 39 years old (37.5%), and had an education achievement of less than a college degree (77%). The mean age of hospitalized children was 8.1 years, and half reported a chronic illness. Most parents preferred an active (43%) or collaborative (40%) role in SDM. There was no association with SDM preference by demographics, number of previous hospitalizations, perception of illness severity, or uncertainty. However, parents of chronically ill children significantly preferred a passive role in SDM when they perceived a high level of uncertainty in illness. Most parents of hospitalized children prefer to take an active or collaborative role in SDM. However, parents of chronically ill children who perceive high levels of uncertainty surrounding their children's illness prefer a passive role, thus illustrating the complexity in decision-making among this parent population. Copyright © 2017 by the American Academy of Pediatrics.

Care of the Chronically Ill at Home: An Unresolved Dilemma in Health Policy for the United States

PubMed Central

Buhler-Wilkerson, Karen

2007-01-01

The problems of caring for patients with disabling illnesses who neither get well nor die are not new. Such patients have always required assistance at home from family, benevolent volunteers, or paid caregivers. Despite two centuries of experimentation, however, no agreement exists concerning the balance between the public and private resources to be allocated through state funding, private insurance, and family contributions for the daily and routine care at home for chronically ill persons of all ages. This article examines these issues and the unavoidable tensions between fiscal reality and legitimate need. It also uses historical and policy analyses to explain why home care has never become the cornerstone for caring for the chronically ill. PMID:18070332

Co-occurring mental illness and health care utilization and expenditures in adults with obesity and chronic physical illness.

PubMed

Shen, Chan; Sambamoorthi, Usha; Rust, George

2008-06-01

The objectives of the study were to compare health care expenditures between adults with and without mental illness among individuals with obesity and chronic physical illness. We performed a cross-sectional analysis of 2440 adults (older than age 21) with obesity using a nationally representative survey of households, the Medical Expenditure Panel Survey. Chronic physical illness consisted of self-reported asthma, diabetes, heart disease, hypertension, or osteoarthritis. Mental illness included affective disorders; anxiety, somatoform, dissociative, personality disorders; and schizophrenia. Utilization and expenditures by type of service (total, inpatient, outpatient, emergency room, pharmacy, and other) were the dependent variables. Chi-square tests, logistic regression on likelihood of use, and ordinary least squares regression on logged expenditures among users were performed. All regressions controlled for gender, race/ethnicity, age, martial status, region, education, employment, poverty status, health insurance, smoking, and exercise. All analyses accounted for the complex design of the survey. We found that 25% of adults with obesity and physical illness had a mental illness. The average total expenditures for obese adults with physical illness and mental illness were $9897; average expenditures were $6584 for those with physical illness only. Mean pharmacy expenditures for obese adults with physical illness and mental illness and for those with physical illness only were $3343 and $1756, respectively. After controlling for all independent variables, among adults with obesity and physical illness, those with mental illness were more likely to use emergency services and had higher total, outpatient, and pharmaceutical expenditures than those without mental illness. Among individuals with obesity and chronic physical illness, expenditures increased when mental illness is added. Our study findings suggest cost-savings efforts should examine the reasons for high utilization and expenditures for those with obesity, chronic physical illness, and mental illness.

Association between component costs, study methodologies, and foodborne illness-related factors with the cost of nontyphoidal Salmonella illness.

PubMed

McLinden, Taylor; Sargeant, Jan M; Thomas, M Kate; Papadopoulos, Andrew; Fazil, Aamir

2014-09-01

Nontyphoidal Salmonella spp. are one of the most common causes of bacterial foodborne illness. Variability in cost inventories and study methodologies limits the possibility of meaningfully interpreting and comparing cost-of-illness (COI) estimates, reducing their usefulness. However, little is known about the relative effect these factors have on a cost-of-illness estimate. This is important for comparing existing estimates and when designing new cost-of-illness studies. Cost-of-illness estimates, identified through a scoping review, were used to investigate the association between descriptive, component cost, methodological, and foodborne illness-related factors such as chronic sequelae and under-reporting with the cost of nontyphoidal Salmonella spp. illness. The standardized cost of nontyphoidal Salmonella spp. illness from 30 estimates reported in 29 studies ranged from $0.01568 to $41.22 United States dollars (USD)/person/year (2012). The mean cost of nontyphoidal Salmonella spp. illness was $10.37 USD/person/year (2012). The following factors were found to be significant in multiple linear regression (p≤0.05): the number of direct component cost categories included in an estimate (0-4, particularly long-term care costs) and chronic sequelae costs (inclusion/exclusion), which had positive associations with the cost of nontyphoidal Salmonella spp. illness. Factors related to study methodology were not significant. Our findings indicated that study methodology may not be as influential as other factors, such as the number of direct component cost categories included in an estimate and costs incurred due to chronic sequelae. Therefore, these may be the most important factors to consider when designing, interpreting, and comparing cost of foodborne illness studies.

Integrating physical activity into mental health services for persons with serious mental illness.

PubMed

Richardson, Caroline R; Faulkner, Guy; McDevitt, Judith; Skrinar, Gary S; Hutchinson, Dori S; Piette, John D

2005-03-01

This article reviews evidence supporting the need for interventions to promote physical activity among persons with serious mental illness. Principles of designing effective physical activity interventions are discussed along with ways to adapt such interventions for this population. Individuals with serious mental illness are at high risk of chronic diseases associated with sedentary behavior, including diabetes and cardiovascular disease. The effects of lifestyle modification on chronic disease outcomes are large and consistent across multiple studies. Evidence for the psychological benefits for clinical populations comes from two meta-analyses of outcomes of depressed patients that showed that effects of exercise were similar to those of psychotherapeutic interventions. Exercise can also alleviate secondary symptoms such as low self-esteem and social withdrawal. Although structured group programs can be effective for persons with serious mental illness, especially walking programs, lifestyle changes that focus on accumulation of moderate-intensity activity throughout the day may be most appropriate. Research suggests that exercise is well accepted by people with serious mental illness and is often considered one of the most valued components of treatment. Adherence to physical activity interventions appears comparable to that in the general population. Mental health service providers can provide effective, evidence-based physical activity interventions for individuals with serious mental illness.

Illness perception in Chinese adults with epilepsy.

PubMed

Ji, Haixia; Zhang, Lei; Li, Lunlan; Gong, Guiping; Cao, Zhaolun; Zhang, Jianfeng; Zhou, Nong; Wang, Yu; Tu, Houmian; Wang, Kai

2016-12-01

Epilepsy is among the most common neurological disorders worldwide. Understanding the patient's subjective experience plays an important role in the treatment and rehabilitation of the patient. However, few studies are concerned about the illness perception of Chinese adults with epilepsy. 117 Chinese adults with epilepsy and 87 Chinese adults with chronic liver disease completed the Chinese version of the Revised Illness Perception Questionnaire (CIPQ-R). The Chinese epilepsy patients also completed the Social Support Rating Scale (SSRS) and Simplified Coping Style Questionnaire (SCSQ). A comparison about CIPQ-R score between the epilepsy group and chronic liver group was conducted using the independent sample t test. Partial correlation coefficients were calculated among the eight subscales of the CIPQ-R and its associated factors. Results for the CIPQ-R indicated that both the epilepsy patients and the chronic liver disease patients had a moderate belief in their personal control and treatment control over their disorder. Consistent with our hypothesis, patients with epilepsy and those with chronic liver disease perceived their respective disease similarly in terms of timeline and illness coherence. However, epilepsy patients had a higher negative emotional representations level than that we expected when compared to those of the patients suffering from chronic liver disease. Partial correlation analysis in Chinese epilepsy patients showed that the timeline acute/chronic dimension and emotional representations dimension were closely related to the other dimensions of illness perception. Moreover, the illness perception of the patients was significantly associated with social support, coping style, duration of epilepsy, seizure frequency, and the number of antiepileptic drugs. Chinese patients with epilepsy had limited understanding of the illness, and poor belief in personal control and treatment control. They had a negative emotional response to their illness, and feared of the effects on the patient or patient's family. Social support, coping style, duration of epilepsy, seizure frequency, and the number of antiepileptic drugs could affect the illness perception of these patients. Further studies should focus on how to improve patients' attitudes towards their disease. Copyright © 2016 Elsevier B.V. All rights reserved.

Rethinking 'risk' and self-management for chronic illness.

PubMed

Morden, Andrew; Jinks, Clare; Ong, Bie Nio

2012-02-01

Self-management for chronic illness is a current high profile UK healthcare policy. Policy and clinical recommendations relating to chronic illnesses are framed within a language of lifestyle risk management. This article argues the enactment of risk within current UK self-management policy is intimately related to neo-liberal ideology and is geared towards population governance. The approach that dominates policy perspectives to 'risk' management is critiqued for positioning people as rational subjects who calculate risk probabilities and act upon them. Furthermore this perspective fails to understand the lay person's construction and enactment of risk, their agenda and contextual needs when living with chronic illness. Of everyday relevance to lay people is the management of risk and uncertainty relating to social roles and obligations, the emotions involved when encountering the risk and uncertainty in chronic illness, and the challenges posed by social structural factors and social environments that have to be managed. Thus, clinical enactments of self-management policy would benefit from taking a more holistic view to patient need and seek to avoid solely communicating lifestyle risk factors to be self-managed.

Community Care of the Chronically Mentally Ill. Proceedings of the Robert Lee Sutherland Seminar in Mental Health (6th, Austin, TX, September 30-October 1, 1988).

ERIC Educational Resources Information Center

Bonjean, Charles M., Ed.; And Others

This volume presents the proceedings of a seminar concerned with community care for the chronically mentally ill. After an introductory overview by Ira Iscoe, the first section consists of the following major addresses, presentations, and commissioned papers: (1) "The Community as the Primary Locus of Care for Persons with Serious Long-Term…

Poor nutritional habits: a modifiable predecessor of chronic illness? A North Carolina Family Medicine Research Network (NC-FM-RN) study.

PubMed

Gaskins, Nicole D; Sloane, Philip D; Mitchell, C Madeline; Ammerman, Alice; Ickes, Scott B; Williams, Christianna S

2007-01-01

To examine associations between personal nutritional patterns and various indicators of health, disease risk, and chronic illness in a diverse, representative sample of adult patients from primary care settings. As part of a survey of adult patients conducted in the waiting rooms of 4 primary care practices in North Carolina (recruitment rate 74.8%), a 7-item nutrition screen was administered to 1788 study participants. Other questionnaire items addressed disease and functional status, race/ethnicity, health habits, and demographic factors. Respondents included 292 African Americans (17.3%), 1004 non-Hispanic whites (59.4%), 255 Hispanics (15.1%), and 126 American Indians (7.4%); mean age 47.5 years. Thirty percent reported eating 3 or more fast food meals weekly, 29% drank 3 or more high-sugar beverages weekly, 22% ate 3 or more high-fat snacks weekly, 36% ate 3 or more desserts weekly, 11% reported eating "a lot" of margarine, butter, or meat fat; 62% ate 2 or fewer fruits or vegetables daily; and 42% reported consuming protein less than 3 times a week. Scores on a summary measure were worse for pre-diabetics than for diabetics, for young adults compared with older persons, and for persons reporting good/excellent health versus fair/poor health. People at high risk for developing chronic illnesses later in life reported poorer diets in comparison with people who are already ill. This probably represents increased nutritional awareness and motivation among people with chronic diseases. Because primary care patients have a high prevalence of chronic disease risk factors, the primary care office setting may constitute a particularly appropriate location for nutrition education.

Understanding stigma in chronic health conditions: implications for nursing.

PubMed

Engebretson, Joan

2013-10-01

This article explores the social processes in stigmatization and the theoretical background on the impact in chronic illness. Review of literature from social sciences and applications to health issues. Understanding the social utility of stigmatization in preserving social cohesion and protecting the social order is an important function. However, this process can be harmful when applied to persons with chronic illness, such as HIV-AIDS, and psychiatric illness. These individuals often become shamed, ostracized, isolated, discredited, and socially and economically marginalized. Recent theoretical work on stigma has identified several issues and patient responses that may have implications in many other chronic conditions. Stigma is based on visible or nonvisible health conditions and can be both externally imposed or perceived in a process of self-stigma. Understanding stigma can aid clinicians in providing supportive help for patients with chronic illness. Stigma has been well researched in a few chronic illnesses; however, future studies in other conditions are much needed. Recognizing the underlying social factors has potential use in health-promoting behaviors. Sensitivity to stigma allows health professionals to critically reflect on ways the healthcare environment may add to stigma for their patients. ©2013 The Author(s) ©2013 American Association of Nurse Practitioners.

The Experience of Care-Giving for a Person with Parkinson's Disease

ERIC Educational Resources Information Center

Bogard, Connie Lynn

2010-01-01

As the population continues to become more aged and at risk for chronic illness, there will be a growing need for caregivers. Caregivers to persons with Parkinson's disease (PD) face the challenge of providing care over many years due to the chronic progressive nature of this neurological disorder. The purpose of this study was to understand and…

Swedish District Nurses' experiences on the use of information and communication technology for supporting people with serious chronic illness living at home--a case study.

PubMed

Nilsson, Carina; Skär, Lisa; Söderberg, Siv

2010-06-01

The aim of this case study was to describe two District Nurses' (DN) experiences of using information and communication technology (ICT) to communicate with chronically ill people in their homes. An electronic messaging program via computers and mobile phones with an Internet connection was used, enabling DNs and the ill people to exchange messages to and from anywhere. The program comprised different virtual rooms, and communication was via text messages. The DNs in this study used the program two to four times each week from November 2003 to March 2004. Semi-structured interviews were performed before, during and after the implementation of the new technology and were analysed using thematic content analysis. The results showed that the DNs felt that the technology increased accessibility to nursing care through a more direct communication with the ill person meaning that a more trusting relationship could be created. The DNs also experienced that the use of ICT saved working time. This study indicates that the use of ICT for communication allowed the DN to better support a chronically ill person at home leading to improved home nursing care. This method of communication cannot replace physical presence, but can be seen as a complement to nursing care at home.

Home Care Services

MedlinePlus

Home care is care that allows a person with special needs stay in their home. It might be for people who are getting ... chronically ill, recovering from surgery, or disabled. Home care services include Personal care, such as help with ...

The "cruel radiance of what is": helping couples live with chronic illness.

PubMed

Weingarten, Kaethe

2013-03-01

The threat of no longer being the person one wants to be hovers over each ill person and plays out relationally. The dynamic interplay of this experience of self-loss and other-loss (Roos, 2002; Weingarten, 2012) has a significant impact on couples, both of whom may come to have both experiences. In this article, I focus on the couples' experience of self- and other-loss in the context of chronic illness, in which one person's experience flows into and informs the other's. In particular, I describe how asymmetric acknowledgment of self-loss and other-loss adds to the misery of couples who are already challenged by poor health. Physical pain also makes dealing with self- and other-loss harder. Therapists can serve couples better if they take a fully collaborative stance; appreciate the dilemmas of witnessing; help couples distinguish new trauma from retraumatization and fear; work with the weaver's dilemma and the boatman's plight (Weingarten, 2012); and are comfortable with discussion of end of life issues. © FPI, Inc.

Obstructive Lung Diseases in HIV: A Clinical Review and Identification of Key Future Research Needs

PubMed Central

Drummond, M. Bradley; Kunisaki, Ken M.; Huang, Laurence

2016-01-01

HIV infection has shifted from what was once a disease directly impacting short-term mortality to what is now a chronic illness controllable in the era of effective combination antiretroviral therapy (ART). In this setting, life expectancy for HIV-infected individual is nearly comparable to that of individuals without HIV. Subsequent to this increase in life expectancy, there has been recognition of increased multimorbidity among HIV-infected persons, with prevalence of comorbid chronic illnesses now approaching 65%. Obstructive lung diseases, including chronic obstructive pulmonary disease (COPD) and asthma, are prevalent conditions associated with substantial morbidity and mortality in the United States. There is overlap in risk factors for HIV acquisition and chronic lung diseases, including lower socioeconomic status and the use of tobacco and illicit drugs. Objectives of this review are to (1) summarize the current state of knowledge regarding COPD and asthma among HIV-infected persons, (2) highlight implications for clinicians caring for patients with these combined comorbidities, and (3) identify key research initiatives to reduce the burden of obstructive lung diseases among HIV-infected persons. PMID:26974304

Perceived resource support for chronic illnesses among diabetics in north-western China.

PubMed

Zhong, Huiqin; Shao, Ya; Fan, Ling; Zhong, Tangshen; Ren, Lu; Wang, Yan

2016-06-01

A high level of social support can improve long-term diabetes self-management. Support from a single source has been evaluated. This study aims to analyze support from multiple and multilevel sources for diabetic patients by using the Chronic Illness Resources Survey (CIRS). Factors influencing the utilization of the CIRS were also evaluated. A total of 297 patients with diabetes were investigated using the CIRS and Perceived Diabetes Self-management Scale in Shihezi City, China. Descriptive statistics were used to explain demographic variables and scores of the scales. Factors affecting the utilization of chronic illness resources were determined through univariate analysis and then examined by multivariate logistic regression analysis. Of the 297 diabetic patients surveyed, 67% failed to reach the standard (more than 3 points) of utilizing chronic illness resources. Moreover, utilization of chronic illness resources was positively moderately correlated with self-management of diabetes (r = 0.75, P < 0.05). According to the multivariate logistic regression analysis, age (OR, 3.42; 95%CI, 1.19-9.84) and monthly income (OR, 5.27; 95%CI, 1.86-14.90) were significantly positively associated with the CIRS score. Individuals with high school (OR, 2.61; 95%CI, 1.13-6.05) and college (OR, 3.02; 95%CI, 1.13-8.04) degrees obtained higher scores in the survey than those with elementary school education. Results indicated that utilization of resources and support for chronic illness self-management, particularly personal adjustment and organization, were not ideal among diabetics in the communities of north-western China. Improved utilization of chronic illness resources was conducive for proper diabetes self-management. Furthermore, the level of utilization of chronic illness resources increased with age, literacy level, and monthly income.

Neighbourly support of people with chronic illness; is it related to neighbourhood social capital?

PubMed

Waverijn, Geeke; Heijmans, Monique; Groenewegen, Peter P

2017-01-01

The neighbourhood may provide resources for health. It is to date unknown whether people who live in neighbourhoods with more social capital have more access to practical and emotional support by neighbours, or whether this is a resource only available to those who are personally connected to people in their neighbourhood. We investigated whether support by neighbours of people with chronic illness was related to neighbourhood social capital and to individual neighbourhood connections. Furthermore, we investigated whether support received from neighbours by people with chronic illness differed according to demographic and disease characteristics. We collected data on support by neighbours and individual connections to neighbours among 2272 people with chronic illness in 2015. Data on neighbourhood social capital were collected among 69,336 people in 3425 neighbourhoods between May 2011 and September 2012. Neighbourhood social capital was estimated with ecometric measurements. We conducted multilevel regression analyses. People with chronic illness were more likely to receive practical and emotional support from neighbours if they had more individual connections to people in their neighbourhood. People with chronic illness were not more likely to receive practical and emotional support from neighbours if they lived in a neighbourhood with more social capital. People with chronic illness with moderate physical disabilities or with comorbidity, and people with chronic illness who lived together with their partner or children, were more likely to receive support from neighbours. To gain more insight into the benefits of neighbourhood social capital, it is necessary to differentiate between the resources only accessible through individual connections to people in the neighbourhood and resources provided through social capital on the neighbourhood level. Copyright © 2016 Elsevier Ltd. All rights reserved.

Substance use disorders in a sample of Canadian patients with chronic mental illness.

PubMed

Toner, B B; Gillies, L A; Prendergast, P; Cote, F H; Browne, C

1992-03-01

In a study designed to investigate the pattern of substance use disorders among a group of chronic mentally ill patients in Toronto, 102 patients completed the Structured Clinical Interview for DSM-III-R and a modified substance-use-disorder module of the Diagnostic Interview Schedule. Forty percent of the sample met criteria for substance use disorders, and 49 percent for personality disorder. Among patients with personality disorder, all those with a personality disorder in cluster B (that is, with antisocial, borderline, histrionic, or narcissistic personality disorder) had a substance use disorder, while the majority of patients in cluster A and cluster C were not substance abusers. In the overall sample, the group with substance use disorders was significantly younger than the group without. In contrast to findings of previous studies, women met criteria for substance use disorders as often as men did.

Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM): Design and Implementation of a Prospective/Retrospective Rolling Cohort Study

PubMed Central

Unger, Elizabeth R.; Lin, Jin-Mann S.; Tian, Hao; Natelson, Benjamin H.; Lange, Gudrun; Vu, Diana; Blate, Michelle; Klimas, Nancy G.; Balbin, Elizabeth G.; Bateman, Lucinda; Allen, Ali; Lapp, Charles W.; Springs, Wendy; Kogelnik, Andreas M.; Phan, Catrina C.; Danver, Joan; Podell, Richard N.; Fitzpatrick, Trisha; Peterson, Daniel L.; Gottschalk, C. Gunnar; Rajeevan, Mangalathu S.

2017-01-01

In the Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM), we relied on expert clinician diagnoses to enroll patients from 7 specialty clinics in the United States in order to perform a systematic collection of data on measures of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). Healthy persons and those with other illnesses that share some features with ME/CFS were enrolled in comparison groups. The major objectives were to: 1) use standardized questionnaires to measure illness domains of ME/CFS and to evaluate patient heterogeneity overall and between clinics; 2) describe the course of illness, identify the measures that best correlate with meaningful clinical differences, and assess the performances of questionnaires as patient/person-reported outcome measures; 3) describe prescribed medications, orders for laboratory and other tests, and management tools used by expert clinicians to care for persons with ME/CFS; 4) collect biospecimens for future hypothesis testing and for evaluation of morning cortisol profiles; and 5) identify measures that best distinguish persons with ME/CFS from those in the comparison groups and detect subgroups of persons with ME/CFS who may have different underlying causes. Enrollment began in 2012 and is planned to continue in multiple stages through 2017. We present the MCAM methods in detail, along with an initial description of the 471 patients with ME/CFS who were enrolled in stage 1. PMID:28338983

Differences and similarities in the trajectories of self-esteem and positive and negative affect in persons with chronic illness: an explorative longitudinal study

PubMed Central

Bonsaksen, Tore; Lerdal, Anners; Småstuen, Milada Cvancarova; Fagermoen, May Solveig

2016-01-01

Background Chronic illness is a risk factor for low self-esteem, and the research literature needs to include more studies of self-esteem and its development in chronic illness groups using longitudinal and comparative designs. The aim of this study was to explore the trajectories of self-esteem and of positive and negative affect in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). Methods Patient education course attendants in Norway having morbid obesity (n=139) or COPD (n=97) participated in the study. Data concerning self-esteem, positive and negative affect, and sociodemographic background were collected at the start and at the end of the patient education, with subsequent follow-ups at 3, 6, and 12 months. Data were analyzed using linear mixed models for repeated measures. Results Taking all measurements into account, our data revealed a statistically significant increase in self-esteem for participants with morbid obesity but not for those with COPD. There were no significant differences in levels of negative and positive affect between the two groups, and the time-trajectories were also similar. However, participants in both groups achieved lower levels of negative affect for all the successive measurement points. Conclusion An increase in self-esteem during the first year after the patient education course was observed for persons with morbid obesity, but not for persons with COPD. Initial higher levels of self-esteem in the participants with COPD may indicate that they are less troubled with low self-esteem than people with morbid obesity are. The pattern of reduced negative affect for both groups during follow-up is promising. PMID:27574438

Differences and similarities in the trajectories of self-esteem and positive and negative affect in persons with chronic illness: an explorative longitudinal study.

PubMed

Bonsaksen, Tore; Lerdal, Anners; Småstuen, Milada Cvancarova; Fagermoen, May Solveig

2016-01-01

Chronic illness is a risk factor for low self-esteem, and the research literature needs to include more studies of self-esteem and its development in chronic illness groups using longitudinal and comparative designs. The aim of this study was to explore the trajectories of self-esteem and of positive and negative affect in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). Patient education course attendants in Norway having morbid obesity (n=139) or COPD (n=97) participated in the study. Data concerning self-esteem, positive and negative affect, and sociodemographic background were collected at the start and at the end of the patient education, with subsequent follow-ups at 3, 6, and 12 months. Data were analyzed using linear mixed models for repeated measures. Taking all measurements into account, our data revealed a statistically significant increase in self-esteem for participants with morbid obesity but not for those with COPD. There were no significant differences in levels of negative and positive affect between the two groups, and the time-trajectories were also similar. However, participants in both groups achieved lower levels of negative affect for all the successive measurement points. An increase in self-esteem during the first year after the patient education course was observed for persons with morbid obesity, but not for persons with COPD. Initial higher levels of self-esteem in the participants with COPD may indicate that they are less troubled with low self-esteem than people with morbid obesity are. The pattern of reduced negative affect for both groups during follow-up is promising.

Vitamin D and Depression: Where is all the Sunshine?

PubMed Central

Penckofer, Sue; Kouba, Joanne; Byrn, Mary; Ferrans, Carol Estwing

2010-01-01

Depression in its own right is a disabling condition impairing all aspects of human function. In persons with a chronic medical disease, depression often makes the management of chronic illness more difficult. Recently, vitamin D has been reported in the scientific and lay press as an important factor that may have significant health benefits in the prevention and the treatment of many chronic illnesses. Most individuals in this country have insufficient levels of vitamin D. This is also true for persons with depression as well as other mental disorders. Whether this is due to insufficient dietary intake, lifestyle (e.g., little outdoor exposure to sunshine), or other factors is addressed in this paper. In addition, groups at risk and suggested treatment for inadequate vitamin D levels are addressed. Effective detection and treatment of inadequate vitamin D levels in persons with depression and other mental disorders may be an easy and cost-effective therapy which could improve patients’ long-term health outcomes as well as their quality of life. PMID:20450340

Policies and Consequences: How America and Psychiatry Took the Detour to Erewhon.

PubMed

Becker, Robert E

2015-10-01

In the mid-1960s, federal legislation provided psychiatry with funds for construction and initial staffing of local community mental health programs and funded university psychiatry departments to support research, innovations, and education in social-community psychiatry. Psychiatry gained resources for treating diseases and for addressing the disabilities that accompany mental illnesses. Abrupt losses of federal funding in the following decades, combined with restrictive insurance reimbursements and the expanding influence of the pharmaceutical industry, undermined psychiatry's abilities to address the needs of persons with severe mental illness. The author describes the perverse shift in social priorities that has occurred-with persons who have chronic mental illness housed in jails and heightened public perceptions that mass murders are the acts of persons with mental illness.

Multiple Chronic Condition Combinations and Depression in Community-Dwelling Older Adults.

PubMed

Pruchno, Rachel A; Wilson-Genderson, Maureen; Heid, Allison R

2016-07-01

The U.S. Department of Health and Human Services recently called for a paradigm shift from the study of individual chronic conditions to multiple chronic conditions (MCCs). We identify the most common combinations of chronic diseases experienced by a sample of community-dwelling older people and assess whether depression is differentially associated with combinations of illnesses. Self-reports of diagnosed chronic conditions and depressive symptoms were provided by 5,688 people participating in the ORANJ BOWL(SM) research panel. Each respondent was categorized as belonging to one of 32 groups. ANOVA examined the association between depressive symptoms and combinations of illnesses. People with more health conditions experienced higher levels of depression than people with fewer health conditions. People with some illness combinations had higher levels of depressive symptoms than people with other illness combinations. Findings confirm extensive variability in the combinations of illnesses experienced by older adults and demonstrate the complex associations of specific illness combinations with depressive symptoms. Results highlight the need to expand our conceptualization of research and treatment around MCCs and call for a person-centered approach that addresses the unique needs of individuals with MCCs. © The Author 2016. 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.

Predictors of burden among lower socioeconomic status caregivers of persons with chronic mental illness.

PubMed

Biegel, D E; Milligan, S E; Putnam, P L; Song, L Y

1994-10-01

This study uses a stress-coping-support framework to examine the predictors of caregiver burden with a sample of 103 lower social class family caregivers of persons with chronic mental illness. Results of multiple regression analyses show that the greater the frequency of client behavioral symptoms and the lower the amount of perceived support from family members, the higher the level of overall caregiver burden. Examination of the predictors of specific types of burden-family disruption, stigma, strain, and dependency-reveal that different constellations of variables predict different types of burden. The need for mental health agencies to address caregiver and client concerns is addressed. Implications are presented for practice and future research.

Patients’ Experiences of Being a Burden on Family in Terminal Illness

PubMed Central

Johnson, Julia Overturf; Sulmasy, Daniel P.; Nolan, Marie T.

2009-01-01

Studies of persons with chronic and life-threatening illness have revealed a fear of being a burden on family. The purpose of this case study was to explore that concern in-depth in three persons with different terminal illnesses. Participants were part of a larger study of end-of-life decision making and were selected for this study because their illnesses are characterized by a steady decline in health (amyotrophic lateral sclerosis), a rapid decline (stage IV lung cancer), or an uncertain trajectory of decline (advanced heart failure). Content analysis of their interviews resulted in four themes: managing the burden, spirituality, supportive relationships, and planning for the future. Themes contained specific categories of thoughts, feelings, and actions related to fear of being a burden. These themes should be explored in greater depth in future larger studies of persons with terminal illness. PMID:19183701

Bringing Person-Centeredness and Active Involvement into Reality

ERIC Educational Resources Information Center

Torenholt, Rikke; Engelund, Gitte; Willaing, Ingrid

2015-01-01

Purpose: The purpose of this paper is to examine the use and applicability of cultural probes--an explorative participatory method to gain insights into a person's life and thoughts--to achieve person-centeredness and active involvement in self-management education for people with chronic illness. Design/methodology/approach: An education toolkit…

Forging partnerships between rural women with chronic conditions and their health care providers.

PubMed

Cudney, Shirley; Weinert, Clarann; Kinion, Elizabeth

2011-03-01

Successful adaptation to chronic illness is enhanced by active client-health care provider partnerships. The purposes of this article are to (a) examine the health care partnership needs of western rural women with chronic illness who participated in a computer-based support and education project, (b) describe how the role of the women in the partnership can be maximized by the use of a personal health record and improving health literacy, and (c) discuss ways health care providers can enhance their role in the partnership by careful listening and creating environments conducive to forging productive client-provider partnerships.

Work right to right work: An automythology of chronic illness and work.

PubMed

Vijayasingham, Lavanya

2018-03-01

Objectives Chronic illness is known to disrupt and redirect the usual course of work trajectories. This article aims to portray the longitudinal course of negotiating work after multiple sclerosis. Methods Using therapy and personal journals to reconstruct memories and experience, an autoethnography is produced and narrated within Campbell's "Hero's Journey" automythology framework. Results The narrative highlights the intrasubjectivity of illness meaning-the changing internal meaning-making and external behavior and decision-making dynamics. The journey of being inhibited to "Work Right", to "Looking for the Right" and ultimately, finding "Right Work" is charted; portrayed as a bittersweet maneuver to achieve work-illness equilibrium. Discussion This journey traverses a spectrum of negative coping-the exhibition of deviant work behaviors, disengagement and depression; to recalibration and renewal; culminating in living the "new normal", and finding moral and meaningful work engagements. Life trajectories with chronic illness are often skewed and redirected; but longitudinal narratives of normalization and coping also highlight the pursuits to secure and maintain a life of meaning and value.

Life Event, Stress and Illness

PubMed Central

Salleh, Mohd. Razali

2008-01-01

The relationship between stress and illness is complex. The susceptibility to stress varies from person to person. Among the factors that influenced the susceptibility to stress are genetic vulnerability, coping style, type of personality and social support. Not all stress has negative effect. Studies have shown that short-term stress boosted the immune system, but chronic stress has a significant effect on the immune system that ultimately manifest an illness. It raises catecholamine and suppressor T cells levels, which suppress the immune system. This suppression, in turn raises the risk of viral infection. Stress also leads to the release of histamine, which can trigger severe broncho-constriction in asthmatics. Stress increases the risk for diabetes mellitus, especially in overweight individuals, since psychological stress alters insulin needs. Stress also alters the acid concentration in the stomach, which can lead to peptic ulcers, stress ulcers or ulcerative colitis. Chronic stress can also lead to plaque buildup in the arteries (atherosclerosis), especially if combined with a high-fat diet and sedentary living. The correlation between stressful life events and psychiatric illness is stronger than the correlation with medical or physical illness. The relationship of stress with psychiatric illness is strongest in neuroses, which is followed by depression and schizophrenia. There is no scientific evidence of a direct cause-and-effect relationship between the immune system changes and the development of cancer. However, recent studies found a link between stress, tumour development and suppression of natural killer (NK) cells, which is actively involved in preventing metastasis and destroying small metastases. PMID:22589633

Effects of personality on self-rated health in a 1-year randomized controlled trial of chronic illness self-management

PubMed Central

Jerant, Anthony; Chapman, Benjamin; Duberstein, Paul; Franks, Peter

2010-01-01

Objective Personality factors moderate self-efficacy enhancing effects of some illness self-management interventions, but their influence on self-rated health is unclear This study examined whether high neuroticism and low conscientiousness, extraversion, and agreeableness (the distressed personality profile) moderated the effects of the homing in on health (HIOH) illness self-management intervention on mental and physical health status. Design Analysis of data from 384 subjects completing a randomized controlled trial of HIOH. Methods Regression analyses examined effects of NEO-five factor inventory scores on SF-36 mental component summary (MCS-36) and physical component summar (PCS-36) scores (baseline; 2, 4, and 6 weeks; 6 months; 1 year), adjusting for age gender, and study group. Results Baseline MCS-36 scores were worse in those with the distressed personality profile relative to others: high neuroticism (13.3 points worse, 95% confidence interval (CI) = 11.0, 15.7) and low conscientiousness (6.6 points worse, 95% CI = 4.1, 9.2), extraversion (10.1 points worse, 95% CI = 7.7, 12.5) and agreeableness (4.2 points worse, 95% CI = 1.6, 6.8). Intervention subjects had better MCS-36 scores at 4 and 6 weeks, and benefits were confined to participants with low conscientiousness (4 weeks – 3.7 points better, 95% CI = 0.2, 71; 6 weeks – 5.0 points better, 95% CI = 1.57, 8.4). There were no intervention or personality effects on PCS-36 scores. Conclusions Chronically ill self-management intervention recipients with the distressed personality profile had worse self-rated mental health, and conscientiousness moderated the short-term effects of the intervention on self-rated mental health. Measuring personality may help identify individuals more likely to benefit from self-management interventions. PMID:19594988

Comparative cost analysis of housing and case management program for chronically ill homeless adults compared to usual care.

PubMed

Basu, Anirban; Kee, Romina; Buchanan, David; Sadowski, Laura S

2012-02-01

To assess the costs of a housing and case management program in a novel sample-homeless adults with chronic medical illnesses. The study used data from multiple sources: (1) electronic medical records for hospital, emergency room, and ambulatory medical and mental health visits; (2) institutional and regional databases for days in respite centers, jails, or prisons; and (3) interviews for days in nursing homes, shelters, substance abuse treatment centers, and case manager visits. Total costs were estimated using unit costs for each service. Randomized controlled trial of 407 homeless adults with chronic medical illnesses enrolled at two hospitals in Chicago, Illinois, and followed for 18 months. Compared to usual care, the intervention group generated an average annual cost savings of (-)$6,307 per person (95 percent CI: -16,616, 4,002; p = .23). Subgroup analyses of chronically homeless and those with HIV showed higher per person, annual cost savings of (-)$9,809 and (-)$6,622, respectively. Results were robust to sensitivity analysis using unit costs. The findings of this comprehensive, comparative cost analyses demonstrated an important average annual savings, though in this underpowered study these savings did not achieve statistical significance. © Health Research and Educational Trust.

Development and psychometric properties of the Maastricht Personal Autonomy Questionnaire (MPAQ) in older adults with a chronic physical illness.

PubMed

Mars, Godelief M J; van Eijk, Jacques Th M; Post, Marcel W M; Proot, Ireen M; Mesters, Ilse; Kempen, Gertrudis I J M

2014-08-01

To develop and test the Maastricht Personal Autonomy Questionnaire (MPAQ), an instrument measuring personal autonomy of older adults with a chronic physical illness in accordance with their experience of autonomy. Achievement of personal autonomy is conceptualized as correspondence between the way people's lives are actually arranged and the way people want to arrange their lives. A field test was conducted in three waves (n = 412, n = 125 and n = 244) among a random sample of people older than 59 years with either chronic obstructive pulmonary disease or diabetes mellitus. Construct validity, reproducibility and responsiveness were evaluated. The MPAQ entailing 16 items consists of three scales: degree of (personal) autonomy, working on autonomy and dilemmas. Construct validity was largely supported by confirmatory factor analysis and correlations between the MPAQ and other instruments. Intraclass correlation coefficients ranged from 0.61 to 0.80 and SRDsgroup from 0.10 to 0.13. Mean change was larger (0.54) than was SRDgroup (0.11) in patients who had deteriorated, but smaller in patients who had improved (0.07). The MPAQ has good content and construct validity and moderate reproducibility. Responsiveness is weak, although better for deterioration than for improvement.

Integrated Services for Frail Elders (SIPA): A Trial of a Model for Canada

ERIC Educational Resources Information Center

Beland, Francois; Bergman, Howard; Lebel, Paule; Dallaire, Luc; Fletcher, John; Contandriopoulos, Andre-Pierre; Solidage, Tousignant Pierre

2006-01-01

The complex formed by chronic illness, episodes of acute illness, physiological disabilities, functional limitations, and cognitive problems is prevalent among frail elderly persons. These individuals rely on assistance from social and health care programs, which in Canada are still fragmented. SIPA is an integrated service model based on…

Relation between Severity of Chronic Illness and Adjustment in Children and Adolescents with Sickle Cell Disease.

ERIC Educational Resources Information Center

Hurtig, Anita Landau; And Others

1989-01-01

The study with 70 children and adolescents with sickle cell disease did not support the hypothesis that illness severity (measured by frequency of hospitalization) would affect adjustment (measured by IQ, self-esteem, social and personal adjustment, behavioral problems, school performance, and peer relations). (Author/DB)

Sailing the Stormy Seas: The Illness Experience of Persons with Parkinson's Disease

ERIC Educational Resources Information Center

Stanley-Hermanns, Melinda; Engebretson, Joan

2010-01-01

Parkinson's disease is a chronic, progressive disorder with no known cause or promising cure. While substantial information is known about the pathophysiology, little is known about the illness experience of living with the disease. A qualitative study using an ethnographic approach was conducted to provide a rich understanding of the illness…

Factors Affecting the Acceptability of Suicide.

ERIC Educational Resources Information Center

Deluty, Robert H.

1989-01-01

College students (N=780) read 1 of 12 scenarios of person who decided to commit suicide. Scenarios varied by age of victim (45 versus 70), gender, and illness (chronic depression, chronic physical pain, terminal bone cancer). Suicide evaluations tended to be significantly more favorable when evaluators were male, victims were male, victims were…

Adjusting to Childhood Diabetes.

ERIC Educational Resources Information Center

Johnson, Suzanne Bennett

Insulin dependent diabetes is an incurable disease requiring complex management by the patient and/or his family. Previous research has found that there is no specific personality type associated with this or other diseases, nor do chronically ill persons exhibit characteristic behavioral or emotional problems. An attempt to identify the…

Stigma of visible and invisible chronic conditions.

PubMed

Joachim, G; Acorn, S

2000-07-01

Nurses deliver care to people with various forms of chronic illnesses and conditions. Some chronic conditions, such as paraplegia, are visible while others, such as diabetes, are invisible. Still others, such as multiple sclerosis, are both visible and invisible. Having a chronic illness or condition and being different from the general population subjects a person to possible stigmatization by those who do not have the illness. Coping with stigma involves a variety of strategies including the decision about whether to disclose the condition and suffer further stigma, or attempt to conceal the condition or aspects of the condition and pass for normal. We present a beginning framework that describes the relationship between the elements of stigma and the decision to disclose or hide a chronic condition based on its visibility or invisibility. The specific aims were to combine the results from a meta-study on qualitative research with a review of the quantitative literature, then develop a theoretical framework. Although an understanding of how patients cope with stigmatizing conditions is essential for nurses who aim to deliver comprehensive individualized patient care, there is little current literature on this subject. The relationship between visibility and invisibility and disclosure and non-disclosure remains poorly understood. A framework to facilitate a deeper understanding of the dynamics of chronic illnesses and conditions may prove useful for practice.

Comparing Personal Health Practices: Individuals with mental illness and the general Canadian population.

PubMed

Schofield, Ruth; Forchui, Cheryl; Montgomery, Phyllis; Rudnic, Abraham; Edwards, Betty; Meier, Amanda; Speechley, Mark

2016-06-01

Individuals with mental illness often live in chronic poverty, which is associated with personal health practices such as tobacco use and poor nutrition that disrupt physical health. The purpose of our study was to examine whether differences exist in personal health and health practices - related to nutrition, physical activity, smoking, alcohol consumption and sleep - between a cohort of individuals with mental illness in southwestern Ontario and the general Canadian population. The study sample consisted of 250 individuals who had had a psychiatric diagnosis for at least one year. We conducted a structured quantitative interview with each person to gather information about their personal health and health practices, using question wording from the National Population Health Survey and the Canadian Community Health Survey. We calculated 95% confidence intervals for our results and used them to compare our data with Canadian norms. Individuals with mental illness are significantly more likely than the general population to have a poor diet, experience poor sleep and consume alcohol in excess. It is important for nurses, health-care organizations and policy-makers to be aware that a number of factors may be influencing the personal health and health practices of individuals with mental illness and that this population may require different health promotion strategies to support a healthy lifestyle.

Care for chronic illness in Australian general practice – focus groups of chronic disease self-help groups over 10 years: implications for chronic care systems reforms

PubMed Central

Martin, Carmel M; Peterson, Chris; Robinson, Rowena; Sturmberg, Joachim P

2009-01-01

Background Chronic disease is a major global challenge. However, chronic illness and its care, when intruding into everyday life, has received less attention in Asia Pacific countries, including Australia, who are in the process of transitioning to chronic disease orientated health systems. Aim The study aims to examine experiences of chronic illness before and after the introduction of Australian Medicare incentives for longer consultations and structured health assessments in general practice. Methods Self-help groups around the conditions of diabetes, epilepsy, asthma and cancer identified key informants to participate in 4 disease specific focus groups. Audio taped transcripts of the focus groups were coded using grounded theory methodology. Key themes and lesser themes identified using a process of saturation until the study questions on needs and experiences of care were addressed. Thematic comparisons were made across the 2002/3 and 1992/3 focus groups. Findings At times of chronic illness, there was need to find and then ensure access to 'the right GP'. The 'right GP or specialist' committed to an in-depth relationship of trust, personal rapport and understanding together with clinical and therapeutic competence. The 'right GP', the main specialist, the community nurse and the pharmacist were key providers, whose success depended on interprofessional communication. The need to trust and rely on care providers was balanced by the need for self-efficacy 'to be in control of disease and treatment' and 'to be your own case manager'. Changes in Medicare appeared to have little penetration into everyday perceptions of chronic illness burden or time and quality of GP care. Inequity of health system support for different disease groupings emerged. Diabetes, asthma and certain cancers, like breast cancer, had greater support, despite common experiences of disease burden, and a need for research and support programs. Conclusion Core themes around chronic illness experience and care needs remained consistent over the 10 year period. Reforms did not appear to alleviate the burden of chronic illness across disease groups, yet some were more privileged than others. Thus in the future, chronic care reforms should build from greater understanding of the needs of people with chronic illness. PMID:19161636

Differences in social support of caregivers living with partners suffering from COPD or dementia.

PubMed

Nordtug, Bente; Krokstad, Steinar; Sletvold, Olav; Holen, Are

2013-05-01

Future patients with chronic diseases will probably remain longer in their homes. To enable family caregivers to meet these challenges, public services and informal support are essential. This study compared social support between home-dwelling caregivers of partners with chronic obstructive pulmonary disease or dementia. A cross-sectional study of 206 caregivers. Professional aid was quantified by the services utilised. Informal support from family and friends was rated by the number of helping persons and the degree of social withdrawal. The Medical Outcomes Study Social Support Survey Form captured perceived social support. For both diseases, increased severity correlated with more utilisation of professional aid. The chronic obstructive pulmonary disease group perceived more social support, reported less social withdrawal and higher numbers of helping persons. Ill partners' aggressive behaviour reduced perceived support. The use of professional aid was negatively associated with the ill partner's level of self-care, and positively correlated with social withdrawal. Professional aid was more utilised by the dementia group and by men. Differences in caregivers' needs for social support were related to their partner's disease. Counteracting social withdrawal, considering type of illness and gender differences may increase the quality of informal care. © 2011 Blackwell Publishing Ltd.

Creature comforts: personal communities, pets and the work of managing a long-term condition.

PubMed

Brooks, Helen L; Rogers, Anne; Kapadia, Dharmi; Pilgrim, Jack; Reeves, David; Vassilev, Ivaylo

2013-06-01

To explore in the context of peoples' personal social networks, the contribution that pets make to 'the work' associated with the management of long-term conditions. Mixed methods survey with nested parallel qualitative study; 300 participants were drawn from diabetes and chronic heart disease registers of General Practices across Greater Manchester in the North West of England. Notions of 'work' were used to describe the illness and everyday activities associated with chronic illness. Nineteen percent of participants identified at least one pet within their network. Pets contributed mostly to managing emotions (emotional work), to enhancing a sense of self identity (biographical work) and to a lesser extent practical tasks (everyday work). There were indicators that pets mediated relationships for people living with a long-term condition through very weak ties with others in domestic and community settings. The findings suggest that pets have unique qualities and are not simply substitutes for human relationships in long-term condition management. The study has potential implications for furthering a social contextual analysis of chronic illness, the understanding of relationships, and the meaning and the role of companion animals in long-term condition management.

Creature comforts: personal communities, pets and the work of managing a long-term condition

PubMed Central

Brooks, Helen L; Rogers, Anne; Kapadia, Dharmi; Pilgrim, Jack; Reeves, David; Vassilev, Ivaylo

2013-01-01

Objectives: To explore in the context of peoples’ personal social networks, the contribution that pets make to ‘the work’ associated with the management of long-term conditions. Method: Mixed methods survey with nested parallel qualitative study; 300 participants were drawn from diabetes and chronic heart disease registers of General Practices across Greater Manchester in the North West of England. Notions of ‘work’ were used to describe the illness and everyday activities associated with chronic illness. Results: Nineteen percent of participants identified at least one pet within their network. Pets contributed mostly to managing emotions (emotional work), to enhancing a sense of self identity (biographical work) and to a lesser extent practical tasks (everyday work). There were indicators that pets mediated relationships for people living with a long-term condition through very weak ties with others in domestic and community settings. Conclusion: The findings suggest that pets have unique qualities and are not simply substitutes for human relationships in long-term condition management. The study has potential implications for furthering a social contextual analysis of chronic illness, the understanding of relationships, and the meaning and the role of companion animals in long-term condition management. PMID:22777565

Self-Management, Perceived Control, and Subjective Quality of Life in Multiple Sclerosis: An Exploratory Study

ERIC Educational Resources Information Center

Bishop, Malachy; Frain, Michael P.; Tschopp, Molly K.

2008-01-01

Self-management has been shown to increase perceived control over both illness and nonillness aspects of life among people with chronic conditions but has not received significant research attention among persons with multiple sclerosis (MS). Based on relationships proposed in the illness intrusiveness and disability centrality models, this study…

Affect and Therapeutic Process in Groups for Chronically Mentally Ill Persons

PubMed Central

Stone, Walter N.

1998-01-01

A dynamic group treatment model for chronically ill persons allowing them to determine the frequency of attendance empowers the members and potentiates group development. This format respects patients' needs for space as represented by missed meetings. In this context, absences are formulated as self-protective and self-stabilizing acts rather than as resistance. In an accepting, supportive environment, members can be helped to explore affects and gain insight into their behaviors. A clinical example illustrates patients' examination of the meaning of missing and attending sessions, with particular focus on intensity of involvement, autonomy, and control. In the process of testing the therapist and group, members show capacity to gain insight into recent in-group and extra-group behaviors.(The Journal of Psychotherapy Practice and Research 1998; 7:208–216) PMID:9631342

Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM): Design and Implementation of a Prospective/Retrospective Rolling Cohort Study.

PubMed

Unger, Elizabeth R; Lin, Jin-Mann S; Tian, Hao; Natelson, Benjamin H; Lange, Gudrun; Vu, Diana; Blate, Michelle; Klimas, Nancy G; Balbin, Elizabeth G; Bateman, Lucinda; Allen, Ali; Lapp, Charles W; Springs, Wendy; Kogelnik, Andreas M; Phan, Catrina C; Danver, Joan; Podell, Richard N; Fitzpatrick, Trisha; Peterson, Daniel L; Gottschalk, C Gunnar; Rajeevan, Mangalathu S

2017-04-15

In the Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM), we relied on expert clinician diagnoses to enroll patients from 7 specialty clinics in the United States in order to perform a systematic collection of data on measures of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). Healthy persons and those with other illnesses that share some features with ME/CFS were enrolled in comparison groups. The major objectives were to: 1) use standardized questionnaires to measure illness domains of ME/CFS and to evaluate patient heterogeneity overall and between clinics; 2) describe the course of illness, identify the measures that best correlate with meaningful clinical differences, and assess the performances of questionnaires as patient/person-reported outcome measures; 3) describe prescribed medications, orders for laboratory and other tests, and management tools used by expert clinicians to care for persons with ME/CFS; 4) collect biospecimens for future hypothesis testing and for evaluation of morning cortisol profiles; and 5) identify measures that best distinguish persons with ME/CFS from those in the comparison groups and detect subgroups of persons with ME/CFS who may have different underlying causes. Enrollment began in 2012 and is planned to continue in multiple stages through 2017. We present the MCAM methods in detail, along with an initial description of the 471 patients with ME/CFS who were enrolled in stage 1. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health 2017. This work is written by (a) US Government employee(s) and is in the public domain in the US.

Wellness within illness: Happiness in schizophrenia

PubMed Central

Palmer, Barton W.; Martin, Averria Sirkin; Depp, Colin A.; Glorioso, Danielle K.; Jeste, Dilip V.

2016-01-01

Schizophrenia is typically a chronic disorder and among the most severe forms of serious mental illnesses in terms of adverse impact on quality of life. Yet, there have been suggestions that some people with schizophrenia can experience an overall sense of happiness in their lives. We investigated happiness among 72 outpatients with non-remitted chronic schizophrenia with a mean duration of illness of 24.4 years, and 64 healthy comparison subjects (HCs). Despite continued treatment with antipsychotic medications, the individuals with schizophrenia manifested a mild to moderate level of psychopathology. People with schizophrenia reported lower mean levels of happiness than HCs, but there was substantial heterogeneity within the schizophrenia group. Level of happiness in persons with schizophrenia was significantly correlated with higher mental health-related quality of life, and several positive psychosocial factors (lower perceived stress, and higher levels of resilience, optimism, and personal mastery). However, level of happiness was not related to sociodemographic characteristics, duration of illness, severity of positive or negative symptoms, physical function, medical comorbidity, or cognitive functioning. Except for an absence of an association with resilience, the pattern of correlations of happiness with other variables seen among HCs was similar to that in individuals with schizophrenia. Although happiness may be harder to achieve in the context of a serious mental illness, it nonetheless appears to be a viable treatment goal in schizophrenia. Psychotherapies targeting positive coping factors such as resilience, optimism, and personal mastery warrant further investigation. PMID:25153363

Wellness within illness: happiness in schizophrenia.

PubMed

Palmer, Barton W; Martin, Averria Sirkin; Depp, Colin A; Glorioso, Danielle K; Jeste, Dilip V

2014-10-01

Schizophrenia is typically a chronic disorder and among the most severe forms of serious mental illnesses in terms of adverse impact on quality of life. Yet, there have been suggestions that some people with schizophrenia can experience an overall sense of happiness in their lives. We investigated happiness among 72 outpatients with non-remitted chronic schizophrenia with a mean duration of illness of 24.4 years, and 64 healthy comparison subjects (HCs). Despite continued treatment with antipsychotic medications, the individuals with schizophrenia manifested a mild to moderate level of psychopathology. People with schizophrenia reported lower mean levels of happiness than HCs, but there was substantial heterogeneity within the schizophrenia group. Level of happiness in persons with schizophrenia was significantly correlated with higher mental health-related quality of life, and several positive psychosocial factors (lower perceived stress, and higher levels of resilience, optimism, and personal mastery). However, level of happiness was not related to sociodemographic characteristics, duration of illness, severity of positive or negative symptoms, physical function, medical comorbidity, or cognitive functioning. Except for an absence of an association with resilience, the pattern of correlations of happiness with other variables seen among HCs was similar to that in individuals with schizophrenia. Although happiness may be harder to achieve in the context of a serious mental illness, it nonetheless appears to be a viable treatment goal in schizophrenia. Psychotherapies targeting positive coping factors such as resilience, optimism, and personal mastery warrant further investigation. Copyright © 2014. Published by Elsevier B.V.

Life Stress and Dimensions of Functioning in Old Age.

ERIC Educational Resources Information Center

Leon, Gloria Rakita; And Others

1981-01-01

Most men had made a satisfactory social and emotional adjustment over time, but a significant number were troubled by chronic illness. The most common stress factor reported was death of a friend. Past personality patterns coupled with current life stress factors were not predictive of present personality functioning. (JAC)

Frequency of MMPI Profile Types in Three Chronic Illness Populations.

ERIC Educational Resources Information Center

Naliboff, Bruce D.; And Others

1983-01-01

Developed sorting rules to identify Minnesota Multiphasic Personality Inventory configurations and applied these to patients with chronic low back pain, migraine headaches, hypertension, and diabetes (N=157). Results showed that profile types did not differ in frequency among the groups but were more elevated in the back pain patients. (LLL)

An ontology-based personalization of health-care knowledge to support clinical decisions for chronically ill patients.

PubMed

Riaño, David; Real, Francis; López-Vallverdú, Joan Albert; Campana, Fabio; Ercolani, Sara; Mecocci, Patrizia; Annicchiarico, Roberta; Caltagirone, Carlo

2012-06-01

Chronically ill patients are complex health care cases that require the coordinated interaction of multiple professionals. A correct intervention of these sort of patients entails the accurate analysis of the conditions of each concrete patient and the adaptation of evidence-based standard intervention plans to these conditions. There are some other clinical circumstances such as wrong diagnoses, unobserved comorbidities, missing information, unobserved related diseases or prevention, whose detection depends on the capacities of deduction of the professionals involved. In this paper, we introduce an ontology for the care of chronically ill patients and implement two personalization processes and a decision support tool. The first personalization process adapts the contents of the ontology to the particularities observed in the health-care record of a given concrete patient, automatically providing a personalized ontology containing only the clinical information that is relevant for health-care professionals to manage that patient. The second personalization process uses the personalized ontology of a patient to automatically transform intervention plans describing health-care general treatments into individual intervention plans. For comorbid patients, this process concludes with the semi-automatic integration of several individual plans into a single personalized plan. Finally, the ontology is also used as the knowledge base of a decision support tool that helps health-care professionals to detect anomalous circumstances such as wrong diagnoses, unobserved comorbidities, missing information, unobserved related diseases, or preventive actions. Seven health-care centers participating in the K4CARE project, together with the group SAGESA and the Local Health System in the town of Pollenza have served as the validation platform for these two processes and tool. Health-care professionals participating in the evaluation agree about the average quality 84% (5.9/7.0) and utility 90% (6.3/7.0) of the tools and also about the correct reasoning of the decision support tool, according to clinical standards. Copyright © 2012 Elsevier Inc. All rights reserved.

The chronic mental patient: the position of th Canadian Psychiatric Association.

PubMed

Watt, J A; el-Guebaly, N

1981-11-01

The Canadian Psychiatric Association recommends: 1. In this International Year of Disabled Persons, that the needs of the chronic neural patient be publicized with emphasis on the potential for improvement if these needs are adequately met. A working definition of the chronic mental patient refers to those members of society who suffer from a chronic mental illness and who demonstrate significant impairment of task performance and/or social performance. 2. A comprehensive network of services should be developed including provision for basic need with a range of housing options, inpatient and outpatient psychiatric evaluations and treatment, personal clinical support, living-skills training and vocational assessment and training. Aside from patient needs, the professional status of the caregivers involved is to be enhanced. Laudable efforts by self-help groups should be further encouraged. 3. Community resources should be enlisted following principles and practices identified as basic to successful programs already existing, for example: -- provision of economic stability -- presence of administrative leadership -- striving for continuity of care -- allowance for adequate manpower -- establishment of vocational supports -- respect for patients' rights -- provision of community education -- design of ongoing evaluation and research 4. A greater emphasis should be placed in undergraduate and postgraduate medical and psychiatric training programs on the treatment of the chronically ill. 5. The Canadian Council on Hospital Accreditation should continue to elaborate and publish criteria by which services to the chronically mentally ill would be evaluated both at the inpatient and outpatient levels. These criteria when available should be promoted in all relevant institutions.

[Children of mentally ill parents: the impact of parental psychiatric diagnosis, comorbidity, severity and chronicity on the well-being of children].

PubMed

Wiegand-Grefe, S; Geers, P; Petermann, F; Plass, A

2011-01-01

Children of mentally ill parents are known as a high-risk population for the development of psychological disturbances. In this study, the psychiatric diagnoses, the severity and chronicity and the comorbidity of a parental mental illness as well as the non-specific parameters were examined in terms of their influence on the children's mental health. n = 62 children of psychiatric inpatients were examined regarding their psychic symptomatology, assessed with the CBCL-Parent Report Form. The psychiatric ICD-10 diagnoses and comorbidities as well as the severity (CGI) of the mentally ill parents were collected from psychiatric assessment forms. Children of parents with personality disorders (PD) are evaluated as highly affected by their parents, regardless of whether the PD is the primary or the comorbid diagnosis. Children of parents suffering from addictive disorders are seen as the least affected by their parents. Overall, children of parents with multiple diagnoses tend to be rated as more affected. Severity of illness and chronicity do not have a considerable impact on the children's development of mental health problems. Strikingly, children with a high length of exposure to a parental illness are psychologically less affected than children with shorter times of exposure. Thus, children possibly acquire effective coping mechanisms with increasing time of exposure. The results reveal the necessity of preventive programmes, especially in case of personality disorders. In addition the necessity for external assessment of the children becomes clear, especially in those cases where the parents exhibit a poor acceptance of their disease. © Georg Thieme Verlag KG Stuttgart · New York.

Housing and Food Insecurity, Care Access, and Health Status Among the Chronically Ill: An Analysis of the Behavioral Risk Factor Surveillance System.

PubMed

Charkhchi, Paniz; Fazeli Dehkordy, Soudabeh; Carlos, Ruth C

2018-05-01

The proportion of the United States population with chronic illness continues to rise. Understanding the determinants of quality of care-particularly social determinants-is critical to the provision of care in this population. To estimate the prevalence of housing and food insecurity among persons with common chronic conditions and to assess the independent effects of chronic illness and sociodemographic characteristics on (1) housing and food insecurity, and (2) health care access hardship and health status. Cross-sectional study. We used data from the 11 states and one territory that completed the social context module of the 2015 Behavioral Risk Factor Surveillance System (BRFSS). We estimated the prevalence of housing and food insecurity among patients with cancer, stroke, cardiovascular disease, and chronic lung disease. Logistic regression models were used to assess the independent effects of housing and food insecurity, chronic conditions, and demographics on health care access and health status. Among the chronically ill, 36.71% (95% CI: 35.54-37.88) experienced housing insecurity and 30.60% (95% CI: 29.49-31.71) experienced food insecurity. Cardiovascular and lung disease increased the likelihood of housing (OR 1.69, 95% CI: 1.07-2.66 and OR 1.71, 95% CI: 1.12-2.60, respectively) and food insecurity (OR 1.75, 95% CI: 1.12-2.73 and OR 1.78, 95% CI: 1.20-2.63, respectively). Housing and food insecurity significantly increased the risk of health care access hardship. Being insured or having an income level above 200% of the federal poverty level significantly reduced the likelihood of access hardship, while female gender significantly increased the likelihood. Chronic illness independently affects housing and food insecurity. In turn, food and housing anxiety leads to reduced access to care, likely due to cost concerns, and correlates with poorer health. A more complete understanding of the pathways by which chronic illness influences social determinants and clinical outcomes is needed.

A qualitative content analysis of peer mentoring video calls in adolescents with chronic illness.

PubMed

Ahola Kohut, Sara; Stinson, Jennifer; Forgeron, Paula; van Wyk, Margaret; Harris, Lauren; Luca, Stephanie

2018-05-01

This article endeavored to determine the topics of discussion during open-ended peer mentoring between adolescents and young adults living with chronic illness. This study occurred alongside a study of the iPeer2Peer Program. Fifty-two calls (7 mentor-mentee pairings) were audio recorded, transcribed verbatim, and analyzed using inductive coding with an additional 30 calls (21 mentor-mentee pairings) coded to ensure representativeness of the data. Three categories emerged: (1) illness impact (e.g., relationships, school/work, self-identity, personal stories), (2) self-management (e.g., treatment adherence, transition to adult care, coping strategies), and (3) non-illness-related adolescent issues (e.g., post-secondary goals, hobbies, social environments). Differences in discussed topics were noted between sexes and by diagnosis. Peer mentors provided informational, appraisal, and emotional support to adolescents.

Websites as a mode of delivering mental health information: perceptions from the Australian public.

PubMed

Leach, Liana S; Christensen, Helen; Griffiths, Kathy M; Jorm, Anthony F; Mackinnon, Andrew J

2007-02-01

Many people with a mental disorder do not access help from mental health services. Internet websites may be a useful tool for disseminating mental health information to those who remain untreated, however little is known about people's perceptions of websites as mental health information sources. The current study examined characteristics that may influence belief in the helpfulness of websites as modes of delivering information about mental health. The study compared belief in the helpfulness websites to two traditional sources (bibliotherapy and health educators). A total of 3,998 Australians aged 18 and above were surveyed. Logistic regression was used to explore the factors associated with rating a website, book and health educator as helpful sources of mental health information for a person described as having either depression, depression with suicidal thoughts, early schizophrenia or chronic schizophrenia. Factors investigated were demographics, exposure to mental illness, beliefs about dealing with mental illness alone, and personal and perceived stigmatising attitudes. Considerably more participants rated bibliotherapy and health educators as helpful in comparison to websites. Predictors of rating a website and book as helpful were identical; younger age, belief that it is helpful to deal with mental illness alone and being presented with depression and early schizophrenia vignettes in comparison to chronic schizophrenia. Predictors of rating a health educator as helpful were younger age, less personal stigma and being presented with a depression (without suicidal thoughts) vignette in comparison to chronic schizophrenia. These findings suggest the need for multiple modes of delivering mental health information. While many people feel that information delivered face-to-face is likely to be helpful, websites and other tools that maintain anonymity may be preferred by those who choose to or find themselves dealing with mental illness alone.

The Concentration of Severely Disturbed CMI in a Core Urban Area.

ERIC Educational Resources Information Center

Shern, David; Dilts, Stephen L.

1987-01-01

Conducted two needs assessment studies of chronically mentally ill (CMI). Examined differential concentration of CMI persons in areas of Colorado, finding a disproportionate concentration on CMI persons in core urban area of Denver. Comparison of core urban clients to national sample revealed that Denver's core urban CMI population was severely…

Stigmatization of Overweight Patients by Nurses

ERIC Educational Resources Information Center

Creel, Eileen; Tillman, Ken

2011-01-01

The focus of this research study was the exploration of the phenomenon of stigmatization of obese persons by nurses. The philosophical tradition of Phenomenology based on Heidegger's view of the person guided the researchers in uncovering the meaning of stigmatization for eight chronically ill individuals with a body mass index greater than 30.…

Anatomical brain images alone can accurately diagnose chronic neuropsychiatric illnesses.

PubMed

Bansal, Ravi; Staib, Lawrence H; Laine, Andrew F; Hao, Xuejun; Xu, Dongrong; Liu, Jun; Weissman, Myrna; Peterson, Bradley S

2012-01-01

Diagnoses using imaging-based measures alone offer the hope of improving the accuracy of clinical diagnosis, thereby reducing the costs associated with incorrect treatments. Previous attempts to use brain imaging for diagnosis, however, have had only limited success in diagnosing patients who are independent of the samples used to derive the diagnostic algorithms. We aimed to develop a classification algorithm that can accurately diagnose chronic, well-characterized neuropsychiatric illness in single individuals, given the availability of sufficiently precise delineations of brain regions across several neural systems in anatomical MR images of the brain. We have developed an automated method to diagnose individuals as having one of various neuropsychiatric illnesses using only anatomical MRI scans. The method employs a semi-supervised learning algorithm that discovers natural groupings of brains based on the spatial patterns of variation in the morphology of the cerebral cortex and other brain regions. We used split-half and leave-one-out cross-validation analyses in large MRI datasets to assess the reproducibility and diagnostic accuracy of those groupings. In MRI datasets from persons with Attention-Deficit/Hyperactivity Disorder, Schizophrenia, Tourette Syndrome, Bipolar Disorder, or persons at high or low familial risk for Major Depressive Disorder, our method discriminated with high specificity and nearly perfect sensitivity the brains of persons who had one specific neuropsychiatric disorder from the brains of healthy participants and the brains of persons who had a different neuropsychiatric disorder. Although the classification algorithm presupposes the availability of precisely delineated brain regions, our findings suggest that patterns of morphological variation across brain surfaces, extracted from MRI scans alone, can successfully diagnose the presence of chronic neuropsychiatric disorders. Extensions of these methods are likely to provide biomarkers that will aid in identifying biological subtypes of those disorders, predicting disease course, and individualizing treatments for a wide range of neuropsychiatric illnesses.

[Definition of medical competence. The point of view of chronically-ill patients in the Andalusian public healthcare system (Spain)].

PubMed

Prieto Rodríguez, M Ángeles; Danet Danet, Alina; Escudero Carretero, María J; Ruiz Azarola, Ainhoa; Pérez Corral, Olivia; García Toyos, Noelia

2012-01-01

To identify the attributes used by chronically-ill patients to describe physicians' competence in the public healthcare system in Andalucia. A total of 147 chronically-ill patients and their relatives were included in this qualitative study. Focal groups and in-depth interviews were performed in health centers and outpatient centers in Granada, Malaga, Seville, Cadiz and Cordoba between 2007 and 2008. Content analysis was carried out using Nudist Vivo. The participants defined medical competence as combining elements of technical ability and knowledge (awareness of and interest in the disease, continuity of follow-up and requesting specific tests) with interpersonal skills related to communication, information (informing, listening, trust, prompting questions) and attention (courtesy, cordiality, respect, interest and approachability). Primary care was expected to provide a close relationship, personalized treatment, information, drug prescription, and referral to specialized care. Specialized care was expected to provide an accurate diagnosis and appropriate treatment, information and follow-up. Highly valued aspects of emergency care were symptom relief, accurate diagnosis, referral to specialists and courtesy. Chronically-ill patients based their evaluation of medical competence on technical and interpersonal skills. Copyright © 2011 SESPAS. Published by Elsevier Espana. All rights reserved.

[Household care for ill and disabled persons: challenges for the Mexican health care system].

PubMed

Nigenda, Gustavo; López-Ortega, Mariana; Matarazzo, Cecilia; Juárez-Ramírez, Clara

2007-01-01

To identify the pattern of time devoted by members of Mexican households to providing care to ill and disabled family members. To analyze the mechanisms used by families to provide care to an ill or disabled member. The database of the 2002 National Survey of Time Use was explored to accomplish the first objective. The second objective was accomplished by collecting primary data through in-depth interviews and focal groups in Coahuila, Sinaloa, Zacatecas, Jalisco, Oaxaca and Yucatán from June to December 2004. It was estimated that 1,738,756 persons spent time providing care to ill persons and 1,496,616 to disabled persons, over the reference period of the survey. There are important differences in the dedication of hours by gender and education level. Moreover, households tend to reorganize their structure to provide care to ill and disabled members. Women tend to have more responsibilities in the process. There are important differences in the care of ill and of the disabled in terms of the physical and emotional stress produced in the caregiver. The implications of results in the care of ill and disabled populations are highly relevant for the future of the Mexican health care system. Population aging and the increase of chronic diseases call for a reinforced relationship between institutional and household care so as to complement capacities, a situation already taking place in other countries.

Whose Voice Is It Anyway? Hushing and Hearing "Voices" in Speech and Language Therapy Interactions with People with Chronic Schizophrenia

ERIC Educational Resources Information Center

Walsh, Irene P.

2008-01-01

Background: Some people with schizophrenia are considered to have communication difficulties because of concomitant language impairment and/or because of suppressed or "unusual" communication skills due to the often-chronic nature and manifestation of the illness process. Conversations with a person with schizophrenia pose many pragmatic…

The Care Needs of Community-Dwelling Seniors Suffering from Advanced Chronic Obstructive Pulmonary Disease

ERIC Educational Resources Information Center

Wilson, Donna M.; Ross, Carolyn; Goodridge, Donna; Davis, Penny; Landreville, Alison; Roebuck, Kim

2008-01-01

Aim: This study was undertaken to determine the care needs of Canadian seniors living at home with advanced chronic obstructive pulmonary disease (COPD). Background: COPD is a leading cause of morbidity and mortality worldwide. Although hospitalizations for illness exacerbations and end-stage care may be common, most persons with COPD live out…

Changes in autonomy, job demands and working hours after diagnosis of chronic disease: a comparison of employed and self-employed older persons using the English Longitudinal Study of Ageing (ELSA).

PubMed

Fleischmann, Maria; Carr, Ewan; Xue, Baowen; Zaninotto, Paola; Stansfeld, Stephen A; Stafford, Mai; Head, Jenny

2018-06-23

Modifications in working conditions can accommodate changing needs of chronically ill persons. The self-employed may have more possibilities than employees to modify their working conditions. We investigate how working conditions change following diagnosis of chronic disease for employed and self-employed older persons. We used waves 2-7 from the English Longitudinal Study of Ageing (ELSA). We included 1389 participants aged 50-60 years who reported no chronic disease at baseline. Using fixed-effects linear regression analysis, we investigated how autonomy, physical and psychosocial job demands and working hours changed following diagnosis of chronic disease. For employees, on diagnosis of chronic disease autonomy marginally decreased (-0.10, 95% CI -0.20 to 0.00) and physical job demands significantly increased (0.13, 95% CI 0.01 to 0.25), whereas for the self-employed autonomy did not significantly change and physical job demands decreased on diagnosis of chronic disease (-0.36, 95% CI -0.64 to -0.07), compared with prediagnosis levels. Psychosocial job demands did not change on diagnosis of chronic disease for employees or the self-employed. Working hours did not change for employees, but dropped for self-employed (although non-significantly) by about 2.8 hours on diagnosis of chronic disease (-2.78, 95% CI -6.03 to 0.48). Improvements in working conditions after diagnosis of chronic disease were restricted to the self-employed. This could suggest that workplace adjustments are necessary after diagnosis of chronic disease, but that the self-employed are more likely to realise these. Policy seeking to extend working life should consider work(place) adjustments for chronically ill workers as a means to prevent early exit from work. © 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.

Cultural syndromes and age moderate the emotional impact of illness intrusiveness in rheumatoid arthritis.

PubMed

Devins, Gerald M; Gupta, Anita; Cameron, Jill; Woodend, Kirsten; Mah, Kenneth; Gladman, Dafna

2009-02-01

The authors investigated cultural syndromes (multidimensional vectors comprising culturally based attitudes, values, and beliefs) and age as moderators of the emotional impact of illness intrusiveness--illness-induced lifestyle disruptions--in rheumatoid arthritis (RA) and examined illness intrusiveness effects in total and separately for three life domains (relationships and personal development, intimacy, and instrumental). People with RA (n = 105) completed the Illness Intrusiveness Ratings, Individualism-Collectivism, and Center for Epidemiologic Studies--Depression scales in a one-on-one interview. Controlling for disease and background characteristics, the association between illness intrusiveness (total score and the Relationships and Personal Development subscale) and distress was inverse when young adults with RA endorsed high horizontal individualism. Illness intrusiveness into intimacy was associated with increased distress, and this intensified when respondents endorsed high vertical individualism, horizontal collectivism, vertical collectivism, or low horizontal individualism. The negative emotional impact of illness intrusiveness into intimacy diminished with increasing age. Given an aging and increasingly pluralistic society, diversity can no longer be ignored in addressing the psychosocial impact of chronic, disabling disease.

Identifying Care Coordination Interventions Provided to Community-Dwelling Older Adults Using Electronic Health Records

PubMed Central

Kim, Tae Youn; Marek, Karen D.; Coenen, Amy

2016-01-01

Although care coordination is a popular intervention, there is no standard method of delivery. Also little is known about who most benefits or characteristics that predict the amount of care coordination needed, especially with chronically ill older adults. The purpose of this study was to identify types and amount of nurse care coordination interventions provided to 231 chronically ill older adults who participated in a 12-month home care medication management program in the Midwestern. For each participant, the nurse care coordinator spent an average of 134 minutes/month providing in-person home care, 48 minutes/month of travel, and 18 minutes/month of indirect care occurring outside the home visit. This accounted for 67.2%, 23.8%, and 9.0% of nursing time respectively for home visits, travel, and indirect care. Four of 11 nursing interventions focused on medication management were provided to all participants. Seven of the 11 main interventions were individualized according to each person’s special needs. Wide variations were observed in time provided with in-person home care and communications with multiple stakeholders. Study findings indicate the importance of individualizing interventions and the variability in the amount of nursing time needed to provide care coordination to chronically ill older adults. PMID:26985762

Measurement of Chronic Pain and Opioid Use Evaluation in Community-Based Persons with Serious Illnesses

PubMed Central

Naidu, Ramana K.

2018-01-01

Abstract Background: Chronic pain associated with serious illnesses is having a major impact on population health in the United States. Accountability for high quality care for community-dwelling patients with serious illnesses requires selection of metrics that capture the burden of chronic pain whose treatment may be enhanced or complicated by opioid use. Objective: Our aim was to evaluate options for assessing pain in seriously ill community dwelling adults, to discuss the use/abuse of opioids in individuals with chronic pain, and to suggest pain and opioid use metrics that can be considered for screening and evaluation of patient responses and quality care. Design: Structured literature review. Measurements: Evaluation of pain and opioid use assessment metrics and measures for their potential usefulness in the community. Results: Several pain and opioid assessment instruments are available for consideration. Yet, no one pain instrument has been identified as “the best” to assess pain in seriously ill community-dwelling patients. Screening tools exist that are specific to the assessment of risk in opioid management. Opioid screening can assess risk based on substance use history, general risk taking, and reward-seeking behavior. Conclusions: Accountability for high quality care for community-dwelling patients requires selection of metrics that will capture the burden of chronic pain and beneficial use or misuse of opioids. Future research is warranted to identify, modify, or develop instruments that contain important metrics, demonstrate a balance between sensitivity and specificity, and address patient preferences and quality outcomes. PMID:29091525

24 CFR 891.665 - Project size limitations.

Code of Federal Regulations, 2010 CFR

2010-04-01

... complexes for chronically mentally ill individuals may not be designed to serve more than 20 persons on one... handicapped families of one or two parents with children. (b) Additional limitations. Based on the amount of...

Household illness, poverty and physical and emotional child abuse victimisation: findings from South Africa's first prospective cohort study.

PubMed

Meinck, Franziska; Cluver, Lucie D; Boyes, Mark E

2015-05-01

Physical and emotional abuse of children is a large scale problem in South Africa, with severe negative outcomes for survivors. Although chronic household illness has shown to be a predictor for physical and emotional abuse, no research has thus far investigated the different pathways from household chronic illness to child abuse victimisation in South Africa. Confidential self-report questionnaires using internationally utilised measures were completed by children aged 10-17 (n = 3515, 56.7% female) using door-to-door sampling in randomly selected areas in rural and urban locations of South Africa. Follow-up surveys were conducted a year later (96.7% retention rate). Using multiple mediation analyses, this study investigated direct and indirect effects of chronic household illness (AIDS or other illness) on frequent (monthly) physical and emotional abuse victimisation with poverty and extent of the ill person's disability as hypothesised mediators. For children in AIDS-ill families, a positive direct effect on physical abuse was obtained. In addition, positive indirect effects through poverty and disability were established. For boys, a positive direct and indirect effect of AIDS-illness on emotional abuse through poverty were detected. For girls, a positive indirect effect through poverty was observed. For children in households with other chronic illness, a negative indirect effect on physical abuse was obtained. In addition, a negative indirect effect through poverty and positive indirect effect through disability was established. For boys, positive and negative indirect effects through poverty and disability were found respectively. For girls, a negative indirect effect through poverty was observed. These results indicate that children in families affected by AIDS-illness are at higher risk of child abuse victimisation, and this risk is mediated by higher levels of poverty and disability. Children affected by other chronic illness are at lower risk for abuse victimisation unless they are subject to higher levels of household disability. Interventions aiming to reduce poverty and increase family support may help prevent child abuse in families experiencing illness in South Africa.

An Examination of Stress and Coping among Adults Diagnosed with Severe Mental Illness

PubMed Central

Robilotta, Stephanie; Cueto, Ecena; Yanos, Philip T.

2011-01-01

The present study explored the types of major life and chronic stressors that people with severe mental illness experience, and the coping strategies that are used in response to them. Twenty-eight adults with severe mental illness completed qualitative interviews focused on stress and coping in the prior six months. Participants reported experiencing disruptive major life events including the sudden death of a loved one, loss of housing, and criminal victimization, as well as chronic stressors such as psychiatric symptoms and substance abuse issues, substandard living conditions, legal problems, and health concerns. Results suggested that persons with severe mental illness frequently use problem-centered coping strategies in response to most types of stressors, including major life events, although this occurred after the initial application of avoidant coping strategies. Future research should explore whether or not the identified stressors and the coping strategies used in response to them are unique to this population. PMID:21149987

Thermo spectral analysis (TSA) of living human skin by FT-IR -Development of a diagnostic method for the early detection of chronic diseases

NASA Astrophysics Data System (ADS)

Folberth, W.; Heim, G.

1985-12-01

A Fourier spectrometer was used in order to measure the spectral emissivity E(k) of human skin in the FIR region k=190-420 cm-1. Three studies on patient groups with defined chronic diseases have been performed: patients with untreated bronchial carcinoma, patients with rheumatic arthritis and patients with chronic renal insufficiency. In comparison with a symptomfree control group all patient groups show significant differences in E(k). As result of a discriminant analysis a separation of 95.7% between carcinoma patients and control persons is possible. The separation quotes between the other groups indicate that patients with malignant neoplasms can be discriminated from other chronically ill persons.

The Health and Recovery Peer (HARP) Program: A Peer-Led Intervention to Improve Medical Self-Management for Persons with Serious Mental Illness

PubMed Central

Druss, Benjamin G.; Zhao, Liping; von Esenwein, Silke A.; Bona, Joseph R.; Fricks, Larry; Jenkins-Tucker, Sherry; Sterling, Evelina; DiClemente, Ralph; Lorig, Kate

2010-01-01

Objectives Persons with serious mental illnesses (SMI) have elevated rates of comorbid medical conditions, but may also face challenges in effectively managing those conditions. Methods The study team developed and pilot-tested the Health and Recovery Program (HARP), an adaptation of the Chronic Disease Self-Management Program (CDSMP) for mental health consumers. A manualized, six-session intervention, delivered by mental health peer leaders, helps participants become more effective managers of their chronic illnesses. A pilot trial randomized 80 consumers with one or more chronic medical illness to either the HARP program or usual care. Results At six month follow-up, participants in the HARP program had a significantly greater improvement in patient activation than those in usual care (7.7% relative improvement vs. 5.7% decline, p=0.03 for group*time interaction), and in rates of having one or more primary care visit (68.4% vs. 51.9% with one or more visit, p=0.046 for group*time interaction). Intervention advantages were observed for physical health related quality of life (HRQOL), physical activity, medication adherence, and, and though not statistically significant, had similar effect sizes as those seen for the CDSMP in general medical populations. Improvements in HRQOL were largest among medically and socially vulnerable subpopulations. Conclusions This peer-led, medical self-management program was feasible and showed promise for improving a range of health outcomes among mental health consumers with chronic medical comorbidities. The HARP intervention may provide a vehicle for the mental health peer workforce to actively engage in efforts to reduce morbidity and mortality among mental health consumers. PMID:20185272

Common and unique associated factors for medically unexplained chronic widespread pain and chronic fatigue☆

PubMed Central

McBeth, J.; Tomenson, B.; Chew-Graham, C.A.; Macfarlane, G.J.; Jackson, J.; Littlewood, A.; Creed, F.H.

2015-01-01

Objective Chronic widespread pain and chronic fatigue share common associated factors but these associations may be explained by the presence of concurrent depression and anxiety. Methods We mailed questionnaires to a randomly selected sample of people in the UK to identify participants with chronic widespread pain (ACR 1990 definition) and those with chronic fatigue. The questionnaire assessed sociodemographic factors, health status, healthcare use, childhood factors, adult attachment, and psychological stress including anxiety and depression. To identify persons with unexplained chronic widespread pain or unexplained chronic fatigue; we examined participant's medical records to exclude medical illness that might cause these symptoms. Results Of 1443 participants (58.0% response rate) medical records of 990 were examined. 9.4% (N = 93) had unexplained chronic widespread pain and 12.6% (N = 125) had unexplained chronic fatigue. Marital status, childhood psychological abuse, recent threatening experiences and other somatic symptoms were commonly associated with both widespread pain and fatigue. No common effect was found for few years of education and current medical illnesses (more strongly associated with chronic widespread pain) or recent illness in a close relative, neuroticism, depression and anxiety scores (more strongly associated with chronic fatigue). Putative associated factors with a common effect were associated with unexplained chronic widespread pain or unexplained chronic fatigue only when there was concurrent anxiety and/or depression. Discussion This study suggests that the associated factors for chronic widespread pain and chronic fatigue need to be studied in conjunction with concurrent depression/anxiety. Clinicians should be aware of the importance of concurrent anxiety or depression. PMID:26652592

There Is No Shame in Pain: Coping and Functional Ability in Adolescents with Sickle Cell Disease.

ERIC Educational Resources Information Center

Robinson, M. Renee

1999-01-01

Discusses coping and personal adjustment to chronic pain for adolescents with sickle cell anemia and presents a model of illness behavior for these adolescents. Offers a framework of disease severity and disease impact, and suggests using functional ability as an index of coping and personal adjustment. Contains 59 references. (SLD)

Dealing with Chronic Illness: Experiences of Iranian Families of Persons with Multiple Sclerosis—A Qualitative Study

PubMed Central

Ebrahimi, Hossein; Hasankhani, Hadi; Namdar, Hossein; Fooladi, Marjaneh

2017-01-01

Background Today family members are providing care and support to each other during illness. In particular, in chronic illness, such as multiple sclerosis, the families are more involved in caring for and supporting their patients, so they use several strategies to cope with this situation. The purpose of this study was to explore the coping strategies in family caregivers of persons with multiple sclerosis in Iran. Methods This is a qualitative study that was conducted through 18 family caregivers of persons with multiple sclerosis. A purposeful sampling method was used. Data were collected through semistructured and in-depth interviews conducted in Multiple Sclerosis Society and hospitals of Tabriz in Iran. The collected data was analyzed according to qualitative content analysis. Results Five main categories were elicited from interviews: “using spirituality,” “living with hope,” “experiencing persistence and stability,” “seeking support,” and “seeking alternative treatments.” Conclusion. The study findings can help to inform the support given to families to help them cope with the effects of caring for someone with multiple sclerosis. Health system managers and professionals by using these results are able to support patients and their families appropriately in order to improve their quality of life and alleviate the complications of disease. PMID:29082042

Living with hepatitis C and treatment: the personal experiences of patients.

PubMed

Sgorbini, Myra; O'Brien, Louise; Jackson, Debra

2009-08-01

The purpose of the study was to explore the issues surrounding chronic hepatitis C, combination therapy and its impact on personal relationships to enhance understanding of the experiences of patients living with hepatitis C. This paper focuses on the experiences of the patients and their partners' experiences will be published separately. Patients with chronic hepatitis C who have active inflammatory changes on liver biopsy may undergo combination therapy with interferon and ribavirin. For some patients, the adverse effects of combination therapy are so severe that it can potentially place an enormous stress on personal relationships. The study was informed by Heideggerian phenomenology. Purposive sampling and semi-structured interviews of five patients and their partners were conducted between 2004-2006 in Sydney Australia, to obtain a rich description of their experiences. The findings from this study revealed that chronic hepatitis C and combination therapy had an enormous impact on the lives of the patients, their partners and families. The illness and treatment had significant physiological effects that had an impact on quality of life; however, the social and psychological consequences of living with a highly stigmatised disease with an unknown course and outcome cannot be underestimated. The results of this study lend support to the effectiveness of providing equitable services to persons diagnosed with chronic hepatitis C. However, additional research is needed to explore gender, socioeconomic, sexual-orientation, transmission, cultural, religious and genotype differences in this group to address their needs better. Nurses play a significant role in educating patients with chronic hepatitis C, advocating for them and helping them to achieve a reasonable state of well being. Through deeper understanding of their experiences of illness and treatment, nurses can move beyond the medical oriented approach to care.

People living with serious illness: stories of spirituality.

PubMed

Molzahn, Anita; Sheilds, Laurene; Bruce, Anne; Stajduhar, Kelli; Makaroff, Kara Schick; Beuthin, Rosanne; Shermak, Sheryl

2012-08-01

To examine stories of spirituality in people living with serious illness. Although knowledge about the experience of people with various chronic illnesses is growing, there is little known about peoples' beliefs and perspectives relating to spirituality where there is a diagnosis of a serious chronic and life-limiting illness. A social constructionist approach to narrative inquiry was used. In-depth narrative interviews were conducted on one occasion with 32 participants. This included 10 people with cancer, 14 people with end stage renal disease (ESRD) and eight people with HIV/AIDS. They ranged in age from 37-83 and included 18 men and 14 women. The themes were reflecting on spiritual religious and personal beliefs, crafting beliefs for their own lives, finding meaning and transcending beyond words. Participants melded various belief systems to fit their own lives. They also looked to find meaning in their illness experience and described what gave life meaning. For some aspects of these belief systems, participants could not or would not express themselves verbally, and it seemed that aspects of their experience were beyond language. The stories revealed considerable depth relating to perspectives on life, illness and existential questions, but many participants were not comfortable with the term 'spirituality'. Nurses must remain open to learning about belief systems of each individual in their care, regardless of that individual's declared religious affiliation or declaration of no religious affiliation, given that personal beliefs and practices do not always fit into specific categories. © 2012 Blackwell Publishing Ltd.

Web-based, self-management enhancing interventions with e-diaries and personalized feedback for persons with chronic illness: a tale of three studies.

PubMed

Nes, Andréa A G; Eide, Hilde; Kristjánsdóttir, Ólöf Birna; van Dulmen, Sandra

2013-12-01

Chronic illness places high demands on patients. Interventions supporting self-management and providing personalized feedback might help patients to gain new perspectives and enhance use of constructive self-management strategies. We developed three comparable web-based CBT-grounded interventions including e-diaries and feedback delivered through PDAs/smartphones. The feasibility and efficacy of these interventions have been investigated for patients with irritable bowel syndrome (in an RCT), chronic widespread pain (RCT) and type 2 diabetes (feasibility study). This is a descriptive study that summarizes the content, feasibility and efficacy of the interventions and discusses issues relevant for implementing this type of web-based therapeutic interventions in clinical practice. The web-based interventions appear feasible, acceptable and supportive. In a short and midterm time frame, the interventions promote self-management. Booster sessions may be needed for prolonged effects. Given the physical and mental symptoms of the patients under study and the nature of the intervention, providers who deliver the feedback need a health care background and training in this specific way of counseling. The results of the three studies suggest that personalized web-based interventions are effective and have the potential to support self-management in daily healthcare. Studies concerning clinical significance and implementation are needed. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

Personality disparity in chronic regional and widespread pain.

PubMed

Chang, Mei-Chung; Chen, Po-Fei; Lung, For-Wey

2017-08-01

Chronic pain has high comorbidity with psychiatric disorders, therefore, better understanding of the relationship between chronic pain and mental illness is needed. This study aimed to investigate the pathway relationships among parental attachment, personality characteristics, alexithymic trait and mental health in patients with chronic widespread pain, those with chronic regional pain, and controls. Two hundred and thirty participants were recruited. The parental Bonding Inventory, Eysenck Personality Inventory (EPI), 20-item Toronto Alexithymia Scale (TAS-20), Chinese Health Questionnaire, and Short-Form 36 were filled out. The pathway relationships revealed that patients of mothers who were more protective were more neurotic, had more difficulty identifying feelings (DIF), worse mental health, and a higher association with chronic widespread pain. No differences were found between patients with chronic regional pain and the controls. The predisposing factors for chronic widespread pain, when compared with chronic regional pain, may be more closely related to psychiatric disorders. The pathways to chronic regional pain and chronic widespread pain differ, with neuroticism and the alexithymic DIF trait being the main factors defining chronic widespread pain. Therefore, besides therapies targeting pain symptoms, psychiatric consultation, medication and psychotherapy are also recommended for those with chronic widespread pain to alleviate their mental health conditions. Copyright © 2017 Elsevier Ireland Ltd. All rights reserved.

[The situation of siblings of mentally ill people].

PubMed

Schmid, R; Spiessl, H; Cording, C

2005-12-01

The purpose of this article is to provide an overview of the current research regarding the situation of mentally ill persons. The relevant literature was identified by means of a computerized MEDLINE search on the years 1996 - 2004 with the key words "sibling" and "mentally ill"/"chronically ill"/"psychiatric disorder" (631 articles). Also the related articles in the MEDLINE search were viewed. Finally 170 articles of journals and books were included in the review. The situation of siblings of psychiatric ill has manifold aspects, which can be classified into the following categories: Burdens due to the relationship to the ill sibling, burdens because of the relations to the shared parents and other family members, and burdens in the daily life of the siblings due to the illness of his/her sibling. On the other side there are rewards and positive developments in their life because of the illness of the sibling. Personal variables like sex, family size and age at onset of the illness are an influence on the experience of the sibling. The revealed burdens of the affected siblings require necessary answers by political representatives, professionals in and outside a clinic, and the involved families.

Homeless Mentally Ill: Problems and Options in Estimating Numbers and Trends. Report to the Chairman, Committee on Labor and Human Resources, U.S. Senate.

ERIC Educational Resources Information Center

General Accounting Office, Washington, DC. Program Evaluation and Methodology Div.

In response to a request by the United States Senate Committee on Labor and Human Resources, the General Accounting Office (GAO) examined the methodological soundness of current population estimates of the number of homeless chronically mentally ill persons, and proposed several options for estimating the size of this population. The GAO reviewed…

EFFECTS OF RELIGIOUS VERSUS STANDARD COGNITIVE-BEHAVIORAL THERAPY ON OPTIMISM IN PERSONS WITH MAJOR DEPRESSION AND CHRONIC MEDICAL ILLNESS.

PubMed

Koenig, Harold G; Pearce, Michelle J; Nelson, Bruce; Daher, Noha

2015-11-01

We compared the effectiveness of religiously integrated cognitive behavioral therapy (RCBT) versus standard CBT (SCBT) on increasing optimism in persons with major depressive disorder (MDD) and chronic medical illness. Participants aged 18-85 were randomized to either RCBT (n = 65) or SCBT (n = 67) to receive ten 50-min sessions remotely (94% by telephone) over 12 weeks. Optimism was assessed at baseline, 12 and 24 weeks by the Life Orientation Test-Revised. Religiosity was assessed at baseline using a 29-item scale composed of religious importance, individual religious practices, intrinsic religiosity, and daily spiritual experiences. Mixed effects growth curve models were used to compare the effects of treatment group on trajectory of change in optimism. In the intention-to-treat analysis, both RCBT and SCBT increased optimism over time, although there was no significant difference between treatment groups (B = -0.75, SE = 0.57, t = -1.33, P = .185). Analyses in the highly religious and in the per protocol analysis indicated similar results. Higher baseline religiosity predicted an increase in optimism over time (B = 0.07, SE = 0.02, t = 4.12, P < .0001), and higher baseline optimism predicted a faster decline in depressive symptoms over time (B = -0.61, SE = 0.10, t = -6.30, P < .0001), both independent of treatment group. RCBT and SCBT are equally effective in increasing optimism in persons with MDD and chronic medical illness. While baseline religiosity does not moderate this effect, religiosity predicts increases in optimism over time independent of treatment group. © 2015 Wiley Periodicals, Inc.

Factors Related to Self-Care in Heart Failure Patients According to the Middle-Range Theory of Self-Care of Chronic Illness: a Literature Update.

PubMed

Jaarsma, Tiny; Cameron, Jan; Riegel, Barbara; Stromberg, Anna

2017-04-01

As described in the theory of self-care in chronic illness, there is a wide range of factors that can influence self-care behavior. The purpose of this paper is to summarize the recent heart failure literature on these related factors in order to provide an overview on which factors might be suitable to be considered to make self-care interventions more successful. Recent studies in heart failure patients confirm that factors described in the theory of self-care of chronic illness are relevant for heart failure patients. Experiences and skills, motivation, habits, cultural beliefs and values, functional and cognitive abilities, confidence, and support and access to care are all important to consider when developing or improving interventions for patients with heart failure and their families. Additional personal and contextual factors that might influence self-care need to be explored and included in future studies and theory development efforts.

The chronically ill grandparent in minority multigenerational family households: problems and solutions from three points of view.

PubMed

Banks, J; Cameron, W; Montague, M; Toliver, J; Hobbs, S; Peterson, L; Williams, R

1989-01-01

The Interactional Model of Family Systems was used as a basis for exploring the problems of the chronically ill grandparent from three points of view: the elder family member, the adult child, and the grandchild. A descriptive correlational study was utilized to collect data on a purposive sample of 10 minority families recruited from the Montgomery County Council of the National Council of Negro Women, personal contacts of the investigators, and referrals from a family physician who treats the chronically ill elder members. Data was obtained on the family environment, perceived support, physical health, and a variety of open-ended items dealing with specific difficulties and coping strategies. Findings identified ambivalent feelings, contradictory statements, and some dissatisfaction about their relations with other family members, not feeling needed, not having enough to do and feeling lonely. This information can be useful in designing and implementing a counseling intervention model for groups of multigenerational families who have similar situations and needs.

Reported Use of and Satisfaction with Vocational Rehabilitation Services among Lesbian, Gay, Bisexual, and Transgender Persons

ERIC Educational Resources Information Center

Dispenza, Franco; Hunter, Tameeka

2015-01-01

Purpose: Reported use of and satisfaction rates of vocational rehabilitation (VR) services among a small sample of lesbian, gay, bisexual, and transgender (LGBT) persons living with various chronic illness and disability (CID) conditions in the United States were explored. Method: Data were pulled from a larger data set that was collected via the…

[Subjective illness beliefs of Turkish migrants with mental disorders--specific characteristics compared to german patients].

PubMed

Franz, Michael; Lujić, Claudia; Koch, Eckhardt; Wüsten, Bernd; Yürük, Nergüz; Gallhofer, Bernd

2007-10-01

Knowledge about culture- and migration-specific characteristics of subjective illness beliefs in Turkish patients is necessary for adequate treatment. Analysis of subjective illness beliefs in Turkish patients (F3; F4; n = 79) in comparison to matched Germans (n = 79) using a modified version of the Illness Perception Questionnaire IPQ-R. Differences were explored by t-tests and chi(2)-tests. Turkish patients believed significantly stronger in a chronical timeline of illness and in negative illness consequences, while German patients believed significantly stronger in treatment control and personal control. Turkish patients more often mentioned external causes of their disease compared to Germans. The results provide explanations of the deficient health care situation for Turkish migrants in Germany.

Chronic disease management: implementation and coordination of healthcare systems for depressed elderly persons.

PubMed

Severinsson, Elisabeth; Holm, Anne Lise

2014-12-01

The aim of this study was to evaluate the implementation of the research-based Chronic Care Model (CCM), discuss methods and summarise research recommendations for improving the care of depressed elderly persons. Interviews were conducted and state-of-the-art reviews employed. Three important areas emerged: (1) barriers to and facilitating factors in the implementation of the CCM; (2) the challenges involved in re-designing the delivery system and interdisciplinary team collaboration; and (3) empirical evidence pertaining to self-management support and how older persons manage to live with depressive ill-health. In conclusion, implementation research requires evidence-based knowledge, staff involvement and familiarity with the context in which development occurs.

Access to Mobile Communication Technology and Willingness to Participate in Automated Telemedicine Calls Among Chronically Ill Patients in Honduras

PubMed Central

Mendoza-Avelares, Milton O.; Milton, Evan C.; Lange, Ilta; Fajardo, Roosevelt

2010-01-01

Abstract Objectives: Patients in underdeveloped countries may be left behind by advances in telehealthcare. We surveyed chronically ill patients with low incomes in Honduras to measure their use of mobile technologies and willingness to participate in mobile disease management support. Materials and Methods: 624 chronically ill primary care patients in Honduras were surveyed. We examined variation in telephone access across groups defined by patients' sociodemographic characteristics, diagnoses, and access to care. Logistic regression was used to identify independent correlates of patients' interest in automated telephonic support for disease management. Results: Participants had limited education (mean 4.8 years), and 65% were unemployed. Eighty-four percent had telephone access, and 78% had cell phones. Most respondents had voicemail (61%) and text messaging (58%). Mobile technologies were particularly common among patients who had to forego clinic visits and medications due to cost concerns (each p < 0.05). Most patients (>80%) reported that they would be willing to receive automated calls focused on appointment reminders, medication adherence, health status monitoring, and self-care education. Patients were more likely to be willing to participate in automated telemedicine services if they had to cancel a clinic appointment due to transportation problems or forego medication due to cost pressures. Conclusions: Even in this poor region of Honduras, most chronically ill patients have access to mobile technology, and most are willing to participate in automated telephone disease management support. Given barriers to in-person care, new models of mobile healthcare should be developed for chronically ill patients in developing countries. PMID:21062234

CAREGIVERS OF THE CHRONICALLY CRITICALLY ILL AFTER DISCHARGE FROM THE INTENSIVE CARE UNIT: SIX MONTHS’ EXPERIENCE

PubMed Central

Choi, JiYeon; Donahoe, Michael P.; Zullo, Thomas G.; Hoffman, Leslie A.

2011-01-01

Background Chronically critically ill patients typically undergo an extended recovery after discharge from the intensive care unit, making involvement of family caregivers essential. Prior studies provide limited detail about specific ways this experience affects caregivers. Objectives To (1) describe lifestyle restrictions and distress among caregivers of chronically critically ill patients 1 and 6 months after discharge and (2) explore how caregivers’ lifestyle restrictions and distress differ according to patients’ and caregivers’ characteristics. Methods Sixty-nine chronically critically ill patients and their family caregivers completed follow-up at 1 and 6 months after discharge from the intensive care unit. Data were collected from medical records and survey via telephone or mail. Results Caregivers’ perceived lifestyle restrictions (Changes in Role Function) decreased from 1 month (mean [SD], 23.0 [8.3]) to 6 months (19.4 [8.6]) after discharge (P = .003), although patients’ problem behaviors and caregivers’ distress (8.9 [9.3] vs 7.9 [9.6], respectively; P = .32) did not change. Change in caregivers’ lifestyle restrictions differed by patients’ disposition (P = .02) and functional status (Health Assessment Questionnaire; P = .007). Caregiver’s lifestyle restrictions remained high when patients never returned home or never recovered their preadmission functional status. Caregivers reported the most restrictions in social life and personal recreation. Patients’ negative emotions and pain caused the most caregiver distress. Conclusions Caregivers of chronically critically ill patients perceived fewer lifestyle restrictions over time but reported no change in patients’ problem behaviors or distress. Lifestyle restrictions and distress remained high when patients never returned home or regained their preadmission functional status. PMID:21196567

Caregivers of the chronically critically ill after discharge from the intensive care unit: six months' experience.

PubMed

Choi, JiYeon; Donahoe, Michael P; Zullo, Thomas G; Hoffman, Leslie A

2011-01-01

Chronically critically ill patients typically undergo an extended recovery after discharge from the intensive care unit, making involvement of family caregivers essential. Prior studies provide limited detail about specific ways this experience affects caregivers. To (1) describe lifestyle restrictions and distress among caregivers of chronically critically ill patients 1 and 6 months after discharge and (2) explore how caregivers' lifestyle restrictions and distress differ according to patients' and caregivers' characteristics. Sixty-nine chronically critically ill patients and their family caregivers completed follow-up at 1 and 6 months after discharge from the intensive care unit. Data were collected from medical records and survey via telephone or mail. Caregivers' perceived lifestyle restrictions (Changes in Role Function) decreased from 1 month (mean [SD], 23.0 [8.3]) to 6 months (19.4 [8.6]) after discharge (P = .003), although patients' problem behaviors and caregivers' distress (8.9 [9.3] vs 7.9 [9.6], respectively; P = .32) did not change. Change in caregivers' lifestyle restrictions differed by patients' disposition (P = .02) and functional status (Health Assessment Questionnaire; P = .007). Caregiver's lifestyle restrictions remained high when patients never returned home or never recovered their preadmission functional status. Caregivers reported the most restrictions in social life and personal recreation. Patients' negative emotions and pain caused the most caregiver distress. Caregivers of chronically critically ill patients perceived fewer lifestyle restrictions over time but reported no change in patients' problem behaviors or distress. Lifestyle restrictions and distress remained high when patients never returned home or regained their preadmission functional status.

What parents of seriously ill children value: parent-to-parent connection and mentorship.

PubMed

Konrad, Shelley Cohen

2007-01-01

The value of parent-to-parent support has been noted in research with parents of children who have a range of special needs and chronic medical conditions, however, less is known about the benefit of such mentorship for parents caring for seriously ill and dying children. Findings from a qualitative study with mothers of seriously ill children, including those whose children had died, provided rich and detailed information about the personal and practical resources they received from other parents. Personal recommendations to parents by parents included the value of seeking out mentorship and appreciating the small things in life, while practical suggestions encompassed encouraging parents to become informed and to advocate for their children's best interests. Mothers also identified professionals with end-of-life training as instrumental agents of support.

Holistic Health Status Questionnaire: developing a measure from a Hong Kong Chinese population.

PubMed

Chan, Choi Wan; Wong, Frances Kam Yuet; Yeung, Siu Ming; Sum, Fok

2016-02-25

The increased prevalence of chronic diseases is a global health issue. Once chronic disease is diagnosed, individuals face lifelong healthcare treatments, and the disabilities and disturbances resulting from their illness will affect the whole person. A valid tool that can measure clients' holistic care needs is important to enable us to identify issues of concern and address them early to prevent further complications. This study aimed to develop and evaluate the psychometric properties of a scale measuring holistic health among chronically ill individuals. The research was an instrument development and validation study using three samples of Hong Kong Chinese people. The first sample (n = 15) consisted of stroke survivors who had experienced disruption of their total being, and was used as a basis for the generation of scale items. In the second and third samples (n = 319, n = 303), respondents with various chronic illnesses were assessed in order to estimate the psychometric properties of the scale. A total of 52 items were initially generated, and 7 items with a factor loading less than 0.3 were removed in the process, as substantiated by the literature and expert panel reviews. Exploratory factor analysis identified a 45-item, 8-factor Holistic Health Status Questionnaire (HHSQ) that could account for 56.38 % of the variance. The HHSQ demonstrated content validity, acceptable internal consistency (0.59-0.92) and satisfactory convergent validity from moderate to high correlation with similar constructs (r ≥ 0.46, p < 0.01). The HHSQ tapped into the relational experiences and connectedness among the bio-psycho-social-spiritual dimensions of a Chinese person with chronic disease, with acceptable psychometric properties.

In-Person Versus eHealth Mindfulness-Based Intervention for Adolescents With Chronic Illness: Protocol for a Randomized Controlled Trial

PubMed Central

Kaufman, Miriam; Malboeuf-Hurtubise, Catherine; Kohut, Sara Ahola; Viner, Christine; Locke, Jake; Vo, Dzung X

2017-01-01

Background Eight-week mindfulness-based interventions (MBIs) have a beneficial impact on mental health and well-being in adolescents with chronic health conditions. Usually delivered in person in a group setting, these programs are difficult to access for teens with disabilities or who do not have in-person MBIs available in their communities. Objective This paper outlines the rationale, development, and design of a randomized controlled trial comparing the effects of an MBI delivered in person or via eHealth in adolescents with a chronic illness. Quantitative outcomes will include mindfulness skills acquisition (primary outcome), effects of the MBI on self-reported mood, anxiety, self-esteem, illness perception, and physiological stress (via salivary cortisol), and qualitative outcomes will include individual practice, participant appreciation, and adaptation of the MBI for eHealth. Methods This is a randomized noninferiority mixed methods study comparing 2 MBI arms: in-person and eHealth. Participants are eligible to participate if they are aged 13 to 18 years, have a diagnosis of chronic medical condition, live close enough to the recruitment hospital to participate in the in-person arm of the study, and are currently followed by a health care provider. Each participant will receive an adapted 8-week MBI delivered either in person at a tertiary pediatric hospital or via a secure audio-visual platform allowing group interactions in real time. Groups will be facilitated by 2 experienced mindfulness providers. Quantitative and qualitative data will be collected through standardized research questionnaires administered via a secure, youth-friendly online platform and through semistructured interviews, participant log books, facilitator log books, and salivary cortisol analysis. Qualitative data will be analyzed using a grounded theory model. Results Data collection is currently underway. Data analysis, manuscript writing, and additional publications are expected to be completed in the winter and spring of 2018. Conclusions Based on previous results from in-person trials conducted in adolescents and eHealth trials conducted in adults, we anticipate that both modes of delivery will significantly improve mindfulness skills acquisition, mood, anxiety, self-esteem, illness perception, and stress and that the magnitude of the effects will be correlated to the level of home practice. We predict that participants in both arms will show similar levels of home practice and that both modes of delivery will have high levels of feasibility and acceptability. If successful, this study could provide evidence for the use of eHealth in the delivery of 8-week MBIs in clinical adolescent populations, potentially increasing availability to MBIs for a large group of youth with mobility issues or living away from large urban centers. Trial Registration ClinicalTrials.org NCT03067207; https://clinicaltrials.gov/ct2/show/NCT03067207 (archived by WebCite at http://www.webcitation.org/6v4ZK8RBH) PMID:29180345

The Role of Hope for Adolescents with a Chronic Illness: An Integrative Review.

PubMed

Griggs, Stephanie; Walker, Rachel K

2016-01-01

Hope is a human strength essential for adolescents' enduring and coping with chronic illness however, the role of hope is not well understood in this population. This integrative review describes what is currently known about the role of hope in adolescents with a chronic illness. A methodological review using an integrative approach by R. Whittemore and K. Knafl (2005) was performed. MEDLINE via Pubmed; CINAHL; PyscINFO and Google scholar were searched for articles published in peer-reviewed journals from 1995 to 2015, using search terms 'hope and chronic illness' with age limiters for all except Google scholar (title search of "hope and adolescents"). Of the 197 studies initially retrieved: a total of 27 quantitative studies, 8 qualitative studies and 19 theoretical works were selected for review. Seven themes emerged including that hope: (i) promotes health (ii) facilitates coping and adjustment, (iii) enhances quality of life, (iv) is essential in purpose in life and illness (v) improves self-esteem, (vi) is an important factor in resilience and (vii) affects maturation. Persons reporting higher levels of hope find multiple routes to goals, view setbacks as challenges, and better manage psychological symptoms. Although theory and a limited body of empirical research to date suggest a link between hopeful thinking and physical health, the specific mechanisms remain unclear. As hope is linked to resilience, further research should explore whether adolescents with higher hope return to baseline faster than their lower hope counterparts. Copyright © 2016 Elsevier Inc. All rights reserved.

Illness perceptions among cardiac patients: Relation to depressive symptomatology and sex

PubMed Central

Grace, Sherry L.; Krepostman, Suzan; Brooks, Dina; Arthur, Heather; Scholely, Pat; Suskin, Neville; Jaglal, Susan; Abramson, Beth L.; Stewart, Donna E.

2010-01-01

Objective This study examined cardiovascular disease (CVD) illness perceptions and how they relate to depressive symptomatology among women and men. Methods Acute coronary syndrome (ACS) patients at two hospitals were approached, and 661 consented to participate (504 men, 157 women; 75% response rate). Participants completed a survey including the Hospital Anxiety and Depression Scale (HADS) and Illness Perception Questionnaire (IPQ). Results Women perceived a significantly more chronic course (P<.001) and more cyclical episodes (P<.05)than men did, while men perceived greater personal control (P<.001) and treatability (P<.05)than women did. Participants perceived diet, heredity, and stress as the greatest CVD causes. For women (F=5.49, P<.001), greater depressive symptomatology was significantly related to younger age (P<.05), lower activity status (P<.001), and perceiving a chronic time course (P<.01). For men (F=7.68, P<.001), greater depressive symptomatology was significantly related to being non-white (P<.05), lower activity status (P<.001), less exercise behavior (P=.01), and three illness perceptions, namely, perceiving a chronic course (P<.05), greater consequences (P<.001), and lower treatability (P<.05). Conclusion Women, compared with men, are more likely to attribute CVD to causes beyond their control and to perceive CVD as a chronic, untreatable condition. Illness perceptions were related to depressive symptomatology, which suggests that interventions to reframe these perceptions may be warranted to improve emotional health in the context of CVD. PMID:16198188

Impact of chronic illness on child and family: an overview based on five surveys with implications for management.

PubMed

Satterwhite, B B

1978-01-01

For the past eight years the Rochester Child Health Group has systematically investigated chronic illness in childhood with the goal of minimizing the psychosocial sequelae of chronic illness through more optimal management. This overview examines the impact of chronic illness on 404 children and their families in five separate studies: 1) 209 children in a follow-up of all children with chronic symptoms in a previous random sampling of children; 2) 42 children with juvenile arthritis; 3) 44 nephrotic children; 4) 54 asthmatic children; 5) 55 chronically ill children living in rural areas of Western New York. Information was obtained through parental interviews, school reports, and psychological testing of the child. The percentage of parents reporting impact of the child's illness on family differed according to study population. The percentage reporting areas of impact according to severity of the illness is as follows: worry, 75--97; financial, 46--60; fatigue of parent, 31--65; change in sleep arrangements, 17--31; change in furnishings, 15--40; less social life for parents, 12--35; restrictions on travel, 13--40; parental friction, 9--20; sibling neglect, 10--20; sibling resentment, 10--25; embarrassment, 12--20; interference from relatives, 5--17. Over half the parents felt their child's future education, job chances, and social life would be affected. One third reported activity limitations. Compared to a control group of children, a significantly greater percentage of parents of the chronically ill reported teacher concern about their child's effort and behavior, and showed concern about the child having too few friends. Two of the three studies in which psychological appraisals were obtained suggested that more of the ill children than controls showed indices of maladjustment. School information from two studies showed more of the ill children than controls underachieving and being referred to a school psychologist. Work by the Rochester Child Health Group has pointed up several ways in which providers of care can more optimally assist families in order to minimize these problems: 1) identifying families at risk at the onset to find which families may require special support; 2) Assuring that family and all care providers know who is orchestrating care, and that all areas of care are being provided; 3) Assuring that where necessary, an outreach person is meeting the needs of the family and child on an intensive, sustained, caring and creative basis.

Social Networks, the ‘Work’ and Work Force of Chronic Illness Self-Management: A Survey Analysis of Personal Communities

PubMed Central

Vassilev, Ivaylo; Rogers, Anne; Blickem, Christian; Brooks, Helen; Kapadia, Dharmi; Kennedy, Anne; Sanders, Caroline; Kirk, Sue; Reeves, David

2013-01-01

Self-management support forms a central aspect of chronic Illness management nationally and globally. Evidence for the success of self-management support has mainly focussed on individually-centred outcomes of behavioural change. While it is recognised that social network members play an important role there is currently a gap in knowledge regarding who provides what type of support and under what circumstances. This is relevant for understanding the division of labour and the meeting of needs for those living with a long-term condition. We therefore took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management. Whilst partners and close family make the highest contributions there is evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner. This indicates a degree of substitutability between differently constituted networks, and that the level and type of input by different members of a network might change according to circumstances. A network perspective offers an opportunity to redress the balance of an exclusively individual focus on self-management because it addresses the broader set of contributions and resources available to people in need of chronic illness management and support. PMID:23565162

Illness perception differences between Russian- and Hebrew-speaking Israeli oncology patients.

PubMed

Popov, Nadia; Heruti, Irit; Levy, Sigal; Lulav-Grinwald, Doron; Bar-Sela, Gil

2014-03-01

Illness perception influences health and illness behaviors. This study was designed to estimate illness perception differences between Russian-speaking and Hebrew-speaking Israeli oncology patients. Changes in illness perception associated with time spent in Israel among Russian-speaking patients were also evaluated. Additionally, we evaluated differences in illness perception of patients exposed to Chernobyl's consequences. A total of 144 oncology patients (77 Hebrew-speaking, 67 Russian-speaking) completed personal data questionnaires and The illness perception questionnaire revised, translated into Russian for this study. Significantly more Russian-speaking oncology patients perceived their illness as chronic and having negative consequences on life (p < .01). Russian-speaking oncology patients tend to have a more negative perception of cancer compared to Hebrew-speaking patients. Time spent in Israel may create more positive perceptions of cancer among these patients. No illness perception differences were found concerning Chernobyl consequences.

Stress, lifestyle, and quality of life in midlife and older Australian women: results from the Stress and the Health of Women Study.

PubMed

Seib, Charrlotte; Whiteside, Eliza; Lee, Kathryn; Humphreys, Janice; Tran, Tiet Hanh Dao; Chopin, Lisa; Anderson, Debra

2014-01-01

Chronic psychological stress may pose a serious threat to health, although the mechanisms are not fully understood. This study examines the impact of stress on modifiable lifestyle factors, depressive symptoms, health-related quality of life (HRQOL) and chronic illness in older Australian women. Cross-sectional data were collected from a random sample of 181 older adults aged 60 to 70 years from rural and urban areas of South-East Queensland, Australia. We used structural equation modelling to examine associations between stress, modifiable lifestyle factors, HRQOL, and chronic illness. Parameter estimates show that older women who reported life stressors where they felt helpless and feared for their life (high-magnitude stressors) also reported higher body mass index (p = .03) and more chronic illness (p < .01). In contrast, duration of exposure to life stressors was associated with higher depressive symptom scores (Center for Epidemiologic Studies Depression Scale; p = .02) and sleep disturbance scores (p < .01). Our findings support the link between traumatic personal histories (exposure to high-magnitude stressors) and unhealthy lifestyle factors. Findings highlight the need for more research on how stress reduction, a healthy lifestyle, and positive coping strategies can be used to reduce the effects of high-magnitude stress on HRQOL and chronic illness. Copyright © 2014 Jacobs Institute of Women's Health. Published by Elsevier Inc. All rights reserved.

Chronic stressors and trauma: prospective influences on the course of bipolar disorder

PubMed Central

Gershon, A.; Johnson, S. L.; Miller, I.

2013-01-01

Background Exposure to life stress is known to adversely impact the course of bipolar disorder. Few studies have disentangled the effects of multiple types of stressors on the longitudinal course of bipolar I disorder. This study examines whether severity of chronic stressors and exposure to trauma are prospectively associated with course of illness among bipolar patients. Method One hundred and thirty-one participants diagnosed with bipolar I disorder were recruited through treatment centers, support groups and community advertisements. Severity of chronic stressors and exposure to trauma were assessed at study entry with in-person interviews using the Bedford College Life Event and Difficulty Schedule (LEDS). Course of illness was assessed by monthly interviews conducted over the course of 24 months (over 3000 assessments). Results Trauma exposure was related to more severe interpersonal chronic stressors. Multiple regression models provided evidence that severity of overall chronic stressors predicted depressive but not manic symptoms, accounting for 7.5% of explained variance. Conclusions Overall chronic stressors seem to be an important determinant of depressive symptoms within bipolar disorder, highlighting the importance of studying multiple forms of life stress. PMID:23419615

Chronic stressors and trauma: prospective influences on the course of bipolar disorder.

PubMed

Gershon, A; Johnson, S L; Miller, I

2013-12-01

Exposure to life stress is known to adversely impact the course of bipolar disorder. Few studies have disentangled the effects of multiple types of stressors on the longitudinal course of bipolar I disorder. This study examines whether severity of chronic stressors and exposure to trauma are prospectively associated with course of illness among bipolar patients. One hundred and thirty-one participants diagnosed with bipolar I disorder were recruited through treatment centers, support groups and community advertisements. Severity of chronic stressors and exposure to trauma were assessed at study entry with in-person interviews using the Bedford College Life Event and Difficulty Schedule (LEDS). Course of illness was assessed by monthly interviews conducted over the course of 24 months (over 3000 assessments). Trauma exposure was related to more severe interpersonal chronic stressors. Multiple regression models provided evidence that severity of overall chronic stressors predicted depressive but not manic symptoms, accounting for 7.5% of explained variance. Overall chronic stressors seem to be an important determinant of depressive symptoms within bipolar disorder, highlighting the importance of studying multiple forms of life stress.

'Sometimes it feels as if the world goes on without me': adolescents' experiences of living with chronic fatigue syndrome.

PubMed

Winger, Anette; Ekstedt, Mirjam; Wyller, Vegard B; Helseth, Sølvi

2014-09-01

To explore the experience of being an adolescent with chronic fatigue syndrome. Despite ample research, chronic fatigue syndrome is still poorly understood, and there are still controversies related to the illness. Adolescents with chronic fatigue syndrome are often unable to attend school and lose social relations with friends. The challenges they face will affect their quality of life. A qualitative, phenomenological hermeneutical design. Six boys and twelve girls, aged 12-18, were interviewed, emphasising their own experiences living with chronic fatigue syndrome. Analyses were performed using a phenomenological hermeneutical method. The core theme, 'Sometimes it feels as if the world goes on without me', encompasses the feelings an adolescent living with chronic fatigue syndrome might have about life. The core theme was supported by four subthemes: 'On the side of life--locked in and shut out'; 'the body, the illness and me'; 'if the illness is not visible to others, does it exist?'; and 'handling life while hoping for a better future'. The subthemes reflect the experience of social isolation, their own and others' understanding of the illness and hope for the future. Not being able to be with friends, or attend school, made the adolescents feel different and forgotten. They felt alienated in their own bodies and were struggling to be visible to themselves and to their surroundings. Spending less time with friends and more time with their parents constituted a threat to independence and development. Yet they managed to envision a better future despite all the difficulties. To provide effective support and constructive relations to adolescents with chronic fatigue syndrome, all health professions involved need insight from the persons who are themselves ill. Health centres could function as resource centres for patients and healthcare professionals. © 2013 John Wiley & Sons Ltd.

Illness perceptions in adult congenital heart disease: A multi-center international study.

PubMed

Rassart, Jessica; Apers, Silke; Kovacs, Adrienne H; Moons, Philip; Thomet, Corina; Budts, Werner; Enomoto, Junko; Sluman, Maayke A; Wang, Jou-Kou; Jackson, Jamie L; Khairy, Paul; Cook, Stephen C; Subramanyan, Raghavan; Alday, Luis; Eriksen, Katrine; Dellborg, Mikael; Berghammer, Malin; Johansson, Bengt; Rempel, Gwen R; Menahem, Samuel; Caruana, Maryanne; Veldtman, Gruschen; Soufi, Alexandra; Fernandes, Susan M; White, Kamila S; Callus, Edward; Kutty, Shelby; Luyckx, Koen

2017-10-01

Illness perceptions are cognitive frameworks that patients construct to make sense of their illness. Although the importance of these perceptions has been demonstrated in other chronic illness populations, few studies have focused on the illness perceptions of adults with congenital heart disease (CHD). This study examined (1) inter-country variation in illness perceptions, (2) associations between patient characteristics and illness perceptions, and (3) associations between illness perceptions and patient-reported outcomes. Our sample, taken from APPROACH-IS, consisted of 3258 adults with CHD from 15 different countries. Patients completed questionnaires on illness perceptions and patient-reported outcomes (i.e., quality of life, perceived health status, and symptoms of depression and anxiety). Patient characteristics included sex, age, marital status, educational level, employment status, CHD complexity, functional class, and ethnicity. Linear mixed models were applied. The inter-country variation in illness perceptions was generally small, yet patients from different countries differed in the extent to which they perceived their illness as chronic and worried about their illness. Patient characteristics that were linked to illness perceptions were sex, age, employment status, CHD complexity, functional class, and ethnicity. Higher scores on consequences, identity, and emotional representation, as well as lower scores on illness coherence and personal and treatment control, were associated with poorer patient-reported outcomes. This study emphasizes that, in order to gain a deeper understanding of patients' functioning, health-care providers should focus not only on objective indicators of illness severity such as the complexity of the heart defect, but also on subjective illness experiences. Copyright © 2017 Elsevier B.V. All rights reserved.

[The psychosomatics of chronic back pain. Classification, aetiology and therapy].

PubMed

Henningsen, P

2004-05-01

An overview is given on the current classification, description and treatment of chronic pain with causally relevant psychological factors. It is based on the "practice guidelines on somatoform disorders" and on a thematically related meta-analysis. The classificatory problems, especially of the demarcation of somatoform and other chronic pain, are presented. Additional descriptive dimensions of the relevant psychosocial factors are: pain description, other organically unexplained pain- and non-pain-symptoms, anxiety and depression, disease conviction and illness behaviour, personality and childhood abuse. A modified psychotherapy for (somatoform) chronic pain is outlined. Finally, this aetiologically oriented psychosomatic-psychiatric approach is compared to psychological coping models for chronic pain.

National Estimates of Out-of-Pocket Health Care Expenditure Burdens Among Nonelderly Adults With Cancer: 2001 to 2008

PubMed Central

Bernard, Didem S.M.; Farr, Stacy L.; Fang, Zhengyi

2011-01-01

Purpose To compare the prevalence of high out-of-pocket burdens among patients with cancer with other chronically ill and well patients, and to examine the sociodemographic characteristics associated with high burdens among patients with cancer. Methods The sample included persons 18 to 64 years of age who received treatment for cancer, taken from a nationally representative sample of the US population from the 2001 to 2008 Medical Expenditure Panel Survey. We examined the proportion of persons living in families with high out-of-pocket burdens associated with medical spending, including insurance premiums, relative to income, defining high health care (total) burden as spending more than 20% of income on health care (and premiums). Results The risk of high burdens is significantly greater for patients with cancer compared with other chronically ill and well patients. We find that 13.4% of patients with cancer had high total burdens, in contrast to 9.7% among those with other chronic conditions and 4.4% among those without chronic conditions. Among nonelderly persons with cancer, the following were associated with higher out-of-pocket burdens: private nongroup insurance, age 55 to 64 years, non-Hispanic black, never married or widowed, one child or no children, unemployed, lower income, lower education level, living in nonmetropolitan statistical areas, and having other chronic conditions. Conclusion High burdens may affect treatment choice and deter patients from getting care. Thus, although a detailed patient-physician discussion of costs of care may not be feasible, we believe that an awareness of out-of-pocket burdens among patients with cancer is useful for clinical oncologists. PMID:21632508

Complexity and Health Coaching: Synergies in Nursing

PubMed Central

Mitchell, Gail J.; Wong, Winnie; Rush, Danica

2013-01-01

Health care professionals are increasingly aware that persons are complex and live in relation with other complex human communities and broader systems. Complex beings and systems are living and evolving in nonlinear ways through a process of mutual influence. Traditional standardized approaches in chronic disease management do not address these non-linear linkages and the meaning and changes that impact day-to-day life and caring for self and family. The RN health coach role described in this paper addresses the complexities and ambiguities for persons living with chronic illness in order to provide person-centered care and support that are unique and responsive to the context of persons' lives. Informed by complexity thinking and relational inquiry, the RN health coach is an emergent innovation of creative action with community and groups that support persons as they shape their health and patterns of living. PMID:24102025

Diagnoses Treated in Ambulatory Care Among Homeless-Experienced Veterans

PubMed Central

Gabrielian, Sonya; Yuan, Anita H.; Andersen, Ronald M.; Gelberg, Lillian

2016-01-01

Purpose: Little is known about how permanent supported housing influences ambulatory care received by homeless persons. To fill this gap, we compared diagnoses treated in VA Greater Los Angeles (VAGLA) ambulatory care between Veterans who are formerly homeless—now housed/case managed through VA Supported Housing (“VASH Veterans”)—and currently homeless. Methods: We performed secondary database analyses of homeless-experienced Veterans (n = 3631) with VAGLA ambulatory care use from October 1, 2010 to September 30, 2011. We compared diagnoses treated—adjusting for demographics and need characteristics in regression analyses—between VASH Veterans (n = 1904) and currently homeless Veterans (n = 1727). Results: On average, considering 26 studied diagnoses, VASH (vs currently homeless) Veterans received care for more (P < .05) diagnoses (mean = 2.9/1.7). Adjusting for demographics and need characteristics, VASH Veterans were more likely (P < .05) than currently homeless Veterans to receive treatment for diagnoses across categories: chronic physical illness, acute physical illness, mental illness, and substance use disorders. Specifically, VASH Veterans had 2.5, 1.7, 2.1, and 1.8 times greater odds of receiving treatment for at least 2 condition in these categories, respectively. Among participants treated for chronic illnesses, adjusting for predisposing and need characteristics, VASH (vs currently homeless) Veterans were 9%, 8%, and 11% more likely to have 2 or more visits for chronic physical illnesses, mental illnesses, and substance use disorder, respectively. Conclusion: Among homeless-experienced Veterans, permanent supported housing may reduce disparities in the treatment of diagnoses commonly seen in ambulatory care. PMID:27343544

Changing choices: disabled and chronically ill people's experiences of reconsidering choices.

PubMed

Baxter, Kate

2013-06-01

To increase understanding of disabled and chronically ill people's experiences of revisiting choices by considering events that prompted people to reconsider choices; what factors motivated them to act upon these events and what factors affected their experiences of revisiting choices. A sub-sample of 20 disabled and chronically ill people who took part in a qualitative, longitudinal study exploring choice-making in the context of changing circumstances. Each person was interviewed three times. Analysis focussed on choices that people had been prompted to revisit. Most choices were about health or social care and were revisited within a year due to: changes in health or social circumstances; poorer than expected outcomes; and external interventions. People were motivated to make changes by a desire to maintain independence and control, but perceived short-term costs of decision-making could act as a deterrent. Experiences of revisiting choices were affected by help from other people and emotional strength. Making and revisiting choices is complex; people need support to engage with the continual cycle of choice-making. People who instigate revisions of their own accord may be particularly vulnerable to lack of support.

The Chronically Ill Child in the School.

ERIC Educational Resources Information Center

Sexson, Sandra; Madan-Swain, Avi

1995-01-01

Examines the effects of chronic illness on the school-age population. Facilitating successful functioning of chronically ill youths is a growing problem. Focuses on problems encountered by the chronically ill student who has either been diagnosed with a chronic illness or who has survived such an illness. Discusses the role of the school…

Women, weight, poverty and menopause: understanding health practices in a context of chronic disease prevention.

PubMed

Audet, Mélisa; Dumas, Alex; Binette, Rachelle; Dionne, Isabelle J

2017-11-01

Socioeconomic inequalities in health persist despite major investments in illness prevention campaigns and universal healthcare systems. In this context, the increased risks of chronic diseases of specific sub-groups of vulnerable populations should be further investigated. The objective of this qualitative study is to examine the interaction between socioeconomic status (SES) and body weight in order to understand underprivileged women's increased vulnerability to chronic diseases after menopause. By drawing specifically on Pierre Bourdieu's sociocultural theory of practice, 20 semi-structured interviews were conducted from May to December of 2013 to investigate the health practices of clinically overweight, postmenopausal women living an underprivileged life in Canada. Findings emphasise that poor life conditions undermine personal investment in preventive health and weight loss, showing the importance for policy makers to bring stronger consideration on upstream determinants of health. © 2017 Foundation for the Sociology of Health & Illness.

Disease Knowledge, Illness Perceptions, and Quality of Life in Adolescents With Sickle Cell Disease: Is There a Link?

PubMed Central

Asnani, Monika Rani; Barton-Gooden, Antoinette; Grindley, Marlyn; Knight-Madden, Jennifer

2017-01-01

Disease knowledge, illness perceptions, and quality of life (QOL) were examined in 150 adolescents (mean age = 16.1 years, SD = 1.9; 49.3% males) with sickle cell disease (SCD). Females had higher knowledge (P = .004), lower QOL (P = .02), and perceived their illness to be more unpredictable (P = .03). Those with more severe disease perceived their illness to be unpredictable with worse outcomes. Those with higher knowledge scores perceived their illness to be chronic, made more sense of their illness, and perceived greater personal and treatment control. Final hierarchical regression model showed that secondary education as compared to primary education level (P < .001) was positively correlated whereas disease severity (P < .001), perceived unpredictability (P = .024), and negative emotions (P < .001) were negatively correlated with QOL. Health practitioners should assess adolescents’ illness perceptions and encouraging continuing schooling and addressing emotional/psychological problems could improve their QOL. PMID:29152543

Personal Prayer in Patients Dealing with Chronic Illness: A Review of the Research Literature

PubMed Central

Jors, Karin; Baumann, Klaus

2015-01-01

Background. Prayer is commonly used among patients for health purposes. Therefore, this review focused on three main questions: (1) why do people turn to prayer in times of illness?, (2) what are the main topics of their prayers?, and (3) how do they pray? Method. We undertook a systematic review of the literature by searching the databases PubMed, Medline, and PsycINFO. The following inclusion criteria were used: (1) participants in the study were patients dealing with an illness, (2) the study examined the use of private rather than intercessory prayer, and (3) the content and purpose of prayer rather than its effects were investigated. Results. 16 articles were included in the final review. Participants suffered from a variety of chronic diseases, mostly cancer. Five main categories for the reasons and topics of prayer were found: (1) disease-centered prayer, (2) assurance-centered prayer, (3) God-centered prayer, (4) others-centered prayer, and (5) lamentations. Among these, disease-centered prayer was most common. Conclusions. Although most patients with chronic diseases do pray for relief from their physical and mental suffering, the intention of their prayers is not only for healing. Rather, prayer can be a resource that allows patients to positively transform the experience of their illness. PMID:25815041

Personal prayer in patients dealing with chronic illness: a review of the research literature.

PubMed

Jors, Karin; Büssing, Arndt; Hvidt, Niels Christian; Baumann, Klaus

2015-01-01

Background. Prayer is commonly used among patients for health purposes. Therefore, this review focused on three main questions: (1) why do people turn to prayer in times of illness?, (2) what are the main topics of their prayers?, and (3) how do they pray? Method. We undertook a systematic review of the literature by searching the databases PubMed, Medline, and PsycINFO. The following inclusion criteria were used: (1) participants in the study were patients dealing with an illness, (2) the study examined the use of private rather than intercessory prayer, and (3) the content and purpose of prayer rather than its effects were investigated. Results. 16 articles were included in the final review. Participants suffered from a variety of chronic diseases, mostly cancer. Five main categories for the reasons and topics of prayer were found: (1) disease-centered prayer, (2) assurance-centered prayer, (3) God-centered prayer, (4) others-centered prayer, and (5) lamentations. Among these, disease-centered prayer was most common. Conclusions. Although most patients with chronic diseases do pray for relief from their physical and mental suffering, the intention of their prayers is not only for healing. Rather, prayer can be a resource that allows patients to positively transform the experience of their illness.

Psychological characteristics of chronic depression: a longitudinal cohort study.

PubMed

Wiersma, Jenneke E; van Oppen, Patricia; van Schaik, Digna J F; van der Does, A J Willem; Beekman, Aartjan T F; Penninx, Brenda W J H

2011-03-01

Few studies have investigated the importance of psychological characteristics for chronicity of depression. Knowledge about psychological differences between chronically depressed persons and nonchronically depressed persons may help to improve treatment of chronic depression. This is the first study to simultaneously compare in large samples various psychological characteristics between chronically depressed and nonchronically depressed adults. Baseline data were drawn from the Netherlands Study of Depression and Anxiety (NESDA), an ongoing longitudinal cohort study aimed at examining the long-term course of depressive and anxiety disorders in different health care settings and phases of illness. Participants were aged 18 to 65 years at the baseline assessment in 2004-2007 and had a current diagnosis of DSM-IV major depressive disorder (N = 1,002). Chronicity of depression was defined as being depressed for 24 months or more in the past 4 to 5 years. The chronicity criterion was fulfilled by 31% (n = 312). The NEO Five-Factor Inventory measured the 5 personality domains, the Leiden Index of Depression Sensitivity-Revised was used to measure cognitive reactivity (eg, hopelessness, rumination), and the Mastery Scale measured external locus of control. Compared to the nonchronically depressed persons, the chronically depressed persons reported significantly higher levels of neuroticism (OR = 1.81; 95% CI, 1.55-2.12; P < .001), external locus of control (OR = 1.94; 95% CI, 1.66-2.28; P < .001), and the following dimensions of cognitive reactivity: hopelessness (OR = 1.64; 95% CI, 1.43-1.88; P < .001), aggression (OR = 1.29; 95% CI, 1.13-1.48; P < .001), risk aversion (OR = 1.43; 95% CI, 1.24-1.63; P < .001), and rumination (OR = 1.55; 95% CI, 1.34-1.78; P < .001). They had significantly lower levels of extraversion (OR = 0.57; 95% CI, 0.49-0.67; P < .001), agreeableness (OR = 0.85; 95% CI, 0.74-0.97; P = .02), and conscientiousness (OR = 0.77; 95% CI, 0.67-0.88; P < .001). When testing these variables multivariably, the odds of chronic depression were significantly increased among those with low extraversion (OR = 0.73; 95% CI, 0.61-0.88; P = .001), high rumination (OR = 1.24; 95% CI, 1.01-1.53; P = .04), and high external locus of control (OR = 1.48; 95% CI, 1.21-1.80; P < .001). Controlling for severity of depressive symptoms, age at onset, comorbidity with anxiety disorders, medical illnesses, and treatment status did not change these results. Our findings suggest that extraversion, rumination, and external locus of control, but not neuroticism, are differentiating psychological characteristics for chronicity of depression. These findings provide suggestions for more specific interventions, focused on extraversion, rumination, and external locus of control, in the treatment of chronic depression. © Copyright 2011 Physicians Postgraduate Press, Inc.

Issues in the Linkage and Integration of Treatment and Rehabilitation Services for Chronically Mentally Ill Persons.

ERIC Educational Resources Information Center

Woy, J. Richard; Dellario, Donald J.

1985-01-01

Compares and contrasts characteristics of the mental health system and the Vocational Rehabilitation (VR) service system; examines environmental, intraorganizational, and interorganizational variables as they pertain to potential for linkages between mental health and VR providers; and discusses implications for improved integration of treatment…

Age Differences in Coping with Chronic Illness.

ERIC Educational Resources Information Center

Felton, Barbara J.; Revenson, Tracey A.

While most lifespan developmental theories of personality predict age-related changes in coping, little direct evidence exists for determining whether age differences in coping style are due to intrinsic developmental processes or to age differences in the kinds of stresses encountered. To evaluate age differences in coping strategies and whether…

[Chronic fatigue syndrome in a cognitive perspective. A therapeutic model].

PubMed

d'Elia, Giacomo

2004-01-29

The cognitive approach to the treatment of chronic fatigue syndrome (CSF) is based on a multifactor etiological hypothesis, i.e. inaccurate beliefs and attitudes to the illness interact with pathophysiological processes, ineffective coping behaviours, negative states of mood, social problem, to perpetuate the illness. Patients suffering from CFS are supposed to be hypervigilant to somatic sensations and to interpret them as signs of impending physical catastrophe. The aim of the this paper is to describe the clinical implementation of principles of cognitive therapy in the treatment of CFS. Basic to the treatment approach is a collaborative, listening and empathic attitude, sensitive to the patient's personal beliefs and potential threats to self-esteem. The aim is to develop more useful, functional, formulations of the illness. The patient and the therapist work together to look at how the patient thinks about herself/himself and the illness, detect unhelpful attitudes, thoughts and mental images about the illness, and to make them accessible to Socratic reasoning. Graded behavioural interventions are planned in order to disconfirm unhelpful beliefs and reverse the spiral of tiredness, demoralization and reduced activity. The treatment is structured according to the general principles of cognitive therapy.

Translating person-centered care into practice: A comparative analysis of motivational interviewing, illness-integration support, and guided self-determination.

PubMed

Zoffmann, Vibeke; Hörnsten, Åsa; Storbækken, Solveig; Graue, Marit; Rasmussen, Bodil; Wahl, Astrid; Kirkevold, Marit

2016-03-01

Person-centred care [PCC] can engage people in living well with a chronic condition. However, translating PCC into practice is challenging. We aimed to compare the translational potentials of three approaches: motivational interviewing [MI], illness integration support [IIS] and guided self-determination [GSD]. Comparative analysis included eight components: (1) philosophical origin; (2) development in original clinical setting; (3) theoretical underpinnings; (4) overarching goal and supportive processes; (5) general principles, strategies or tools for engaging peoples; (6) health care professionals' background and training; (7) fidelity assessment; (8) reported effects. Although all approaches promoted autonomous motivation, they differed in other ways. Their original settings explain why IIS and GSD strive for life-illness integration, whereas MI focuses on managing ambivalence. IIS and GSD were based on grounded theories, and MI was intuitively developed. All apply processes and strategies to advance professionals' communication skills and engagement; GSD includes context-specific reflection sheets. All offer training programs; MI and GSD include fidelity tools. Each approach has a primary application: MI, when ambivalence threatens positive change; IIS, when integrating newly diagnosed chronic conditions; and GSD, when problem solving is difficult, or deadlocked. Professionals must critically consider the context in their choice of approach. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Spiritual needs among patients with chronic pain diseases and cancer living in a secular society.

PubMed

Büssing, Arndt; Janko, Annina; Baumann, Klaus; Hvidt, Niels Christian; Kopf, Andreas

2013-09-01

Research has shown that several patients report unmet psychosocial and spiritual needs. While most studies focus on patients with advanced stages of disease, we intended to identify unmet spiritual needs in patients with chronic pain diseases and cancer living in a secular society. In an anonymous cross-sectional study, standardized questionnaires were provided to German patients with chronic pain diseases (and cancer), i.e., Spiritual Needs Questionnaire (SpNQ), Spirituality/Religiosity and Coping (SpREUK-15), Spiritual Well-being (FACIT-Sp), Brief Multidimensional Life Satisfaction Scale, Interpretation of Illness Questionnaire, and Escape from Illness (Escape). We enrolled 392 patients (67% women, mean age 56.3 ± 13.6 years; 61% Christian denomination) with chronic pain diseases (86%) and cancer (14%). Religious Needs (mean score 0.5 ± 0.8 on the scale) and Existential Needs (0.8 ± 0.8 on the scale) were low, while needs for Inner Peace (1.5 ± 0.9 on the scale) and Giving/Generativity were scored high (1.3 ± 1.0 on the scale). Regression analyses indicated that Religious Needs can be predicted best by (religious) "Trust," the illness interpretation "call for help," and living with a partner; Existential Needs can be predicted by "call for help" and to a weaker extent by (religious) "Trust." Existential Needs are influenced negatively by the illness interpretation "challenge." Needs for Inner Peace were predicted only in trend by the illness interpretation "threat," and there were no significant predictors for the Giving/Generativity needs in the respective regression model. Patients with chronic pain diseases predominantly report needs related to inner peace and generative relatedness on a personal level, whereas needs related to transcendent relatedness were of minor relevance. Nevertheless, even religious "skeptics" can express specific religious needs, and these should be recognized. Addressing patients' specific needs and also supporting them in their struggle with chronic illness remain a challenging task for the modern health care system. Wiley Periodicals, Inc.

Recreational Waterborne Illnesses: Recognition, Treatment, and Prevention.

PubMed

Perkins, Allen; Trimmier, Marirose

2017-05-01

Illness after recreational water activities can be caused by a variety of agents, including bacteria, viruses, parasites, algae, and even chlorine gas. These illnesses are more common in summer. Waterborne illnesses are underreported because most recreational activity occurs in unsupervised venues or on private property, and participants tend to disperse before illness occurs. Symptoms of waterborne illness are primarily gastrointestinal, but upper respiratory and skin manifestations also occur. Gastrointestinal symptoms are usually self-limited, and supportive treatment may be all that is necessary. However, some infections can cause significant morbidity and mortality. Cryptosporidium and Giardia intestinalis are the most common cause of gastrointestinal illness and have partial chlorine resistance. Respiratory infections are typically mild and self-limited. However, if legionnaires' disease develops and is unrecognized, mortality may be as high as 10%. Cellulitis caused by Vibrio vulnificus can result in serious illness, amputation, and death. Early and appropriate antibiotic treatment is important. Chronically ill and immunocompromised persons are at high risk of infection and should be counseled accordingly.

Outcomes among chronically ill adults in a medical home prototype.

PubMed

Liss, David T; Fishman, Paul A; Rutter, Carolyn M; Grembowski, David; Ross, Tyler R; Johnson, Eric A; Reid, Robert J

2013-10-01

To compare quality, utilization, and cost outcomes for patients with selected chronic illnesses at a patient-centered medical home (PCMH) prototype site with outcomes for patients with the same chronic illnesses at 19 nonintervention control sites. Nonequivalent pretest-posttest control group design. PCMH redesign results were investigated for patients with preexisting diabetes, hypertension, and/or coronary heart disease. Data from automated databases were collected for eligible enrollees in an integrated healthcare delivery system. Multivariable regression models tested for adjusted differences between PCMH patients and controls during the baseline and follow-up periods. Dependent measures under study included clinical processes and, outcomes, monthly healthcare utilization, and costs. Compared with controls over 2 years, patients at the PCMH prototype clinic had slightly better clinical outcome control in coronary heart disease (2.20 mg/dL lower mean low-density lipoprotein cholesterol; P <.001). PCMH patients changed their patterns of primary care utilization, as reflected by 86% more secure electronic message contacts (P <.001), 10% more telephone contacts (P = .003), and 6% fewer in-person primary care visits (P <.001). PCMH patients had 21% fewer ambulatory care-sensitive hospitalizations (P <.001) and 7% fewer total inpatient admissions (P = .002) than controls. During the 2-year redesign, we observed 17% lower inpatient costs (P <.001) and 7% lower total healthcare costs (P <.001) among patients at the PCMH prototype clinic. A clinic-level population-based PCMH redesign can decrease downstream utilization and reduce total healthcare costs in a subpopulation of patients with common chronic illnesses.

Chronic illness burden and quality of life in an aging HIV population

PubMed Central

Balderson, Benjamin H.; Grothaus, Lou; Harrison, Robert G.; McCoy, Katryna; Mahoney, Christine; Catz, Sheryl

2012-01-01

The population of persons living with HIV (PLWH) is growing older and more prone to developing other chronic health conditions. Disease progression has been shown to be related to quality of life (QoL). However, descriptions of chronic comorbid illnesses and the unique QoL challenges of older adults living with HIV are not well understood and have not been examined in multiple geographic locations. About 452 PLWH aged 50 years or older were recruited from AIDS Service Organizations in nine states. Participants completed a telephone survey that included measures of other chronic health conditions, perceived stress, depression, and health-related quality of life. As much as 94% of the sample reported a chronic health condition in addition to HIV (mode = 2). The highest reported conditions were hypertension, chronic pain, hepatitis, and arthritis. Despite relatively high rates of depression, overall QoL was moderately high for the sample. Physical functioning was most impacted by the addition of other chronic health problems. Social functioning, mental health functioning, stress, and depression were also strongly associated with chronic disease burden. Additional chronic health problems are the norm for PLWH aged 50 years and older. QoL is significantly related to the addition of chronic health problems. As increasing numbers of PLWH reach older age, this raises challenges for providing comprehensive healthcare to older PLWH with multiple chronic conditions. PMID:22894702

Time spent by people managing chronic obstructive pulmonary disease indicates biographical disruption

PubMed Central

Jowsey, Tanisha; Yen, Laurann E; Bagheri, Nasser; McRae, Ian S

2014-01-01

Since Bury’s 1982 proposal that chronic illness creates biographical disruption for those who are living with it, there has been no effort to quantitatively measure such disruption. “Biographical disruption” refers to the substantial and directive influence that chronic illness can have over the course of a person’s life. Qualitative research and time use studies have demonstrated that people with chronic illnesses spend considerable amounts of time managing their health, and that these demands may change over time. This study was designed to measure the time that older people with chronic illnesses spend on selected health practices as one indicator of biographical disruption. We look specifically at the time use of people with chronic obstructive pulmonary disease (COPD). As part of a larger time use survey, a recall questionnaire was mailed to 3,100 members of Lung Foundation Australia in 2011. A total of 681 responses were received (22.0% response rate), 611 of which were from people with COPD. Descriptive analyses were undertaken on the amount of time spent on selected health-related activities including personal care, nonclinical health-related care, and activity relating to health services. Almost all people with COPD report spending some time each day on personal or home-based health-related tasks, with a median time of 15 minutes per day spent on these activities. At the median, people also report spending about 30 minutes per day exercising, 2.2 hours per month (the equivalent of 4.4 minutes per day) on nonclinical health-related activities, and 4.1 hours per month (equivalent to 8.2 minutes per day) on clinical activities. Excluding exercise, the median total time spent on health-related activities was 17.8 hours per month (or 35.6 minutes per day). For people in the top 10% of time use, the total amount of time was more than 64.6 hours per month (or 2.2 hours per day) excluding exercise, and 104 hours per month (or 3.5 hours per day) including exercise. The amount of time spent on health-related activity, such as engaging in personal care tasks, may be regular and predictable. The execution of these tasks generally takes relatively small amounts of time, and might be incorporated into daily life (biography) without causing significant disruption. Other activities may require large blocks of time, and they may be disruptive in a practical way that almost inevitably disrupts biography. The amount of time required does not appear to alter in relation to the time since diagnosis. The scale of time needed to manage one’s health could easily be interpreted as disruptive, and for some people, even overwhelming. PMID:24477271

Diagnoses Treated in Ambulatory Care Among Homeless-Experienced Veterans: Does Supported Housing Matter?

PubMed

Gabrielian, Sonya; Yuan, Anita H; Andersen, Ronald M; Gelberg, Lillian

2016-10-01

Little is known about how permanent supported housing influences ambulatory care received by homeless persons. To fill this gap, we compared diagnoses treated in VA Greater Los Angeles (VAGLA) ambulatory care between Veterans who are formerly homeless-now housed/case managed through VA Supported Housing ("VASH Veterans")-and currently homeless. We performed secondary database analyses of homeless-experienced Veterans (n = 3631) with VAGLA ambulatory care use from October 1, 2010 to September 30, 2011. We compared diagnoses treated-adjusting for demographics and need characteristics in regression analyses-between VASH Veterans (n = 1904) and currently homeless Veterans (n = 1727). On average, considering 26 studied diagnoses, VASH (vs currently homeless) Veterans received care for more (P < .05) diagnoses (mean = 2.9/1.7). Adjusting for demographics and need characteristics, VASH Veterans were more likely (P < .05) than currently homeless Veterans to receive treatment for diagnoses across categories: chronic physical illness, acute physical illness, mental illness, and substance use disorders. Specifically, VASH Veterans had 2.5, 1.7, 2.1, and 1.8 times greater odds of receiving treatment for at least 2 condition in these categories, respectively. Among participants treated for chronic illnesses, adjusting for predisposing and need characteristics, VASH (vs currently homeless) Veterans were 9%, 8%, and 11% more likely to have 2 or more visits for chronic physical illnesses, mental illnesses, and substance use disorder, respectively. Among homeless-experienced Veterans, permanent supported housing may reduce disparities in the treatment of diagnoses commonly seen in ambulatory care. © The Author(s) 2016.

Complex adaptive chronic care.

PubMed

Martin, Carmel; Sturmberg, Joachim

2009-06-01

The Chronic Care Model (CCM) is widely taken up as the universal operational framework for redesigning health systems to address the increasing chronic disease burden of an ageing population. Chronic care encompasses health promotion, prevention, self management, disease control, treatment and palliation to address 'chronicity' of long journeys through disease, illness and care in the varying contexts of complex health systems. Yet at an operational level, CCM activities are predominantly based on an evidence-base of discreet chronic disease interventions in specific settings; and their demonstrable impact is limited to processes of select disease management such as diabetes in specific disease management programs. This paper proposes a framework that makes sense of the nature of chronicity and its multiple dimensions beyond disease and argues for a set of building blocks and leverage points that should constitute the starting points for 'redesign'? Complex Adaptive Chronic Care is proposed as an idea for an explanatory and implementation framework for addressing chronicity in existing and future chronic care models. Chronicity is overtly conceptualized to encompass the phenomena of an individual journey, with simple and complicated, complex and chaotic phases, through long term asymptomatic disease to bodily dysfunction and illness, located in family and communities. Chronicity encompasses trajectories of self-care and health care, as health, illness and disease co-exist and co-evolve in the setting of primary care, local care networks and at times institutions. A systems approach to individuals in their multi-layered networks making sense of and optimizing experiences of their chronic illness would build on core values and agency around a local vision of health, empowerment of individuals and adaptive leadership, and it responds in line with the local values inherent in the community's disease-based knowledge and the local service's history and dynamics. Complex Adaptive Chronic Care exceeds the current notions of disease management as an endpoint. Primary care team members are system adaptors in partnership with individuals constructing their care and system leadership in response to chronic illness, and enable healthy resilience as well as personal healing and support. Outcomes of complex adaptive chronic care are the emergence of health in individuals and communities through adaptability, self-organization and empowerment. Chronic care reform from within a complex adaptive system framework is bottom up and emergent and stands in stark contrast to (but has to co-exist with) the prevailing protocol based disease care rewarding selective surrogate indicators of disease control. Frameworks such as the Chronic Care Model provide guidance, but do not replace individual experience, local adaptive leadership and responsiveness. The awareness of complexity means opening up problems to a different reality demanding different set of questions and approaches to answer them.

Living on social assistance with chronic illness: Buffering and undermining features to well-being

PubMed Central

2010-01-01

Background In Sweden, the social security and sickness insurance systems are comprehensive and aim to provide people whose illness prevents them from earning their own living, with either sickness benefits or disability pension. Some, however, are not entitled to these benefits or receive social insurance benefits at a level too low for subsistence, and are referred to social assistance. The purpose of this study was to explore in depth how social assistance recipients with chronic illness perceive and respond to the experience of living on social assistance. Methods Seventeen in-depth interviews were carried out with chronically ill people who had received social assistance for several years. Grounded theory informed the design of the study. Results The study showed that different strategies (living one day at a time, taking steps forwards and backwards and making attempts to find ways out of the situation) were employed by social assistance recipients to maintain or improve their well-being. Contextual features like the prevailing welfare system, public services and the local neighbourhood could buffer or undermine these strategies and their overall well-being. These features together influenced how interviewees perceived their situation, the possible ways out of the situation and the consequences for their well-being. Conclusion From this study it is evident that the way in which individuals on social assistance interact with services and how they are treated by professionals plays an important role in their well-being, in combination with what kind of help and support is available for recipients through the welfare system. In this respect, persons living on social assistance with chronic illness are particularly vulnerable. This study suggests that more effort should be made to find long term solutions concerning income support, rehabilitation and other services provided to this group. PMID:21134265

A narrative literature review regarding job retention strategies for people with chronic illnesses.

PubMed

Koch, Lynn C; Rumrill, Phillip D; Conyers, Liza; Wohlford, Sarah

2013-01-01

Job retention is a major concern for individuals with chronic illnesses, who represent a rapidly growing vocational rehabilitation (VR) consumer population. The purpose of this article is to examine selected job retention considerations for consumers with chronic illnesses. The authors (a) describe distinguishing characteristics of chronic illnesses in terms of populations affected and psychosocial implications, (b) discuss the vocational implications of chronic illnesses, (c) provide general considerations for the provision of job retention services, and (d) examine job retention strategies aimed at improving employment outcomes for individuals with chronic illnesses.

The MyHealthService approach for chronic disease management based on free open source software and low cost components.

PubMed

Vognild, Lars K; Burkow, Tatjana M; Luque, Luis Fernandez

2009-01-01

In this paper we present an approach to building personal health services, supporting following-up, physical exercising, health education, and psychosocial support for the chronically ill, based on free open source software and low-cost computers, mobile devices, and consumer health and fitness devices. We argue that this will lower the cost of the systems, which is important given the increasing number of people with chronicle diseases and limited healthcare budgets.

Implementation of HIV Palliative Care: Interprofessional Education to Improve Patient Outcomes in Resource-Constrained Settings, 2004-2012.

PubMed

Alexander, Carla S; Pappas, Gregory; Amoroso, Anthony; Lee, Mei Ching; Brown-Henley, Yvonne; Memiah, Peter; O'Neill, Joseph F; Dix, Olivia; Redfield, Robert R

2015-09-01

Palliative care (PC), introduced early in the management of chronic illness, improves patient outcomes. Early integration of a palliative approach for persons with HIV has been documented to be effective in identifying and managing patient-level concerns over the past decade in African settings. The experience of implementing PC in multiple African and other resource-constrained settings (RCSs) emphasizes the need for essential palliative competencies that can be integrated with chronic disease management for patients and their families facing life-limiting illness. This article is an historical description of how basic palliative competencies were observed to be acceptable for health workers providing outpatient HIV care and treatment during eight years of U.S. implementation of "care and support," a term coined to represent PC for persons living with HIV in RCS. The need for team building and interprofessional education is highlighted. The model is currently being tested in one U.S. city and may represent a mechanism for expanding the palliative approach into management of chronic disease. Such competencies may play a role in the development of the patient-centered medical home, a critical component of U.S. health care reform. Copyright © 2015 American Academy of Hospice and Palliative Medicine. All rights reserved.

A Systematic Review of Loneliness and Common Chronic Physical Conditions in Adults

PubMed Central

Petitte, Trisha; Mallow, Jennifer; Barnes, Emily; Petrone, Ashley; Barr, Taura; Theeke, Laurie

2015-01-01

Loneliness is a prevalent and global problem for adult populations and has been linked to multiple chronic conditions in quantitative studies. This paper presents a systematic review of quantitative studies that examined the links between loneliness and common chronic conditions including: heart disease, hypertension, stroke, lung disease, and metabolic disorders. A comprehensive literature search process guided by the PRISMA statement led to the inclusion of 33 articles that measure loneliness in chronic illness populations. Loneliness is a significant biopsychosocial stressor that is prevalent in adults with heart disease, hypertension, stroke, and lung disease. The relationships among loneliness, obesity, and metabolic disorders are understudied but current research indicates that loneliness is associated with obesity and with psychological stress in obese persons. Limited interventions have demonstrated long-term effectiveness for reducing loneliness in adults with these same chronic conditions. Future longitudinal randomized trials that enhance knowledge of how diminishing loneliness can lead to improved health outcomes in persons with common chronic conditions would continue to build evidence to support the translation of findings to recommendations for clinical care. PMID:26550060

A clinical nurse specialist-led intervention to enhance medication adherence using the plan-do-check-act cycle for continuous self-improvement.

PubMed

Russell, Cynthia L

2010-01-01

A clinical nurse specialist-led intervention to improve medication adherence in chronically ill adults using renal transplant recipients as an exemplar population is proposed. Meta-analyses and systematic reviews of chronically ill and transplant patients indicate that patient-specific characteristics not only are poor and inconsistent predictors for medication nonadherence but also are not amenable to intervention. Adherence has not meaningfully improved, despite meta-analyses and systematic narrative reviews of randomized controlled trials (RCTs) dealing with medication nonadherence in acutely and chronically ill persons and RCTs dealing with transplant patients. Interventions with a superior potential to enhance medication adherence must be developed. Use of a clinical nurse specialist-led continuous self-improvement intervention with adult renal transplant recipients is proposed. Continuous self-improvement focuses on improving personal systems thinking and behavior using the plan-do-check-act process. Electronic medication monitoring reports, one of several objective measures of medication adherence, are used by the clinician to provide patient feedback during the check process on medication-taking patterns. Continuous self-improvement as an intervention holds promise in supporting patient self-management and diminishing the blame that clinicians place on patients for medication nonadherence. Using an objective measure of medication adherence such as an electronic monitoring report fosters collaborative patient-clinician discussions of daily medication-taking patterns. Through collaboration, ideas for improving medication taking can be explored. Changes can be followed and evaluated for effectiveness through the continuous self-improvement process. Future studies should include RCTs comparing educational and/or behavioral interventions to improve medication adherence.

[Medical rehabilitation from a lifespan perspective].

PubMed

Linden, Michael; Bernert, Sebastian; Funke, Ariane; Dreinhöfer, Karsten E; Jöbges, Michael; von Kardorff, Ernst; Riedel-Heller, Steffi G; Spyra, Karla; Völler, Heinz; Warschburger, Petra; Wippert, Pia-Maria

2017-04-01

Lifespan research investigates the development of individuals over the course of life. As medical rehabilitation deals with primary and secondary prophylaxis, treatment, and compensation of chronic illnesses, a lifespan perspective is needed for the classification and diagnosis of chronic disorders, the assessment of course modifying factors, the identification of vulnerable life periods and critical incidents, the implementation of preventive measures, the development of methods for the evaluation of prior treatments, the selection and prioritization of interventions, including specialized inpatient rehabilitation, the coordination of therapies and therapists, and for evaluations in social and forensic medicine. Due to the variety of individual risk constellations, illness courses and treatment situations across the lifespan, personalized medicine is especially important in the context of medical rehabilitation, which takes into consideration hindering and fostering factors alike.

A conceptual model of independence and dependence for adults with chronic physical illness and disability.

PubMed

Gignac, M A; Cott, C

1998-09-01

This paper presents a conceptual model of physical independence and dependence as it relates to adult onset, chronic physical illness and disability. Physical independence and dependence are presented as two separate, continuous, and multiply determined constructs, and illustrations are provided of situations where people can be independent, dependent, not independent, or experience imposed dependence. The paper also discusses potential determinants of physical independence and dependence, including different domains of disability, the role of subjective perceptions, demographics, the physical and social/political environments, personal resources, attitudes and coping resources, illness and efficacy appraisals, and the nature of the assistive relationship. The paper extends work on physical independence and dependence by synthesizing the findings from previous studies and incorporating the findings from other relevant areas of research into the area. It also expands on the concepts of physical independence and dependence, as well as their determinants, and relates independence and dependence to other outcomes of interest such as service delivery.

Marshalling Social Support: A Care-Getting Model for Persons Living with Cancer

ERIC Educational Resources Information Center

Kahana, Eva; Kahana, Boaz; Wykle, May; Kulle, Diana

2009-01-01

This article offers a stress theory-based conceptual framework for understanding proactive options for care-getting for patients living with cancer that is also relevant to patients living with other chronic or life-threatening illnesses. Barriers and facilitators to active efforts for obtaining responsive care from both informal and formal…

From personal challenge to technical fix: the risks of depersonalised care.

PubMed

Reeve, Joanne; Lynch, Tom; Lloyd-Williams, Mari; Payne, Sheila

2012-03-01

Our research focuses on the complexity of needs associated with distress in people with advanced cancer. We have recently completed a large longitudinal survey exploring the interplay between a number of components of distress, including depression, demoralisation, debility and spirituality, amongst a cohort of people living with terminal cancer. Participants were recruited from 25 hospices across the Northwest of England between 2007-2009. A purposive subsample of 27 people was invited to take part in a qualitative interview to explore in greater depth their personal experiences of living with illness and related distress. Holistic-content analysis revealed two emerging themes: 'personal or personalised care' and 'expectations of truth and certainty'. We discuss these themes in the light of Illich's critique of health care as a 'technical response to a personal challenge'. We highlight the need for further work to explore the impact of organisation of care on personalised need and suggest looking to the chronic illness self-management literature for help in developing future palliative care approaches. © 2011 Blackwell Publishing Ltd.

Personalized medicine and chronic obstructive pulmonary disease.

PubMed

Wouters, E F M; Wouters, B B R A F; Augustin, I M L; Franssen, F M E

2017-05-01

The current review summarizes ongoing developments in personalized medicine and precision medicine in chronic obstructive pulmonary disease (COPD). Our current approach is far away of personalized management algorithms as current recommendations for COPD are largely based on a reductionist disease description, operationally defined by results of spirometry. Besides precision medicine developments, a personalized medicine approach in COPD is described based on a holistic approach of the patient and considering illness as the consequence of dynamic interactions within and between multiple interacting and self-adjusting systems. Pulmonary rehabilitation is described as a model of personalized medicine. Largely based on current understanding of inflammatory processes in COPD, targeted interventions in COPD are reviewed. Augmentation therapy for α-1-antitrypsine deficiency is described as model of precision medicine in COPD based in profound understanding of the related genetic endotype. Future developments of precision medicine in COPD require identification of relevant endotypes combined with proper identification of phenotypes involved in the complex and heterogeneous manifestations of COPD.

Siblings of children with a chronic illness: a meta-analysis.

PubMed

Sharpe, Donald; Rossiter, Lucille

2002-12-01

To review the literature pertaining to the siblings of children with a chronic illness. Fifty-one published studies and 103 effect sizes were identified and examined through meta-analysis. We found (1) a modest, negative effect size statistic existed for siblings of children with a chronic illness relative to comparison participants or normative data; (2) heterogeneity existed for those effect sizes; (3) parent reports were more negative than child self-reports; (4) psychological functioning (i.e., depression, anxiety), peer activities, and cognitive development scores were lower for siblings of children with a chronic illness compared to controls; and (5) a cluster of chronic illnesses with daily treatment regimes was associated with negative effect statistics compared to chronic illnesses that did not affect daily functioning. More methodologically sound studies investigating the psychological functioning of siblings of children with a chronic illness are needed. Clinicians need to know that siblings of children with a chronic illness are at risk for negative psychological effects. Intervention programs for the siblings and families of children with a chronic illness should be developed.

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults' experiences of the illness trajectory.

PubMed

Stormorken, Eva; Jason, Leonard A; Kirkevold, Marit

2017-03-27

Municipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastrointestinal infection in 2500 people, according to the Norwegian Prescription Database. In the aftermath a minor group subsequently developed post-infectious fatigue syndrome (PIFS). Persons in this minor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one or more courses of antibiotic treatment. The study's purpose was to explore how the affected persons experienced the illness trajectory and various PIFS disabilities. A qualitative design with in-depth interviews was used to obtain first-hand experiences of PIFS. To get an overall understanding of their perceived illness trajectory, the participants were asked to retrospectively rate their functional level at different points in time. A maximum variation sample of adults diagnosed with PIFS according to the international 1994 criteria was recruited from a cohort of persons diagnosed with PIFS at a tertiary Neurology Outpatient Clinic in Western Norway. The sample comprised 19 women and seven men (mean age 41 years, range 26-59). The interviews were fully transcribed and subjected to a qualitative content analysis. All participants had been living healthy lives pre-illness. The time to develop PIFS varied. Multiple disabilities in the physical, cognitive, emotional, neurological, sleep and intolerance domains were described. Everyone more or less dropped out from studies or work, and few needed to be taken care of during the worst period. The severity of these disabilities varied among the participants and during the illness phases. Despite individual variations, an overall pattern of illness trajectory emerged. Five phases were identified: prodromal, downward, turning, upward and chronic phase. All reached a nadir followed by varying degrees of improvement in their functional ability. None regained pre-illness health or personal and professional abilities. The needs of persons with this condition are not met. Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. Enhanced knowledge among health professionals, tailored treatment, rest as needed, financial support and practical help would likely improve prognosis.

Illness uncertainty and illness intrusiveness as predictors of depressive and anxious symptomology in college students with chronic illnesses.

PubMed

Mullins, Alexandria J; Gamwell, Kaitlyn L; Sharkey, Christina M; Bakula, Dana M; Tackett, Alayna P; Suorsa, Kristina I; Chaney, John M; Mullins, Larry L

2017-07-01

To examine predictors of psychological functioning in college students with chronic illnesses. Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between November 2013 and May 2015. Participants completed online measures of psychosocial functioning, including illness uncertainty, illness intrusiveness, depression, and anxiety. Students with chronic illnesses other than asthma or allergies evidenced the greatest levels of anxious (p <. 05), but not depressive symptomology. Additionally, this group reported greater illness uncertainty and intrusiveness (p <. 05) compared to their peers. Uncertainty and intrusiveness independently predicted depressive and anxious symptoms for students in both illness groups. Compared to peers with asthma or allergies, college students with other chronic illnesses reported higher levels of anxious symptoms. Illness uncertainty and intrusiveness appear to be predictors of psychological distress, regardless of illness.

Home is where the head is: a distributed cognition account of personal health information management in the home among those with chronic illness.

PubMed

Werner, Nicole E; Jolliff, Anna F; Casper, Gail; Martell, Thomas; Ponto, Kevin

2018-08-01

Managing chronic illness requires personal health information management (PHIM) to be performed by lay individuals. Paramount to understanding the PHIM process is understanding the sociotechnical system in which it frequently occurs: the home environment. We combined distributed cognition theory and the patient work system model to investigate how characteristics of the home interact with the cognitive work of PHIM. We used a 3D virtual reality CAVE that enabled participants who had been diagnosed with diabetes (N = 20) to describe how they would perform PHIM in the home context. We found that PHIM is distinctly cognitive work, and rarely performed 'in the head'. Rather, features of the physical environment, tasks, people, and tools and technologies present, continuously shape and are shaped by the PHIM process. We suggest that approaches in which the individual (sans context) is considered the relevant unit of analysis overlook the pivotal role of the environment in shaping PHIM. Practitioner Summary: We examined how Personal Health Information Management (PHIM) is performed in the homes of diabetic patients. We found that approaches to studying cognition that focus on the individual, to the exclusion of their context, overlook the pivotal role of environmental, social, and technological features in shaping PHIM.

Public Policy and Mental Illnesses: Jimmy Carter's Presidential Commission on Mental Health

PubMed Central

Grob, Gerald N

2005-01-01

President Jimmy Carter's Presidential Commission on Mental Health was intended to recommend policies to overcome obvious deficiencies in the mental health system. Bureaucratic rivalries within and between governments; tensions and rivalries within the mental health professions; identity and interest group politics; the difficulties of distinguishing the respective etiological roles of such elements as poverty, racism, stigmatization, and unemployment; and an illusory faith in prevention all influenced the commission's deliberations and subsequent enactment of the short-lived Mental Health Systems Act. The commission's work led to the formulation of the influential National Plan for the Chronically Mentally Ill, but a system of care and treatment for persons with serious mental illnesses was never created. PMID:16201999

Perceived discrimination, race and health in South Africa.

PubMed

Williams, David R; Gonzalez, Hector M; Williams, Stacey; Mohammed, Selina A; Moomal, Hashim; Stein, Dan J

2008-08-01

To assess the levels of perceived acute and chronic racial and non-racial discrimination in South Africa, their association with health, and the extent to which they contribute to racial differences in physical and mental health, data were used from a national probability sample of adults, the South African Stress and Health Study (SASH). All Black groups in South Africa (African, Coloured and Indian) were two to four times more likely than Whites to report acute and chronic experiences of racial discrimination. Africans and Coloureds report higher levels of ill health than Whites, but acute and chronic racial discrimination were unrelated to ill health and unimportant in accounting for racial differences in self-rated health. In contrast, all Black groups had higher levels of psychological distress than Whites, and perceived chronic discrimination was positively associated with distress. Moreover, these experiences accounted for some of the residual racial differences in distress after adjustment for socioeconomic status. Our main findings indicate that, in a historically racialized society, perceived chronic racial and especially non-racial discrimination acts independently of demographic factors, other stressors, psychological factors (social desirability, self-esteem and personal mastery), and multiple SES indicators to adversely affect mental health.

Perceived Discrimination, Race and Health in South Africa

PubMed Central

Williams, David R.; Gonzalez, Hector M; Williams, Stacey; Mohammed, Selina A; Moomal, Hashim; Stein, Dan J

2009-01-01

To assess the levels of perceived acute and chronic racial and non-racial discrimination in South Africa, their association with health, and the extent to which they contribute to racial differences in physical and mental health, data were used from a national probability sample of adults, the South African Stress and Health Study (SASH). All Black groups in South Africa (African, Coloured and Indian) were two to four times more likely than Whites to report acute and chronic experiences of racial discrimination. Africans and Coloureds report higher levels of ill health than Whites, but acute and chronic racial discrimination were unrelated to ill health and unimportant in accounting for racial differences in self rated health. In contrast, all Black groups had higher levels of psychological distress than Whites, and perceived chronic discrimination, was positively associated with distress. Moreover, these experiences accounted for some of the residual racial differences in distress after adjustment for socioeconomic status. Our main findings indicate that, in a historically racialized society, perceived chronic racial and especially non-racial discrimination acts independently of demographic factors, other stressors, psychological factors (social desirability, self-esteem and personal mastery), and multiple SES indicators to adversely affect mental health. PMID:18486292

An Investigation of Lower Urinary Tract Symptoms in Women Aged 40 and Over.

PubMed

Sever, Neziha; Oskay, Umran

2017-01-01

The objective of this study was to determine lower urinary tract symptoms (LUTS) and associated risk factors in women aged 40 years and over. The study was carried out with a total of 312 women. The data were collected between 1 January 2009 and 30 July 2010. As research instruments, an interview form of 19 questions that questioned personal characteristics and was developed by researchers, and the Bristol Female Lower Urinary Tract Symptoms (BFLUTS) Questionnaire evaluating lower urinary tract symptoms were used. Linear regression analysis was used to detect associated risk factors. The rates of urgency, urinary incontinence, nocturia, and frequency symptoms were 61.5, 52.2, 18.9, and 25%, respectively. BFLUTS total scores increased with age, but the present study has detected no statistically significant differences (P > 0.05). BFLUTS scores of the women demonstrated statistically significant differences according to several risk factors including menopause status (P = 0.03), presence of chronic illness (P = 0.000), medicine use (P = 0.000), recurrent urinary tract infections (P = 0.000), body mass index (BMI) (P = 0.004), delivery number (P = 0.005) and chronic constipation (P = 0.002). Multiple linear regression analysis determined that frequent urinary tract infections, presence of chronic illness, chronic constipation, BMI and number of deliveries were significantly related to LUTS development. The most common LUTS was urgency in women aged 40 years and older. Recurrent urinary tract infection was determined as the most significant risk factor for LUTS, followed by chronic illness, chronic constipation, higher BMI and parity. © 2015 Wiley Publishing Asia Pty Ltd.

Ways of understanding parental chronic pain: a typology.

PubMed

Umberger, Wendy; Martsolf, Donna; Jacobson, Ann; Risko, Judy; Calabro, Mary; Patterson, Mary

2014-12-01

Chronic non-cancer pain (CNCP) is a prevalent occurrence and is experienced by adults in their child-rearing years. Communication within the family about parental illness can be formidable, and family members are often uninformed about illness details. To date, there is no research exploring how children and adolescents understand parental chronic pain, a very complex phenomenon, and its related disability. The aim of this study was to develop a substantive theory that describes how adolescents manage the experience of living with a parent suffering with CNCP and environmental factors that help or hinder this process. Grounded theory was used, the focus of which was adolescents' processes of dealing with parental illness in the interpersonal and environmental contexts of their daily lives. A sample of 30 young adults was recruited in northeastern Ohio using theoretical sampling. During open-ended interviews, participants were asked to look back on their adolescence and talk about how they managed living with parental chronic pain. Interview transcripts and field notes were analyzed using constant comparative methods. Six ways of understanding parental chronic pain emerged from the data: noticing something is different, wrestling with not knowing, searching for answers, questioning the validity of pain, developing insight into the complexity of pain, and learning important life lessons. Findings shed light on how adolescents understand and attach meaning and significance to parental chronic pain and disability and serve as the basis for the development of personalized family interventions. Copyright © 2014 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.

Outcomes Among Chronically Ill Adults in a Medical Home Prototype

PubMed Central

Liss, David T.; Fishman, Paul A.; Rutter, Carolyn M.; Grembowski, David; Ross, Tyler R.; Johnson, Eric A.; Reid, Robert J.

2014-01-01

Objectives To compare quality, utilization, and cost outcomes for patients with selected chronic illnesses at a patient-centered medical home (PCMH) prototype site with outcomes for patients with the same chronic illnesses at 19 nonintervention control sites. Study Design Nonequivalent pretest-posttest control group design. Methods PCMH redesign results were investigated for patients with preexisting diabetes, hypertension, and/or coronary heart disease. Data from automated databases were collected for eligible enrollees in an integrated healthcare delivery system. Multivariable regression models tested for adjusted differences between PCMH patients and controls during the baseline and follow-up periods. Dependent measures under study included clinical processes and, outcomes, monthly healthcare utilization, and costs. Results Compared with controls over 2 years, patients at the PCMH prototype clinic had slightly better clinical outcome control in coronary heart disease (2.20 mg/dL lower mean low-density lipoprotein cholesterol; P <.001). PCMH patients changed their patterns of primary care utilization, as reflected by 86% more secure electronic message contacts (P <.001), 10% more telephone contacts (P = .003), and 6% fewer in-person primary care visits (P <.001). PCMH patients had 21% fewer ambulatory care–sensitive hospitalizations (P <.001) and 7% fewer total inpatient admissions (P = .002) than controls. During the 2-year redesign, we observed 17% lower inpatient costs (P <.001) and 7% lower total healthcare costs (P <.001) among patients at the PCMH prototype clinic. Conclusions A clinic-level population-based PCMH redesign can decrease downstream utilization and reduce total healthcare costs in a subpopulation of patients with common chronic illnesses. PMID:24304182

Employees in Nursing and Personal Care Homes: Number, Work Experience, Special Training, and Wages, United States, May-June 1964. Publication No. 1000, Series 12, No. 6.

ERIC Educational Resources Information Center

Taube, Carl A.; Bryant, E. Earl

This report of the findings of a survey of a sample of 1,073 resident institutions which provide nursing or personal care to the aged or chronically ill emphasizes employee work experience, special training, and wages. The median total experience for all nursing and professional employees in the type of job held at the time of the survey was 4.1…

An Integrative Psychotherapy Approach to Foster Community Engagement and Rehabilitation in Schizophrenia: A Case Study Illustration.

PubMed

Kukla, Marina; Whitesel, Frankie; Lysaker, Paul H

2016-02-01

This case study illustrates the use of a long-term integrative psychotherapy approach with a middle- aged man with chronic schizophrenia and a mood disorder. The case of "Holst" describes a man with a history of insecure attachment and trauma who later went on to contract a serious chronic illness, precipitating the onset of psychotic symptoms, depression, and chronic suicidal ideation, resulting in multiple hospitalizations. Combining metacognition-oriented therapy with elements of cognitive behavioral therapy and psychiatric rehabilitation, this approach fostered significantly improved community functioning and attainment of personal goals over time. Through the journey of therapy, the patient also developed a more coherent narrative about his life, established a stable sense of self, and became an active agent in the world. This case illustration demonstrates that these three different approaches can be used in a sequential and complementary fashion to foster recovery in the midst of serious physical and mental illness. © 2015 Wiley Periodicals, Inc.

When the ringing in the ears gets unbearable: Illness representations, self-instructions and adjustment to tinnitus.

PubMed

Vollmann, Manja; Kalkouskaya, Natallia; Langguth, Berthold; Scharloo, Margreet

2012-08-01

Chronic tinnitus can severely impair a person's quality of life. The degree of impairment, however, is not closely related to tinnitus loudness. Applying the common sense model (CSM) of self-regulation of health and illness, this study investigated to what extent psychological factors, i.e. illness representations and positive/negative self-instructions, are associated with the degree of tinnitus-related complaints. In this cross-sectional study, 118 patients diagnosed with chronic tinnitus filled in questionnaires assessing illness representations (IPQ-R), positive and negative self-instructions (TRSS), and tinnitus-related complaints (TQ). The regression analysis yielded a number of significant associations between illness representations and tinnitus-related complaints, particularly for the IPQ-R dimensions identity, consequences, coherence, and emotional representations. With regard to self-instructions and tinnitus-related complaints, significant effects were found only for negative self-instructions. Moreover, multiple mediation analyses revealed that the effects of consequences and emotional representations on tinnitus-related complaints were (partially) due to the use of negative self-instructions. Psychological factors are strongly related to the extent of tinnitus-related complaints. The findings provide an indication of which aspects should be targeted in psychological and psychotherapeutic tinnitus treatment. Copyright © 2012 Elsevier Inc. All rights reserved.

Negative Illness Perceptions are Associated with a Pro-nociceptive Modulation Profile and Augmented Pelvic Pain.

PubMed

Grinberg, Keren; Granot, Michal; Lowenstein, Lior; Abramov, Liora; Weissman-Fogel, Irit

2018-05-25

A patient's personal interpretations of a health threat or "illness perceptions" (IPs) are associated with their clinical outcomes. This study explored whether IPs are associated with pain severity and ability to modulate pain in women with chronic pelvic pain syndrome (CPPS), as well as the predictive value of IPs on Myofascial Physical Therapy (MPT) success. Illness Perceptions Questionnaire - Revised (IPQ-R), mechanical and heat pain thresholds, mechanical temporal summation (mTS), and conditioned pain modulation (CPM) were evaluated in CPPS patients (n=39) before, and 3 months after MPT. CPPS severity was obtained by the Brief Pain Inventory (BPI). Stronger perceptions of illness chronicity were correlated with less efficient CPM (r=0.488, P=0.002) and increased mechanical pain intensity (r=0.405, P=0.02). Lower perceptions of control over illness were associated with enhanced mTS (r=0.399, P=0.01). Higher BPI scores were correlated with emotional representations ("negative emotional representations") and severe consequences due to CPPS. Regression analyses revealed that negative IPs predict less efficient MPT. Cognitive representations play a unique role in CPPS expression and MPT outcomes. The interplay between negative IPs and a pro-nociceptive modulation profile, mediated by enhanced facilitatory and reduced inhibitory processes, may be involved in the manifestation of CPPS.

Perceived quality of chronic illness care is associated with self-management: Results of a nationwide study in the Netherlands.

PubMed

van Houtum, L; Heijmans, M; Rijken, M; Groenewegen, P

2016-04-01

Healthcare providers are increasingly expected to help chronically ill patients understand their own central role in managing their illness. The aim of this study was to determine whether experiencing high-quality chronic illness care and having a nurse involved in their care relate to chronically ill people's self-management. Survey data from 699 people diagnosed with chronic diseases who participated in a nationwide Dutch panel-study were analysed using linear regression analysis, to estimate the association between chronic illness care and various aspects of patients' self-management, while controlling for their socio-demographic and illness characteristics. Chronically ill patients reported that the care they received was of high quality to some extent. Patients who had contact with a practise nurse or specialised nurse perceived the quality of the care they received as better than patients who only had contact with a GP or medical specialist. Patients' perceptions of the quality of care were positively related to all aspects of their self-management, whereas contact with a practise nurse or specialised nurse in itself was not. Chronically ill patients who have the experience to receive high-quality chronic illness care that focusses on patient activation, decision support, goal setting, problem solving, and coordination of care are better self-managers. Having a nurse involved in their care seems to be positively valued by chronically ill patients, but does not automatically imply better self-management. Copyright © 2016. Published by Elsevier Ireland Ltd.

Incidence of depression and anxiety: the Stirling County Study.

PubMed Central

Murphy, J M; Olivier, D C; Monson, R R; Sobol, A M; Leighton, A H

1988-01-01

Prevalence studies in psychiatric epidemiology out-number incidence investigations by a wide margin. This report gives descriptive information about the incidence of depression and anxiety disorders in a general population. Using data gathered in a 16-year follow-up of an adult sample selected as part of the Stirling County Study (Canada), the incidence of these types of disorders was found to be approximately nine cases per 1,000 persons per year. The data suggest that for every man who became ill for the first time with one of these disorders, three women became ill. Incidence tended to be higher among relatively young persons. These incidence rates are consistent with prevalence rates of approximately 10 per cent to 15 per cent for depression and anxiety disorders aggregated together, given an estimated average duration of illness of about 10 years. It is concluded that these incidence rates are fairly realistic in view of evidence that disorders of these types tend to be chronic. PMID:3258479

Chronically Ill Children in America: Background and Recommendations.

ERIC Educational Resources Information Center

Hobbs, Nicholas; And Others

The report examines chronic illness in children and considers issues and recommendations for change in public policies and programs affecting chronically ill children and their families. The background chapter notes the significance of the problem, reviews 11 diseases that are representative of the severe chronic illnesses of childhood: juvenile…

Estimating individual benefits of medical or behavioral treatments in severely ill patients.

PubMed

Diaz, Francisco J

2017-01-01

There is a need for statistical methods appropriate for the analysis of clinical trials from a personalized-medicine viewpoint as opposed to the common statistical practice that simply examines average treatment effects. This article proposes an approach to quantifying, reporting and analyzing individual benefits of medical or behavioral treatments to severely ill patients with chronic conditions, using data from clinical trials. The approach is a new development of a published framework for measuring the severity of a chronic disease and the benefits treatments provide to individuals, which utilizes regression models with random coefficients. Here, a patient is considered to be severely ill if the patient's basal severity is close to one. This allows the derivation of a very flexible family of probability distributions of individual benefits that depend on treatment duration and the covariates included in the regression model. Our approach may enrich the statistical analysis of clinical trials of severely ill patients because it allows investigating the probability distribution of individual benefits in the patient population and the variables that influence it, and we can also measure the benefits achieved in specific patients including new patients. We illustrate our approach using data from a clinical trial of the anti-depressant imipramine.

The Lived Experience of Student Caregivers: A Phenomenological Study

ERIC Educational Resources Information Center

Schumacher, Lisa Polakowski

2017-01-01

The purpose of this dissertation study was to describe how students who provide care for a person with a disability or chronic illness cope with the demands of both roles. The way students cope with stress has a direct impact on overall health, which has an impact on learning, development, and retention. Student caregivers are considered…

Development and psychometric evaluation of the Chronic Illness Anticipated Stigma Scale

PubMed Central

Quinn, Diane M.; Kalichman, Seth C.; Park, Crystal L.

2015-01-01

The Chronic Illness Anticipated Stigma Scale (CIASS) was developed to measure anticipated stigma (i.e., expectations of prejudice, stereotyping, and discrimination) among people living with chronic illnesses. The CIASS is a 12-item scale with three subscales differentiating among sources of anticipated stigma, including friends and family members, work colleagues, and healthcare workers. Results support the reliability, validity, and generalizability of the CIASS in two samples of people living with chronic illnesses. The CIASS was correlated with other stigma-related constructs as well as indicators of mental health, physical health, and health behaviors. The CIASS can help researchers gauge the degree to which people living with chronic illnesses anticipate stigma, better understand the processes by which anticipated stigma contributes to the health and behavior of people living with chronic illnesses, and compare the extent to which people living with different types of chronic illnesses anticipate stigma. PMID:22526525

Discovering untapped relationship potential with patients in telehealth: a qualitative interview study.

PubMed

Heckemann, Birgit; Wolf, Axel; Ali, Lilas; Sonntag, Steffen Mark; Ekman, Inger

2016-03-02

To explore factors that influence relationship building between telehealth professionals and patients with chronic illness over a distance, from a telehealth professional's perspective. 4 focus group interviews were conducted in June 2014. Digital recordings were transcribed verbatim and qualitative content analysis was performed using an iterative process of 3 coding rounds. 20 telehealth professionals. A telehealth service centre in the south of Germany that provided care for 12,000 patients with chronic heart failure across Germany. Non-video telehealth technology creates an atmosphere that fosters sharing of personal information and a non-judgemental attitude. This facilitates the delivery of fair and equal healthcare. A combination of a protocol-driven service structure along with shared team and organisational values provide a basis for establishing long-term healthcare relationships. However, each contact between a telehealth professional and a patient has an uncertain outcome and requires skillful negotiation of the relationship. Although care provision was personalised, there was scope to include the patients as 'experts on their own illness' to a greater extent as advocated by person-centred care. Currently, provision of person-centred care is not sufficiently addressed in telehealth professional training. Telehealth offers a viable environment for the delivery of person-centred care for patients with long-standing disease. Current telehealth training programmes may be enhanced by teaching person-centred care skills. 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/

The serotonin transporter 5-HTTPR polymorphism is associated with current and lifetime depression in persons with chronic psychotic disorders.

PubMed

Contreras, J; Hare, L; Camarena, B; Glahn, D; Dassori, A; Medina, R; Contreras, S; Ramirez, M; Armas, R; Munoz, R; Mendoza, R; Raventos, H; Ontiveros, A; Nicolini, H; Palmer, R; Escamilla, M

2009-02-01

Variation in the serotonin transporter gene (SLC6A4) promoter region has been shown to influence depression in persons who have been exposed to a number of stressful life events. We evaluated whether genetic variation in 5-HTTLPR, influences current depression, lifetime history of depression and quantitative measures of depression in persons with chronic psychotic disorders. This is an association study of a genetic variant with quantitative and categorical definitions of depression conducted in the southwest US, Mexico and Costa Rica. We analyzed 260 subjects with a history of psychosis, from a sample of 129 families. We found that persons carrying at least one short allele had a statistically significant increased lifetime risk for depressive syndromes (P < 0.02, odds ratio 2.18, 95% CI 1.10-4.20). The 'ss' or 'sl' genotype at the 5-HTTLPR promoter polymorphic locus increases the risk of psychotic individuals to develop major depression during the course of their illness.

The development of a model of dignity in illness based on qualitative interviews with seriously ill patients.

PubMed

van Gennip, Isis E; Pasman, H Roeline W; Oosterveld-Vlug, Mariska G; Willems, Dick L; Onwuteaka-Philipsen, Bregje D

2013-08-01

While knowledge on factors affecting personal dignity of patients nearing death is quite substantial, far less is known about how patients living with a serious disease understand dignity. To develop a conceptual model of dignity that illuminates the process by which serious illness can undermine patients' dignity, and that is applicable to a wide patient population. Qualitative interview study. 34 patients with either cancer, early stage dementia, or a severe chronic illness were selected from an extensive cohort study into advance directives. In-depth interviews were carried out exploring the experiences of seriously ill patients with regard to their personal dignity. The interview transcripts were analyzed using thematic analysis and a conceptual model was constructed based on the resulting themes. We developed a two-step dignity model of illness. According to this model, illness related conditions do not affect patients' dignity directly but indirectly by affecting the way patients perceive themselves. We identified three components shaping self-perception: (a) the individual self: the subjective experiences and internally held qualities of the patient; (b) the relational self: the self within reciprocal interaction with others; and, (c) the societal self: the self as a social object in the eyes of others. The merits of the model are two-folded. First, it offers an organizing framework for further research into patients' dignity. Secondly, the model can serve to facilitate care for seriously ill patients in practice by providing insight into illness and dignity at the level of the individual patient where intervention can be effectively targeted. Copyright © 2013 Elsevier Ltd. All rights reserved.

Life insurance, living benefits, and physician-assisted death.

PubMed

Parker, Frederick R; Rubin, Harvey W; Winslade, William J

2004-01-01

One of the most significant concerns about the legalization of physician-assisted death in the United States relates to the possibility that a chronically or terminally ill person would choose to end her or his life for financial reasons. Because we believe that the life insurance industry is uniquely poised to help minimize any such incentive, we submit that it has a moral obligation to do so. In particular, we propose that the industry encourage greater flexibility in the payout of policy benefits in the event an insured should be diagnosed with a terminal illness or suffer from intractable pain.

The Chronic Illness Initiative: Supporting College Students with Chronic Illness Needs at DePaul University

ERIC Educational Resources Information Center

Royster, Lynn; Marshall, Olena

2008-01-01

College students with chronic illness find it difficult to succeed in traditional degree programs due to disruptions caused by relapses and unpredictable waxing and waning symptoms. College disability offices are often unable to help, both because their standard supports are not appropriate and because students with chronic illness frequently do…

The Special Educational Needs of Adolescents Living with Chronic Illness: A Literature Review

ERIC Educational Resources Information Center

Jackson, Megan

2013-01-01

Rates of chronic illness are increasing around the world and, accordingly, numbers of adolescent students living with chronic illness are also increasing. The challenges faced by these students and their teachers are complex. One of these challenges is the need of the adolescent with chronic illness to achieve some level of social conformity.…

[Living with a chronic progressive form of multiple sclerosis--a balance act].

PubMed

Hellige, Barbara

2002-12-01

There are only a few studies in the German speaking countries available which address the subject of the experience of chronically ill people during the course of their illness. Therefore it was the intent of this present study to find answers for central nurse science issues: How do people who suffer from a chronically progressive course of multiple sclerosis experience the downward trajectory? Which strategies do they develop in order to integrate the disease into their lives? In what ways does the scientific paradigm of medicine influence the perceptions of the illness and the life with it? After an analysis of the national and international state of nursing research follows a description of the methodology of the Grounded Theory and the individual examination steps of the study. The second part examines some essentials of the study. The results show that the trajectory is characterized by four phases. At first the ill person concentrates on the social discussion of the pathogenesis and the medical paradigma. But with physical experiences, exchange with other affected people and acquired information, those concerned develop a very case-specific knowledge. Often disillusioned by the medication strategies, based on the experience that their subjectivity and their individuality are not taken into account, they increasingly disapprove the deficit-oriented perspective of the professionals. They develop distinctly self-caring potentialities. To identify and support this self-care potentialities should be the very core of nursing.

Perceived consequences, changeability and personal control of coronary heart disease are associated with health-related quality of life.

PubMed

Sigurdardottir, Arun K; Sigurlásdóttir, Kolbrún; Ólafsson, Kjartan; Svavarsdóttir, Margrét Hrönn

2017-11-01

To explore changes in illness perception and health-related quality of life in patients with coronary heart disease following percutaneous coronary intervention from the time when patients were discharged from hospital and five months later and to investigate association between illness perception and physical and mental health-related quality of life at five-month follow-up. Illness perception is known to influence patients' motivation to engage in preventive behaviour. Prospective and comparative with two measurement points: at discharge from hospital (time 1) and five months later (time 2). Two self-administered questionnaires were used as follows: the Illness Perception Questionnaire-Revised measured illness perception and the Short Form Health Survey (SF-36) measured physical and mental health-related quality of life. The sample consisted of patients with coronary heart disease admitted to University Hospital between November 2011-April 2012. A total of 69 questionnaires were returned for both measurement times. Most responders were male (71%), mean age was 68·9 (SD 10·3) years. Health-related quality of life increased over time, and illness perception changed; five months after discharge, participants were more aware that the disease was chronic and could worsen suddenly, and they perceived that the disease had less of a consequence on their lives compared to when they were staying in the hospital. Associations between increased personal control, changeability of the disease, perceptions of less of a consequence of the disease on daily life and increased health-related quality of life were demonstrated at time 2. Perceptions of personal control, changeability and consequences of the disease should be assessed and discussed with cardiac patients, as these illness perceptions are related to physical and mental health-related quality of life. Increased understanding of consequences of the disease, personal control and perceived changeability of the illness affects health-related quality of life; these are factors that nurses in clinical practice can influence and thereby improve patients' outcomes. © 2017 John Wiley & Sons Ltd.

Development and Implementation of a Medication Adherence Training Instrument for Persons Living With HIV: The MATI

ERIC Educational Resources Information Center

McPherson-Baker, Shvawn; Jones, Deborah; Duran, Ron E.; Klimas, Nancy; Schneiderman, Neil

2005-01-01

Recent advances in the medical management of HIV offer the potential for increased longevity, improved quality of life, and the treatment of HIV as a chronic, rather than terminal, illness. The advent of highly active antiretroviral therapy (HAART) has required the necessity of strict adherence to complex medication regimens. As a vital factor in…

Florida's Adult Homeless Literacy Training & Basic Skills Assistance Project.

ERIC Educational Resources Information Center

Florida State Dept. of Education, Tallahassee. Div. of Vocational, Adult, and Community Education.

Some facts about the homeless population in Florida are the following: (1) 40,000 persons in Florida are homeless on any given day, with 40 percent of the total being families; (2) 65 percent are new homeless (not chronic); (3) 30 percent of the homeless are addicted to drugs or alcohol and 20 percent are mentally ill; (4) causes of homelessness…

Caring for teens with chronic illness: risky business?

PubMed

Louis-Jacques, Jennifer; Samples, Cathryn

2011-08-01

With advances in medicine, more children with chronic illness are reaching adolescence and young adulthood. Research has shown that this group is not immune to the behavioral risks endorsed by healthy adolescents. Recent literature exploring the etiology of risk behaviors and their impact on chronic illness is presented. Risk taking may be the result of differential maturation of two distinct parts of the adolescent brain. Risk taking can be considered normal in adolescents with chronic illness, but there is some evidence that chronic illness affects normal psychosocial development. Moreover, evidence supports that chronic illness can lead to disparities in risk education and assessment because of disease focused management rather than a more comprehensive approach. Youth living with chronic illnesses face unique challenges in accomplishing the developmental tasks of adolescence. These challenges include risk behaviors, which jeopardize current and future health. The reasons for risk taking are multifactorial and require providers to make the adolescent and not the illness the center of management. More research is needed on how to improve developmentally appropriate and relevant interventions to aid in safe passage into adulthood.

Activity as a predictor of mental well-being among older adults.

PubMed

Lampinen, P; Heikkinen, R-L; Kauppinen, M; Heikkinen, E

2006-09-01

This eight-year follow-up study examines the roles of physical and leisure activity as predictors of mental well-being among older adults born in 1904-1923. As part of the Evergreen project, 1224 (80%) persons aged 65-84 years were interviewed at baseline (1988), and 663 (90%) persons in the follow-up (1996). Mental well-being factors including depressive symptoms, anxiety, loneliness, self-rated mental vigour and meaning in life were constructed using factor analysis. The predictors of mental well-being included physical and leisure activity, mobility status and number of chronic illnesses. We used a path analysis model to examine the predictors of mental well-being. At baseline, low number of chronic illnesses, better mobility status and leisure activity were associated with mental well-being. Baseline mental well-being, better mobility status and younger age predicted mental well-being in the follow-up. Explanatory power of the path analysis model for the mental well-being factor at baseline was 19% and 35% in the follow-up. These findings suggest that mental well-being in later life is associated with activity, better health and mobility status, which should become targets for preventive measures.

Telephone-administered cognitive behavioral therapy: a case study of anxiety and depression in Parkinson's disease.

PubMed

Veazey, Connie; Cook, Karon F; Stanley, Melinda; Lai, Eugene C; Kunik, Mark E

2009-09-01

Parkinson's disease (PD) is a chronic medical illness with a high incidence of psychiatric comorbidity, specifically depression and anxiety. Research on treatment of such psychiatric complications is scarce. Non-pharmaceutical treatment options are especially attractive. Cognitive behavioral therapy (CBT) is a psychotherapeutic treatment option that has been successful in other chronically medically ill populations with comorbid depression and anxiety. The current research had two aims. The first was to pilot the feasibility of screening and identifying PD patients with symptoms of anxiety and depression in a specialized outpatient clinic. The second aim was to pilot the feasibility of telephone-administered CBT for the treatment of depression and anxiety in persons with PD, which was done through a case series comparing telephone-administered CBT to a Support strategy. A fairly large portion (67.5%) of patients screened in the outpatient clinic were identified as having symptoms of anxiety and/or depression. Results also indicated that CBT delivered via the telephone is a useful approach for targeting psychiatric symptoms in this population. A case example is given to illustrate the clinical considerations associated with delivering therapy via telephone to persons with PD.

Illness Uncertainty and Illness Intrusiveness as Predictors of Depressive and Anxious Symptomology in College Students with Chronic Illnesses

ERIC Educational Resources Information Center

Mullins, Alexandria J.; Gamwell, Kaitlyn L.; Sharkey, Christina M.; Bakula, Dana M.; Tackett, Alayna P.; Suorsa, Kristina I.; Chaney, John M.; Mullins, Larry L.

2017-01-01

Objective: To examine predictors of psychological functioning in college students with chronic illnesses. Participants: Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between…

Clinical and personality profiles and survival in patients with COPD.

PubMed

Ashutosh, K; Haldipur, C; Boucher, M L

1997-01-01

To assess the relationship of personality and clinical characteristics with survival in patients with advanced chronic obstructive pulmonary disease (COPD). Prospective double-blind study. Outpatient clinic of a teaching Veterans Affairs Hospital in central New York. PATIENT PARTICIPATION: Sixteen male patients (mean age, 62.2 +/- 2.5 years) with severe COPD INTERVENTIONS: Patients were administered Minnesota Multiphasic Personality Inventory (MMPI) test; their clinical features were recorded from hospital records at the time of admission into the study. All were followed up for 4 years after the initial assessment or until their death. The nine survivors and seven nonsurvivors were similar in age, pulmonary function test (PFT) results, oxygenation, number of medications, or concomitant illnesses. However, the nonsurvivors had higher MMPI and clinical illness scores compared with the survivors (p < 0.01 and < 0.05, respectively). The 4-year mortality in male veterans with severe COPD is influenced by overall psychological distress and difficulty in coping with their disease, which seem to be important prognostic indicators irrespective of PFT results or oxygenation.

The threatened self: Considerations of time, place, and uncertainty in advanced illness.

PubMed

Nanton, Veronica; Munday, Dan; Dale, Jeremy; Mason, Bruce; Kendall, Marilyn; Murray, Scott

2016-05-01

Loss of self and the transition to patient-hood have been widely discussed in relation to the experience of advanced illness. Individuals however often maintain identities or selves beyond those demanded by the circumstances of being a patient. This study explores the presentation of this personal identity and interactions between intrinsic and extrinsic elements that support or threaten its maintenance. In particular, this study examined the impact of uncertainty on the representations of self and the part played by the patient's health care professionals and the systems in which they are embedded, in limiting or reinforcing its effects. Complementary methods of ethnographic observation and serial narrative interviews were adopted to explore both the lo"cal social and health care context and the changing presentation of self by patients with advanced multimorbidity, chronic illness, and cancer. In total, 36 interviews were undertaken with 16 patients. Analysis was guided by concepts of time and place, combining contextual data with the unfolding patient narrative. Good pain and symptom control was a necessary, but not sufficient, condition for the maintenance of a personal identity. Essential agentic elements included knowledge of appropriate and immediate sources of help. Also important were a sense of control achieved through a shared understanding with health care professionals of the condition and active management of uncertainty. In addition, the maintenance of self depended on keeping a connection with aspects of life associated with a pre-illness identity. Critically, this self was contingent on external recognition, acknowledgement, and validation. Professional relationships that focus solely on the 'person as patient' may be insufficient for patients' needs. Health care professionals should seek to recognize and acknowledge the personal identity that may be critical to their sense of self-worth. Through an ongoing relationship guiding the patient through the uncertainties they face, health care professionals may play an essential role in sustaining the 'patient as person'. What is already known on this subject? Loss of self or personal identity occurs in a range of serious conditions. The sick self is incorporated in a process of identity reconstruction. Uncertainty is an inherent aspect of serious and advanced illness. Unmanaged uncertainty results in a range of negative psychological consequences that contribute to the loss of personal identity. Information and communication with health care professionals help patients manage uncertainty. What does this study add? Sufferers may retain a personal identity continuous with a pre-illness self using internal and external resources. The pre-illness self may be subsumed by the patient self especially at times of transition and maximum uncertainty. Acknowledgement and facilitation by health care professionals can enable the preservation of the pre-illness self. © 2015 The British Psychological Society.

Use of general medical services among Medicaid patients with severe and persistent mental illness.

PubMed

Salsberry, Pamela J; Chipps, Esther; Kennedy, Carol

2005-04-01

The aim of this study was to examine patterns of use of general medical services among persons with a severe and persistent mental illness enrolled in Medicaid from 1996 to 1998. A total of 669 persons with a severe and persistent mental illness were identified by using statewide clinical criteria. A three-year database of Medicaid claims was developed to examine service use. The main outcome measures were use of outpatient services for a general medical problem, use of dental and vision services, and use of screening tests for women. Service use was examined by primary psychiatric diagnosis (schizophrenic, affective, paranoid, and anxiety disorders), and analyses controlled for the presence of a chronic medical condition, age, race, and sex. This study found high levels of service use for outpatient services but very low levels for primary and preventive services. Although 78 percent of persons with a schizophrenic disorder had an office-based visit during the three-year period, all persons with an anxiety disorder had such a visit. Sixty-nine percent of persons with a schizophrenic disorder had at least one emergency department visit, whereas 83 percent of those with an anxiety disorder had such a visit. Dental and vision visits and the use of mammograms and pap tests followed the same pattern; persons with a schizophrenic disorder had fewer visits and had less overall use than the other diagnostic groups. The use patterns across the four groups were significantly different in outpatient service use, dental and vision service use, and screening tests for women. Compared with persons with a schizophrenic disorder, those with an anxiety disorder were more likely to have had an office-based visit and to have received vision services, those with a paranoid disorder were more likely to have used dental services or received a mammogram, and those with an affective disorder were more likely to have had a pap test. Although this group of Medicaid patients with severe and persistent mental illness had access to providers, they received an unacceptably low level of preventive care. Use of health services for general medical problems differed somewhat by primary psychiatric illness.

Self-esteem of children and adolescents with chronic illness: a meta-analysis.

PubMed

Pinquart, M

2013-03-01

Chronic illness may be a risk factor for low self-esteem; however, previous meta-analyses are inconclusive whether children with a chronic illness have lower self-esteem than their healthy peers. The goal of the present study was to summarize available research in order to compare the self-esteem of children and adolescents with a chronic illness with that of healthy children. Random-effects meta-analysis was used to integrate the results of 621 empirical studies that compare levels of self-esteem of children with a chronic physical illness with healthy peers or general test norms. Studies were identified via the electronic databases Adolesc, Embase, Google Scholar, MEDLINE, PSNYDEX, PSYCINFO, and cross-referencing. Children with chronic illnesses have lower self-esteem than healthy peers or test norms (g = -0.18 standard deviation units). The lowest levels of self-esteem were observed in children with chronic fatigue syndrome and chronic headaches. Lower levels of self-esteem in children with a chronic illness were found in girls than in boys, in adolescents than in children, in children from developing or threshold countries, when results were collected from observer ratings rather than child reports, in studies published in the 1990s, and when children with chronic illnesses were directly compared with healthy children instead of test norms. Paediatricians, parents, and teachers should promote experiences of success and positive peer-relations, which are important sources of self-esteem. In addition, psychosocial interventions for children with chronic illnesses should be offered for children with reduced self-esteem. © 2012 Blackwell Publishing Ltd.

Can the Fatigue Severity Scale 7-item version be used across different patient populations as a generic fatigue measure - a comparative study using a Rasch model approach

PubMed Central

2014-01-01

Background Fatigue is a disabling symptom associated with reduced quality of life in various populations living with chronic illnesses. The transfer of knowledge about fatigue from one group to another is crucial in both research and healthcare. Outcomes should be validly and reliably comparable between groups and should not be unduly influenced by diagnostic variations. The present study evaluates whether the Fatigue Severity Scale 7-item version (FSS-7) demonstrates similar item hierarchy across people with multiple sclerosis, stroke or HIV/AIDS to ensure valid comparisons between groups, and provide further evidence of internal scale validity. Methods A secondary comparative analysis was performed using data from three different studies of three different chronic illnesses: multiple sclerosis, stroke and HIV/AIDS. Each of these studies had previously concluded that the FSS-7 has better psychometric properties than the original FSS for measuring fatigue interference. Data from 224 people with multiple sclerosis, 104 people with stroke and 316 people with HIV/AIDS were examined. Item response theory and a Rasch model were chosen to analyze the similarity of the FSS-7 item hierarchy across the three diagnostic groups Results Cross-sample differences were found for items #3, #5, #6 and #9 for two of the three samples, which raise questions about item validity across groups. However, disease-specific and disease-generic Rasch measures were similar across samples, indicating that individual fatigue interference measures in these three chronic illnesses might still be reliably comparable using the FSS-7. Conclusions Some items performed differently between the three samples but did not bias person measures, thereby indicating that fatigue interference in these illnesses might still be reliably compared using FSS-7 scores. However, caution is warranted when comparing fatigue raw sum scores directly across diagnostic groups using the FSS-7. Further studies of the scale are needed in other types of chronic illnesses. PMID:24559076

Inflammation, aging, and cancer: tumoricidal versus tumorigenesis of immunity: a common denominator mapping chronic diseases.

PubMed

Khatami, Mahin

2009-01-01

Acute inflammation is a highly regulated defense mechanism of immune system possessing two well-balanced and biologically opposing arms termed apoptosis ('Yin') and wound healing ('Yang') processes. Unresolved or chronic inflammation (oxidative stress) is perhaps the loss of balance between 'Yin' and 'Yang' that would induce co-expression of exaggerated or 'mismatched' apoptotic and wound healing factors in the microenvironment of tissues ('immune meltdown'). Unresolved inflammation could initiate the genesis of many age-associated chronic illnesses such as autoimmune and neurodegenerative diseases or tumors/cancers. In this perspective 'birds' eye' view of major interrelated co-morbidity risk factors that participate in biological shifts of growth-arresting ('tumoricidal') or growth-promoting ('tumorigenic') properties of immune cells and the genesis of chronic inflammatory diseases and cancer will be discussed. Persistent inflammation is perhaps a common denominator in the genesis of nearly all age-associated health problems or cancer. Future challenging opportunities for diagnosis, prevention, and/or therapy of chronic illnesses will require an integrated understanding and identification of developmental phases of inflammation-induced immune dysfunction and age-associated hormonal and physiological readjustments of organ systems. Designing suitable cohort studies to establish the oxido-redox status of adults may prove to be an effective strategy in assessing individual's health toward developing personal medicine for healthy aging.

Sharing clinical information across care settings: the birth of an integrated assessment system

PubMed Central

Gray, Leonard C; Berg, Katherine; Fries, Brant E; Henrard, Jean-Claude; Hirdes, John P; Steel, Knight; Morris, John N

2009-01-01

Background Population ageing, the emergence of chronic illness, and the shift away from institutional care challenge conventional approaches to assessment systems which traditionally are problem and setting specific. Methods From 2002, the interRAI research collaborative undertook development of a suite of assessment tools to support assessment and care planning of persons with chronic illness, frailty, disability, or mental health problems across care settings. The suite constitutes an early example of a "third generation" assessment system. Results The rationale and development strategy for the suite is described, together with a description of potential applications. To date, ten instruments comprise the suite, each comprising "core" items shared among the majority of instruments and "optional" items that are specific to particular care settings or situations. Conclusion This comprehensive suite offers the opportunity for integrated multi-domain assessment, enabling electronic clinical records, data transfer, ease of interpretation and streamlined training. PMID:19402891

Health Vlogs as Social Support for Chronic Illness Management.

PubMed

Huh, Jina; Liu, Leslie S; Neogi, Tina; Inkpen, Kori; Pratt, Wanda

2014-08-01

Studies have shown positive impact of video blogs (vlogs) on patient education. However, we know little on how patient-initiated vlogs shape the relationships among vloggers and viewers. We qualitatively analyzed 72 vlogs on YouTube by users diagnosed with HIV, diabetes, or cancer and 1,274 comments posted to the vlogs to understand viewers' perspectives on the vlogs. We found that the unique video medium allowed intense and enriched personal and contextual disclosure to the viewers, leading to strong community-building activities and social support among vloggers and commenters, both informationally and emotionally. Furthermore, the unique communication structure of the vlogs allowed ad hoc small groups to form, which showed different group behavior than typical text-based social media, such as online communities. We provide implications to the Health Care Industry (HCI) community on how future technologies for health vlogs could be designed to further support chronic illness management.

Temperament and character profiles of patients with chronic idiopathic urticaria

PubMed Central

Canan, Fatih; Karakaş, Ayşe Akman; Geçici, Nihal

2015-01-01

Introduction Psychosocial factors have been implicated as being important in the onset and/or exacerbation of urticaria. Aim To examine both personality factors of patients with chronic idiopathic urticaria (CIU) and the correlations between illness duration, severity of itching, urticaria activity score (UAS) and temperament-character dimensions. Material and methods A total number of 70 CIU patients and 60 healthy individuals were included in the study. The Temperament and Character Inventory (TCI) was administered individually. The relationship between UAS, illness duration and severity of pruritus and TCI subscales were evaluated. Results The CIU group had significantly higher scores of novelty seeking and lower scores of cooperativeness, reward dependence and self-directedness than the control group. Conclusions The current study shows that CIU patients have distinctive temperament and character dimensions when compared with the control group. We suggest that evaluation and treatment of CIU should also include psychosomatic approaches in clinical practice. PMID:26161056

Health Vlogs as Social Support for Chronic Illness Management

PubMed Central

HUH, JINA; LIU, LESLIE S.; NEOGI, TINA; INKPEN, KORI; PRATT, WANDA

2015-01-01

Studies have shown positive impact of video blogs (vlogs) on patient education. However, we know little on how patient-initiated vlogs shape the relationships among vloggers and viewers. We qualitatively analyzed 72 vlogs on YouTube by users diagnosed with HIV, diabetes, or cancer and 1,274 comments posted to the vlogs to understand viewers’ perspectives on the vlogs. We found that the unique video medium allowed intense and enriched personal and contextual disclosure to the viewers, leading to strong community-building activities and social support among vloggers and commenters, both informationally and emotionally. Furthermore, the unique communication structure of the vlogs allowed ad hoc small groups to form, which showed different group behavior than typical text-based social media, such as online communities. We provide implications to the Health Care Industry (HCI) community on how future technologies for health vlogs could be designed to further support chronic illness management. PMID:26146474

Florence Nightingale: her personality type.

PubMed

Dossey, Barbara M

2010-03-01

This article casts new and refreshing light on Florence Nightingale's life and work by examining her personality type. Using the theory-based Myers-Briggs Type Indicator (MBTI), the author examines Nightingale's personality type and reveals that she was an introverted-intuitive-thinking-judging type. The merit of using the MBTI is that it allows us to more clearly understand three major areas of Nightingale's life that have been partially unacknowledged or misunderstood: her spiritual development as a practicing mystic, her management of her chronic illness to maintain her prodigious work output, and her chosen strategies to transform her visionary ideas into new health care and social realities.

‘You learn to live with all the things that are wrong with you’: gender and the experience of multiple chronic conditions in later life

PubMed Central

CLARKE, LAURA HURD; BENNETT, ERICA

2014-01-01

This article examines how older adults experience the physical and social realities of having multiple chronic conditions in later life. Drawing on data from in-depth interviews with 16 men and 19 women aged 73+ who had between three and 14 chronic conditions, we address the following research questions: (a) What is it like to have multiple chronic conditions in later life? (b) How do older men and women ‘learn to live’ with the physical and social realities of multiple morbidities? (c) How are older adults’ experiences of illness influenced by age and gender norms? Our participants experienced their physical symptoms and the concomitant limitations to their activities to be a source of personal disruption. However, they normalised their illnesses and made social comparisons in order to achieve a sense of biographical flow in distinctly gendered ways. Forthright in their frustration over their loss of autonomy and physicality but resigned and stoic, the men’s stories reflected masculine norms of control, invulnerability, physical prowess, self-reliance and toughness. The women were dismayed by their bodies’ altered appearances and concerned about how their illnesses might affect their significant others, thereby responding to feminine norms of selflessness, sensitivity to others and nurturance. We discuss the findings in relation to the competing concepts of biographical disruption and biographical flow, as well as successful ageing discourses. PMID:24976658

Psychological predictors for health-related quality of life and disability in persons with chronic obstructive pulmonary disease (COPD).

PubMed

Mewes, Ricarda; Rief, Winfried; Kenn, Klaus; Ried, Jens; Stenzel, Nikola

2016-01-01

Individuals with chronic obstructive pulmonary disease (COPD) exhibit low physical and mental health-related quality of life (HRQL) and high susceptibility to disability. We investigated the influence of psychological factors on HRQL and disability in COPD individuals recruited from the general population. In line with Leventhal's common sense model, we expected psychological factors to be associated with HRQL and disability even after controlling for medical status. Individuals with COPD (n = 502; 59.7 years old; GOLD grades were I: 3%, II: 17%, III: 34%, IV: 46%) were assessed through an online survey administered via COPD patient organisations in Germany. Individuals filled in the Short Form Health Survey (SF-12), COPD Assessment Test, Patient Health Questionnaire (modules: GAD-2, PHQ-15, PHQ-9), Brief Illness Perception Questionnaire, a questionnaire that assesses causal illness attributions, and the internal illness-related locus of control scale of the 'KKG questionnaire for the assessment of control beliefs about illness and health'. Multiple linear regressions were calculated. The investigated factors explained high variances (disability = 56%, physical HRQL = 28%, mental HRQL = 63%, p ≤ .001). Better mental health, more optimistic illness perceptions, attribution to psychological causes, and stronger internal locus of control were associated with lower disability and better HRQL. Comorbid somatic symptoms contributed to high disability and low quality of life. Psychological factors, such as illness perception, attribution and internal locus of control, were associated with disability and HRQL. These factors should be considered when designing treatments for individuals with COPD, and adequate interventions should be provided to enhance illness understanding and self-management skills.

Loneliness and Quality of Life in Chronically Ill Rural Older Adults

PubMed Central

Theeke, Laurie A.; Mallow, Jennifer

2015-01-01

Background Loneliness is a contributing factor to various health problems in older adults, including complex chronic illness, functional decline, and increased risk of mortality. Objectives A pilot study was conducted to learn more about the prevalence of loneliness in rural older adults with chronic illness and how it affects their quality of life. The purposes of the data analysis reported here were twofold: to describe loneliness, chronic illness diagnoses, chronic illness control measures, prescription medication use, and quality of life in a sample of rural older adults; and to examine the relationships among these elements. Methods A convenience sample of 60 chronically ill older adults who were community dwelling and living in Appalachia was assessed during face-to-face interviews for loneliness and quality of life, using the University of California, Los Angeles (UCLA) Loneliness Scale (version 3) and the CASP-12 quality of life scale. Chronic illness diagnoses, chronic illness control measures, and medication use data were collected through review of participants’ electronic medical records. Results Overall mean loneliness scores indicated significant loneliness. Participants with a mood disorder such as anxiety or depression had the highest mean loneliness scores, followed by those with lung disease and those with heart disease. Furthermore, participants with mood disorders, lung disease, or heart disease had significantly higher loneliness scores than those without these conditions. Loneliness was significantly related to total number of chronic illnesses and use of benzodiazepines. Use of benzodiazepines, diuretics, nitrates, and bronchodilators were each associated with a lower quality of life. Conclusions Nurses should assess for loneliness as part of their comprehensive assessment of patients with chronic illness. Further research is needed to design and test interventions for loneliness. PMID:23958674

THE ADOPTION OF BUDDHISM'S PRINCIPLES AS A MEANS OF IMPROVING PHYSICIANS' WORK WITH TERMINALLY ILL PATIENTS.

PubMed

Wolf, Ruth

2014-10-01

The medical approach as summarized by Leibowitz--"We must treat the person, not just the disease"--highlights the importance of treating the sick person and not only the illness' pathology. This approach calls for healing not only the physical side, but also--and mainly--the mental aspect of the patient. One of the goals of this article is to turn physicians' attention towards the compassion necessary in treating a person with a severe or chronic illness, or a person who is dying--precisely because sometimes there is no medical cure for the physical state of such a patient. Therefore, physicians' attention does need to be directed to providing emotional assistance to such a patient. Sometimes, the emotional strength the patient draws from the medical team that is treating him can change his view of, and approach to, the illness, and can enable his body to muster the emotional strength necessary to deal with his situation. Buddhism's approach enables the sick patient to experience his illness in a different way, by making peace with one's situation and, sometimes, even viewing the situation differently--viewing the illness as a type of renewal. Buddhism, therefore, enables a sick person to choose a different point of view when his energy is exhausted and he loses hope, providing quality of life to patients. In such a situation, a sick person finds emotional strength in the knowledge that the end of his life is actually a renewal somewhere else. The limited life expectancy of the terminally ill patient demands that he be able to spend his time with minimal concerns and worries, and does not leave much time for treating the emotional side--the patient's fear. In light of this fact, the patient's ability to look ahead and grasp at hope is the most important issue. As much as possible, this is accomplished in an atmosphere of acceptance and with the absence, or reduction, of fear. The freedom to decide for oneself how to behave, according to one's own approach, is what makes it possible for the sick individual to feel empowered, and is liable to encourage the patient to adopt a different point of view. The Buddhist approach recommends replacing the helplessness that usually accompanies the predicament of terminally ill patients with acceptance of responsibility for their behavior in any given situation; this is Buddhism's main contribution to both physicians and patients alike.

Rumination, depressive symptoms and awareness of illness in schizophrenia.

PubMed

Thomas, Neil; Ribaux, Darryl; Phillips, Lisa J

2014-03-01

Depressive symptoms are common in schizophrenia. Previous studies have observed that depressive symptoms are associated with both insight and negative appraisals of illness, suggesting that the way in which the person thinks about their illness may influence the occurrence of depressive responses. In affective disorders, one of the most well-established cognitive processes associated with depressive symptoms is rumination, a pattern of perseverative, self-focused negative thinking. This study examined whether rumination focused on mental illness was predictive of depressive symptoms during the subacute phase of schizophrenia. Forty participants with a diagnosis of schizophrenia and in a stable phase of illness completed measures of rumination, depressive symptoms, awareness of illness, and positive and negative symptoms. Depressive symptoms were correlated with rumination, including when controlling for positive and negative symptoms. The content of rumination frequently focused on mental illness and its causes and consequences, in particular social disability and disadvantage. Depressive symptoms were predicted by awareness of the social consequences of mental illness, an effect that was mediated by rumination. Results suggest that a process of perseveratively dwelling upon mental illness and its social consequences may be a factor contributing to depressive symptoms in people with chronic schizophrenia.

The duality of health technology in chronic illness: how designers envision our future.

PubMed

Lehoux, Pascale

2008-06-01

This essay critically explores the role of technological innovation in the constitution of chronic states and illness. Drawing on the co-construction of technology and society perspective, it focuses more specifically on the way in which innovation designers envisage the enhancement of the chronically ill and build certain kinds of socio-technical configuration to deal with chronic illness. Using the case of ;intelligent distance patient monitoring' as an illustration, the paper argues that technology creates as much as it solves the problem of chronic illness. Technology is recursively embedded in chronic illness and it generates dual effects: it constrains and sustains users' daily practices. Only by recognizing technology's duality and eventually transcending it will research and policy initiatives be able to deal creatively and responsibly with the design of our future health experiences.

Young adult outcomes of children growing up with chronic illness: an analysis of the National Longitudinal Study of Adolescent Health.

PubMed

Maslow, Gary R; Haydon, Abigail A; Ford, Carol Ann; Halpern, Carolyn Tucker

2011-03-01

To examine young adult outcomes in a nationally representative US cohort of young adults growing up with a chronic illness. Secondary analysis of nationally representative data from wave III (in 2001) of the National Longitudinal Study of Adolescent Health. United States. The analytic sample comprised 13 236 young adults aged 18 to 28 years at wave III. Self-report of a chronic physical illness (asthma, cancer, diabetes mellitus, or epilepsy) in adolescence. Respondents with asthma or nonasthmatic chronic illness (cancer, diabetes mellitus, or epilepsy) were compared with individuals without these conditions. Self-report of high school graduation, ever having employment, currently having employment, living with a parent/guardian, and ever receiving public assistance. Three percent of young adults had nonasthmatic chronic illness (cancer, diabetes, or epilepsy), and 16.0% had asthma. Most young adults with chronic illness graduated high school (81.3%) and currently had employment (60.4%). However, compared with healthy young adults, those with nonasthmatic chronic illness were significantly less likely to graduate high school, ever have had employment, or currently have employment and were more likely to receive public assistance. Compared with young adults with asthma, those with nonasthmatic chronic illness again had significantly worse young adult outcomes on all measures. Most young adults growing up with a chronic illness graduate high school and have employment. However, these young adults are significantly less likely than their healthy peers to achieve these important educational and vocational milestones.

The Australian Vietnam Veterans Health Study: II. self-reported health of veterans compared with the Australian population.

PubMed

O'Toole, B I; Marshall, R P; Grayson, D A; Schureck, R J; Dobson, M; Ffrench, M; Pulvertaft, B; Meldrum, L; Bolton, J; Vennard, J

1996-04-01

Self-reported physical health status of Australian Vietnam veterans was determined 20-25 years after the war and its relation to combat was investigated. An epidemiological cohort study of a simple random sample of Army veterans posted to Vietnam between 1964 and 1972 was conducted with personal interviews using the Australian Bureau of Statistics Health Interview Survey questionnaire to compare veterans with the Australian population and a 21-item combat exposure index used to measure the relationship of combat to physical health. Veterans reported greater health service usage and more recent health actions than population expectations. They also reported excess health problems in almost all recent illness disease categories except endocrine conditions and cardiovascular conditions; only 6 of 37 chronic disease groups were not elevated compared to the population. Adjustment for non-response changed estimates only slightly. Combat exposure was significantly related to reports of recent and chronic mental disorders, recent hernia and chronic ulcer, recent eczema and chronic rash, deafness, chronic infective and parasitic disease, chronic back disorders and symptoms, signs and ill-defined conditions. Combat exposure may have significantly increased reports of only some health problems. A general position to complain as a result of psychological conditions due to combat is not consistent with the lack of relationship between combat and reports of physical conditions.

Cultural expressions of bodily awareness among chronically ill Filipino Americans.

PubMed

Becker, Gay

2003-01-01

To describe Filipino Americans' cultural traditions surrounding bodily awareness, especially how the principle of balance informs their views, and the link to self-management of chronic illness. This qualitative study used semistructured interviews with 85 Filipino Americans between the ages of 46 and 97 years. Volunteers were recruited from numerous health care sites in 1 geographic location in the United States. Respondents had 1 or more chronic illnesses. Taped and transcribed interviews were coded and evaluated for themes. The concept of balance was central to Filipino Americans' portrayal of bodily awareness of signs and symptoms related to chronic illnesses, as well as to actions they took to manage their chronic illnesses. Efforts were made to control chronic illnesses through a variety of self-care practices. Diet posed a particular challenge because of the symbolic importance of food in Filipino culture and its use in the maintenance of social relationships. The ways in which Filipino Americans combine attention to the body, values of balance and harmony, and emphasis on social well-being result in heightened attention to bodily processes. Filipino Americans' emphasis on bodily awareness suggests that this particular cultural strength can be used to enhance chronic illness management. Awareness of the cultural traditions of Filipino Americans can facilitate patient education about how to manage chronic illnesses.

Parental Involvement of Mothers with Chronic Illness and Children's Academic Achievement

ERIC Educational Resources Information Center

Chen, Yung-Chi; Fish, Marian C.

2013-01-01

This study examined how maternal chronic illnesses may affect children's academic achievement through parental involvement. A total of 189 mothers diagnosed with chronic illnesses, such as multiple sclerosis, diabetes, cancer, HIV/AIDS, chronic pain, asthma, myelodysplasic syndrome, and fibromyalgia, and with a child in middle school or high…

Interplay among patient empowerment and clinical and person-centered outcomes in type 2 diabetes. The BENCH-D study.

PubMed

Rossi, Maria Chiara; Lucisano, Giuseppe; Funnell, Martha; Pintaudi, Basilio; Bulotta, Angela; Gentile, Sandro; Scardapane, Marco; Skovlund, Soren Eik; Vespasiani, Giacomo; Nicolucci, Antonio

2015-09-01

We evaluated empowerment in T2DM and identified its correlates. A sample of individuals self-administered the Diabetes Empowerment Scale-Short Form (DES-SF) and other 9 validated instruments (person-centered outcomes). Correlates of DES-SF were identified through univariate and multivariate analyses. For person-centered outcomes, ORs express the likelihood of being in upper quartile of DES-SF (Q4) by 5 units of the scale. Overall, 2390 individuals were involved. Individuals in Q4 were younger, more often males, had higher levels of school education, lower HbA1c levels and prevalence of complications as compared to individuals in the other quartiles. The likelihood of being in Q4 was directly associated with higher selfreported self-monitoring of blood glucose (SDSCA6-SMBG) (OR=1.09; 95% CI: 1.03-1.15), higher satisfaction with diabetes treatment (GSDT) (OR=1.15; 95% CI: 1.07-1.25), perceived quality of chronic illness care and patient support (PACIC-SF) (OR=1.23; 95% CI: 1.16-1.31), and better person-centered communication (HCC-SF) (OR=1.10; 95% CI: 1.01-1.19) and inversely associated with diabetes-related distress (PAID-5) (OR=0.95; 95% CI: 0.92-0.98). Adjusted DES-SF mean scores ranged between centers from 69.8 to 93.6 (intra-class correlation=0.10; p<0.0001). Empowerment was associated with better glycemic control, psychosocial functioning and perceived access to person-centered chronic illness care. Practice of diabetes center plays a specific role. DES-SF represents a process and outcome indicator in the practice of diabetes centers. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

The impact of the housing crisis on self-reported health in Europe: multilevel longitudinal modelling of 27 EU countries

PubMed Central

Reeves, Aaron; Loopstra, Rachel; McKee, Martin; Dorling, Danny; Stuckler, David

2016-01-01

Background: Many EU nations experienced a significant housing crisis during the Great Recession of 2008–10. We evaluated the consequences of housing payment problems for people’s self-reported overall health. Methods: We used longitudinal data from the EU Statistics on Income and Living Conditions survey covering 27 countries from 2008 to 2010 to follow a baseline sample of persons who did not have housing debt and who were employed (45 457 persons, 136 371 person–years). Multivariate linear regression and multilevel models were used to evaluate the impact of transitions into housing arrears on self-reported health, correcting for the presence of chronic illness, health limitations, and other potential socio-demographic confounders. Results: Persons who transitioned into housing arrears experienced a significant deterioration in self-reported overall health by − 0.03 U (95% CI − 0.01 to − 0.04), even after correcting for chronic illness, disposable income and employment status, and individual fixed effects. This association was independent and similar in magnitude to that for job loss (−0.02, 95% CI: −0.01 to − 0.04). We also found that the impact of housing arrears was significantly worse among renters, corresponding to a mean 0.11 unit additional drop in health as compared with owner-occupiers. These adverse associations were only evident in persons below the 75th percentile of disposable income. Discussion: Our analysis demonstrates that persons who suffer housing arrears experience increased risk of worsening self-reported health, especially among those who rent. Future research is needed to understand the role of alternative housing support systems and available strategies for preventing the health consequences of housing insecurity. PMID:27221606

Persistent inflammation, immunosuppression, and catabolism and the development of chronic critical illness after surgery.

PubMed

Efron, Philip A; Mohr, Alicia M; Bihorac, Azra; Horiguchi, Hiroyuki; Hollen, McKenzie K; Segal, Mark S; Baker, Henry V; Leeuwenburgh, Christiaan; Moldawer, Lyle L; Moore, Frederick A; Brakenridge, Scott C

2018-05-25

As early as the 1990s, chronic critical illness, a distinct syndrome of persistent high-acuity illness requiring management in the ICU, was reported under a variety of descriptive terms including the "neuropathy of critical illness," "myopathy of critical illness," "ICU-acquired weakness," and most recently "post-intensive care unit syndrome." The widespread implementation of targeted shock resuscitation, improved organ support modalities, and evidence-based protocolized ICU care has resulted in significantly decreased in-hospital mortality within surgical ICUs, specifically by reducing early multiple organ failure deaths. However, a new phenotype of multiple organ failure has now emerged with persistent but manageable organ dysfunction, high resource utilization, and discharge to prolonged care facilities. This new multiple organ failure phenotype is now clinically associated with the rapidly increasing incidence of chronic critical illness in critically ill surgery patients. Although the underlying pathophysiology driving chronic critical illness remains incompletely described, the persistent inflammation, immunosuppression, and catabolism syndrome has been proposed as a mechanistic framework in which to explain the increased incidence of chronic critical illness in surgical ICUs. The purpose of this review is to provide a historic perspective of the epidemiologic evolution of multiple organ failure into persistent inflammation, immunosuppression, and catabolism syndrome; describe the mechanism that drives and sustains chronic critical illness, and review the long-term outcomes of surgical patients who develop chronic critical illness. Copyright © 2018 Elsevier Inc. All rights reserved.

Resilience in the face of serious illness among chronically ill African Americans in later life.

PubMed

Becker, Gay; Newsom, Edwina

2005-07-01

The purpose of this work was to examine older African Americans' philosophies about their chronic illnesses and how those philosophies affected chronic illness management. Three to five in-depth interviews were conducted over the course of several years with 38 respondents between the ages of 65 and 91. Both open-ended and semistructured questions were asked. Respondents demonstrated determination, perseverance, and tenacity no matter how serious their illnesses were. Racism was instrumental in shaping the responses of these African Americans to their illnesses through cultural values that emphasized independence, spirituality, and survival. Respondents demonstrated a resilient philosophy as they faced disabling illness. This research attests to the importance of examining racism in the analysis of how older ethnic minorities live with chronic illness, as it provides the context for understanding the development of culturally specific philosophies about illness. Resilience, as a culturally specific philosophy, is an important adjunct to chronic illness management in later life, and more needs to be understood about the dimensions that shape it by cultural group.

Illness cognitions as a pathway between religiousness and subjective health in chronic cardiac patients.

PubMed

Karademas, Evangelos C

2010-03-01

The aim of this study was to examine the role of illness cognitions as a possible pathway between religiousness and subjective health in chronic illness. A sample of 135 chronic cardiac patients completed questionnaires about intrinsic religiousness, frequency of church service attendance, basic illness cognitions (i.e., helplessness, illness acceptance, perceived benefits), and physical and emotional well-being. According to the results, religiousness was significantly associated with subjective health. However, this relationship was indirect, with helplessness and illness acceptance serving as mediators between intrinsic religiousness and health. This finding is significant for understanding the complex relation of religiousness to chronic patients' well-being.

Exploring Hospice Decisions: The Road from the Institute on Aging and Social Work to an ARRA Challenge Grant

ERIC Educational Resources Information Center

Waldrop, Deborah

2014-01-01

Decisions about treatment and options for care at the end stage of an advanced chronic illness are important determinants of the quality of a person's death and of how family members adapt in bereavement. This article describes the steps taken to secure federal funding to study how people make the decision to enroll in hospice. The National…

The International Symposium on Music in Medicine, Education, and Therapy for the Handicapped (3rd, Ebeltoft, Denmark, July 31-August 5, 1983).

ERIC Educational Resources Information Center

Pratt, Rosalie Rebollo, Ed.

Eighteen author-contributed papers are presented from a 1983 Ebeltoft, Denmark conference on clinical uses of music for disabled and chronically ill persons. The following authors and titles are represented: "Music Perception" (J. Davies); "Central Auditory Dysfunction: Implications for Music and the Handicapped" (C. DeFosse and R. Price);…

Evaluation of a family systems intervention for managing pediatric chronic illness: Mastering Each New Direction (MEND).

PubMed

Distelberg, Brian; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne; Pandit, Mayuri

2014-06-01

Family systems play a crucial, albeit complex, role in pediatric chronic illness. Unfortunately, very few psychosocial interventions are available to help these stressed families navigate the developmental steps of chronic illness. A new intervention (MEND) addresses the needs of these families and applies to a broad range of chronic illnesses. This article presents this family systems intervention as well as includes preliminary program evaluation data on 22 families that graduated from the program. Results show consistently strong effects across an array of psychosocial measures. Conclusions from this preliminary study suggest that families entering MEND present with high levels of stress due to the child's chronic illness, but after MEND, the level of stress and other functioning measures are comparable to those seen in healthy families, suggesting that the program offers a significant benefit to families with pediatric chronic illness. © 2014 FPI, Inc.

Evaluation of a Family Systems Intervention for Managing Pediatric Chronic Illness: Mastering Each New Direction (MEND)

PubMed Central

Distelberg, Brian; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne; Pandit, Mayuri

2015-01-01

Family systems play a crucial, albeit complex, role in pediatric chronic illness. Unfortunately, very few psychosocial interventions are available to help these stressed families navigate the developmental steps of chronic illness. A new intervention (MEND) addresses the needs of these families and applies to a broad range of chronic illnesses. This article presents this family systems intervention as well as includes preliminary program evaluation data on 22 families that graduated from the program. Results show consistently strong effects across an array of psychosocial measures. Conclusions from this preliminary study suggest that families entering MEND present with high levels of stress due to the child's chronic illness, but after MEND, the level of stress and other functioning measures are comparable to those seen in healthy families, suggesting that the program offers a significant benefit to families with pediatric chronic illness. PMID:24635346

Chronic Illnesses and Depressive Symptoms Among Older People: Functional Limitations as a Mediator and Self-Perceptions of Aging as a Moderator.

PubMed

Han, Jina

2017-05-01

This research examined the mediation of functional limitations in the relationship between chronic illnesses and depressive symptoms among older Americans along with tests for the moderation of self-perceptions of aging. Data from the Health and Retirement Study (2008, 2010, and 2012) were used. Longitudinal mediation models were tested using a sample of 3,382 Americans who responded to psychosocial questions and were over 65 years old in 2008. Functional limitations mediated the linkage between chronic illnesses and depressive symptoms. Negative self-perceptions of aging exacerbated the effects of chronic illnesses on depressive symptoms. Health care professionals should be aware of depressive symptoms in older adults reporting chronic illnesses and particularly in those reporting functional limitations. To decrease the risk of depressive symptoms caused by chronic illnesses, negative self-perceptions of aging may need to be challenged.

How perceived feelings of "wellness" influence the decision-making of people with predialysis chronic kidney disease.

PubMed

Campbell-Crofts, Sandra; Stewart, Glenn

2018-04-01

To identify the subjective meanings attached to decisions made by people living with chronic kidney disease as they consider their transition to renal replacement therapy. Within the challenging world of chronic illness, people draw upon their temporal life experiences to help them make the best or most balanced primary healthcare decisions. Understanding the risks and benefits associated with these decisions has been an area of intense interest in health research. An exploratory qualitative descriptive design. A convenience sample of twelve people, at stages 3B to 5 of chronic kidney disease, attending two predialysis renal clinics in Sydney, Australia, consented to be interviewed. The semi-structured interviews centred on their decision-making experiences as they considered their transition to renal replacement therapy. Three themes emerged from participant narratives which have been framed into the following questions: (i) Do I need renal replacement therapy? (ii) What is the "right" renal replacement therapy for me? and (iii) When should I start renal replacement therapy? Decisions about the transition to renal replacement therapy were impacted upon by the participants' perceived feelings of wellness and the belief that renal replacement therapy would not be needed at any time in the foreseeable future. This study highlights the importance of optimising person-centred care and raises important issues for the education and management of people with chronic kidney disease in the predialysis stages of the illness. In order to facilitate the transition to renal replacement therapy, renal clinicians have a responsibility to more fully understand the patient journey during the predialysis stages of chronic kidney disease. A clearer understanding of patients' perceptions and decision-making experiences creates a space for mutual understanding. This is essential for the future development and implementation of collaborative, person-centred educational strategies and long-term renal healthcare outcomes. © 2017 John Wiley & Sons Ltd.

Social behaviour and illness information interact to influence the peer acceptance of children with chronic illness.

PubMed

Alderfer, M A; Wiebe, D J; Hartmann, D P

2001-09-01

Social behaviour was investigated as a contributor to the peer acceptance of children with chronic illness. We predicted that children with illness would receive less acceptance than children without illness, and that prosocial behaviour would improve acceptance, while aggressive behaviour would hamper it. Based upon attribution and cognitive bias theories, we also predicted that prosocial behaviour would be more beneficial and aggressive behaviour less damaging to the acceptance of children with illness compared to healthy children. A 3 (social behaviour: prosocial, aggressive, no information) x 2 (physical status: chronically ill, healthy) within-subjects analogue design was used. Preadolescents (N = 149) indicated social acceptance of hypothetical children portrayed in vignettes as either chronically ill or healthy with prosocial, aggressive, or no social behaviour. A 13-item social intentions scale gauged acceptance. The hypotheses were supported. Although children described as ill received lower acceptance ratings than healthy children, prosocial/ill children were more accepted than aggressive/ill children. Social behaviour interacted with physical status to affect acceptance. Social behaviour influences the peer acceptance of hypothetical children with chronic illness. Prosocial behaviour enhances acceptance of children described with illness, while aggressive behaviour hampers it. Additionally, prosocial behaviour is more beneficial, and aggressive behaviour is less damaging for children described as ill versus healthy. The potential processes by which peers judge acceptance of children with illness are discussed.

Suicidal Behaviour Among Adolescents and Young Adults with Self-Reported Chronic Illness.

PubMed

Ferro, Mark A; Rhodes, Anne E; Kimber, Melissa; Duncan, Laura; Boyle, Michael H; Georgiades, Katholiki; Gonzalez, Andrea; MacMillan, Harriet L

2017-12-01

The aims of this study were to estimate the: (1) 12-mo prevalence of suicidal thoughts, plans, and attempts in a population sample of adolescents and young adults with and without chronic illness; (2) associations among chronic illness and suicidal thoughts and behaviour (STB); and, (3) moderating roles of mood and substance use disorder on this association. Individuals were aged 15 to 30 y ( n = 5,248) from the Canadian Community Health Survey-Mental Health. Twelve-month STB and psychiatric disorder were measured using the World Health Organization Composite International Diagnostic Interview 3.0. Multinomial logistic regression examined associations between chronic illness and STB, adjusting for relevant sociodemographic and health characteristics. Product term interactions among chronic illness, mood, and substance use disorders were included in the regression models to examine potential moderating effects. Prevalence of suicidal thoughts, plans, and attempts was higher in individuals with chronic illness ( P < 0.01 for all). After adjustment, chronic illness increased the odds for suicidal thoughts [OR = 1.28 (1.01 to 1.64)], plans [OR = 2.34 (1.22 to 4.39)], and attempts [OR = 4.63 (1.52 to 14.34)]. In the presence v. absence of a mood disorder, the odds for suicidal thoughts were higher among individuals with chronic illness [OR = 1.89 (1.06 to 5.28)]. Suicidal thoughts and behaviours are common among adolescents and young adults with chronic illness, particularly among those with comorbid mood disorders. Health professionals should routinely ask about STB during assessments of their adolescent and young adult patients.

Young Adult Outcomes of Children Growing up with Chronic Illness: An analysis of the National Longitudinal Study of Adolescent Health

PubMed Central

Maslow, Gary R.; Haydon, Abigail; Ford, Carol Ann; Halpern, Carolyn Tucker

2012-01-01

Objective To examine young adult outcomes in a nationally representative US cohort of young adults who grew up with a chronic illness. Design Secondary analysis of nationally representative data from Wave III (2001) of the National Longitudinal Study of Adolescent Health. Setting United States Participants The analytic sample included 13,236 young adults 18–28 years old at Wave III. Main Exposure Self-report of a chronic physical illness (asthma, cancer, diabetes or epilepsy) in adolescence. Respondents with (1) asthma or (2) non-asthma chronic illness (cancer, diabetes, or epilepsy) were compared to subjects without these conditions. Main Outcome Measures Self-report of high school graduation, ever having a job, having a current job, living with parents, and ever receiving public assistance. Results Three percent of young adults had non-asthma chronic illness (cancer, diabetes, or epilepsy) and 16% had asthma. The majority of young adults with chronic illness graduated high school (81%) and were currently employed (60%). However, compared to healthy young adults, those with a non-asthma chronic illness were significantly less likely to graduate high school, ever have a job, or have a current job and were more likely to receive public assistance. When compared to young adults with asthma, young adults with non-asthma chronic illness again had significantly worse young adult outcomes on all measures. Conclusions Most young adults growing up with chronic illness graduate high school and are employed. However, these young adults are significantly less likely than their healthy peers to achieve these important educational and vocational milestones. PMID:21383274

Burnout in early course psychosis caregivers: the role of illness beliefs and coping styles.

PubMed

Onwumere, Juliana; Lotey, Gursharan; Schulz, Joerg; James, Gareth; Afsharzadegan, Roya; Harvey, Raythe; Chu Man, Lai; Kuipers, Elizabeth; Raune, David

2017-06-01

In occupational settings, burnout is a common response to chronic exposure stressors and has been frequently documented in formal caregivers (i.e. paid psychiatric staff). However, the literature is limited on reports of burnout among informal caregivers and particularly within early psychosis groups. The current study sought to investigate reports of burnout in carers of young adults treated within a specialist early psychosis service and links with key appraisals reported about the illness and coping. Seventy-two carers completed the Maslach Burnout Inventory along with self-report measures of coping styles and illness beliefs. Seventy-eight per cent of carers reported high burnout in at least one of the three key burnout markers (i.e. emotional exhaustion, depersonalization or low personal accomplishment). Seven per cent of carers met full criteria for high burnout across all the three domains. A carer's belief about the negative consequences of the illness for themselves was a significant predictor of emotional exhaustion and depersonalization. Low personal accomplishment was linked to a carer's less optimistic beliefs about the illness timeline and fewer reports of adaptive coping. The results provide preliminary support for the importance of asking carers in the early illness phase about their experiences of caregiving. Targeted assessment may serve as a helpful tool to identify and intervene with carers in need of additional support with stress management, use of adaptive coping strategies, and balanced recovery focused information about psychosis. © 2015 Wiley Publishing Asia Pty Ltd.

Estimating the true global burden of mental illness.

PubMed

Vigo, Daniel; Thornicroft, Graham; Atun, Rifat

2016-02-01

We argue that the global burden of mental illness is underestimated and examine the reasons for under-estimation to identify five main causes: overlap between psychiatric and neurological disorders; the grouping of suicide and self-harm as a separate category; conflation of all chronic pain syndromes with musculoskeletal disorders; exclusion of personality disorders from disease burden calculations; and inadequate consideration of the contribution of severe mental illness to mortality from associated causes. Using published data, we estimate the disease burden for mental illness to show that the global burden of mental illness accounts for 32·4% of years lived with disability (YLDs) and 13·0% of disability-adjusted life-years (DALYs), instead of the earlier estimates suggesting 21·2% of YLDs and 7·1% of DALYs. Currently used approaches underestimate the burden of mental illness by more than a third. Our estimates place mental illness a distant first in global burden of disease in terms of YLDs, and level with cardiovascular and circulatory diseases in terms of DALYs. The unacceptable apathy of governments and funders of global health must be overcome to mitigate the human, social, and economic costs of mental illness. Copyright © 2016 Elsevier Ltd. All rights reserved.

Illness Identity in Adults with a Chronic Illness.

PubMed

Oris, Leen; Luyckx, Koen; Rassart, Jessica; Goubert, Liesbet; Goossens, Eva; Apers, Silke; Arat, Seher; Vandenberghe, Joris; Westhovens, René; Moons, Philip

2018-02-21

The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78 year old; n = 276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81 year old; n = 241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.

"You Get Reminded You're a Sick Person": Personal Data Tracking and Patients With Multiple Chronic Conditions.

PubMed

Ancker, Jessica S; Witteman, Holly O; Hafeez, Baria; Provencher, Thierry; Van de Graaf, Mary; Wei, Esther

2015-08-19

Consumer health information technologies (HIT) that encourage self-tracking, such as diet and fitness tracking apps and disease journals, are attracting widespread interest among technology-oriented consumers (such as "quantified self" advocates), entrepreneurs, and the health care industry. Such electronic technologies could potentially benefit the growing population of patients with multiple chronic conditions (MCC). However, MCC is predominantly a condition of the elderly and disproportionately affects the less affluent, so it also seems possible that the barriers to use of consumer HIT would be particularly severe for this patient population. Our aim was to explore the perspectives of individuals with MCC using a semistructured interview study. Our research questions were (1) How do individuals with MCC track their own health and medical data? and (2) How do patients and providers perceive and use patient-tracked data? We used semistructured interviews with patients with multiple chronic diseases and providers with experience caring for such patients, as well as participation in a diabetes education group to triangulate emerging themes. Data were analyzed using grounded theory and thematic analysis. Recruitment and analysis took place iteratively until thematic saturation was reached. Interviews were conducted with 22 patients and 7 health care providers. The patients had an average of 3.5 chronic conditions, including type 2 diabetes, heart disease, chronic pain, and depression, and had regular relationships with an average of 5 providers. Four major themes arose from the interviews: (1) tracking this data feels like work for many patients, (2) personal medical data for individuals with chronic conditions are not simply objective facts, but instead provoke strong positive and negative emotions, value judgments, and diverse interpretations, (3) patients track for different purposes, ranging from sense-making to self-management to reporting to the doctor, and (4) patients often notice that physicians trust technologically measured data such as lab reports over patients' self-tracked data. Developers of consumer health information technologies for data tracking (such as diet and exercise apps or blood glucose logs) often assume patients have unlimited enthusiasm for tracking their own health data via technology. However, our findings potentially explain relatively low adoption of consumer HIT, as they suggest that patients with multiple chronic illnesses consider it work to track their own data, that the data can be emotionally charged, and that they may perceive that providers do not welcome it. Similar themes have been found in some individual chronic diseases but appeared more complex because patients often encountered "illness work" connected to multiple diseases simultaneously and frequently faced additional challenges from aging or difficult comorbidities such as chronic pain, depression, and anxiety. We suggest that to make a public health impact, consumer HIT developers should engage creatively with these pragmatic and emotional issues to reach an audience that is broader than technologically sophisticated early adopters. Novel technologies are likely to be successful only if they clearly reduce patient inconvenience and burden, helping them to accomplish their "illness work" more efficiently and effectively.

Chronic illness histories of adults entering treatment for co-occurring substance abuse and other mental health disorders.

PubMed

Chesher, Nicholas J; Bousman, Chad A; Gale, Maiken; Norman, Sonya B; Twamley, Elizabeth W; Heaton, Robert K; Everall, Ian P; Judd, Patricia A

2012-01-01

Little is known about the medical status of individuals entering treatment for co-occurring substance abuse and other mental disorders (COD). We analyzed the medical histories of 169 adults entering outpatient treatment for CODs, estimating lifetime prevalence of chronic illness and current smoking, comparing these rates to the general population, and examining psychiatric and substance-related correlates of chronic illness. Results revealed significantly higher prevalence of hypertension, asthma, arthritis, and smoking compared to the general US population, and showed an association between chronic illness and psychiatric symptom distress and substance use severity. Findings support integration of chronic illness management into COD treatment.  Copyright © American Academy of Addiction Psychiatry.

Illness Uncertainty and Posttraumatic Stress in Young Adults With Congenital Heart Disease.

PubMed

Moreland, Patricia; Santacroce, Sheila Judge

2018-03-29

Young adults with congenital heart disease (CHD) are at risk for chronic illness uncertainty in 4 domains: ambiguity about the state of their illness; lack of information about the disease, its treatment, and comorbidities; complexity of the healthcare system and relationship with healthcare providers; and unpredictability of the illness course and outcome. Chronic uncertainty has been associated with posttraumatic stress symptoms (PTSS) and posttraumatic stress disorder (PTSD). The aims of this study were to explore how young adults with CHD experience uncertainty and to describe the relationship between PTSS and the appraisal and management process. An exploratory, mixed methods design was used. Data were collected in person and via Skype from 25 participants (19-35 years old), who were diagnosed with CHD during childhood and able to read and write English. In-depth interviews and the University of California at Los Angeles Posttraumatic Stress Disorder Reaction Index were used to collect data. Qualitative data were analyzed using the constant comparative method. The 4 domains of uncertainty were evident in the narratives. The PTSD mean (SD) score was 31.3 (7.7). Six participants met criteria for PTSD. Narrative analysis revealed a relationship between severity of PTSS and the appraisal and management of uncertainty. Participants with PTSD used management strategies that included avoidance, reexperiencing, and hyperarousal. Young adults with CHD may be at risk for the development of long-term psychological stress and PTSD in the setting of chronic uncertainty. Regular monitoring to identify PTSS/PTSD may be a means to promote treatment adherence and participation in healthcare.

Working and caring for a child with chronic illness: A review of current literature.

PubMed

Kish, A M; Newcombe, P A; Haslam, D M

2018-05-01

Advances in medical knowledge have contributed to the increase in the number of children living with some form of long-term chronic illness or condition. As a consequence of these advancements, treatments that are more accessible and easier to administer, usually within a child's home, have been developed. However, this may mean that parents take on greater treatment responsibility and require extra time and energy to meet these tasks, additional to other responsibilities. This review paper aims to summarize and critique existing literature on working parents of children with a chronic condition, by focusing on patterns of parent work, the challenges experienced, and the flow-on consequences to well-being. Employing a narrative, meta-synthesis of the current literature, this review identified 3 key themes related to working parents of children with chronic illness. The paper first identifies that although employment is less common, these parents are not necessarily nonworking. Second, these parents experience numerous challenges including balancing work and family, time constraints, stress, and feelings of "doing it all." And third, the above challenges lead to additional impacts on parental quality of life. This review summarizes what is currently known about work patterns, challenges, and consequences in parents of children with chronic conditions. Employment is clearly impacted for these parents. Although workplace challenges have been extensively researched, other challenges (eg, personal and family) and impacts on their well-being have not. This review discusses the present standing of this research. It outlines the strengths and limitations of the current literature, makes recommendations for future research, and suggests theoretical and practical implications of the further findings. © 2018 John Wiley & Sons Ltd.

Families living with chronic illness: beliefs about illness, family, and health care.

PubMed

Årestedt, Liselott; Benzein, Eva; Persson, Carina

2015-05-01

Beliefs can be described as the lenses through which we view the world. With emerging illness, beliefs about the illness experience become important for nurses to understand to enhance well-being and healing. The aim of this study was to illuminate illness beliefs of families living with chronic illness. A qualitative design was chosen, including repeated narrative research interviews with seven Swedish families living with chronic illness. Hermeneutic analysis was used to interpret the transcribed family interviews. The result described beliefs in families, both within and across families. Both core beliefs and secondary beliefs about illness, family, and health care were revealed. Illness beliefs have importance for how families respond to and manage situations that arise from their encounters with illness. Nurses have to make space for and listen to families' stories of illness to become aware of what beliefs may support and encourage family well-being and healing. The Illness Beliefs Model provides a touchstone whereby nurses can distinguish both individual and shared beliefs within families living with chronic illness and provide ideas for family intervention if needed. © The Author(s) 2015.

Growing up with a chronic illness: social success, educational/vocational distress.

PubMed

Maslow, Gary R; Haydon, Abigail; McRee, Annie-Laurie; Ford, Carol A; Halpern, Carolyn T

2011-08-01

We compared adult educational, vocational, and social outcomes among young adults with and without childhood-onset chronic illness in a nationally representative U.S. sample. We used data from Wave IV (2008) of the National Longitudinal Study of Adolescent Health. We compared respondents who reported childhood-onset cancer, heart disease, diabetes, or epilepsy with young adults without these chronic illnesses in terms of marriage, having children, living with parents, romantic relationship quality, educational attainment, income, and employment. Multivariate models controlled for sociodemographic factors and adult-onset chronic illness. As compared with those without childhood chronic illness, respondents with childhood chronic illness had similar odds of marriage (odds ratios [OR] = .89, 95% CI: .65-1.24), having children (OR = .99, 95% CI: .70-1.42), and living with parents (OR = 1.49, 95% CI .94-2.33), and similar reports of romantic relationship quality. However, the chronic illness group had lower odds of graduating college (OR = .49, 95% CI: .31-.78) and being employed (OR = .56, 95% CI: .39-.80), and higher odds of receiving public assistance (OR = 2.13, 95% CI: 1.39-3.25), and lower mean income. Young adults growing up with chronic illness succeed socially, but are at increased risk of poorer educational and vocational outcomes. Copyright © 2011 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Growing Up With a Chronic Illness: Social Success, Educational/Vocational Distress

PubMed Central

Maslow, Gary R.; Haydon, Abigail; McRee, Annie-Laurie; Ford, Carol Ann; Halpern, Carolyn Tucker

2012-01-01

OBJECTIVES We compared adult educational, vocational, and social outcomes among young adults with and without childhood-onset chronic illness in a nationally representative US sample. METHODS We used data from Wave IV (2008) of the National Longitudinal Study of Adolescent Health. We compared respondents who reported childhood onset cancer, heart disease, diabetes, or epilepsy to young adults without these chronic illnesses in terms of marriage, having children, living with parents, romantic relationship quality, educational attainment, income and employment. Multivariate models controlled for socio-demographic factors and adult-onset chronic illness. RESULTS Compared to those without childhood chronic illness, respondents with childhood chronic illness had similar odds of marriage (OR=0.89, 95%CI: 0.65–1.24), having children (OR=0.99, 95%CI: 0.70–1.42), and living with parents (OR=1.49, 95%CI 0.94–2.33), and similar reports of romantic relationship quality. However, the chronic illness group had lower odds of graduating college (OR=0.49, 95%CI: 0.31–0.78) and being employed (OR=0.56, 95%CI: 0.39–0.80), and higher odds of receiving public assistance (OR=2.13, 95%CI: 1.39–3.25), and lower mean income. CONCLUSIONS Young adults growing up with chronic illness succeed socially, but are at increased risk of poorer educational and vocational outcomes. PMID:21783055

Feasibility and acceptability of patient partnership to improve access to primary care for the physical health of patients with severe mental illnesses: an interactive guide.

PubMed

Pelletier, Jean-François; Lesage, Alain; Boisvert, Christine; Denis, Frédéric; Bonin, Jean-Pierre; Kisely, Steve

2015-09-14

Even in countries with universal healthcare systems, excess mortality rates due to physical chronic diseases in patients also suffering from serious mental illness like schizophrenia is such that their life expectancy could be lessened by up to 20 years. The possible explanations for this disparity include: unhealthy habits (i.e. smoking; lack of exercise); side-effects of psychotropic medication; delays in the detection or initial presentation leading to a more advanced disease at diagnosis; and inequity of access to services. The main objective of this paper is to explore the feasibility and acceptability of patient partnership for developing an interactive guide to improve access to primary care providers for chronic diseases management and health promotion among patients with severe mental illnesses. A participatory action research design was used to engage patients with mental illness as full research partners for a strategy for patient-oriented research in primary care for persons with schizophrenia who also have chronic physical illnesses. This strategy was also developed in partnership with a health and social services centre responsible for the health of the population of a territory with about 100,000 inhabitants in East-end Montreal, Canada. A new interactive guide was developed by patient research partners and used by 146 participating patients with serious mental illness who live on this territory, for them to be better prepared for their medical appointment with a General Practitioner by becoming more aware of their own physical condition. Patient research partners produced a series of 33 short videos depicting signs and symptoms of common chronic diseases and risk factors for the leading causes of mortality and study participants were able to complete the corresponding 33-item questionnaire on an electronic touch screen tablet. What proved to be most relevant in terms of interactivity was the dynamic that has developed among the study participants during the small group learning sessions, a training technique designed for healthcare professionals that was adapted for this project for, and with patient partners. This research has shown the feasibility and acceptability of patient partnership and patient-oriented research approaches to the R&D process of a new medical tool and intervention for patients with serious mental illness, and its acceptability for addressing inequity of this disadvantaged population in terms of access to primary care providers.

The Serotonin Transporter 5-HTTPR Polymorphism is associated with Current and Lifetime Depression in Persons with Chronic Psychotic Disorders

PubMed Central

Contreras, Javier; Hare, Liz; Camarena, Beatriz; Glahn, David; Dassori, Albana; Medina, Rolando; Contrerasa, Salvador; Ramirez, Mercedes; Armas, Regina; Munoz, Rodrigo; Mendoza, Rick; Raventos, Henriette; Ontiveros, Alfonso; Nicolini, Humberto; Palmer, Raymond; Escamilla, Michael

2013-01-01

Objective Variation in the serotonin transporter gene (SLC6A4) promoter region has been shown to influence depression in persons who have been exposed to a number of stressful life events. Method We evaluated whether genetic variation in 5-HTTLPR, influences current depression, lifetime history of depression and quantitative measures of depression in persons with chronic psychotic disorders. This is an association study of a genetic variant with quantitative and categorical definitions of depression conducted in the Southwest United States, Mexico, and Costa Rica. We analyzed 260 subjects with a history of psychosis, from a sample of 129 families. Results We found that persons carrying at least one short allele had a statistically significant increased lifetime risk for depressive syndromes (p<.02, Odds Ratio=2.18, 95% CI=1.10–4.20). Conclusion The “ss” or “sl” genotype at the 5-HTTLPR promoter polymorphic locus increases the risk of psychotic individuals to develop major depression during the course of their illness. PMID:19016667

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.

Imagining the future in health anxiety: the impact of rumination on the specificity of illness-related memory and future thinking.

PubMed

Sansom-Daly, Ursula M; Bryant, Richard A; Cohn, Richard J; Wakefield, Claire E

2014-01-01

Individuals with health anxiety experience catastrophic fears relating to future illness. However, little research has explored cognitive processes involved in how health anxious individuals picture the future. Ruminative thinking has been shown to impede the ability to recall specific autobiographical memories, which in turn is related to maladaptive, categoric future thinking processes. This study examined the impact of rumination on memory and future thinking among 60 undergraduate participants with varying health anxiety (35% clinical-level health anxiety). Participants were randomized to experiential/ruminative self-focus conditions, then completed an Autobiographical Memory Test and Future Imaginings Task. Responses were coded for specificity and the presence of illness concerns. Rumination led to more specific illness-concerned memories overall, yet at the same time led to more categoric illness-related future imaginings. Rumination and health anxiety together best predicted overgeneral illness-related future imaginings. Highly specific illness-related memories may be maintained due to their personal salience. However, more overgeneral illness-related future imaginings may reflect cognitive avoidance in response to the threat of future illness. This divergent pattern of results between memory and future imaginings may exacerbate health anxiety, and may also serve to maintain maladaptive responses among individuals with realistic medical concerns, such as individuals living with chronic illness.

MMPI for personality characteristics of patients with different diseases.

PubMed

Pop-Jordanova, N

2015-01-01

In the field of psychosomatic medicine the relationship between personality characteristics and diseases is supposed to be an important issue. The aim of this article is to present group's MMPI profiles obtained for patients with different chronic diseases and to discuss about possible specific features of these different groups. We summarized results obtained by psychological testing of following groups of patients: adult patients treated with chronic maintenance dialysis, patients with diabetic retinopathy, general anxiety group, attack panic syndrome, parents of children with rheumatoid arthritis, as well as adolescents with mental anorexia, cystic fibrosis, diabetes mellitus and leukemia. Two control groups comprised adults and adolescents, both without any health problems, selected randomly. As a psychometric test MMPI-201 was used. Statistic 10 package is used for statistical analysis. In our presentation it can be seen some typical personality characteristics for patients with chronic conditions. These findings could be helpful for clinicians concerning treatment planning and follow-up. In general, the MMPI helps us to obtain a global, factual picture from the self-assessment of the patient, explained in a psycho-technical language. Group's profile could be used in clinical practice for planning treatment and to suppose the prognosis of the illness.

Medicaid programme changes and the chronically ill: early results from a prospective cohort study of the Oregon Health Plan.

PubMed

Solotaroff, Rachel; Devoe, Jennifer; Wright, Bill J; Smiths, Jeanene; Boone, Janne; Edlund, Tina; Carlson, Matthew J

2005-09-01

To describe the impacts of recent Oregon Health Plan (OHP) policy changes on individuals living with chronic illness in Oregon. A mail survey was conducted of 1374 OHP beneficiaries who were directly affected by the new policies. The analyses reported in this article represent baseline findings from the first of three survey waves in an ongoing prospective cohort study. A significant association was found between Medicaid policy changes and high rates of disenrolment from the OHP. Compared to the non-chronically ill, the chronically ill were more likely to report inability to pay for medications, higher medical debt, more unmet health needs, and poorer health status. Among the chronically ill, those who lost insurance reported decreased access to and utilization of healthcare, more medical debt, and more restriction of medications. As policy-makers restructure public programmes to accommodate tight budgets and rising healthcare costs, people with chronic illness can easily be overlooked. Chronically ill individuals face disproportionate financial and health burdens. Small cost-saving policy changes can lead to widespread disenrolment that cascades into reduced access to healthcare services, altered utilization patterns, and financial strain.

Employment Barriers Among Welfare Recipients and Applicants With Chronically Ill Children

PubMed Central

Smith, Lauren A.; Romero, Diana; Wood, Pamela R.; Wampler, Nina S.; Chavkin, Wendy; Wise, Paul H.

2002-01-01

Objectives. This study evaluated the association of chronic child illness with parental employment among individuals who have had contact with the welfare system. Methods. Parents of children with chronic illnesses were interviewed. Results. Current and former welfare recipients and welfare applicants were more likely than those with no contact with the welfare system to report that their children’s illnesses adversely affected their employment. Logistic regression analyses showed that current and former receipt of welfare, pending welfare application, and high rates of child health care use were predictors of unemployment. Conclusions. Welfare recipients and applicants with chronically ill children face substantial barriers to employment, including high child health care use rates and missed work. The welfare reform reauthorization scheduled to occur later in 2002 should address the implications of chronic child illness for parental employment. PMID:12197972

Perceived Stress in Chronic Illness: A Comparative Analysis of Four Diseases.

ERIC Educational Resources Information Center

Revenson, Tracey A.; Felton, Barbara J.

Most studies of stress and coping processes among patients with serious illnesses have focused on acute illness states. Far less research has involved systematic examination of the types and frequency of illness-related stresses experienced by individuals living with chronic illness. To compare the nature and degree of illness-related stress posed…

Living with a chronic illness - reaching out to others

MedlinePlus

... ency/patientinstructions/000602.htm Living with a chronic illness - reaching out to others To use the sharing ... illness. Talk with People Who Have the Same Illness Sharing with and learning from people who have ...

A Tool for Tracking and Assessing Chronic Illness Care in Prison (ACIC-P)

PubMed Central

Wang, Emily A.; Aminawung, Jenerius A.; Ferguson, Warren; Trestman, Robert; Wagner, Edward H.; Bova, Carol

2014-01-01

Chronic disease care is being transformed in correctional settings, given an aging inmate population, ongoing quality improvement efforts, litigation, and rising costs. The Chronic Care Model, established for chronic disease care in the community, might be a suitable framework to transform chronic disease care in prison, but it has not been systematically adapted for the correctional health care setting. We employed cognitive interviewing to adapt an extant survey used to measure the delivery of chronic illness care in the community, Assessment of Chronic Illness Care, for a prison setting. Results from the cognitive interviews and the modified Assessment of Chronic Illness Care–Prison (ACIC-P) instrument are presented in this article. Future studies will need to test the reliability and psychometric properties of the adapted ACIC-P. PMID:25117427

Illness Representations, Treatment Beliefs, Medication Adherence, and 30-Day Hospital Readmission in Adults With Chronic Heart Failure: A Prospective Correlational Study.

PubMed

Turrise, Stephanie

2016-01-01

An estimated 5.1 million Americans have chronic heart failure, yet despite advances in its treatment, there has been no improvement in hospital readmissions among aging adult patients with chronic heart failure. The purpose of this study is to investigate the relationships among illness representations, treatment beliefs, medication adherence, and 30-day hospital readmission for heart failure exacerbation in aging adults with chronic heart failure. Using a prospective, correlational design, 96 older adults with a primary or secondary diagnosis of heart failure discharged to home from a hospital in the Southeastern United States participated in telephone surveys and follow-up telephone calls. Data analysis included correlation and logistic regression analyses. Participants were highly adherent to their medications. Individuals who did not believe their treatment was effective in controlling their HF were readmitted within 30 days of hospital discharge for HF exacerbation; that is, treatment control was inversely related to 30-day hospital readmission. In post hoc analyses, personal control was inversely related to dichotomized medication adherence and necessity-concern differential was directly related to dichotomized medication adherence. The necessity-concern differential, or the belief that medication necessity outweighed the concerns they had about their medicines, was a significant predictor of medication adherence. Nurses can use these study findings to help identify individuals who may be at risk of being nonadherent to their medications and hospital readmission. Recommendations for future research include replication with multiple sites, the addition of objective measures of medication adherence, investigation of both the cognitive and emotional pathways, and qualitative exploration of personal control in the context of medication adherence in HF.

Processing Diabetes Mellitus Composite Events in MAGPIE.

PubMed

Brugués, Albert; Bromuri, Stefano; Barry, Michael; Del Toro, Óscar Jiménez; Mazurkiewicz, Maciej R; Kardas, Przemyslaw; Pegueroles, Josep; Schumacher, Michael

2016-02-01

The focus of this research is in the definition of programmable expert Personal Health Systems (PHS) to monitor patients affected by chronic diseases using agent oriented programming and mobile computing to represent the interactions happening amongst the components of the system. The paper also discusses issues of knowledge representation within the medical domain when dealing with temporal patterns concerning the physiological values of the patient. In the presented agent based PHS the doctors can personalize for each patient monitoring rules that can be defined in a graphical way. Furthermore, to achieve better scalability, the computations for monitoring the patients are distributed among their devices rather than being performed in a centralized server. The system is evaluated using data of 21 diabetic patients to detect temporal patterns according to a set of monitoring rules defined. The system's scalability is evaluated by comparing it with a centralized approach. The evaluation concerning the detection of temporal patterns highlights the system's ability to monitor chronic patients affected by diabetes. Regarding the scalability, the results show the fact that an approach exploiting the use of mobile computing is more scalable than a centralized approach. Therefore, more likely to satisfy the needs of next generation PHSs. PHSs are becoming an adopted technology to deal with the surge of patients affected by chronic illnesses. This paper discusses architectural choices to make an agent based PHS more scalable by using a distributed mobile computing approach. It also discusses how to model the medical knowledge in the PHS in such a way that it is modifiable at run time. The evaluation highlights the necessity of distributing the reasoning to the mobile part of the system and that modifiable rules are able to deal with the change in lifestyle of the patients affected by chronic illnesses.

Unravelling the Tensions Between Chronic Disease Management and End-of-Life Planning.

PubMed

Thorne, Sally; Roberts, Della; Sawatzky, Richard

2016-01-01

An increasing appreciation for the burden that chronic conditions represent for people and for societies has triggered an evolving body of popular and professional conceptualizations of the nature of the chronic disease challenge. In this discussion article, we trace the trajectory of thinking about chronic illness care, surfacing underlying assumptions and drivers that have shaped current dominant models of service delivery. We note significant gaps in these conceptualizations, especially with respect to the reality that many chronic conditions are life limiting. Contrasting chronic disease theorizing with the conversations that have arisen around end-of-life care for other kinds of health conditions, we argue for a shift in our thinking to accommodate the implications of life limitation in our service delivery planning. We see significant leadership potential in optimizing the role nurses can play across the chronic disease trajectory by integrating the healthy optimism of self-care management with the profound compassion of a person-centered palliative approach.

Dysthymia in clinical practice:course, outcome and impact on the community.

PubMed

Keller, M B

1994-01-01

Recent studies have indicated the pernicious nature of dysthymia; its low-grade chronicity probably contributes most to the problem of under-treatment and misdiagnosis. A high prevalence of morbidity and comorbidity is associated with dysthymia: major depression, alcoholism, anxiety and personality disorders are present in the vast majority of sufferers. It is also very unusual for people with dysthymia to not develop superimposed episodes of major depressive disorder, resulting in a longer time to recover and high rates of recurrence and chronicity. Approximately 3.1% of the population have dysthymia including children and adolescents who, like adults, exhibit a higher risk for new episodes of depressive illness if they have this disorder. Children and adolescents with depressive illnesses have higher rates of scholastic failure and school-related problems. Dysthymia can affect every aspect of a person's quality of life including relationships with significant others, earning potential and, most importantly, mental and physical well-being. Available data is not yet sufficient to differentiate dysthymia as a disease entity from the other depressive disorders such as major depression or double depression, or to conclude to what extent dysthymia should be thought of as a personality disorder. However, the DSM-IV Mood Disorders Field Trial results help identify new criteria for the DSM-IV Appendix. The relationship between dysthymic disorder and major depression needs more definition, especially in regard to course and severity, so that an accurate diagnosis can lead to expeditious and appropriate treatment.

Participation of chronic patients in medical consultations: patients' perceived efficacy, barriers and interest in support.

PubMed

Henselmans, Inge; Heijmans, Monique; Rademakers, Jany; van Dulmen, Sandra

2015-12-01

Chronic patients are increasingly expected to participate actively in medical consultations. This study examined (i) patients' perceived efficacy and barriers to participation in consultations, (ii) patients' interest in communication support and (iii) correlates of perceived efficacy and barriers, with an emphasis on differences across providers' disciplines. A representative panel of chronic patients (n = 1314) filled out the short Perceived Efficacy in Patient-Provider Interaction scale and were questioned about barriers to participation and interest in communication support. Potential correlates included socio-demographic (age, sex, education, living situation), clinical (discipline care provider, type of illness, comorbidity, illness duration, functional disabilities, health consultations in last year) and personal characteristics (information preference, health literacy, level of general patient activation). Most patients felt efficacious in consultations, although 46% reported barriers to participation and 39% had an interest in support. Barriers most frequently recognized were 'not wanting to be bothersome', 'perception there is too little time' and 'remembering subjects only afterwards'. Patients most frequently endorsed relatively simple support. Patients perceived the least barriers and were least likely to endorse support when seeing a nurse. In multivariate models, consistent risk factors for low efficacy and perceived barriers were low health literacy and a low general patient activation. Many chronically ill patients feel confident in medical interactions. Still, a significant number might benefit from support. Often this concerned more generally vulnerable patients, that is, the low literate and generally less activated. Relatively simple supportive interventions are likely to be endorsed and might overcome frequent barriers. © 2014 John Wiley & Sons Ltd.

Measurement invariance of the Illness Intrusiveness Ratings Scale's three-factor structure in men and women with cancer.

PubMed

Mah, Kenneth; Bezjak, Andrea; Loblaw, D Andrew; Gotowiec, Andrew; Devins, Gerald M

2011-02-01

Illness- and treatment-related disruptions to valued activities and interests (illness intrusiveness) are central to quality of life in chronic disease and are captured by three subscales of the Illness Intrusiveness Ratings Scale (IIRS): the Instrumental, Intimacy, and Relationships and Personal Development subscales. Using individual (CFA) and multisample confirmatory factor analyses (MSCFA), we evaluated measurement invariance of the IIRS's 3-factor structure in men and women with cancer. Men (n = 210) and women (n = 206) with 1 of 4 cancer diagnoses (gastrointestinal, head and neck, lymphoma, lung) recruited from outpatient clinics completed the IIRS. In the MSCFA, we applied an analysis of means and covariance structures approach to test increasingly stringent equality constraints on factor structure parameters to evaluate weak, strong, and strict measurement invariance of the 3-factor structure between men and women. Individual CFAs demonstrated fit of the hypothesized 3-factor structure for men and women, although more consistently for men. The 3-factor structure was superior to an alternative 1-factor structure. MSCFA results indicated that parameters of the 3-factor structure could be considered equivalent between the sexes up to the level of strong invariance. Strict invariance was not supported. Overall, IIRS scores can be interpreted similarly for men and women with cancer. Illness intrusiveness can be considered as important in the psychosocial adaptation of people with cancer as it is for people affected by other chronic conditions. (c) 2011 APA, all rights reserved

Use of 'chronic disease self-management strategies' in mental healthcare.

PubMed

Kemp, Vivien

2011-03-01

Medical care for chronic conditions imposes a substantial burden on healthcare systems designed originally for acute illness or injury. The notion of chronic disease self-management (CDSM) has been developed as a means of encouraging individuals with chronic conditions to self-manage their own health. It is known that successful chronic disease management reduces hospital admission rates and improves patients' quality of life. Although recognized widely by other medical disciplines, it is beginning to have an impact on psychiatric practice; therefore, a review of how the CDSM approach is implemented in psychiatry is timely. The move toward self-management in general medicine can be seen by and large as a holistic approach that encourages the person to work in partnership with health professionals to improve outcomes and assist patients to better manage their healthcare needs. One of the defining features of CDSM approaches is the active collaboration between the patient and the healthcare professional. Five mechanisms that demonstrate such active collaboration are self-directed care, illness management and recovery, shared decision-making, joint crisis planning and wellness planning. Their use in psychiatry is discussed. The key feature of CDSM approaches is an active collaboration between healthcare professionals and healthcare consumers. It is a fundamental shift away from traditional active expert/passive patient treatment modes. Each of the five approaches discussed exemplifies the active participation in treatment planning by both consumers and mental health professionals.

Responding to Students' Chronic Illnesses

ERIC Educational Resources Information Center

Shaw, Steven R.; Glaser, Sarah E.; Stern, Melissa; Sferdenschi, Corina; McCabe, Paul C.

2010-01-01

Chronic illnesses are long-term or permanent medical conditions that have recurring effects on everyday life. Large and growing number of students have chronic illnesses that affect their emotional development, physical development, academic performance, and family interactions. The primary error in educating those students is assuming that the…

Normalization behaviours of rural fathers living with chronically-ill children: an Australian experience.

PubMed

Peck, Blake; Lillibridge, Jennifer

2005-03-01

This article reports findings from a larger qualitative study conducted to gain insight into the experience of fathers living with their chronically-ill children in rural Victoria, Australia. Data were collected via unstructured interviews with four fathers. The findings presented in this article explore the phenomena of normalization for fathers within the chronic illness experience. Fathers described normalizing the experience of living with their chronically-ill child as involving a combination of various coping strategies and behaviours including: (1) accepting the child's condition, (2) changing expectations, (3) focusing energies on a day-to-day basis, (4) minimizing knowledge-seeking behaviours, and (5) engaging in external distraction activities. Findings highlight the complex and unique normalization strategies these men utilized and contribute to knowledge and understanding of the complex nature of raising a chronically-ill child in rural Australia and provide a sound basis upon which to guide an ongoing and holistic assessment of fathers with chronically-ill children.

Asthma Management at Evans Army Community Hospital: Using Clinical Practice Guidelines to Improve Outcomes

DTIC Science & Technology

2005-04-26

Dr. David Tinkleman , Dr. Rohit Katial, Ms. Brenda Learned, Mr. Ely Tomines, Ms. Denise Downs, and Ms. Roberta Manfredini for without their support...disease, an MTF should have very few hospital admissions and emergency department visits for asthma related health issues (D. Tinkleman , personal...population and contain costs associated with an increasingly prevalent chronic illness. According to Dr. David Tinkleman , Vice President of Health

A view of the violence contained in chronic fatigue syndrome.

PubMed

Bennett, A

1997-04-01

In this paper I ask whether there might be any one particular psychopathology likely to be linked specifically with the physical illness known as chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME), and whether CFS/ME aids and abets and "fits' an original mental state. I think the question cannot yet be answered. However it is my hypothesis that in some personality structures the onset of CFS/ ME following a physical illness exacerbates negativity and is an aspect of ordinary depression where there is a lowering of energy levels and a loss of zest for life, or it may reveal the pathological aspect of unresolved rage. Depending on the degree of pathological disturbance, working with and through the rage may or may not result in a resolution of the symptoms of ME. In this paper I consider some of the problems in the transference and countertransference relationship, which make it extremely difficult to separate out reality from phantasy. There is then the further problem of the denial of the psyche by the patient as part of the violence inherent in the illness. One case is presented, an example of ME in a borderline male patient in whom resolution could not be achieved.

Resistance Training Exercise Program for Intervention to Enhance Gait Function in Elderly Chronically Ill Patients: Multivariate Multiscale Entropy for Center of Pressure Signal Analysis

PubMed Central

Jiang, Bernard C.

2014-01-01

Falls are unpredictable accidents, and the resulting injuries can be serious in the elderly, particularly those with chronic diseases. Regular exercise is recommended to prevent and treat hypertension and other chronic diseases by reducing clinical blood pressure. The “complexity index” (CI), based on multiscale entropy (MSE) algorithm, has been applied in recent studies to show a person's adaptability to intrinsic and external perturbations and widely used measure of postural sway or stability. The multivariate multiscale entropy (MMSE) was advanced algorithm used to calculate the complexity index (CI) values of the center of pressure (COP) data. In this study, we applied the MSE & MMSE to analyze gait function of 24 elderly, chronically ill patients (44% female; 56% male; mean age, 67.56 ± 10.70 years) with either cardiovascular disease, diabetes mellitus, or osteoporosis. After a 12-week training program, postural stability measurements showed significant improvements. Our results showed beneficial effects of resistance training, which can be used to improve postural stability in the elderly and indicated that MMSE algorithms to calculate CI of the COP data were superior to the multiscale entropy (MSE) algorithm to identify the sense of balance in the elderly. PMID:25295070

Profiling Patients' Healthcare Needs to Support Integrated, Person-Centered Models for Long-Term Disease Management (Profile): Research Design.

PubMed

Elissen, Arianne Mj; Hertroijs, Dorijn Fl; Schaper, Nicolaas C; Vrijhoef, Hubertus Jm; Ruwaard, Dirk

2016-04-29

This article presents the design of PROFILe, a study investigating which (bio)medical and non-(bio)medical patient characteristics should guide more tailored chronic care. Based on this insight, the project aims to develop and validate 'patient profiles' that can be used in practice to determine optimal treatment strategies for subgroups of chronically ill with similar healthcare needs and preferences. PROFILe is a practice-based research comprising four phases. The project focuses on patients with type 2 diabetes. During the first study phase, patient profiles are drafted based on a systematic literature research, latent class growth modeling, and expert collaboration. In phase 2, the profiles are validated from a clinical, patient-related and statistical perspective. Phase 3 involves a discrete choice experiment to gain insight into the patient preferences that exist per profile. In phase 4, the results from all analyses are integrated and recommendations formulated on which patient characteristics should guide tailored chronic care. PROFILe is an innovative study which uses a uniquely holistic approach to assess the healthcare needs and preferences of chronically ill. The patient profiles resulting from this project must be tested in practice to investigate the effects of tailored management on patient experience, population health and costs.

Chronic physical conditions in older adults with mental illness and/ or substance use disorders.

PubMed

Lin, Wen-Chieh; Zhang, Jianying; Leung, Gary Y; Clark, Robin E

2011-10-01

To examine the association between mental illness and chronic physical conditions in older adults and investigate whether co-occurring substance use disorders (SUDs) are associated with greater risk of chronic physical conditions beyond mental illness alone. A retrospective cross-sectional study. Medicare and Medicaid programs in Massachusetts. Massachusetts Medicare and Medicaid members aged 65 and older as of January 1, 2005 (N = 679,182). Diagnoses recorded on Medicare and Medicaid claims were used to identify mental illness, SUDs, and 15 selected chronic physical conditions. Community-dwelling older adults with mental illness or SUDs had higher adjusted risk for 14 of the 15 selected chronic physical conditions than those without these disorders; the only exception was eye diseases. Moreover, those with co-occurring SUDs and mental illness had the highest adjusted risk for 11 of these chronic conditions. For residents of long-term care facilities, mental illness and SUDs were only moderately associated with the risk of chronic physical conditions. Community-dwelling older adults with mental illness or SUDs, particularly when they co-occurred, had substantially greater medical comorbidity than those without these disorders. For residents of long-term care facilities, the generally uniformly high medical comorbidity may have moderated this relationship, although their high prevalence of mental illness and SUDs signified greater healthcare needs. These findings strongly suggest the imminent need for integrating general medical care, mental health services, and addiction health services for older adults with mental illness or SUDs. © 2011, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.

Retrospective chart review of obesity and episodic and chronic illness among rural Mexican-American adolescents accessing rural health clinic services.

PubMed

Champion, Jane Dimmitt; Pierce, Sherrie; Collins, Jennifer L

2015-06-01

Obesity impacts the physical and psychological health of children and adolescents, and is a risk factor for development of episodic and chronic illness. Rural Mexican-American adolescents are at risk for obesity and associated chronic illnesses.The study used a retrospective chart review of data collected routinely in a rural health clinic setting from 1 January 2005 to 31 December 2010 to assess incidence of overweight/obesity status and episodic or chronic illness among Mexican-American adolescents aged 12-18 years. Analyses included body mass index, age, gender, and episodic or chronic illness diagnoses. Two hundred twelve charts were audited; women (n = 114, 53.8%), men (n = 98 46.2%); normal (n = 105, 49.5%), overweight/obese (n = 107, 50.5%). There were more female normal (n = 61, 53.5%) vs. overweight/obese (n = 53, 46.5%). More male overweight/obese (n = 54, 55.1%) than normal weight (n = 44, 44.9%). Age at first documented overweight/obesity status occurred in early adolescence (median = 13 years, mode = 12 years). Chronic illness incidence was higher among men than women, and overweight/obese vs. normal weight adolescents and in sub-categorizations by weight and specific illness. Incidence of episodic illness was higher among women than men, with variation by weight and specific illness. Disproportionately high incidence of episodic or chronic illness and overweight/obesity identified among rural Mexican-American adolescents compels intervention modification to improve effectiveness. © 2014 Wiley Publishing Asia Pty Ltd.

"My Child Is Not an Illness": Mothers as Advocates for Pedagogy and Policies for Chronically Ill Students

ERIC Educational Resources Information Center

Katzman, Lauren

2013-01-01

On a national level, there is no answer in the law about identifying and servicing chronically ill students. Because the national definitions and requirements are ambiguous, the local policies are also unclear. The purpose of this study was to analyze the stories told by mothers about their children who suffer from chronic illness in order to help…

Caregiver Experience During Patients’ Advanced Chronic Illness and Last Year of Life

PubMed Central

Sautter, Jessica M.; Tulsky, James A.; Johnson, Kimberly S.; Olsen, Maren K.; Burton-Chase, Allison M.; Lindquist, Jennifer Hoff; Zimmerman, Sheryl; Steinhauser, Karen E.

2014-01-01

Background/Objectives Caregivers of patients with serious illness endure significant burden, yet it is not clear at what stage of advanced illness patient and caregiver needs are greatest. This study compared prevalence and predictors of caregiver esteem and burden during two different stages of patients’ illnesses – advanced chronic illness and the last year of life. Design Longitudinal, observational cohort study. Setting Community sample recruited from outpatient clinics at Duke University and Durham VA Medical Centers. Participants Patients living with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n=62) or end-of-life (n=62) patient-caregiver dyads. Measurements We measured caregiver experience monthly with the Caregiver Reaction Assessment (CRA), which includes caregiver esteem and 4 domains of burden: schedule, health, family, and finances. Results During both chronic-illness and end-of-life, high caregiver esteem was almost universal (95%); health, family, and financial burden were endorsed by <25% of the sample. Schedule burden was the most prevalent form of burden and was experienced more frequently by end-of-life caregivers (58%) than the chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over one year. Few factors were associated with burden. Conclusion Caregiver experience is relatively stable over one year and similar among caregivers of patients in the last year of life and those further upstream in advanced illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness. PMID:24803020

Single parents of children with chronic illness: an understudied phenomenon.

PubMed

Brown, Ronald T; Wiener, Lori; Kupst, Mary Jo; Brennan, Tara; Behrman, Richard; Compas, Bruce E; David Elkin, T; Fairclough, Diane L; Friebert, Sarah; Katz, Ernest; Kazak, Anne E; Madan-Swain, Avi; Mansfield, Nancy; Mullins, Larry L; Noll, Robert; Patenaude, Andrea Farkas; Phipps, Sean; Sahler, O J; Sourkes, Barbara; Zeltzer, Lonnie

2008-05-01

To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.

'It's not a disease, it's a nuisance': controlling diabetes and achieving goals in the context of men with Type 1 diabetes.

PubMed

O'Hara, Lesley; Gough, Brendan; Seymour-Smith, Sarah; Watts, Simon

2013-11-01

Despite a steady growth in research into men's health, little is known about how men experience life with a chronic illness like Type 1 diabetes. To address this knowledge gap, we conducted an interview study with 15 men who have Type 1 diabetes. Following grounded theory analysis of the interview transcripts, we generated a number of inter-related themes which were then formulated as a theory of adjustment to life with Type 1 diabetes. This theory indicates that men reduce the seriousness of diabetes by defining it in ways other than a serious illness. By viewing diabetes in this way, men are then able to prioritise the pursuit of their personal goals over adherence to the diabetes regimen. Finally, men reassess their relationship with diabetes in light of diabetes-related complications. The goal of this process is to find the 'best fit' for diabetes in their lives - a place which will allow them to pursue and satisfy their personal goals. As men progress through life, personal goals may change and so too will their relationship with diabetes.

[Euthanasia in the Third Reich--only a problem of psychiatry? On the development of the euthanasia debate 1933-1941 in Germany].

PubMed

Thom, A; Hahn, S

1986-01-15

The devastating consequences of the Fascist dictatorship in Germany for the ethical thinking of the physicians are particularly clearly recognizable by the mass killings of severely damaged children and patients with chronic psychic diseases which were performed at that time. Recent investigations of the developments which began in 1938 show that by way of intensive efforts for a juridicial legalization of the "active euthanasia" an enlargement of this killing practice has been striven after. References to a motive of compassion and the free decision of the affected persons should cover the real intention for reducing welfare services. A bill presented in 1940 for a law "on euthanasia for incurable ill persons" found the unanimous consent of the renowned physicians consulted for this purpose. Though this law finally did not become legal beginning with 1941 the medical practice showed further forms of the repressive and antihumane association with ill persons who were regarded as incurable, which must be valuated as practical consequences of an unadmissible relativation of the life-preserving task of medicine.

A tool for tracking and assessing chronic illness care in prison (ACIC-P).

PubMed

Wang, Emily A; Aminawung, Jenerius A; Ferguson, Warren; Trestman, Robert; Wagner, Edward H; Bova, Carol

2014-10-01

Chronic disease care is being transformed in correctional settings, given an aging inmate population, ongoing quality improvement efforts, litigation, and rising costs. The Chronic Care Model, established for chronic disease care in the community, might be a suitable framework to transform chronic disease care in prison, but it has not been systematically adapted for the correctional health care setting. We employed cognitive interviewing to adapt an extant survey used to measure the delivery of chronic illness care in the community, Assessment of Chronic Illness Care, for a prison setting. Results from the cognitive interviews and the modified Assessment of Chronic Illness Care-Prison (ACIC-P) instrument are presented in this article. Future studies will need to test the reliability and psychometric properties of the adapted ACIC-P. © The Author(s) 2014.

Targeting “hardly reached” people with chronic illness: a feasibility study of a person-centered self-management education approach

PubMed Central

Torenholt, Rikke; Helms Andersen, Tue; Møller, Birgitte Lund; Willaing, Ingrid

2018-01-01

Background Self-management education is critical to the development of successful health behavior changes related to chronic illness. However, people in high-risk groups attend less frequently or benefit less from patient education programs than do people with more socioeconomic advantages. Aim The aim was to test the feasibility of a participatory person-centered education approach and tool-kit targeting self-management of chronic illness in hardly reached people. Methods After participating in a training program, educators (n=77) tested the approach in practice. Data collection included online questionnaires for educators (n=65), observations of education sessions (n=7), and interviews with educators (n=11) and participants (n=22). Descriptive statistics were calculated. Transcripts of interviews and observations were analyzed using systematic text condensation. Feasibility was examined in terms of practicality, integration, suitability, and efficacy. Results Educators had a positive response to the approach and found that the tools supported involving participants in education and support. Participant satisfaction varied, depending on the ability of educators to integrate the tools into programs in a meaningful way. The tools provided time for reflection in the education process that benefited participants and educators alike. Educators found it challenging to allow participants to help set the agenda and to exchange experiences without educator control. Barriers to use reported by educators included lack of time for both training and preparation. Limitations The testing included varied groups of participants, some groups included members of hardly reached populations and others did not. Also, some tools were only tried in practice by a few educators. Conclusion The approach was feasible in terms of practicality, integration, acceptability, and efficacy and perceived by educators as suitable for both hardly reached participants and those who are less disadvantaged. Implementation of the approach requires time for training and preparation. PMID:29497283

Living with chronic illness scale: international validation of a new self-report measure in Parkinson’s disease

PubMed Central

Ambrosio, Leire; Portillo, Mari Carmen; Rodríguez-Blázquez, Carmen; Rodriguez-Violante, Mayela; Castrillo, Juan Carlos Martínez; Arillo, Víctor Campos; Garretto, Nélida Susana; Arakaki, Tomoko; Dueñas, Marcos Serrano; Álvarez, Mario; Ibáñez, Ivonne Pedroso; Carvajal, Ana; Martínez-Martín, Pablo

2016-01-01

Understanding how a person lives with a chronic illness, such as Parkinson’s disease (PD), is necessary to provide individualized care and professionals role in person-centered care at clinical and community levels is paramount. The present study was aimed to analyze the psychometric properties of the Living with Chronic Illness-PD Scale (EC-PC) in a wide Spanish-speaking population with PD. International cross-sectional study with retest was carried out with 324 patients from four Latin American countries and Spain. Feasibility, acceptability, scaling assumptions, reliability, precision, and construct validity were tested. The study included 324 patients, with age (mean±s.d.) 66.67±10.68 years. None of the EC-PC items had missing values and all acceptability parameters fulfilled the standard criteria. Around two-third of the items (61.54%) met scaling assumptions standards. Concerning internal consistency, Cronbach’s alpha values were 0.68–0.88; item-total correlation was >0.30, except for two items; item homogeneity index was >0.30, and inter-item correlation values 0.14–0.76. Intraclass correlation coefficient for EC-PC stability was 0.76 and standard error of measurement (s.e.m.) for precision was 8.60 (for a EC-PC s.d.=18.57). EC-PC presented strong correlation with social support (rS=0.61) and moderate correlation with life satisfaction (rS=0.46). Weak and negligible correlations were found with the other scales. Internal validity correlations ranged from 0.46 to 0.78. EC-PC total scores were significantly different for each severity level based on Hoehn and Yahr and Clinical Impression of Severity Index, but not for Patient Global Impression of Severity. The EC-PC has satisfactory acceptability, reliability, precision, and validity to evaluate living with PD. PMID:28725703

Mapping chronic illness in the age of globalization: reclaiming the good for the chronically ill.

PubMed

del Pilar Camargo Plazas, Maria

2009-01-01

Until recently, infectious diseases were the main cause of death worldwide. New medical discoveries and the evolution of public health improved life expectancy and the ability to survive acute threats, thus changing the course of diseases from acute to chronic. Today, chronic illness is the most important health concern worldwide. Chronic illness increases existing poverty and pushes other people into it. As nurses, members of the healthcare system and members of this world, we cannot forget that our response toward globalization and chronic disease has to be centered in leadership through reorienting local and national healthcare systems. All actions must be grounded in the ethical treatment of the ill; we cannot close our eyes in hospitals or communities to what is happening now worldwide because our responsibility is to promote health, prevent disease, and care for human beings.

Caring for the Chronically Ill: A Vital Subject for Medical Education.

ERIC Educational Resources Information Center

Cohen, Andrew J.

1998-01-01

Patients with chronic illness account for three-fourths of United States' health-care expenditures, and considerable growth in these costs is likely as the population ages. However, management of chronic illness has received little attention in either undergraduate or graduate medical education. Competencies required to develop curricula in…

School Reentry for the Child with Chronic Illness.

ERIC Educational Resources Information Center

Sexson, Sandra B.; Madan-Swain, Avi

1993-01-01

This article focuses on the issues of reintegrating the chronically ill child into the school setting, the types of school problems encountered, the process of school reentry, (including a successful school reentry plan), and the implications for the school and the family of returning the chronically ill child to school. (DB)

Children Coping with Chronic Illness.

ERIC Educational Resources Information Center

Perez, Lissette M.

Children who live with chronic illness are confronted with challenges that frequently force them to cope in myriad ways. The ways in which children face chronic illness are summarized in this literature review. Also covered, are how the effects of family can influence coping strategies and how family members, especially parents, cope with their…

Illness beliefs among patients with chronic widespread pain - associations with self-reported health status, anxiety and depressive symptoms and impact of pain.

PubMed

Järemo, P; Arman, M; Gerdle, B; Larsson, B; Gottberg, K

2017-07-05

Chronic widespread pain (CWP) is a disabling condition associated with a decrease in health. Illness beliefs are individual and are acquired during life. Constraining beliefs may prevent patients from regaining health. Understanding these patients' illness beliefs may be a way to improve the health care they are offered. The aim of this study was to describe illness beliefs among patients with CWP and associations with self-reported health, anxiety and depressive symptoms, and impact of pain. In this cross-sectional study, questionnaires were sent by mail to 330 patients including socio-demographic information, the Illness Perception Questionnaire (IPQ-R), the Short-Form General Health Survey (SF-36) and the Hospital Anxiety and Depression Scale (HADS). Data were analysed using descriptive statistics, non-parametric tests and linear regression analyses. Patients experienced and related a high number of symptoms to CWP (mean (SD) 9 (3)). The patients believed their illness to be long lasting, to affect their emotional well being, and to have negative consequences for their lives. Some 72% reported having severe or very severe pain, and impact of pain according to SF-36 was negatively correlated to several illness beliefs dimensions, anxiety- and depressive symptoms. In regression analyses, the Identity, Consequences and Personal control dimensions of IPQ-R and Anxiety- and Depressive symptoms explained 32.6-56.1% of the variance in the two component scores of SF-36. Constraining illness beliefs in patients with CWP are related to worse health status, especially in cases of high number of physical or mental symptoms, beliefs of negative consequences or the illness affecting them emotionally. Identification and understanding of these beliefs may reduce patients' suffering if they are taken into consideration in rehabilitation programs and in development of new evidence-based interventions aimed at increasing health in patients with CWP.

Working as a doctor when chronically ill or disabled: comments made by doctors responding to UK surveys.

PubMed

Smith, Fay; Goldacre, Michael J; Lambert, Trevor W

2016-07-01

To report a qualitative study of themes doctors raised spontaneously, in a large-scale prospective cohort study covering many aspects of their medical careers, when referring to their own chronic illness or disability. Questionnaire survey. UK. Questionnaires were sent one, five and 10 years after graduation to 44,539 doctors who qualified between 1993 and 2012 in the UK: 38,613 questionnaires were returned and 11,859 respondents provided comments made by doctors about their training or work. The comments of 123 doctors about their own chronic illness or disability. Main themes raised included poor support for doctors with chronic illness or disability, delays in and changes to careers (either planned ahead or imposed), the impact of pressure at work, difficulties returning to work after illness, limitations on career choices and inadequate careers advice for doctors with chronic illness or disabilities. More needs to be done to ensure that doctors with chronic illness or disability receive appropriate support. Occupational health guidance should be monitored closely, with more support for ill doctors including adjustments to the job, help if needed with morale and mental health, and advice on career options. Further studies should establish the prevalence of long-term health conditions among doctors.

Does health status influence acceptance of illness in patients with chronic respiratory diseases?

PubMed

Kurpas, D; Mroczek, B; Brodowski, J; Urban, M; Nitsch-Osuch, A

2015-01-01

The level of illness acceptance correlates positively with compliance to the doctor's recommendations, and negatively with the frequency and intensity of complications of chronic diseases. The purpose of this study was to determine the influence of the clinical condition on the level of illness acceptance, and to find variables which would have the most profound effect on the level of illness acceptance in patients with chronic respiratory diseases. The study group consisted of 594 adult patients (mean age: 60 ± 15 years) with mixed chronic respiratory diseases, recruited from patients of 136 general practitioners. The average score in the Acceptance of Illness Scale was 26.2 ± 7.6. The low level of illness acceptance was noted in 174 (62.6 %) and high in 46 (16.6 %) patients. Analysis of multiple regressions was used to examine the influence of explanatory variables on the level of illness acceptance. The variables which shaped the level of illness acceptance in our patients included: improvement of health, intensity of symptoms, age, marital status, education level, place of residence, BMI, and the number of chronic diseases. All above mentioned variables should be considered during a design of prevention programs for patients with mixed chronic respiratory diseases.

Marshalling Social Support: A “Care-Getting” Model for Persons Living with Cancer

PubMed Central

Kahana, Eva; Kahana, Boaz; Wykle, May; Kulle, Diana

2009-01-01

This paper offers a stress theory based conceptual framework for understanding proactive options for care-getting for patients living with cancer that is also relevant to patients living with other chronic or life threatening illnesses. Barriers and facilitators to active efforts for obtaining responsive care from both informal and formal sources are discussed. This “Care-Getting” model explores benefits of proactive care-getting for diminishing physical discomfort/suffering, burden of illness and disability, and psychological distress. We highlight unique issues in care-getting that patients face at different stages of the life course. Implications of prior research related to the model for practice and intervention are discussed. PMID:20107524

The importance of illness duration, age at diagnosis and the year of diagnosis for labour participation chances of people with chronic illness: results of a nationwide panel-study in The Netherlands.

PubMed

Rijken, Mieke; Spreeuwenberg, Peter; Schippers, Joop; Groenewegen, Peter P

2013-09-04

Compared to participation rates among general populations, participation of people with chronic illness in the labour market lags behind. This is undesirable, both from the perspective of individuals' well-being as from a macro-economic perspective for western countries where concerns exist about labour supply and sustainability of social security in the near future. To help develop successful policy measures to prevent early drop-out and support reintegration, we aimed to gain insight into the role of three age related characteristics that may relate to labour participation chances of people with chronic illness: the duration of their illness, how old they were when the chronic disease was diagnosed and the historical year in which the diagnosis was established. We analyzed data of one (first) measurement of several cohorts of people diagnosed with a somatic chronic disease, who (had) participated in the Dutch 'National Panel of people with Chronic illness or Disability' since 1998 (N = 4634 in total). Multi-level logistic regression analyses were conducted to estimate random effects of the age at diagnosis and the year of diagnosis and fixed effects of illness duration on labour participation, while correcting for the effects of socio-demographic and disease characteristics and socio-economic indicators. A significant part of the variation in labour participation among people with chronic illness relates to the age they had when they were diagnosed. Furthermore, a longer illness duration is significantly associated with a lower chance of being economically active. This is more the case for men than for women. Labour participation of cancer survivors depends on the phase of the illness they find themselves in. No evidence was found that the year in which the diagnosis was established matters for employment chances later in life. Age at diagnosis and illness duration relate to chronically ill people's chances to participate in the labour market, but how and how strong they relate to labour participation depend on gender and the type of chronic disease at stake. Prospective studies are needed to assess illness trajectories of specific diagnostic groups along with the development of their school and work careers.

The importance of illness duration, age at diagnosis and the year of diagnosis for labour participation chances of people with chronic illness: results of a nationwide panel-study in the Netherlands

PubMed Central

2013-01-01

Background Compared to participation rates among general populations, participation of people with chronic illness in the labour market lags behind. This is undesirable, both from the perspective of individuals’ well-being as from a macro-economic perspective for western countries where concerns exist about labour supply and sustainability of social security in the near future. To help develop successful policy measures to prevent early drop-out and support reintegration, we aimed to gain insight into the role of three age related characteristics that may relate to labour participation chances of people with chronic illness: the duration of their illness, how old they were when the chronic disease was diagnosed and the historical year in which the diagnosis was established. Methods We analyzed data of one (first) measurement of several cohorts of people diagnosed with a somatic chronic disease, who (had) participated in the Dutch ‘National Panel of people with Chronic illness or Disability’ since 1998 (N = 4634 in total). Multi-level logistic regression analyses were conducted to estimate random effects of the age at diagnosis and the year of diagnosis and fixed effects of illness duration on labour participation, while correcting for the effects of socio-demographic and disease characteristics and socio-economic indicators. Results A significant part of the variation in labour participation among people with chronic illness relates to the age they had when they were diagnosed. Furthermore, a longer illness duration is significantly associated with a lower chance of being economically active. This is more the case for men than for women. Labour participation of cancer survivors depends on the phase of the illness they find themselves in. No evidence was found that the year in which the diagnosis was established matters for employment chances later in life. Conclusion Age at diagnosis and illness duration relate to chronically ill people’s chances to participate in the labour market, but how and how strong they relate to labour participation depend on gender and the type of chronic disease at stake. Prospective studies are needed to assess illness trajectories of specific diagnostic groups along with the development of their school and work careers. PMID:24007362

Work and "mass personal" communication as means of navigating nutrition and exercise concerns in an online cancer community.

PubMed

Love, Brad; M Thompson, Charee; Crook, Brittani; Donovan-Kicken, Erin

2013-05-31

Health and psychosocial outcomes for young adults affected by cancer have improved only minimally in decades, partially due to a lack of relevant support and information. Given significant unmet needs involving nutrition and exercise, it is important to understand how this audience handles information about food and fitness in managing their cancer experiences. Using the theory of illness trajectories as a framework, we explored how four lines of work associated with living with a chronic illness such as cancer (illness, everyday life, biographical, and the recently explicated construct of communication work) impacts and is impacted by nutrition and exercise concerns. Following a search to extract all nutrition- and exercise-related content from the prior 3 years (January 2008 to February 2011), a sample of more than 1000 posts from an online support community for young adults affected by cancer were qualitatively analyzed employing iterative, constant comparison techniques. Sensitized by illness trajectory research and related concepts, 3 coders worked over 4 months to examine the English-language, de-identified text files of content. An analysis of discussion board threads in an online community for young adults dealing with cancer shows that nutrition and exercise needs affect the young adults' illness trajectories, including their management of illness, everyday life, biographical, and communication work. Furthermore, this paper helps validate development of the "communication work" variable, explores the "mass personal" interplay of mediated and interpersonal communication channels, and expands illness trajectory work to a younger demographic than investigated in prior research. Applying the valuable concepts of illness, everyday life, biographical, and communication work provides a more nuanced understanding of how young adults affected by cancer handle exercise and nutrition needs. This knowledge can help provide support and interventional guidance for the well-documented psychosocial challenges particular to this demographic as they manage the adversities inherent in a young adult cancer diagnosis. The research also helps explain how these young adults meet communication needs in a "mass personal" way that employs multiple communication channels to meet goals and thus might be more effectively reached in a digital world.

Anxious, introverted personality traits in patients with chronic subjective dizziness.

PubMed

Staab, Jeffrey P; Rohe, Daniel E; Eggers, Scott D Z; Shepard, Neil T

2014-01-01

Chronic subjective dizziness (CSD) is a neurotologic disorder of persistent non-vertiginous dizziness, unsteadiness, and hypersensitivity to one's own motion or exposure to complex visual stimuli. CSD usually follows acute attacks of vertigo or dizziness and is thought to arise from patients' failure to re-establish normal locomotor control strategies after resolution of acute vestibular symptoms. Pre-existing anxiety or anxiety diathesis may be risk factors for CSD. This study tested the hypothesis that patients with CSD are more likely than individuals with other chronic neurotologic illnesses to possess anxious, introverted personality traits. Data were abstracted retrospectively from medical records of 40 patients who underwent multidisciplinary neurotology evaluations for chronic dizziness. Twenty-four subjects had CSD. Sixteen had chronic medical conditions other than CSD plus co-existing anxiety disorders. Group differences in demographics, Dizziness Handicap Inventory (DHI) scores, Hospital Anxiety and Depression Scale (HADS) scores, DSM-IV diagnoses, personality traits measured with the NEO Personality Inventory - Revised (NEO-PI-R), and temperaments composed of NEO-PI-R facets were examined. There were no differences between groups in demographics, mean DHI or HADS-anxiety scores, or DSM-IV diagnoses. The CSD group had higher mean HADS-depression and NEO-PI-R trait anxiety, but lower NEO-PI-R extraversion, warmth, positive emotions, openness to feelings, and trust (all p<0.05). CSD subjects were significantly more likely than comparison subjects to have a composite temperament of high trait anxiety plus low warmth or excitement seeking. An anxious, introverted temperament is strongly associated with CSD and may be a risk factor for developing this syndrome. Copyright © 2013 Elsevier Inc. All rights reserved.

Co-occurrence of mental and physical illness in U.S. Latinos

PubMed Central

Feldman, Jonathan M.; Canino, Glorisa; Steinman, Kenneth; Alegría, Margarita

2009-01-01

Background This study describes the prevalence of comorbid physical and mental health problems in a national sample of U.S. Latinos. We examined the co-occurrence of anxiety and depression with prevalent physical chronic illnesses in a representative sample of Latinos with national origins from Mexico, Cuba, Puerto Rico, and other Latin American countries. Method We used data on 2,554 Latinos (75.5% response rate) ages 18 years and older from the National Latino and Asian American Study (NLAAS). The NLAAS was based on a stratified area probability sample design, and the sample came from the 50 states and Washington, DC. Survey questionnaires were delivered both in person and over the telephone in multiple languages, including Spanish and English. Psychiatric disorders were assessed using the World Mental Health Survey Initiative version of the World Health Organization Composite International Diagnostic Interview (WMH-CIDI). Physical chronic illness was assessed by self-reported history. Results Puerto Ricans had the highest prevalence of meeting criteria for any comorbid psychiatric disorder (more than one disorder). Puerto Ricans had the highest prevalence (22%) of subject-reported asthma history, while Cubans had the highest prevalence (33%) of cardiovascular disease. After accounting for age, sex, household income, number of years in the U.S., immigrant status, and comorbid anxiety and depression, anxiety was associated with diabetes and cardiovascular disease, in the entire sample. Depression and comorbid anxiety and depression were associated with asthma but not with other physical diseases, in the entire sample. The relationship between chronic physical and mental illness was not confounded by immigration status or number of years in the U.S. Discussion Despite previous findings that link acculturation with both chronic physical and mental illness, this study does not find that number of years in the US nor nativity explain the prevalence of psychiatric-medical comorbidities. This study demonstrates the importance of considering psychiatric and medical comorbidity among specific ethnic groups, as different patterns emerge than when using aggregate ethnic measures. Research is needed on both the pathways and the mechanisms of comorbidity for the specific Latino groups. PMID:17013767

Complex adaptive chronic care - typologies of patient journey: a case study.

PubMed

Martin, Carmel M; Grady, Deirdre; Deaconking, Susan; McMahon, Catherine; Zarabzadeh, Atieh; O'Shea, Brendan

2011-06-01

Complex adaptive chronic care (CACC) is a framework based upon complex adaptive systems' theory developed to address different stages in the patient journey in chronic illness. Simple, complicated, complex and chaotic phases are proposed as diagnostic types. To categorize phases of the patient journey and evaluate their utility as diagnostic typologies. A qualitative case study of two cohorts, identified as being at risk of avoidable hospitalization: 12 patients monitored to establish typologies, followed by 46 patients to validate the typologies. Patients were recruited from a general practitioner out-of-hours service. Self-rated health, medical and psychological health, social support, environmental concerns, medication adherence and health service use were monitored with phone calls made 3-5 times per week for an average of 4 weeks. Analysis techniques included frequency distributions, coding and categorization of patients' longitudinal data using a CACC framework. Twelve and 46 patients, mean age 69 years, were monitored for average of 28 days in cohorts 1 and 2 respectively. Cohorts 1 and 2 patient journeys were categorized as being: stable complex 66.66% vs. 67.4%, unstable complex 25% vs. 26.08% and unstable complex chaotic 8.3% vs. 6.52% respectively. An average of 0.48, 0.75 and 2 interventions per person were provided in the stable, unstable and chaotic journeys. Instability was related to complex interactions between illness, social support, environment, as well as medication and medical care issues. Longitudinal patient journeys encompass different phases with characteristic dynamics and are likely to require different interventions and strategies - thus being 'adaptive' to the changing complex dynamics of the patient's illness and care needs. CACC journey types provide a clinical tool for health professionals to focus time and care interventions in response to patterns of instability in multiple domains in chronic illness care. © 2011 Blackwell Publishing Ltd.

Educating registered nursing and healthcare assistant students in community-based supportive care of older adults: A mixed methods study.

PubMed

Pesut, Barbara; McLean, Tammy; Reimer-Kirkham, Sheryl; Hartrick-Doane, Gweneth; Hutchings, Deanna; Russell, Lara B

2015-09-01

Collaborative education that prepares nursing and healthcare assistant students in supportive care for older adults living at home with advanced chronic illness is an important innovation to prepare the nursing workforce to meet the needs of this growing population. To explore whether a collaborative educational intervention could develop registered nursing and healthcare assistant students' capabilities in supportive care while enhancing care of clients with advanced chronic illness in the community. Mixed method study design. A rural college in Canada. Twenty-one registered nursing and 21 healthcare assistant students completed the collaborative workshop. Eight registered nursing students and 13 healthcare assistant students completed an innovative clinical experience with fifteen clients living with advanced chronic illness. Pre and post-test measures of self-perceived competence and knowledge in supportive care were collected at three time points. Semi-structured interviews were conducted to evaluate the innovative clinical placement. Application of Friedman's test indicated statistically significant changes on all self-perceived competence scores for RN and HCA students with two exceptions: the ethical and legal as well as personal and professional issues domains for HCA students. Application of Friedman's test to self-perceived knowledge scores showed statistically significant changes in all but one domain (interprofessional collaboration and communication) for RN students and all but three domains for HCA students (spiritual needs, ethical and legal issues, and inter-professional collaboration and communication). Not all gains were sustained until T-3. The innovative community placement was evaluated positively by clients and students. Collaborative education for nursing and healthcare assistant students can enhance self-perceived knowledge and competence in supportive care of adults with advanced chronic illness. An innovative clinical experience can maximize reciprocal learning while providing nursing services to a population that is not receiving home-based care. Copyright © 2015. Published by Elsevier Ltd.

Patients' willingness to pay for their drugs in primary care clinics in an urbanized setting in Malaysia: a guide on drug charges implementation.

PubMed

Puteh, Sharifa Ezat Wan; Ahmad, Siti Nurul Akma; Aizuddin, Azimatun Noor; Zainal, Ramli; Ismail, Ruhaini

2017-01-01

Malaysia is an upper middle income country that provides subsidized healthcare to ensure universal coverage to its citizens. The challenge of escalating health care cost occurs in most countries, including Malaysia due to increase in disease prevalence, which induced an escalation in drug expenditure. In 2009, the Ministry of Health has allocated up to Malaysian Ringgit (MYR) 1.402 billion (approximately USD 390 million) on subsidised drugs. This study was conducted to measure patients' willingness to pay (WTP) for treatment of chronic condition or acute illnesses, in an urbanized population. A cross-sectional study, through face-to-face interview was conducted in an urban state in 2012-2013. Systematic random sampling of 324 patients was selected from a list of patients attending ten public primary cares with Family Medicine Specialist service. Patients were asked using a bidding technique of maximum amount (in MYR) if they are WTP for chronic or acute illnesses. Patients are mostly young, female, of lower education and lower income. A total of 234 respondents (72.2%) were not willing to pay for drug charges. WTP for drugs either for chronic or acute illness were at low at median of MYR10 per visit (USD 3.8). Bivariate analysis showed that lower numbers of dependent children (≤3), higher personal and household income are associated with WTP. Multivariate analysis showed only number of dependent children (≤3) as significant ( p  = 0.009; 95% CI 1.27-5.44) predictor to drugs' WTP. The result indicates that primary care patients have low WTP for drugs, either for chronic condition or acute illness. Citizens are comfortable in the comfort zone whereby health services are highly subsidized through universal coverage. Hence, there is a resistance to pay for drugs.

Illness perceptions and coping with disease in chronic obstructive pulmonary disease: Effects on health-related quality of life.

PubMed

Vaske, Isabelle; Kenn, Klaus; Keil, Daniel C; Rief, Winfried; Stenzel, Nikola M

2017-10-01

This study investigated the effects of illness perceptions and coping with disease on health-related quality of life in chronic obstructive pulmonary disease. Therefore, participants ( N = 444) completed online questionnaires assessing illness severity (chronic obstructive pulmonary disease stage), Illness Perceptions Questionnaire, coping with disease (Essener Coping Questionnaire), and health-related quality of life (short form-12). Hierarchical regression and moderation analyses were conducted. The results showed that health-related quality of life was predicted by illness perceptions and several aspects of coping with disease. The association between illness perceptions and health-related quality of life was mediated by the corresponding coping with disease subscales. It is concluded that in order to prevent decreasing health-related quality of life in chronic obstructive pulmonary disease, treatment may be adjusted by promoting coping with disease and functional illness perceptions.

Complete mental health in adult siblings of those with a chronic illness or disability.

PubMed

Hallion, Madeleine; Taylor, Amanda; Roberts, Rachel

2018-02-01

Sibling relationships have lifelong significance and childhood chronic illness and disability can have considerable impacts on healthy siblings, influencing development into adulthood. Research has not yet assessed well-being in this population using measures of both mental health and mental illness. Thus, this study assessed well-being in a comprehensive manner using the complete mental health (CMH) model. Participants (N = 144) included both adult siblings of those with chronic illness or disability and adults with healthy siblings. Measures of positive social, psychological and emotional well-being were used to assess mental health and a measure of depression, anxiety, and stress was used to assess mental illness. A high proportion of participants, both with and without siblings with a chronic illness or disability, were experiencing symptoms of mental illness, accompanied by high wellbeing. This indicates that many participants fit into the struggling category of the CMH model. The present research highlights the need for early intervention services to ensure that siblings of those with a chronic illness or disability are well supported in developing strengths, as well as managing difficulties. Results also indicate that targeting students in mental health promotion is important to encourage participation in services. Implications for rehabilitation Siblings of those with a chronic illness or disability need to be included in assessments in order to understand the experience of the family unit. It is important for families and clinicians to be aware of the needs of healthy siblings and encourage them to interact with support services in order to maximise and maintain well-being. Skills-based support could be beneficial, particularly for providing caregivers with strategies to meet the needs of both their child with a chronic illness or disability and their healthy children.

[Should assistance to suicide be allowed in a case of chronic persistent depression in a nursing home patient].

PubMed

Wettstein, A

2010-05-12

A 75 years old widower suffered since 26 years of many episodes of recurrent depressions. A compensated diabetes and a chronic, slowly progressive sensory-motor Neuropathy are relevant somatic comorbidities. Because of anxiety attacks complicating his progressively severe depression he could not be cared adequately in the old people home he lived in and was hospitalised. The anxiety responded well to Benzodiazepines, but the severe depression persisted despite a pharmacotherapy with Lithium, Mianserin and Citalopran. He was therefore transferred into a nursing home. There he demanded - supported by his son - an assisted suicide. 2 psychiatrists judged his wish to die as independent to his actual depression, a geronto-psychiatrist judged his suicidal ideas as a typical symptom of depression. Therefore the demanded assisted suicide was not allowed in the nursing home according to communal legal rules not allowing assisted suicide of persons with psychiatric illness in communal institutions. A hospitalisation against his own and his son's will was however not done and the assisted suicide was executed in privacy. This in Switzerland is legal even in cases of severe chronic psychiatric illness without a terminal disease.

Appraisals, perceived dyadic communication, and quality of life over time among couples coping with prostate cancer.

PubMed

Song, Lixin; Rini, Christine; Ellis, Katrina R; Northouse, Laurel L

2016-09-01

Little research has examined how prostate cancer patients' and their spouses' appraisals of illness and quality of life (QOL) interact with one another. This study examined the interdependent relationships between their appraisals of illness and QOL and if their perceived dyadic communication mediated these relationships. We used the Actor-Partner Interdependence Mediation Model (APIMeM) approach to conduct a secondary analysis of longitudinal data from 124 prostate cancer patient-spouse dyads. We examined actor effects (each person's influence on his/her own outcomes) and partner effects (each person's influence on his/her partner's outcomes). Appraisals of illness, perceived dyadic communication, and QOL were measured using Appraisal of Illness Scale, Lewis Mutuality and Interpersonal Sensitivity Scale, and Functional Assessment of Chronic Illness Therapy General Scale, respectively. Analyses controlled for effects of prostate cancer symptoms and demographic factors. Among actor effects, spouses with more negative appraisals at baseline perceived worse dyadic communication 4 months later (p < .05) and worse QOL 8 months later (p < .001). Patients and spouses who perceived more dyadic communication at 4 months had better QOL at 8 months (p < .01). Among partner effects, there was only weak evidence for an association between patient perceived dyadic communication at 4 months and better spouse QOL at 8 months of follow-up (p = .05). No mediation effects were found. Patients' and spouses' appraisals of the illness and their dyadic communication were associated with their long-term QOL. Interventions that reduce negative appraisals of illness and promote dyadic communication may improve QOL for both patients with prostate cancer and their spouses.

Rurality and ethnicity in adolescent physical illness: are children of the growing rural Latino population at excess health risk?

PubMed

Wickrama, K A S; Elder, Glen H; Todd Abraham, W

2007-01-01

This study's objectives are to: investigate potential additive and multiplicative influences of rurality and race/ethnicity on chronic physical illness in a nationally representative sample of youth; and examine intra-Latino processes using a Latino sub-sample. Specifically, we examine how rurality and individual psychosocial processes reflected by acculturation proxies (generational status and use of the English language at home) link to chronic physical illness of Latino youth. Finally, we examine whether these associations and the levels of chronic illness differ across Latino subgroups. Logistic-normal (binomial) modeling analyses examine multilevel influences on physical health using longitudinal data from a nationally representative sample (N = 13,905) of white, African American, Latino, Asian, and Native American adolescents between the ages of 12 and 19 participating in the National Longitudinal Study of Adolescent Health. Prevalence rates of certain chronic illnesses (obesity, asthma, and high cholesterol) among Latino adolescents exceed rates for the same illnesses among white adolescents. Comparisons between rural and non-rural youth reveal a rurality disadvantage in terms of any chronic illness likelihood among Latino, Asian, and Native American youth not evident among whites or African Americans. Among Latino youth (N = 2,505), Mexican Americans show lower health risk for any chronic illness compared to other Latino groups. However, third generation Latinos and those who primarily speak English at home experience higher risk for any chronic illness than do those of first or second generation status, with amplification of the risk linked to English use at home among Latino youth living in rural areas.

Do everyday problems of people with chronic illness interfere with their disease management?

PubMed

van Houtum, Lieke; Rijken, Mieke; Groenewegen, Peter

2015-10-01

Being chronically ill is a continuous process of balancing the demands of the illness and the demands of everyday life. Understanding how everyday life affects self-management might help to provide better professional support. However, little attention has been paid to the influence of everyday life on self-management. The purpose of this study is to examine to what extent problems in everyday life interfere with the self-management behaviour of people with chronic illness, i.e. their ability to manage their illness. To estimate the effects of having everyday problems on self-management, cross-sectional linear regression analyses with propensity score matching were conducted. Data was used from 1731 patients with chronic disease(s) who participated in a nationwide Dutch panel-study. One third of people with chronic illness encounter basic (e.g. financial, housing, employment) or social (e.g. partner, children, sexual or leisure) problems in their daily life. Younger people, people with poor health and people with physical limitations are more likely to have everyday problems. Experiencing basic problems is related to less active coping behaviour, while experiencing social problems is related to lower levels of symptom management and less active coping behaviour. The extent of everyday problems interfering with self-management of people with chronic illness depends on the type of everyday problems encountered, as well as on the type of self-management activities at stake. Healthcare providers should pay attention to the life context of people with chronic illness during consultations, as patients' ability to manage their illness is related to it.

Impact of Growing Up with a Chronically Ill Sibling on Well Siblings' Late Adolescent Functioning

PubMed Central

Fleary, Sasha A.; Heffer, Robert W.

2013-01-01

The purpose of this study was to explore the continuing impact of growing up with an ill sibling on well siblings' late adolescent functioning. Forty late adolescents (M age = 18.78, SD = 0.83), who identified themselves as growing up with an ill sibling, completed a semistructured interview, demographic questionnaire, Personality Assessment Screener, and My Feelings and Concerns Sibling Questionnaire. Participants reported clinically significant problems on some PAS scales, and gender differences were found for acting out and alienation. Significant relationships were reported for communication and social withdrawal and alienation. Both positive and negative themes about the experience were elicited from the responses in the semistructured interview. This study provides evidence for some lingering negative effects of growing up with an ill sibling on well siblings' late adolescent functioning. Additionally, evidence for siblings' development of positive characteristics that may act as protective variables as they face the stressors of late adolescence was also highlighted. PMID:24959574

Improving Communication About Serious Illness

ClinicalTrials.gov

2017-01-07

Critical Illness; Chronic Disease; Terminal Care; Palliative Care; Communication; Advance Care Planning; Neoplasm Metastasis; Lung Neoplasms; Pulmonary Disease, Chronic Obstructive; Heart Failure; End Stage Liver Disease; Kidney Failure, Chronic

Family Approaches to the Chronically Mentally Ill: Implications for Rural Areas.

ERIC Educational Resources Information Center

Kilpatrick, Allie C.; Kilpatrick, Ebb G.

The decade of the 1980s has witnessed a rebirth of concern regarding the chronically mentally ill. The way mental health professionals view families of the chronically mentally ill has changed dramatically, largely because of the emergence of the biological theories of causation for schizophrenia. Innovative programs for families have included…

78 FR 6404 - Agency Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-01-30

...: Approximately 25 percent military troops who were deployed in the first Persian Gulf War returned with... of Chronic Gastrointestinal Illness in Persian Gulf Veterans) Activities Under OMB Review AGENCY.... Survey of Chronic Gastrointestinal Illness in Persian Gulf Veterans, VA Form 10-21092a. b. VA Research...

Evaluation of a technology-enhanced integrated care model for frail older persons: protocol of the SPEC study, a stepped-wedge cluster randomized trial in nursing homes.

PubMed

Kim, Hongsoo; Park, Yeon-Hwan; Jung, Young-Il; Choi, Hyoungshim; Lee, Seyune; Kim, Gi-Soo; Yang, Dong-Wook; Paik, Myunghee Cho; Lee, Tae-Jin

2017-04-18

Limited evidence exists on the effectiveness of the chronic care model for people with multimorbidity. This study aims to evaluate the effectiveness of an information and communication technology- (ICT-)enhanced integrated care model, called Systems for Person-centered Elder Care (SPEC), for frail older adults at nursing homes. SPEC is a prospective stepped-wedge cluster randomized trial conducted at 10 nursing homes in South Korea. Residents aged 65 or older meeting the inclusion/exclusion criteria in all the homes are eligible to participate. The multifaceted SPEC intervention, a geriatric care model guided by the chronic care model, consists of five components: comprehensive geriatric assessment for need/risk profiling, individual need-based care planning, interdisciplinary case conferences, person-centered care coordination, and a cloud-based information and communications technology (ICT) tool supporting the intervention process. The primary outcome is quality of care for older residents using a composite measure of quality indicators from the interRAI LTCF assessment system. Outcome assessors and data analysts will be blinded to group assignment. Secondary outcomes include quality of life, healthcare utilization, and cost. Process evaluation will be also conducted. This study is expected to provide important new evidence on the effectiveness, cost-effectiveness, and implementation process of an ICT-supported chronic care model for older persons with multiple chronic illnesses. The SPEC intervention is also unique as the first registered trial implementing an integrated care model using technology to promote person-centered care for frail older nursing home residents in South Korea, where formal LTC was recently introduced. ISRCTN11972147.

Women's self-management of chronic illnesses in the context of caregiving: a grounded theory study.

PubMed

Martinez-Marcos, Mercedes; De la Cuesta-Benjumea, Carmen

2015-06-01

Uncover how women self-manage their own chronic illness while taking care of a dependent relative. International policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Self-management is a crucial part of this care. Caregivers are more prone to have chronic illness than non-caregivers. They are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their families. Caregivers articulate strategies to enable them to focus their energy on caring. Qualitative study using constructivist grounded theory. Thirty-nine women caregivers with a chronic illness participated in the study. Twenty-three semi-structured interviews and two focus groups were carried out between April 2010-December 2011. Data were analysed using grounded theory procedures. Self-management helps women caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Women caregivers integrate effectively and creatively the management of their chronic illnesses within the complexities of family care. This renders their health needs invisible and reaffirms them as capable caregivers. Identifying self-management strategies of women caregivers allow health professionals to acknowledge and reinforce effective self-care measures and to deter those that are ineffective and lessen their quality of life. © 2014 John Wiley & Sons Ltd.

Sickness absence management: encouraging attendance or 'risk-taking' presenteeism in employees with chronic illness?

PubMed

Munir, Fehmidah; Yarker, Joanna; Haslam, Cheryl

2008-01-01

To investigate the organizational perspectives on the effectiveness of their attendance management policies for chronically ill employees. A mixed-method approach was employed involving questionnaire survey with employees and in-depth interviews with key stakeholders of the organizational policies. Participants reported that attendance management polices and the point at which systems were triggered, posed problems for employees managing chronic illness. These systems presented risk to health: employees were more likely to turn up for work despite feeling unwell (presenteeism) to avoid a disciplinary situation but absence-related support was only provided once illness progressed to long-term sick leave. Attendance management polices also raised ethical concerns for 'forced' illness disclosure and immense pressures on line managers to manage attendance. Participants felt their current attendance management polices were unfavourable toward those managing a chronic illness. The policies heavily focused on attendance despite illness and on providing return to work support following long-term sick leave. Drawing on the results, the authors conclude that attendance management should promote job retention rather than merely prevent absence per se. They outline areas of improvement in the attendance management of employees with chronic illness.

How Clinicians Feel about Working with Spouses of the Chronically Ill.

PubMed

Ingram, Douglas H

2015-09-01

Clinicians who provide psychotherapy to spouses or partners of the chronically ill were solicited through listserves of psychodynamic and other organizations. The current report excluded those therapists working with spouses of dementia patients. Interviews were conducted with clinicians who responded. The interviews highlight the challenges commonly encountered by psychotherapeutic work with this cohort of therapy patients. A comparison is drawn that shows both overlap and distinctions between the experiences of those therapists engaging with spouses of chronically ill patients without a dementing process and those working with spouses of chronically ill patients who do suffer from a dementing process.

Extending the P4P agenda, part 2: how Medicare can reduce waste and improve the care of the chronically ill.

PubMed

Wennberg, John E; Fisher, Elliott S; Skinner, Jonathan S; Bronner, Kristen K

2007-01-01

The care of Americans with severe chronic illnesses is disorganized, unnecessarily costly, and undisciplined by sound clinical science. The federal government should invest in a crash program to improve the scientific basis of managing chronic illness, and the Centers for Medicare and Medicaid Services (CMS) should extend its pay-for-performance (P4P) agenda to ensure that within ten years all Americans with severe chronic illnesses have access to accountable health care organizations providing evidence-based prospective care. This paper recommends a strategy for achieving this goal.

Are People Healthier If Their Partners Are More Optimistic? The Dyadic Effect of Optimism On Health Among Older Adults

PubMed Central

Kim, Eric S.; Chopik, William J.; Smith, Jacqui

2015-01-01

Objective Optimism has been linked with an array of positive health outcomes at the individual level. However, researchers have not examined how a spouse's optimism might impact an individual's health. We hypothesized that being optimistic (and having an optimistic spouse) would both be associated with better health. Methods Participants were 3,940 adults (1,970 couples) from the Health and Retirement Study, a nationally representative panel study of American adults over the age of 50. Participants were tracked for four years and outcomes included: physical functioning, self-rated health, and number of chronic illnesses. We analyzed the dyadic data using the actor partner interdependence model. Results After controlling for several psychological and demographic factors, a person's own optimism and their spouse's optimism predicted better self-rated health and physical functioning (b's = .08-.25, p's < .01). More optimistic people also reported better physical functioning (b = −.11, p < .01) and fewer chronic illnesses (b = −.01, p < .05) over time. Further, having an optimistic spouse uniquely predicted better physical functioning (b = −.09, p < .01) and fewer chronic illnesses (b = −.01, p < .05) over time. The strength of the relationship between optimism and health did not diminish over time. Conclusions Being optimistic and having an optimistic spouse were both associated with better health. Examining partner effects is important because such analyses reveal the unique role that spouses play in promoting health. These findings may have important implications for future health interventions. PMID:24840138

How do macro-level contexts and policies affect the employment chances of chronically ill and disabled people? Part II: The impact of active and passive labor market policies.

PubMed

Holland, Paula; Nylén, Lotta; Thielen, Karsten; van der Wel, Kjetil A; Chen, Wen-Hao; Barr, Ben; Burström, Bo; Diderichsen, Finn; Andersen, Per Kragh; Dahl, Espen; Uppal, Sharanjit; Clayton, Stephen; Whitehead, Margaret

2011-01-01

The authors investigate three hypotheses on the influence of labor market deregulation, decommodification, and investment in active labor market policies on the employment of chronically ill and disabled people. The study explores the interaction between employment, chronic illness, and educational level for men and women in Canada, Denmark, Norway, Sweden, and the United Kingdom, countries with advanced social welfare systems and universal health care but with varying types of active and passive labor market policies. People with chronic illness were found to fare better in employment terms in the Nordic countries than in Canada or the United Kingdom. Their employment chances also varied by educational level and country. The employment impact of having both chronic illness and low education was not just additive but synergistic. This amplification was strongest for British men and women, Norwegian men, and Danish women. Hypotheses on the disincentive effects of tighter employment regulation or more generous welfare benefits were not supported. The hypothesis that greater investments in active labor market policies may improve the employment of chronically ill people was partially supported. Attention must be paid to the differential impact of macro-level policies on the labor market participation of chronically ill and disabled people with low education, a group facing multiple barriers to gaining employment.

The association of an inability to form and maintain close relationships due to a medical condition with anxiety and depressive disorders.

PubMed

Simning, Adam; Seplaki, Christopher L; Conwell, Yeates

2016-03-15

While low social support is a risk factor for mental illness, anxiety and depression's relationship with social impairment specifically resulting from a medical condition is poorly understood. We hypothesize that when a medical illness makes it difficult for people to form and maintain close relationships with others, they will be at increased risk for anxiety and depression. Two nationally representative surveys, the National Comorbidity Survey-Replication and National Latino and Asian American Study, included 6805 adults with at least one medical illness and information on social impairment attributed to a medical condition. The Composite International Diagnostic Interview evaluated a 12-month history of anxiety and depressive disorders. 8.2% of our sample had at least moderate difficulty in forming and maintaining close relationships due to a medical condition. In bivariate analyses, younger age, Latino ethnicity, less education, worse financial status, more chronic illnesses, physical health and discomfort, and problems with mobility, home management, and self-care were associated with this social impairment. In multivariable analyses accounting for possible confounders, there was a dose-dependent relationship between social impairment and the prevalence of anxiety and depression. Data are cross-sectional and our analyses are therefore unable to determine cause-and-effect relationships. Among adults with one or more medical conditions, social impairment attributed to medical illness was associated with a significantly greater odds of anxiety and depression. Further clarification of this relationship could inform more targeted, personalized interventions to prevent and/or alleviate mental illness in those with chronic medical conditions. Copyright © 2016 Elsevier B.V. All rights reserved.

Using information technology to improve the management of chronic disease.

PubMed

Celler, Branko G; Lovell, Nigel H; Basilakis, Jim

2003-09-01

Information and communications technology (ICT) is increasingly being used in management of chronic illness to facilitate shared services (virtual health networks and electronic health records), knowledge management (care rules and protocols, scheduling, information directories), as well as consumer-based health education and evidence-based clinical protocols. Common applications of ICT include home monitoring of vital signs for patients with chronic disease, as well as replacing home visits by nurses in person with telemedicine videophone consultations. A patient-managed Home Telecare System with integrated clinical signs monitoring, automated scheduling and medication reminders, as well as access to health education and daily logs, is presented as an example of ICT use for chronic disease self-management. A clinical case study demonstrates how early identification of adverse trends in clinical signs recorded in the home can either avoid hospital readmission or reduce the length of hospital stay.

Living with hypertrophic cardiomyopathy.

PubMed

Subasic, Kim

2013-12-01

The purpose of this study is to provide an insider's account of what it is like to live with hypertrophic cardiomyopathy (HCM), a genetic cardiovascular illness that carries the risk for sudden cardiac death. This study aims to reveal how HCM impacts the family and guides the decision whether or not to pursue genetic testing, how the physical limitations associated with HCM alter being-in-the-world, and how HCM alters social relationships. Fifteen adults with HCM were recruited for a longitudinal, phenomenological, qualitative study through purposive sampling and word of mouth. A total of 45 interviews were conducted by the researcher at a time and place designated by the participant between August 2011 and January 2012. The first interview with each participant was conducted in person. While efforts were made to conduct all interviews in person, a total of three interviews were conducted by telephone as requested by three participants due to scheduling conflicts. Through methods of interpretive phenomenology, three audio-recorded, semistructured interviews occurred over the course of 3 months. Detailed narratives were solicited and transcribed verbatim. Methodological and analytical documentation was supported with the identification of key phrases, similar experiences, themes, and documentation of the rationale for decisions throughout the research process. Participation in genetic testing carries a multitude of personal, familial, financial, and emotional implications. The results of a genetic test elicited an emotional response regardless of whether the results were negative, positive, or inconclusive. Living with a potentially life-threatening illness altered identity, disrupted social relationships, and generated chronic fear and uncertainty. A new normal was re-ordered or transformed by the demands and limitations posed by HCM, and by the person's concerns, priorities, and the meaning of the illness. Results from this study underscore the need for healthcare professionals to learn more about HCM and to conduct screenings that will facilitate a prompt and accurate diagnosis. In doing so, the risk for sudden cardiac death may be averted. There is a need to educate and to advocate for genetic testing of HCM. It is necessary for healthcare providers to move beyond their biomedical understanding of genetic illness and to address the lived experience of the illness, how the illness impacts the family, and the multifaceted concerns of people who have a genetic illness as well as the concerns of their family members. © 2013 Sigma Theta Tau International.

Effects of Parental Chronic Illness on Children's Psychosocial and Educational Functioning: A Literature Review

ERIC Educational Resources Information Center

Chen, Cliff Yung-Chi

2017-01-01

A good number of children grow up in households where a parent has been diagnosed with medical chronic illness. Parental chronic illness is stressful for children and adolescents and may have some potential impact on children's adjustment and functioning. Some emerging research conducted in the fields of medicine, nursing, and family studies has…

Psychosocial Experiences of Chronic Illness in Individuals with an Intellectual Disability: A Systematic Review of the Literature

ERIC Educational Resources Information Center

Flynn, Samantha; Hulbert-Williams, Nicholas; Hulbert-Williams, Lee; Bramwell, Ros

2015-01-01

Background: Increased life expectancy has led to an increase in diagnoses of chronic illness in people with an intellectual disability; despite this increase, research about the psychological impact is rare. This review explored the psychosocial experiences of chronic illness in adults with an intellectual disability, revealing potential…

Life after the Shock! The Impact on Families of Caring for Young Children with Chronic Illness

ERIC Educational Resources Information Center

Ashton, Jean

2004-01-01

The stresses experienced by most families include limitations on time, conditions of employment, financial burdens and sibling rivalry. For the families of a child with a chronic illness, these stresses are often compounded, making family functioning problematic. Chronic illness is marked by permanency and the need for ongoing vigilance with…

"Seeing a doctor is just like having a date": a qualitative study on doctor shopping among overactive bladder patients in Hong Kong

PubMed Central

2014-01-01

Background Although having a regular primary care provider is noted to be beneficial to health, doctor shopping has been documented as a common treatment seeking behavior among chronically ill patients in different countries. However, little research has been conducted into the reasons behind doctor shopping behavior among patients with overactive bladder, and even less into how this behavior relates to these patients’ illness and social experiences, perceptions, and cultural practices. Therefore, this study examines overactive bladder patients to investigate the reasons behind doctor shopping behavior. Methods My study takes a qualitative approach, conducting 30 semi-structured individual interviews, with 30 overactive bladder patients in Hong Kong. Results My study found six primary themes that influenced doctor shopping behavior: lack of perceived need, convenience, work-provided medical insurance, unpleasant experiences with doctors, searching for a match doctor, and switching between biomedicine and traditional Chinese medicine. Besides the perceptual factors, participants’ social environment, illness experiences, personal cultural preference, and cultural beliefs also intertwined to generate their doctor shopping behavior. Due to the low perceived need for a regular personal primary care physician, environmental factors such as time, locational convenience, and work-provided medical insurance became decisive in doctor shopping behavior. Patients’ unpleasant illness experiences, stemming from a lack of understanding among many primary care doctors about overactive bladder, contributed to participants’ sense of mismatch with these doctors, which induced them to shop for another doctor. Conclusions Overactive bladder is a chronic bladder condition with very limited treatment outcome. Although patients with overactive bladder often require specialty urology treatment, it is usually beneficial for the patients to receive continuous, coordinated, comprehensive, and patient-centered support from their primary care providers. Primary care doctors’ understanding on patients with overactive bladder with empathetic attitudes is important to reduce the motivations of doctor shopping behavior among these patients. PMID:24502367

Psychological factors in the irritable bowel syndrome.

PubMed Central

Creed, F; Guthrie, E

1987-01-01

This paper reviews recent psychological studies of patients with the irritable bowel syndrome (IBS) or 'functional abdominal pain'. Many studies have used unreliable or invalid methods of assessment and some have confused personality with treatable psychiatric illness. Reliable and valid measures have indicated that 40-50% of patients with recently diagnosed functional abdominal pain have demonstrable psychiatric illness; these patients have a worse prognosis than those who are psychologically normal. When psychiatric disorder is diagnosed in a patient with IBS there are three possibilities: (1) The patient may have developed abdominal and psychiatric symptoms simultaneously in which case treatment of the latter may relieve the bowel symptoms. (2) Psychiatric disorder may precipitate increased concern about bowel symptoms, and consequent attendance at the gastroenterology clinic, of those with chronic mild symptoms. In this case it is illness behaviour, rather than abdominal symptoms, that is caused by the anxiety/depression. (3) Those with chronic neurotic symptoms as part of their personality must be screened for organic disease if they have a fresh onset of bowel symptoms; but they are at high risk of becoming persistent clinic attenders. Further research is needed to clarify when psychological abnormalities play a role in the aetiology of IBS and when they are coincidental, but lead to illness behaviour. The role of psychological factors in the aetiology of the irritable bowel syndrome (IBS) is far from clear, but a review of the literature suggests that some consistent patterns are emerging in spite of methodological problems. There have been three major defects with studies that have linked IBS with neurotic symptomatology. First, the measurement of psychological factors has generally been imprecise. Second, most studies have considered IBS patients as a single group, without making allowance for differing symptom patterns. Third, conclusions have been drawn about hospital samples and extrapolated to all IBS subjects, without taking account of factors which affect consulting behaviour. Most studies have been concerned with psychological factors so these will be considered in most detail. PMID:3315878

"Seeing a doctor is just like having a date": a qualitative study on doctor shopping among overactive bladder patients in Hong Kong.

PubMed

Siu, Judy Yuen-Man

2014-02-06

Although having a regular primary care provider is noted to be beneficial to health, doctor shopping has been documented as a common treatment seeking behavior among chronically ill patients in different countries. However, little research has been conducted into the reasons behind doctor shopping behavior among patients with overactive bladder, and even less into how this behavior relates to these patients' illness and social experiences, perceptions, and cultural practices. Therefore, this study examines overactive bladder patients to investigate the reasons behind doctor shopping behavior. My study takes a qualitative approach, conducting 30 semi-structured individual interviews, with 30 overactive bladder patients in Hong Kong. My study found six primary themes that influenced doctor shopping behavior: lack of perceived need, convenience, work-provided medical insurance, unpleasant experiences with doctors, searching for a match doctor, and switching between biomedicine and traditional Chinese medicine. Besides the perceptual factors, participants' social environment, illness experiences, personal cultural preference, and cultural beliefs also intertwined to generate their doctor shopping behavior. Due to the low perceived need for a regular personal primary care physician, environmental factors such as time, locational convenience, and work-provided medical insurance became decisive in doctor shopping behavior. Patients' unpleasant illness experiences, stemming from a lack of understanding among many primary care doctors about overactive bladder, contributed to participants' sense of mismatch with these doctors, which induced them to shop for another doctor. Overactive bladder is a chronic bladder condition with very limited treatment outcome. Although patients with overactive bladder often require specialty urology treatment, it is usually beneficial for the patients to receive continuous, coordinated, comprehensive, and patient-centered support from their primary care providers. Primary care doctors' understanding on patients with overactive bladder with empathetic attitudes is important to reduce the motivations of doctor shopping behavior among these patients.

Chronic Illness & Mental Health

MedlinePlus

... chronic medical conditions have a higher risk of depression. The same factors that increase risk of depression ... a chronic or long-term illness. People with depression are at higher risk for other medical conditions. ...

Online self-management interventions for chronically ill patients: cognitive impairment and technology issues.

PubMed

Archer, Norm; Keshavjee, Karim; Demers, Catherine; Lee, Ryan

2014-04-01

As the fraction of the population with chronic diseases continues to grow, methods and/or technologies must be found to help the chronically ill to take more responsibility to self-manage their illnesses. Internet based and/or mobile support for disease self-management interventions have often proved effective, but patients with chronic illnesses may have co-occurring cognitive impairment, making it more difficult for them to cope with technologies. Many older patients are also not familiar with technologies or they may have cognitive disabilities or dementia that reduce their ability to self-manage their healthcare. On-line solutions to the needs of chronically ill patients must be investigated and acted upon with care in an integrated manner, since resources invested in these solutions will be lost if patients do not adopt and continue to use them successfully. To review the capabilities of online and mobile support for self-management of chronic illnesses, and the impacts that age and disease-related issues have on these interventions, including cognitive impairment and lack of access or familiarity with Internet or mobile technologies. This study includes a review of the co-occurrence of cognitive impairment with chronic diseases, and discusses how cognitive impairment, dyadic caregiver patient support, patient efficacy with technology, and smart home technologies can impact the effectiveness and sustainability of online support for disease self-management. Disease self-management interventions (SMIs) using online patient centered support can often enable patients to manage their own chronic illnesses. However, our findings show that cognitive impairment often co-occurs in patients with chronic disease. This, along with age-related increases in multiple chronic illnesses and lack of technology efficacy, can be obstacles to Internet and mobile support for chronic disease self-management. Patients with chronic diseases may have greater than expected difficulties in using Internet and mobile technologies for disease self-management, often due to cognitive impairment or unfamiliarity with technology. Approaches to dealing with such barriers include suitable integration of solutions involving patient-caregiver dyads, better design of online applications, careful attention to technology adoption and sustainability, and smart home technologies. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

A literature review on self-care of chronic illness: definition, assessment and related outcomes.

PubMed

Ausili, Davide; Masotto, Matteo; Dall'Ora, Chiara; Salvini, Lorena; Di Mauro, Stefania

2014-01-01

Chronic illnesses care represents a challenging issue for people well-being and future health systems' sustainability. Promotion of self-care is considered a key point for chronically ill patients' care. The aim of this literature was to explore: how self-care of chronic illness has been theoretically defined; how self-care can be assessed in clinical and research settings; what associations exist between self-care and health outcomes of chronically ill patients. A wide range of definitions and terminologies related to self-care of chronic illness has been found in the literature. Although some common elements useful to explain the concept of self-care have been identified, the physical, cognitive, emotional and social processes underlying self-care remain controversial and poorly defined. Valid and reliable disease-specific assessment tools have been developed and used in a growing number of studies; however, the lack of utilization of standardized instruments in clinical practice has been referred by many authors. Significant correlations between self-care of chronic illness and outcome measures e.g. general health status, quality of life and healthcare costs, are reported by a limited number of studies. Supporting patient self-care is recognized as a crucial factor in chronic illness care. A deeper analysis of variables and processes influencing self-care could help for a full description of the phenomenon. A systematic evaluation of self-care in health professionals' everyday clinical practice is strongly recommended. The development of general non-disease-specific assessment tools could facilitate the evaluation of complex patients, especially those with multiple co-morbidities. Although self-care has been recognized as a vital intermediate outcome, further large-scale studies clarifying the association between self-care and patients' and health systems' outcomes are needed.

Attitudes toward mental illness in adults by mental illness-related factors and chronic disease status: 2007 and 2009 Behavioral Risk Factor Surveillance System.

PubMed

Kobau, Rosemarie; Zack, Matthew M

2013-11-01

We examined how attitudes toward mental illness treatment and its course differ by serious psychological distress, mental illness treatment, chronic disease, and sociodemographic factors using representative state-based data. Using data from jurisdictions supporting the Behavioral Risk Factor Surveillance System's Mental Illness and Stigma Module (35 states, the District of Columbia, and Puerto Rico), we compared adjusted proportions of adults agreeing that "Treatment can help people with mental illness lead normal lives" (treatment effectiveness) and that "People are generally caring and sympathetic to people with mental illness" (supportive environment), by demographic characteristics, serious psychological distress, chronic disease status, and mental illness treatment. Attitudes regarding treatment effectiveness and a supportive environment for people with mental illness varied within and between groups. Most adults receiving mental illness treatment agreed that treatment is effective. Fewer adults with serious psychological distress than those without such distress agreed that treatment is effective. Fewer of those receiving treatment, those with psychological distress, and those with chronic disease perceived the environment as supportive. These data can be used to target interventions for population subgroups with less favorable attitudes and for surveillance.

Quality of helping behaviours of members of the public towards a person with a mental illness: a descriptive analysis of data from an Australian national survey

PubMed Central

2014-01-01

Background Courses such as Mental Health First Aid equip members of the public to perform appropriate helping behaviours towards people experiencing a mental illness or mental health crisis. However, studies investigating the general public’s knowledge and skills in relation to assisting a person with a mental illness are rare. This study assesses the quality of mental health first aid responses by members of the Australian public using data from a national survey. Methods Participants in a national survey of mental health literacy were assigned one of six vignettes (depression, depression with suicidal thoughts, early schizophrenia, chronic schizophrenia, social phobia or post-traumatic stress disorder) and asked an open-ended question about how they would help the character in the vignette. The 6,019 respondents were also asked if and how they had helped a person in real life with a similar problem. Responses to these questions were scored using a system based on an action plan developed from expert consensus guidelines on mental health first aid. Results The quality of responses overall was poor, with participants scoring an average of 2 out of 12. The most commonly reported actions for both questions were listening to the person, providing support and information and encouraging them to seek appropriate professional help. Actions such as assessing and assisting with crisis were rarely mentioned, even for the depression with suicidal thoughts vignette. Conclusions The quality of the Australian public’s mental health first aid knowledge and skills requires substantial improvement. Particular attention should be given to helping people recognise that anxiety disorders such as social phobia require professional help and to improving responses to a suicidal person. PMID:24438434

Giving patients responsibility or fostering mutual response-ability: family physicians' constructions of effective chronic illness management.

PubMed

Thille, Patricia H; Russell, Grant M

2010-10-01

Current visions of family medicine and models of chronic illness management integrate evidence-based medicine with collaborative, patient-centered care, despite critiques that these constructs conflict with each other. With this potential conflict in mind, we applied a critical discursive psychology methodology to present discursive patterns articulated by 13 family physicians in Ontario, Canada, regarding care of patients living with multiple chronic illnesses. Physicians constructed competing versions of the terms "effective chronic illness management" and "patient involvement." One construction integrated individual responsibility for health with primacy of "evidence," resulting in a conceptualization consistent with paternalistic care. The second constructed effective care as involving active partnership of physician and patient, implying a need to foster the ability of both practitioners and patients to respond to complex challenges as they arose. The former pattern is inconsistent with visions of family medicine and chronic illness management, whereas the latter embodies it.

"What is the work of Recovery Oriented Practice? A systematic literature review".

PubMed

Chester, Polly; Ehrlich, Carolyn; Warburton, Loretta; Baker, David; Kendall, Elizabeth; Crompton, David

2016-08-01

Concepts of personal and social recovery in mental illness are constantly evolving because the journey is fluid and subject to change over time. Dynamic interactions between the complexities of human nature and mental illness create ever-altering landscapes of perplexity. The acknowledged ebb and flow of recovery in the presence of chronic and serious mental illness requires health professionals to provide a flexible suite of care, delivered through skills and methods that are responsive and meaningful to the recipient. We conducted a systematic search for qualitative literature that articulated the work of personally-supportive recovery-oriented practice (ROP) to determine the specific components of recovery-supportive work. Twenty-one articles were identified as meeting the inclusion criteria and were synthesized using a coding framework derived from Normalization Process Theory. We identified three kinds of recovery-supportive work required from health professionals: alleviating stigma, delivering effective recovery-supportive responses in the presence of complex health and social situations and managing challenges associated with the work of ROP. We discuss the resources needed for ROP and the barriers that inhibit health professionals' engagement in this work. By elucidating the work of ROP, we highlighted a disparity between health professionals' aspirations and achievements. These revelations could inform service delivery in order to better support consumer recovery in serious mental illness. © 2016 Australian College of Mental Health Nurses Inc.

[Empowerment and power: their relationship in the proces of caring for the chronically ill in primary care].

PubMed

Riba Bellera, Lydia; Boixadera Vendrell, Mireia; Buendía Surroca, Carmen; Martorell Poveda, Maria Antònia; Piñeiro Méndez, Pilar; Zamora Sánchez, Juan José

2014-06-01

The concepts of "power" and "empowerment" are used in various disciplines, both political and social. Now are these terms frequently in the field of health. Our goal is to know its meaning as a synonym of expressions: "energy", "force", "domain", "vigour", "power", "capacity", "authority" and "control", which have been always within our practice nurse's own lexicon. Semantically analyzing them will help us in the understanding of its nuance. The literature review facilitates their understanding and allows us to link these words within the management of care. In this way we can propose diagnoses, interventions and outcomes specifically related to these concepts, which will help us optimize the efficiency in the management of care plans. The purpose of various collective nurses from different institutions is that the person is able to not generate dependencies and have the option of choosing your own lifestyle according to their culture and environment, independently or with the help. Generate knowledge is to generate power. The person should be educated and informed, to be expert and active and taking action to help control and minimize the progression of your health problem chronic and its possible complications. We are in the process of reformulation of the health system, whether it is private or public, and is necessary to know the power of the various actors involved in the management of the care to us. Each of these main actors--person ill, family/caregiver or nurse--has to know what is his role in this process.

Health status: does it predict choice in further education?

PubMed Central

Koivusilta, L; Rimpelä, A; Rimpelä, M

1995-01-01

STUDY OBJECTIVE--To study the significance of a young person's health to his or her choice of further education at age 16. DESIGN--A cross sectional population survey SETTING--The whole of Finland. PARTICIPANTS--A representative sample of 2977 Finnish 16 year olds. The response rate was 83%. MEASUREMENTS AND MAIN RESULTS--The three outcome variables reflected successive steps on the way to educational success: school attendance after the completion of compulsory schooling, the type of school, and school achievement for those at school. Continuing their education and choosing upper secondary school were most typical of young people from upper social classes. Female gender and living with both parents increased the probability of choosing to go on to upper secondary school. Over and above these background variables, some health factors had additional explanatory power. Continuing their education, attending upper secondary schools, and good achievement were typical of those who considered their health to be good. Chronically ill adolescents were more likely to continue their education than the healthy ones. CONCLUSIONS--School imposes great demands on young people, thus revealing differences in personal health resources. Adaptation to the norms of a society in which education is highly valued is related to satisfying health status. In a welfare state that offers equal educational opportunities for everyone, however, chronically ill adolescents can add to their resources for coping through schooling. Health related selection thus works differently for various indicators of health and in various kinds of societies. Social class differences in health in the future may be more dependent on personally experienced health problems than on medically diagnosed diseases. PMID:7798039

[Chronicity problems of the ambulatory patient].

PubMed

Schneider, P B; Carron, R

1980-01-01

This report is comprised of three parts: the first two parts give a very brief summary of two research projects carried out on groups of chronic, psychiatric out-patients within the framework of the University Psychiatric Policlinic of Lausanne. The third part is an attempt at discerning the fundamental, psychological aspects common to almost all chronic patients as well as the features typical of the relationship between the doctor and his chronic patient. The first piece of research consists of an epidemiological, clinical and catamnestic study of a group of 309 patients. Ten years after the original sample group was selected, 82 patients are still being treated. Various signs help to bring into focus the picture of the so-called chronic patient. They also reveal that the doctor-patient relationship deviated rather rapidly starting right from the first consultation towards a relationship described under the title maintenance service relationship. Furthermore it can be seen that in those groups studied, it was not possible to discern which patients would become seriously chronic at the time when they were first taken in charge. The object of the second study was the medical prescriptions given to a group of 65 chronic patients in treatment from 1965 through 1977. As can be expected in a public service with its frequent change of physicians, the patients were followed by several, not to say numerous, physicians. Regarding the different reasons causing a change of prescription, it is interesting to note that the psychic state of the patient played a much more important role here than the change of the treating physician. Thus the observation of chronic, somatic patients is very useful for the psychological understanding of chronicity. There is, in fact, no concordance between the condition of a person suffering from a chronic, physical illness and a person who is psychologically chronic. A description is given of those factors related to personality structure whose interrelation--defined as a basic psychodynamic triad--is necessary for psychological chronicity to set in. Furthermore, the reflections underline the fact that a better understanding psychological chronicity is also very closely subordinated to increasing our knowledge of the doctor-patient relationship.

Consequences of caring for a child with a chronic disease: Employment and leisure time of parents.

PubMed

Hatzmann, Janneke; Peek, Niels; Heymans, Hugo; Maurice-Stam, Heleen; Grootenhuis, Martha

2014-12-01

Chronically ill children require several hours of additional care per day compared to healthy children. As parents provide most of this care, they have to incorporate it into their daily schedule, which implies a reduction in time for other activities. The study aimed to assess the effect of having a chronically ill child on parental employment and parental leisure activity time, and to explore the role of demographic, social, and disease-related variables in relation to employment and leisure activities. Outcomes of 576 parents of chronically ill children and 441 parents of healthy school children were analyzed with multivariate regression. Having a chronically ill child was negatively related with family employment, maternal labor force participation, and leisure activity time. Use of child care was positively related to family and maternal employment of the total group of parents. Within parents of chronically ill children, most important finding was the negative relation of dependency of the child on daily care and low parental educational level with family and maternal employment. In conclusion, parents of chronically ill children, mothers in particular, are disadvantaged in society probably due to the challenge of combining child care with work and leisure time. © The Author(s) 2013.

A center for self-management of chronic illnesses in diverse groups.

PubMed

Inouye, Jillian; Boland, Mary G; Nigg, Claudio R; Sullivan, Kathleen; Leake, Anne; Mark, Debra; Albright, Cheryl L

2011-01-01

Prevention and successful treatment of chronic disease require a scientific understanding of the impacts and interactions of ethnicity, culture, and illness on self-management interventions. This article presents one approach to developing effective methods to address the needs of ethnic minorities living with chronic illnesses. Described is the University of Hawaii Center for Ohana Self-Management of Chronic Illnesses (COSMCI) located in the School of Nursing & Dental Hygiene and funded by the National Institute of Nursing Research (Award Number P20NR010671). The interdisciplinary center focuses on family and community self-management interventions in ethnically diverse populations with chronic illnesses. Areas discussed are: 1) the operational structure for creating an environment conducive to interdisciplinary ohana self-management chronic illness research in ethnically diverse populations; and 2) the development of sustainable interdisciplinary, biobehavioral research capacity. The COSMCI uses a social cognitive theory framework to guide the application of established self-management interventions to Asian and Pacific Island populations (API) through three conceptually linked research projects on HIV infection, type 2 diabetes, and chronic obstructive pulmonary disease. COSMI addresses the feasibility of sharing of lessons learned among the approaches taken. The interdisciplinary nature of COSMCI increases the potential success of the intervention efforts. Hawaii Medical Journal Copyright 2010.

Management of chronic kidney disease and dialysis in homeless persons.

PubMed

Podymow, Tiina; Turnbull, Jeff

2013-05-01

End-stage renal disease and dialysis are complicated illnesses to manage in homeless persons, who often suffer medical comorbidities, psychiatric disease, cognitive impairment and addictions; descriptions of this population and management strategies are lacking. A retrospective review of dialysis patients who were homeless or unstably housed was undertaken at an urban academic Canadian center from 2001 to 2011. Electronic hospital records were analyzed for demographic, housing, medical, and psychiatric history, dialysis history, adherence to treatment, and outcomes. Two detailed cases of homeless patients with chronic kidney disease are presented. Eleven homeless dialysis patients with a mean age of 52.7±12.3 years, mostly men and mostly from minority groups were dialyzed for 41.1±29.2 months. Most resided permanently in shelters, eventually obtained fistula access, and were adherent to dialysis schedules. Patients were often nonadherent to pre-dialysis management, resulting in emergency starts. Many barriers to care for homeless persons with end-stage kidney disease and on dialysis are identified, and management strategies are highlighted. Adherence is optimized with shelter-based health care and intensive team-oriented case management.

Gender comparisons of medical students' psychosocial profiles.

PubMed

Hojat, M; Glaser, K; Xu, G; Veloski, J J; Christian, E B

1999-05-01

This study was designed to compare male and female medical students on selected personality attributes that could influence their academic attainment and personal success. Participants were 1157 medical students (743 men, 414 women) who completed a set of psychosocial questionnaires measuring intensity and chronicity of loneliness, general anxiety, test anxiety, neuroticism, depression, extraversion, self-esteem, locus of control, perceptions of parents, general health and appraisals of stressful life events. Data were analysed by employing multivariate and univariate analysis of variance and chi-square analysis. Jefferson Medical College. Medical students. Men scored significantly higher on the intensity of loneliness, and women scored higher on general anxiety, test anxiety and neuroticism scales, but the magnitudes of the effect size estimates were not large. No significant gender difference was observed on measures of chronicity of loneliness, depression, extraversion, self-esteem, external locus of control, perception of general health and perceptions of the mother and the father. Women who experienced stressful life events, such as death in the family or personal illness, appraised these events more negatively than did their male counterparts. Implications of the findings for medical education and practice are discussed.

An ontology-based approach to patient follow-up assessment for continuous and personalized chronic disease management.

PubMed

Zhang, Yi-Fan; Gou, Ling; Zhou, Tian-Shu; Lin, De-Nan; Zheng, Jing; Li, Ye; Li, Jing-Song

2017-08-01

Chronic diseases are complex and persistent clinical conditions that require close collaboration among patients and health care providers in the implementation of long-term and integrated care programs. However, current solutions focus partially on intensive interventions at hospitals rather than on continuous and personalized chronic disease management. This study aims to fill this gap by providing computerized clinical decision support during follow-up assessments of chronically ill patients at home. We proposed an ontology-based framework to integrate patient data, medical domain knowledge, and patient assessment criteria for chronic disease patient follow-up assessments. A clinical decision support system was developed to implement this framework for automatic selection and adaptation of standard assessment protocols to suit patient personal conditions. We evaluated our method in the case study of type 2 diabetic patient follow-up assessments. The proposed framework was instantiated using real data from 115,477 follow-up assessment records of 36,162 type 2 diabetic patients. Standard evaluation criteria were automatically selected and adapted to the particularities of each patient. Assessment results were generated as a general typing of patient overall condition and detailed scoring for each criterion, providing important indicators to the case manager about possible inappropriate judgments, in addition to raising patient awareness of their disease control outcomes. Using historical data as the gold standard, our system achieved a rate of accuracy of 99.93% and completeness of 95.00%. This study contributes to improving the accessibility, efficiency and quality of current patient follow-up services. It also provides a generic approach to knowledge sharing and reuse for patient-centered chronic disease management. Copyright © 2017 Elsevier Inc. All rights reserved.

Health-care encounters create both discontinuity and continuity in daily life when living with chronic heart failure-A grounded theory study.

PubMed

Östman, Malin; Ung, Eva Jakobsson; Falk, Kristin

2015-01-01

Living with chronic heart failure (CHF) often involves lifelong contact with health care, more or less frequently, depending on fluctuating health-generating disruptions in everyday life. To reduce the influence on continuity in life, health-care professionals should preferably focus on supporting patients in managing their daily lives, based on their perspective. The aim of this study was to describe how the interaction in health-care encounters contributes to either continuity or discontinuity in the daily life for persons with CHF. Interviews with 18 participants were carried out, using the grounded theory method, through data collection and analysis. Two core concepts were constructed from data which reveal a model that illuminates the characteristics of the encounters, the actions of health-care professionals and the normative discourse. Patient-centred agenda consists of the categories: "Experiencing a subordinate approach," "Objectifying during the encounter" and "Expected to be compliant." This describes how health-care professionals enhance discontinuity in daily life by using a paternalistic approach in the encounter. Person-centred agenda consists of the categories: "Experiencing an empowering approach," "Person-centredness during the encounter" and "Expected to be capable." It describes how participants perceive that health-care professionals enable them to deal with everyday life which enhances continuity. The findings highlight the importance of health-care professionals' attitudes and communication in encounters with patients. Health care must be designed to support and promote patients' own strategic thinking by strengthening their self-image to enhance continuity in everyday life. The experience of discontinuity is based on the prevailing health-care culture which focuses on disease and medical treatment and regards it as superior to the illness experience in an everyday life context. We therefore strongly suggest a paradigm shift in the health-care organisation and culture in order to support the patients in their efforts to live a meaningful, rich life, in spite of the chronic illness CHF.

Impaired self-awareness in human addiction: Deficient attribution of personal relevance

PubMed Central

Moeller, Scott J.; Goldstein, Rita Z.

2014-01-01

Compromised self-awareness of illness-related deficits and behaviors in psychopathology (e.g., schizophrenia) has been associated with deficient functioning of cortical midline regions including the ventromedial prefrontal cortex (vmPFC), implicated in personal relevance. Here, we review and critically analyze recent evidence to suggest that vmPFC abnormalities could similarly underlie deficient tagging of personal relevance in drug addiction, evidenced by a constellation of behaviors encompassing drug-biased attention, negative outcome insensitivity, self-report/behavior dissociation, and social inappropriateness. This novel framework might clarify, for example, why drug-addicted individuals often ruin long-standing relationships or forego important job opportunities while continuing to engage in uncontrolled drug-taking. Therapeutic interventions targeting personal relevance and associated vmPFC functioning could enhance self-awareness and facilitate more adaptive behavior in this chronically relapsing psychopathology. PMID:25278368

Sleep and Culture in Children with Medical Conditions

PubMed Central

Koinis-Mitchell, Daphne

2010-01-01

Objectives To provide an integrative review of the existing literature on the interrelationships among sleep, culture, and medical conditions in children. Methods A comprehensive literature search was conducted using PubMed, Medline, and PsychINFO computerized databases and bibliographies of relevant articles. Results Children with chronic illnesses experience more sleep problems than healthy children. Cultural beliefs and practices are likely to impact the sleep of children with chronic illnesses. Few studies have examined cultural factors affecting the relationship between sleep and illness, but existing evidence suggests the relationship between sleep and illness is exacerbated for diverse groups. Conclusions Sleep is of critical importance to children with chronic illnesses. Cultural factors can predispose children both to sleep problems and to certain medical conditions. Additional research is needed to address the limitations of the existing literature, and to develop culturally sensitive interventions to treat sleep problems in children with chronic illnesses. PMID:20332222

An Exploratory Study of the Relationship of Family Support and Coping with Adjustment: Implications for College Students with a Chronic Illness

ERIC Educational Resources Information Center

Wodka, Ericka L.; Barakat, Lamia P.

2007-01-01

To examine the role of family support and coping in the adjustment of adolescents with chronic illness (CI) transitioning into college, college freshmen and sophomores (N[subscript chronic illness] = 32, N[subscript primarily negative life event] = 53, N[subscript primarily positive life event] = 16) were administered standard measures. CI group…

Nutritional Needs of the Handicapped/Chronically Ill Child. Manual I: Nutrition Program Planning. Presentations from a National Interdisciplinary Symposium.

ERIC Educational Resources Information Center

Ekvall, Shirley M., Ed.; And Others

The following papers were delivered at a symposium on improving the nutritional status of a child who is chronically ill or handicapped: (1) "Planning Comprehensive Health Services for the Chronically Ill/Handicapped Child; (2) "Future National Directions in Maternal and Child Health"; (3) "Nutrition Services in a State Crippled Children's…

Tools to assess living with a chronic illness: A systematic review.

PubMed

Ambrosio, Leire; Portillo, Mari Carmen

2018-05-16

To analyse the currently available instruments to assess living with a chronic illness and related aspects. A review of the evidence was made using the databases: Medline, CINHAL, PsycINFO, Cochrane Library, Embase and Cuiden. The criteria that limited the search were: the language, English and / or Spanish and studies carried out in an adult population. Years of article publication were not used as a limit. A total of 16 instruments were identified and analysed that apparently measured the concept of living with a chronic illness and/or related aspects. According to the name of the instrument, four seemed to evaluate the concept of living with a chronic illness while the rest of the instruments evaluated aspects intrinsically related to the concept of "living with", such as attributes or the meaning of living with a chronic illness. Different instruments were identified to evaluate daily living for the chronically ill patient, as well as related aspects. According to this review, further validation studies are required in other populations and/or contexts in order to achieve valid and reliable instruments that could be used in clinical practice. Copyright © 2018 Elsevier España, S.L.U. All rights reserved.

Why less may be more: a mixed methods study of the work and relatedness of ‘weak ties’ in supporting long-term condition self-management

PubMed Central

2014-01-01

Background The distribution of the roles and responsibilities of long-term condition management (LTCM) outside of formal health services implicates a wide set of relationships and activities of involvement. Yet, compared to studies of professional implementation, patient systems of implementation remain under-investigated. The aim of this paper is to explore the work, meaning and function attributed to ‘weaker’ ties relative to other more bonding relationships in order to identify the place of these within a context of systems of support for long-term conditions. Methods This is a mixed methods survey with nested qualitative study. A total of 300 people from deprived areas in the North West of England with chronic illnesses took part in a survey conducted in 2010 to 2011. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. Notions of ‘work’ were used to describe activities associated with chronic illness and to identify how weaker ties are included and perceived to be involved through social network members (SNM) contributions. Results The results provide an articulation of how SNMs are substantially involved in weak tie illness management. Weaker ties constituted 16.1% of network membership involved in illness work. The amount of work undertaken was similar but less than that of stronger ties. Weaker ties appeared more durable and less liable to loss over time than stronger ties. The qualitative accounts suggested that weak ties enabled the moral positioning of the self-managing ‘self’ and acted on the basis of a strong sense of reciprocity. Conclusions Weak ties act as an acceptable bridge between a sense of personal agency and control and the need for external support because it is possible to construct a sense of moral acceptability through reciprocal exchange. Access to weak tie resources needs to be taken into account when considering the ways in which systems of health implementation for chronic illness are designed and delivered. PMID:24524253

Quick screening tool for patients with severe negative emotional reactions to chronic illness: psychometric study of the negative emotions due to chronic illness screening test (NECIS).

PubMed

Huang, Yun-Hsin; Wu, Chih-Hsun; Chen, Hsiu-Jung; Cheng, Yih-Ru; Hung, Fu-Chien; Leung, Kai-Kuan; Lue, Bee-Horng; Chen, Ching-Yu; Chiu, Tai-Yuan; Wu, Yin-Chang

2018-01-16

Severe negative emotional reactions to chronic illness are maladaptive to patients and they need to be addressed in a primary care setting. The psychometric properties of a quick screening tool-the Negative Emotions due to Chronic Illness Screening Test (NECIS)-for general emotional problems among patients with chronic illness being treated in a primary care setting was investigated. Three studies including 375 of patients with chronic illness were used to assess and analyze internal consistency, test-retest reliability, criterion-related validity, a cut-off point for distinguishing maladaptive emotions and clinical application validity of NECIS. Self-report questionnaires were used. Internal consistency (Cronbach's α) ranged from 0.78 to 0.82, and the test-retest reliability was 0.71 (P < 0.001). Criterion-related validity was 0.51 (P < 0.001). Based on the 'severe maladaptation' and 'moderate maladaptation' groups defined by using the 'Worsening due to Chronic Illness' index as the analysis reference, the receiver-operating characteristic curve analysis revealed an area under the curve of 0.81 and 0.82 (ps < 0.001), and a cut-off point of 19/20 was the most satisfactory for distinguishing those with overly negative emotions, with a sensitivity and specificity of 83.3 and 69.0%, and 68.5 and 83.0%, respectively. The clinical application validity analysis revealed that low NECIS group showed significantly better adaptation to chronic illness on the scales of subjective health, general satisfaction with life, self-efficacy of self-care for disease, illness perception and stressors in everyday life. The NECIS has satisfactory psychometric properties for use in the primary care setting. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Individual care plans for chronically ill patients within primary care in the Netherlands: Dissemination and associations with patient characteristics and patient-perceived quality of care.

PubMed

Jansen, Daphne L; Heijmans, Monique; Rijken, Mieke

2015-06-01

To examine the use of individual care plans (ICPs) within primary chronic illness care in the Netherlands, and to explore the relationships between ICP use, patient characteristics, and patient-perceived quality of care. Cross-sectional study using survey data from a panel of chronically ill patients and medical registration data provided by their general practices. A sample of 1377 patients with somatic chronic disease(s) randomly selected in general practices throughout the Netherlands, supplemented with a sample of 225 COPD patients, also recruited from general practices. (i) Percentage of ICP use based on self-report by chronically ill patients, and (ii) patient-perceived quality of care as assessed using the Patient Assessment of Chronic Illness Care (PACIC). ICP use among the total generic sample was low (9%), but slightly higher (13%) among patients diagnosed with diabetes or COPD, diseases for which disease management programmes have been set up in the Netherlands. Patients with a low educational level and patients with poor(er) self-rated health were more likely to have an ICP. Compared with patients without an ICP, patients with an ICP more often reported that the care they received was patient-centred, proactive, planned, and included collaborative goal setting, problem-solving, and follow-up support. Findings reveal a discrepancy between practice and policy aspirations regarding ICP use in primary chronic illness care. More research is needed to gain insight into the effectiveness of ICPs to improve the quality of chronic illness care in various patient populations.

Cancer screening, prevention, and treatment in people with mental illness

PubMed Central

Weinstein, Lara; Stefancic, Ana; Cummingham, Amy T.; Hurley, Katelyn E.; Cabassa, Leopodo; Wender, Richard

2015-01-01

People with mental illness die decades earlier in our country when compared to the general public Most of this disparity is related to preventable and treatable chronic conditions, with many studies finding cancer as the second leading cause of death. Individual lifestyle factors, such as smoking or limited adherence to treatment, are often cited as highly significant issues in shaping risk among persons with mental illness. However, many contextual or systems-level factors exacerbate these individual factors and may fundamentally drive health disparities among people with mental illness. We conducted an integrative review in order to summarize the empirical literature on cancer prevention, screening, and treatment for people with mental illness. While multiple interventions are being developed and tested to address tobacco dependence and obesity in these populations, the evidence for effectiveness is quite limited, and essentially all prevention interventions focus at the individual level. This review was able to find only one published article describing evidence-based interventions to promote cancer screening and improve cancer treatment in people with mental illness. Based on our review of the literature and the experience and expertise of the authors, we conclude each section with suggestions at the individual, interpersonal, organizational, community, and policy level that may improve cancer prevention, screening, and treatment in people with mental illness. PMID:26663383

Global advances in health and medicine through systems biology: an example from the Netherlands.

PubMed

van der Heijden, Marianne J E; Schroen, Yan

2012-09-01

Globally, healthcare systems are facing problems with increasing healthcare costs due to chronic diseases. Cardiovascular disease, cancer, diabetes, depression, and chronic lung disease are some of the top chronic diseases that put pressure on our healthcare systems and are very difficult to resolve. The chronic diseases mentioned are often lifestyle-related and require a personalized approach. The solutions that we currently have at hand seem to be insufficient in meeting the needs of the patients and of our healthcare systems: the cracks in our systems are showing. Patients with chronic illness and multimorbidity find themselves caught in a web of referrals between medical specialists and conflicting treatment plans. As a result, they are consuming a lot of healthcare without actually reaching their goal: attaining the most optimal quality of life and the least physical burden possible. In short, mechanisms that previously functioned perfectly must now be replaced by new approaches. The supply of the healthcare system no longer meets the demands of society.

A dyadic model of living with epilepsy based on the perspectives of adults with epilepsy and their support persons

PubMed Central

Walker, Elizabeth Reisinger; Barmon, Christina; McGee, Robin E.; Engelhard, George; Sterk, Claire E.; DiIorio, Colleen; Thompson, Nancy J.

2015-01-01

Epilepsy is a chronic condition that significantly affects the lives of individuals with epilepsy and their support persons, though few studies have examined the experiences of both individuals. To examine these experiences and explore the interpersonal relationships between dyad members, we conducted in-depth interviews with 22 people with epilepsy and 16 support persons. Data analysis was guided by a grounded theory perspective. We developed a model that shows how epilepsy impacts the lives of both people with epilepsy and support persons and how the experiences of people with epilepsy and supporters influence one another. The core model elements were seizure and treatment factors, relationship characteristics, self-management, seizure control, support provided, illness intrusiveness, and quality of life. People with epilepsy moved through the model in five trajectories depending on seizure control, relationship type, and gender. Support providers followed four trajectories based on seizure control, perception of burden, and support for themselves. People with epilepsy and their primary support providers have varied experiences in how epilepsy affects their lives. This model could serve as a basis for future research and intervention efforts focused on ways to reduce illness intrusiveness and improve quality of life for people with epilepsy and their supporters. PMID:26515151

Testing the Model: A Phase 1/11 Randomized Double Blind Placebo Control Trial of Targeted Therapeutics: Liposomal Glutathione and Curcumin

DTIC Science & Technology

2016-10-01

Can non- specific cellular immunity protect HIV-infected persons with very low CD4 counts? Presented at Conference on Integrating Psychology and...Under Review. 50. Nierenberg B, Cooper S, Feuer SJ, Broderick G. Applying Network Medicine to Chronic Illness: A Model for Integrating Psychology ...function in these subjects as compared to GW era sedentary healthy controls. We applied an integrative systems- based approach rooted in computational

Testing the Model: A Phase 1/11 Randomized Double Blind Placebo Control Trial of Targeted Therapeutics: Liposomal Glutathione and Curcumin

DTIC Science & Technology

2017-10-01

HIV-infected persons with very low CD4 counts? Presented at Conference on Integrating Psychology and Medicine, Waheki Island, Auckland, NZ, 10-12th...SJ, Broderick G. Applying Network Medicine to Chronic Illness: A Model for Integrating Psychology into Routine Care. Amer Psych, 2015. Under review...function in these subjects as compared to GW era sedentary healthy controls. We applied an integrative systems- based approach rooted in

Welfare Reform: Bibliographies of Case Management and Agency/Client Contracting.

DTIC Science & Technology

1988-03-11

Case Management *4 Ss made up about one-fifth of the cases in the program but made inordi- nate demands on the time and emotional resources of their...from their families, or their families face emotional strain in caring for the elderly member. Case management with a coordinator is a way to link the...based chronically mentally ill persons of the Community Support Program (CSP) of the National Institute of Men - % tal Health. Information was obtained on

A meta-ethnographic synthesis on phenomenographic studies of patients’ experiences of chronic illness

PubMed Central

Röing, Marta

2015-01-01

Phenomenography is a qualitative research approach developed within an educational framework, focusing on the qualitative experience of learning. It is also being used, to a lesser degree, in healthcare research. In the present study, we conducted a meta-ethnographic synthesis of phenomenographic studies on chronic illness, in order to give a broader perspective of how chronic illness can be experienced. Our aim was not to describe patients’ various individual experiences of illness, but instead to identify the different ways chronic illness can be experienced by patients. Our synthesis and phenomenographic interpretation of 12 selected articles found that patients’ experiences of chronic illness can be described in terms of a different lived body, a struggle with threat to identity and self-esteem, a diminished lifeworld, and a challenging reality. These experiences relate to each other in a process of recurring loops, where the different ways of experiencing continue to influence each other over time. According to these findings, the use of phenomenography as a research approach has the potential to add to the understanding of how chronic illness can be experienced. Patients may benefit from seeing that their illness can be experienced in many different ways and that it has many aspects, which then can lead to a better understanding and coping with their illness. We suggest that it may be worthwhile to expand the scope of phenomenography outside pedagogics. This presupposes a revision of the application to include a wider and more comprehensive description, for instance, of the different ways illness and healthcare phenomena can be experienced, and how these different ways are related to each other, with less focus on hierarchical relations. PMID:25690674

Protein calorie malnutrition, nutritional intervention and personalized cancer care.

PubMed

Gangadharan, Anju; Choi, Sung Eun; Hassan, Ahmed; Ayoub, Nehad M; Durante, Gina; Balwani, Sakshi; Kim, Young Hee; Pecora, Andrew; Goy, Andre; Suh, K Stephen

2017-04-04

Cancer patients often experience weight loss caused by protein calorie malnutrition (PCM) during the course of the disease or treatment. PCM is expressed as severe if the patient has two or more of the following characteristics: obvious significant muscle wasting, loss of subcutaneous fat; nutritional intake of <50% of recommended intake for 2 weeks or more; bedridden or otherwise significantly reduced functional capacity; weight loss of >2% in 1 week, 5% in 1 month, or 7.5% in 3 months. Cancer anorexia-cachexia syndrome (CACS) is a multifactorial condition of advanced PCM associated with underlying illness (in this case cancer) and is characterized by loss of muscle with or without loss of fat mass. Cachexia is defined as weight loss of more than 5% of body weight in 12 months or less in the presence of chronic disease. Hence with a chronic illness on board even a small amount of weight loss can open the door to cachexia. These nutritional challenges can lead to severe morbidity and mortality in cancer patients. In the clinic, the application of personalized medicine and the ability to withstand the toxic effects of anti-cancer therapies can be optimized when the patient is in nutritional homeostasis and is free of anorexia and cachexia. Routine assessment of nutritional status and appropriate intervention are essential components of the effort to alleviate effects of malnutrition on quality of life and survival of patients.

Social interaction in type 2 diabetes computer-mediated environments: How inherent features of the channels influence peer-to-peer interaction.

PubMed

Lewinski, Allison A; Fisher, Edwin B

2016-06-01

Interventions via the internet provide support to individuals managing chronic illness. The purpose of this integrative review was to determine how the features of a computer-mediated environment influence social interactions among individuals with type 2 diabetes. A combination of MeSH and keyword terms, based on the cognates of three broad groupings: social interaction, computer-mediated environments, and chronic illness, was used to search the PubMed, PsychInfo, Sociology Research Database, and Cumulative Index to Nursing and Allied Health Literature databases. Eleven articles met the inclusion criteria. Computer-mediated environments enhance an individual's ability to interact with peers while increasing the convenience of obtaining personalized support. A matrix, focused on social interaction among peers, identified themes across all articles, and five characteristics emerged: (1) the presence of synchronous and asynchronous communication, (2) the ability to connect with similar peers, (3) the presence or absence of a moderator, (4) personalization of feedback regarding individual progress and self-management, and (5) the ability of individuals to maintain choice during participation. Individuals interact with peers to obtain relevant, situation-specific information and knowledge about managing their own care. Computer-mediated environments facilitate the ability of individuals to exchange this information despite temporal or geographical barriers that may be present, thus improving T2D self-management. © The Author(s) 2015.

Protein calorie malnutrition, nutritional intervention and personalized cancer care

PubMed Central

Gangadharan, Anju; Choi, Sung Eun; Hassan, Ahmed; Ayoub, Nehad M.; Durante, Gina; Balwani, Sakshi; Kim, Young Hee; Pecora, Andrew; Goy, Andre; Suh, K. Stephen

2017-01-01

Cancer patients often experience weight loss caused by protein calorie malnutrition (PCM) during the course of the disease or treatment. PCM is expressed as severe if the patient has two or more of the following characteristics: obvious significant muscle wasting, loss of subcutaneous fat; nutritional intake of <50% of recommended intake for 2 weeks or more; bedridden or otherwise significantly reduced functional capacity; weight loss of >2% in 1 week, 5% in 1 month, or 7.5% in 3 months. Cancer anorexia-cachexia syndrome (CACS) is a multifactorial condition of advanced PCM associated with underlying illness (in this case cancer) and is characterized by loss of muscle with or without loss of fat mass. Cachexia is defined as weight loss of more than 5% of body weight in 12 months or less in the presence of chronic disease. Hence with a chronic illness on board even a small amount of weight loss can open the door to cachexia. These nutritional challenges can lead to severe morbidity and mortality in cancer patients. In the clinic, the application of personalized medicine and the ability to withstand the toxic effects of anti-cancer therapies can be optimized when the patient is in nutritional homeostasis and is free of anorexia and cachexia. Routine assessment of nutritional status and appropriate intervention are essential components of the effort to alleviate effects of malnutrition on quality of life and survival of patients. PMID:28177923

Occupational therapy in India: focus on functional recovery and need for empowerment

PubMed Central

Samuel, Reema; Jacob, K. S.

2017-01-01

While there have been significant advances in treatments for mental disorders over the past century, cure for many mental disorders remains elusive. The complex problems of mental illness require a multi-sectoral, multi-disciplinary and multi-dimensional approach to care. The need for focus on biopsychosocial model rather than on biomedical practise, client-centred rather than physician-oriented care, personal rather than clinical recovery, are often preached but rarely practiced. The lack of emphasis on functioning and the limited workforce and evidence base complicate issues related to the care of people with chronic mental illness in India. The role of occupational therapy in bridging the gap between symptomatic improvement and functional recovery is discussed. PMID:28827877

Using a biopsychosocial perspective in the treatment of fibromyalgia patients.

PubMed

Turk, Dennis C; Adams, Leah M

2016-05-01

Fibromyalgia (FM) is a complex illness that manifests in different ways across individuals. Given that there are currently no known cures for FM, like treatment for other chronic diseases, interventions focus on learning strategies to alleviate symptom severity, to cope with and manage residual symptoms of the illness and to maximize health-related quality of life despite symptoms. In this article, we highlight the need for providers to adopt a biopsychosocial perspective for understanding and addressing patients with FM, noting that biological, psychosocial and behavioral factors function interdependently to affect a person's experience and adaptation. A cognitive-behavioral approach, which incorporates a biopsychosocial perspective, is detailed, along with specific treatment considerations for helping patients with FM manage their symptoms.

Perceptions of learning disability nurses and support staff towards people with a diagnosis of schizophrenia.

PubMed

McCorkindale, S; Fleming, M P; Martin, C R

2017-06-01

WHAT IS KNOWN ABOUT THE SUBJECT?: People with learning disability are more likely than the general population to develop schizophrenia. Personal recovery philosophies are based on positive attitudes and an optimism that recognizes and values people and their strengths and capacity to achieve goals. Little is known from previous studies about the illness perceptions of learning disability practitioners who work with people that experience both a learning disability and schizophrenia. The illness beliefs of learning disability practitioners about schizophrenia may mediate the potential for social exclusion and limit recovery outcomes. WHAT THIS STUDY/PAPER ADDS TO EXISTING KNOWLEDGE?: The findings show that the illness beliefs of learning disability practitioners and support workers regarding schizophrenia are pessimistic in terms of the consequences for people with schizophrenia and learning disability and their relatives as well as the chronic course of the illness. WHAT ARE THE IMPLICATIONS FOR CLINICAL PRACTICE?: This study identifies the nature of LD practitioner perceptions about schizophrenia and provides guidance about how personal recovery philosophies can be applied to the management of LD and schizophrenia. The beliefs of learning disability practitioners and support workers regarding schizophrenia need to be reframed to support better recovery outcomes and social inclusion for this group. The findings from this study can inform the development of training in bio-psycho-social models of schizophrenia, recovery approaches, family/carer interventions, clinical supervision, mentorship and reflection on clinical practice, which could be potentially useful strategies to help facilitate a reframing of beliefs. Background and purpose of study The prevalence of schizophrenia in people with learning disability is 3-4%. This is the first study to investigate the illness perceptions of learning disability (LD) practitioners towards people with schizophrenia. Methods Learning disability practitioners (n = 210) that work with people with LD and schizophrenia completed a modified version of the Illness Perception Questionnaire Schizophrenia Carers Version (IPQ-SCV). Descriptive and correlational analyses were conducted for all of the IPQ-SCV subscales. Results A significant positive correlation was found between consequences relative and consequences patient (0.495, P < 0.001), and a negative correlation was found between timeline episodic and timeline chronic (-0.243, P < 0.001) subscales. Discussion Consistent with previous evidence found regarding negative staff attitudes to schizophrenia recovery outcomes, course and chronicity, the current investigation has extended and confirmed these observations to staff working with individuals with comorbid schizophrenia and learning disability. Implications for practice This study identifies the nature of LD practitioner perceptions about schizophrenia and contributes to the development of the recovery philosophy in relation to the management of LD and schizophrenia. The findings inform the design of training modules in bio-psycho-social models of schizophrenia, recovery approaches, family intervention, clinical supervision and reflection. These can help LD practitioners to reframe their schizophrenia/LD illness beliefs. © 2017 John Wiley & Sons Ltd.

Paradise regained: how elderly people who are chronically mentally ill reinvent a social self.

PubMed

van Dongen, E

2001-01-01

Throughout their lives, chronic mentally ill people go through a series of disruptive events and periods of suffering. In general, the literature suggests that people with long-standing mental illnesses are extremely vulnerable and cannot maintain themselves without assistance. When old age is added to this mix, the result is a heavy burden for both the patient and the caregiver. While the negative consequences, for both patient and caregiver, of suffering chronic illness during old age must not be ignored, neither should the positive periods in these people's lives. There are times when the mutual identification between cold and young yields vivid examples of the latter's ability to reconstitute a social self. In this paper I look at chronic illness in old age as a struggle on the part of the sufferer to reconcile her/his experiences of suffering in the light of approaching death. I attempt to show that the process of aging with a chronic mental illness involves not only decay and suffering, but also resilience and vitality.

The "continuum" of a unified theory of diseases.

PubMed

Vithoulkas, George; Carlino, Stefano

2010-02-01

This essay's theme was inspired by a question asked by a child: 'Why do I get ill?' The question is very interesting, but has no easy answer. This paper discusses a few possible answers to this difficult question. Through the life of a person, from birth to death, there is a "continuum" in the pathological conditions a person may experience. The body, as a whole, suffers deeply any time there is an acute or a chronic condition that is either maltreated or neglected. Chronic and acute diseases in the medical history of a person constitute a rigidly related chain of immune responses in the form of a real "continuum" that at every point in time indicates the end result of this continuum. The idea promoted here is that suppression of diseases, through excess of chemical drugs or other means, many times overwhelms the body's natural defenses and forces the immune system to compromise and start a deeper line of defense, which then constitute the beginning of a new chronic condition. Thus, the original inflammation of an acute condition may continue as a sub-acute inflammatory process on a deeper level. Acute inflammatory conditions must therefore be treated very carefully from their beginnings in childhood in order not to force the immune system to compromise. It is also suggested here that all chronic degenerative conditions have a sub-acute inflammatory character, and that "inflammation" constitutes the main common parameter of all diseases.

Nutritional Needs of the Child with a Handicap or Chronic Illness. Manual II: Clinical Nutrition. Presentations from a National Interdisciplinary Symposium.

ERIC Educational Resources Information Center

Ekvall, Shirley M.; Wheby, Elizabeth A.

The following papers were presented at a symposium on clinical nutrition for the child who is chronically ill or handicapped: (1) "Food Allergy"; (2) "Anemia and the Chronically Ill or Handicapped Child"; (3) "Nutrition and Neurotransmitters--Clinical Implications"; (4) "The Importance of Lipid Type in the Diet after Burn Injury"; (5) "Advances of…

Impact of chronic illness timing and persistence at school entry on child and parent outcomes: Australian longitudinal study.

PubMed

Quach, Jon; Barnett, Tony

2015-01-01

To understand the prevalence and timing of child chronic illness at school entry; associations with child learning, behavior and health-related quality of life and parent mental health at ages 6 to 7, 8 to 9, and 10 to 11 years; and cumulative health care costs. Data were drawn from the first 4 waves of the Longitudinal Study of Australian Children. Children were aged 4 to 5 years at wave 1, with data collection every 2 years. Parent-reported timing of child chronic illness at school entry was categorized into 4 chronic illness groups based on changes between waves 1 and 2: none, resolving, incident and persistent. Child outcomes included: parent-reported quality of life, parent- and teacher-reported behavior, teacher-reported child learning, teacher-reported child-teacher relationship, directly assessed nonverbal and verbal cognition and parent self-reported mental health. Linear regression, adjusted for gender and socioeconomic position, was used to quantify longitudinal associations between chronic illness timing at school entry with outcomes at age 6 to 7 years, 8 to 9 years and 10 to 11 years. Of the 4983 children enrolled in the study, chronic illness data was available for 4464 children (89.6%) at both waves 1 and 2. From wave 1, 6.1% had a condition that persisted until wave 2, while 14.1% had a condition that resolved. Furthermore, 4.7% had a newly emerging condition at wave 2. Compared with the no chronic illness group, children with persistent or emerging chronic illness during school entry had the poorest outcomes (except father's mental health) at all time points, while children with resolving conditions had smaller differences. Child chronic illness at school entry is associated with poorer longitudinal child and maternal outcomes. Therefore, future research should aim to determine the risk and protective factors that contribute to the poorer child and parent outcomes experienced in this growing population. Copyright © 2015 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

Birth order and its association with the onset of chronic fatigue syndrome.

PubMed

Brimacombe, Michael; Helmer, Drew A; Natelson, Benjamin H

2002-08-01

Chronic fatigue syndrome (CFS) is a medically unexplained illness that is diagnosed on the basis of a clinical case definition; so it probably is an illness with multiple causes producing the same clinical picture. One way of dealing with this heterogeneity is to stratify patients based on illness onset. We hypothesized that either the whole group of CFS patients or that group which developed CFS gradually would show a relation with birth order, while patients who developed CFS suddenly, probably due to a viral illness, would not show such a relation. We hypothesized the birth order effect in the gradual onset group because those patients have more psychological problems, and birth order effects have been shown for psychological characteristics. We compared birth order in our CFS patients to that in a comparison group derived from U.S. demographic data. We found a tendency that did not reach formal statistical significance for a birth order effect in the gradual onset group, but not in either the sudden onset or combined total group. However, the birth order effect we found was due to relatively increased rates of CFS in second-born children; prior birth order studies of personality characteristics have found such effects to be skewed toward first-born children. Thus, our data do support a birth order effect in a subset of patients with CFS. The results of this study should encourage a larger multicenter study to further explore and understand this relation.

Beliefs about causation of schizophrenia: do Indian families believe in supernatural causes?

PubMed

Srinivasan, T N; Thara, R

2001-03-01

Beliefs about the causation of schizophrenia could influence the attitudes patients' families adopt towards the patient and may also influence their help-seeking behaviour. Indian families have been typically described as often believing in causes like supernatural forces and therefore seeking help from magico-religious healers. In the changing mental health scenario in India, this impression needs verification. Key relatives living with 254 chronic schizophrenia patients were interviewed and asked to name the causes they believed were behind the illness. A list of possible causes was provided for the families to select from, and relatives were also encouraged to mention other possible causes, not featured in the list. The possible causes identified and the factors related to attributions made were analysed. A supernatural cause was named by only 12% of the families and as the only cause by 5%. Psychosocial stress was most commonly cited cause, followed by personality defect and heredity. A small number of families (14%) could not name any cause and 39% named more than one cause. Patient gender and education, duration of illness and the key relative's education and the nature of relationship were related to the type of causal attributions made. Families living with patients suffering chronic schizophrenia receiving treatment in urban India rarely subscribe to the idea of supernatural causation of the illness. The causal attributions made by them are fairly rational and understandable, given the relative lack of exposure to proper information about the illness.

Effects of news media messages about mass shootings on attitudes toward persons with serious mental illness and public support for gun control policies.

PubMed

McGinty, Emma E; Webster, Daniel W; Barry, Colleen L

2013-05-01

In recent years, mass shootings by persons with serious mental illness have received extensive news media coverage. The authors test the effects of news stories about mass shootings on public attitudes toward persons with serious mental illness and support for gun control policies. They also examine whether news coverage of proposals to prevent persons with serious mental illness from having guns exacerbates the public's negative attitudes toward this group. The authors conducted a survey-embedded randomized experiment using a national sample (N=1,797) from an online panel. Respondents were randomly assigned to groups instructed to read one of three news stories or to a no-exposure control group. The news stories described, respectively, a mass shooting by a person with serious mental illness, the same mass shooting and a proposal for gun restrictions for persons with serious mental illness, and the same mass shooting and a proposal to ban large-capacity magazines. Outcome measures included attitudes toward working with or living near a person with serious mental illness, perceived dangerousness of persons with serious mental illness, and support for gun restrictions for persons with serious mental illness and for a ban on large-capacity magazines. Compared with the control group, the story about a mass shooting heightened respondents' negative attitudes toward persons with serious mental illness and raised support for gun restrictions for this group and for a ban on large-capacity magazines. Including information about the gun restriction policy in a story about a mass shooting did not heighten negative attitudes toward persons with serious mental illness or raise support for the restrictions. The aftermath of mass shootings is often viewed as a window of opportunity to garner support for gun control policies, but it also exacerbates negative attitudes toward persons with serious mental illness.

Confirming mental health care in acute psychiatric wards, as narrated by persons experiencing psychotic illness: an interview study.

PubMed

Sebergsen, Karina; Norberg, Astrid; Talseth, Anne-Grethe

2016-01-01

It is important that mental health nurses meet the safety, security and care needs of persons suffering from psychotic illness to enhance these persons' likelihood of feeling better during their time in acute psychiatric wards. Certain persons in care describe nurses' mental health care as positive, whereas others report negative experiences and express a desire for improvements. There is limited research on how persons with psychotic illness experience nurses' mental health care acts and how such acts help these persons feel better. Therefore, the aim of this study was to explore, describe and understand how the mental health nurses in acute psychiatric wards provide care that helps persons who experienced psychotic illness to feel better, as narrated by these persons. This study had a qualitative design; 12 persons participated in qualitative interviews. The interviews were transcribed, content analysed and interpreted using Martin Buber's concept of confirmation. The results of this study show three categories of confirming mental health care that describe what helped the participants to feel better step-by-step: first, being confirmed as a person experiencing psychotic illness in need of endurance; second, being confirmed as a person experiencing psychotic illness in need of decreased psychotic symptoms; and third, being confirmed as a person experiencing psychotic illness in need of support in daily life. The underlying meaning of the categories and of subcategories were interpreted and formulated as the theme; confirming mental health care to persons experiencing psychotic illness. Confirming mental health care acts seem to help persons to feel better in a step-wise manner during psychotic illness. Nurses' openness and sensitivity to the changing care needs of persons who suffer from psychotic illness create moments of confirmation within caring acts that concretely help the persons to feel better and that may enhance their health. The results show the importance of taking the experiential knowledge of persons who have experienced psychotic illness seriously to develop and increase the quality of mental health care in acute psychiatric wards.

[The use of motivational interviewing (MI) in patients with chronic renal failure].

PubMed

Zawadzka, Barbara; Kleja, Justyna

2014-01-01

Patients suffering from chronic kidney disease must submit to numerous medical procedures and burdensome changes in lifestyle that make it difficult to adapt to the disease. Therefore, an important issue is to stimulate the patients motivation to comply with medical recommendations. This article describes a therapy tool for developing patient's motivation to change, called therapy or motivational interview (MI), the type of approach that is increasingly being used inhealth care, as an aid to chronically ill patients. Characteristics of this approach generally relies on the assumption that the Motivation for a change should come from a patient, not the provider, and a patient should articulate arnd resolve ambivalence provider persuassion is not effective and enhance resistance from a change. Persuasion by a person healing can only strengthen and enhance the patient's resistance to unwanted habits.

The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children.

PubMed

Ferro, Mark A; Boyle, Michael H

2015-01-01

The present study extends earlier research identifying an increased risk of anxiety among children with chronic physical illness (CwCPI) by examining a more complete model that explains how physical illness leads to increased symptoms of anxiety and depression. We tested a stress-generation model linking chronic physical illness to symptoms of anxiety and depression in a population-based sample of children aged 10 to 15 years. We hypothesized that having a chronic physical illness would be associated with more symptoms of anxiety and depression, increased levels of maternal depressive symptoms, more family dysfunction, and lower self-esteem; and, that maternal depressive symptoms, family dysfunction, and child self-esteem would mediate the influence of chronic physical illness on symptoms of anxiety and depression. Data came from the National Longitudinal Survey of Children and Youth (N = 10,646). Mediating processes were analyzed using latent growth curve modeling. Childhood chronic physical illness was associated with increases in symptoms of anxiety and depression, β = 0.20, p < 0.001. Mediating effects were also observed such that chronic physical illness resulted in increases in symptoms of maternal depression and family dysfunction, leading to declines in child self-esteem, and in turn, increases in symptoms of anxiety and depression. CwCPI are at-risk for symptoms of anxiety and depression. Some of this elevated risk appears to work through family processes and child self-esteem. This study supports the use of family-centered care approaches among CwCPI to minimize burden on families and promote healthy psychological development for children.

The impact of illness-related shame on psychological health and social relationships: Testing a mediational model in students with chronic illness.

PubMed

Trindade, Inês A; Duarte, Joana; Ferreira, Cláudia; Coutinho, Mariana; Pinto-Gouveia, José

2018-05-01

This study explores the impact of illness-related shame on the quality of social relationships and psychological health in chronic patients. We aimed to examine the roles of fear of receiving compassion from others and experiential avoidance as potential mediators of this relationship. Although some studies have demonstrated the negative impact of chronic illness-related shame on psychological functioning, the mechanisms that may underlie this link remain understudied. The sample was comprised by 115 college students, which had been diagnosed with at least 1 chronic illness. Participants completed self-report measures on an online platform. This study's design was cross-sectional. A path analysis was conducted using structural equation modelling. Results showed that the impact of illness-related shame on both psychological health (R 2  = .45) and the quality of social relationships (R 2  = .33) was fully accounted by fear of compassion from others and experiential avoidance. This model revealed an excellent fit. Fear of receiving compassion from others was the main mediator of the illness-related shame link with the quality of social relationships (β = -.22). The main mediator of the association between shame-related chronic illness and psychological health was experiential avoidance (β = -.21).This study shed light on possible psychological mechanisms linking feelings of shame associated with having a chronic condition and impaired social relationships and mental health. On one hand, resisting feelings of compassion and care from others and, on the other hand, avoiding difficult internal experiences and situations that might trigger them seem to underlie the impact of shame on psychological and social functioning in chronic patients. Copyright © 2018 John Wiley & Sons, Ltd.

Pre-travel advice seeking from GPs by travellers with chronic illness seen at a travel clinic.

PubMed

Gagneux-Brunon, Amandine; Andrillat, Carole; Fouilloux, Pascale; Daoud, Fatiha; Defontaine, Christiane; Charles, Rodolphe; Lucht, Frédéric; Botelho-Nevers, Elisabeth

2016-03-01

Travellers are ageing and frequently report chronic illness. Pre-travel health advice is crucial, particularly in this subgroup, and general practitioners (GPs) are first in line for treatment adjustment before departure. Our aim is to evaluate pre-travel health advice seeking from GPs by travellers with chronic illness seen at a travel clinic. A cross-sectional observational survey using a questionnaire was conducted between August 2013 and July 2014 in travellers attending the travel medicine clinic of a tertiary university hospital in France. During the study, 2019 travellers were included. Mean age was 39.4 years (±18.8). Three hundred and ninety-one (19.4%) travellers reported a history of a chronic illness. Arterial hypertension and diabetes mellitus were the most frequently reported illnesses, affecting, respectively, 168 (8.3%) travellers and 102 (5.1%). Hajj pilgrims were more likely to report a history of chronic illness than other travellers. Only 810 (40.1%) travellers sought pre-travel advice from their GP. Six hundred and fifty-two (40.1%) healthy travellers and 158 (40.5%) travellers reporting chronic illness sought pre-travel advice from their GP (P = 0.96). Travellers with a history of chronic illness do not seek pre-travel health advice from their GP more frequently than healthy travellers. Travel health specialists are generally not the best practitioners to manage the care of underlying medical conditions presenting risks during travel. However, GPs offer continuity and disease management expertise to improve the specificity of pre-travel planning. Thus, ongoing collaboration between the traveller, GP and travel health specialist is likely to yield the best outcomes. © International Society of Travel Medicine, 2016. All rights reserved. Published by Oxford University Press. For permissions, please e-mail: journals.permissions@oup.com.

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

PubMed

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

2008-01-01

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

Longitudinal changes in health-related quality of life for chronic diseases: an example in hemophilia A.

PubMed

Poon, Jiat-Ling; Doctor, Jason N; Nichol, Michael B

2014-08-01

Patients with well-managed rare chronic diseases such as hemophilia maintain a stable health state and health-related quality of life (HrQoL) that may be affected by acute events. Longitudinal HrQoL assessments analyzed using multivariate multilevel (MVML) modelling can determine the impact of such events on individuals (within-person effect) and identify factors influencing within-population differences (between-person effect). To demonstrate the application of MVML modelling in a longitudinal study of HrQoL in hemophilia A. Using data on 136 adults and 125 children from a two-year observational cohort study of burden of illness in US hemophilia A patients, MVML modelling determined the effect of time-invariant (sociodemographic and clinical characteristics) and time-varying factors (bleeding frequency, emergency room visits, and missed work/school days) on within-person and between-person HrQoL changes. HrQoL was assessed using the SF-12 health survey (adults) and PedsQL inventory (children) at baseline, then every 6 months. In children, within-person (p < 0.0001) and between-person (p < 0.0001) psychosocial functioning was reduced by each additional bleed and missed day (within-person: p = 0.0089; between-person: p = 0.0060). Within-person physical functioning was reduced by each additional bleed (p < 0.0001), emergency room (ER) visit (p = 0.0284), and missed day (p = 0.0473). Between-persons, additional missed days (p < 0.0001) significantly decreased physical functioning. In adults, each additional missed day reduced SF-12 Health Survey mental (p = 0.0025) and physical (p = 0.0093) component summary scores. Each additional bleed also decreased physical component summary (PCS) significantly (p = 0.0093). This study demonstrated the applicability of MVML modelling in identifying time-invariant and time-varying factors influencing HrQoL in a rare chronic disease population. Small but significant within-person and between-person changes in HrQoL with each additional acute event experienced were identified, which if frequent, could have a large cumulative impact. The results suggest that MVML modelling may be applied to future studies of longitudinal change in HrQoL in other rare chronic disease populations.

[Social exclusion and discrimination of chronically mentally ill people in the Lodz region].

PubMed

Rasmus, Paweł; Nowaczyńska, Ewa; Stetkiewicz-Lewandowicz, Agnieszka; Rasmus, Alicja; Sobów, Tomasz

2013-11-01

Mental crisis exerts a negative effect on somatic, psychological and social functioning of a mentally ill person. Mental disease is often accompanied by factors increasing the social exclusion and discrimination of patients. Another problem is deeply rooted stereotypes and prejudices functioning in the public opinion, according to which people who suffer from mental disorder are considered insane and often dangerous for society. In Poland, thanks to, amongst others, the ESF (The European Social Fund) funds, it is possible to finance and implement research concerning social exclusion and discrimination of people who have experienced a mental crisis. The aim of the study was to evaluate the level of social exclusion and discrimination of people suffering from mental disorders from the Lodz region on the basis of seven points scale assessing their personal, occupational, and social functioning. MATERIAL AND METHODS; The study included a group of 101 patients with mental disorders. Participants were selected randomly from mental health institutions from the region of Lodz. To evaluate the problem of social exclusion in the group of patients a interview questionnaire was used. Social exclusion concerned people suffering from schizophrenia and psychosis, more than six years of illness, those with allocated disability pension, non-working and non-learning, with the lowest levels of education and maintaining a one-person household or living with one parent. Those who experienced the lowest degree of social exclusion were mainly people suffering from mood disorders, people with higher education, learning and working, living with both parents. Groups experiencing discrimination were mostly people with schizophrenia, disorders due to psychoactive substances, those with secondary and professional education, patients having a certificate of disability and maintaining a one-person household. Social exclusion of mentally ill people was mainly related to their low education, civic, social and economic activity. The problem of discrimination concerned 17% of the tested group. Half of participants of the study did not experience the discrimination effect.

Culture and Chronic Illness: Raising Children with Disabling Conditions in a Culturally Diverse World. Papers presented at an Invitational Conference (Racine, Wisconsin, June 1992).

ERIC Educational Resources Information Center

Pediatrics, 1993

1993-01-01

This special supplement presents two background papers, three working papers, and key recommendations from a conference on culture and chronic illness in childhood. The meeting had as its goal the identification of the state of knowledge on the interface among culture, chronic illness, child development, and family functioning, for the purpose of…

A shared respite—The meaning of place for family well-being in families living with chronic illness

PubMed Central

Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

2016-01-01

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as “a shared respite.” This main theme included three subthemes: “a place for relief,” “a place for reflection,” and “a place for re-creation.” These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places. PMID:26956097

A shared respite--The meaning of place for family well-being in families living with chronic illness.

PubMed

Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

2016-01-01

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as "a shared respite." This main theme included three subthemes: "a place for relief," "a place for reflection," and "a place for re-creation." These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places.

Systematic review of positive youth development programs for adolescents with chronic illness.

PubMed

Maslow, Gary R; Chung, Richard J

2013-05-01

The Positive Youth Development (PYD) framework has been successfully used to support at-risk youth. However, its effectiveness in fostering positive outcomes for adolescents with chronic illness has not been established. We performed a systematic review of PYD-consistent programs for adolescents with chronic illness. Data sources included PubMed, CINAHL, and PsychINFO. Guided by an analytic framework, we searched for studies of PYD-consistent programs serving adolescents and young adults aged 13 through 24 with chronic illness. References were screened iteratively with increasing depth until a focused cohort was obtained and reviewed in full. The authors separately reviewed the studies using structured analysis forms. Relevant study details were abstracted during the review process. Fifteen studies describing 14 programs were included in the analysis. Three comprehensive programs included all 3 core components of a PYD program, including opportunities for youth leadership, skill building, and sustained connections between youth and adults. Four programs were primarily mentoring programs, and 7 others focused on youth leadership. Programs served youth with a variety of chronic illnesses. The quality and type of evaluation varied considerably, with most reporting psychosocial outcomes but only a few including medical outcomes. The PYD-consistent programs identified in this review can serve as models for the development of youth development programs for adolescents with chronic illness. Additional study is needed to evaluate such programs rigorously with respect to both psychosocial and health-related outcomes. PYD-consistent programs have the potential to reach youth with chronic illness and promote positive adult outcomes broadly.

Psychological interventions for mental health disorders in children with chronic physical illness: a systematic review.

PubMed

Bennett, Sophie; Shafran, Roz; Coughtrey, Anna; Walker, Susan; Heyman, Isobel

2015-04-01

Children with chronic physical illness are significantly more likely to develop common psychiatric symptoms than otherwise healthy children. These children therefore warrant effective integrated healthcare yet it is not established whether the known, effective, psychological treatments for symptoms of common childhood mental health disorders work in children with chronic physical illness. EMBASE, MEDLINE, PsycINFO and CINAHL databases were searched with predefined terms relating to evidence-based psychological interventions for psychiatric symptoms in children with chronic physical illness. We included all studies (randomised and non-randomised designs) investigating interventions aimed primarily at treating common psychiatric symptoms in children with a chronic physical illness in the review. Two reviewers independently assessed the relevance of abstracts identified, extracted data and undertook quality analysis. Ten studies (209 children, including 70 in control groups) met the criteria for inclusion in the review. All studies demonstrated some positive outcomes of cognitive behavioural therapy for the treatment of psychiatric symptoms in children with chronic physical illness. Only two randomised controlled trials, both investigating interventions for symptoms of depression, were found. There is preliminary evidence that cognitive behavioural therapy has positive effects in the treatment of symptoms of depression and anxiety in children with chronic physical illness. However, the current evidence base is weak and fully powered randomised controlled trials are needed to establish the efficacy of psychological treatments in this vulnerable population. 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.

Post-millennial trends of socioeconomic inequalities in chronic illness among adults in Germany.

PubMed

Hoebel, Jens; Kuntz, Benjamin; Moor, Irene; Kroll, Lars Eric; Lampert, Thomas

2018-03-27

Time trends in health inequalities have scarcely been studied in Germany as only few national data have been available. In this paper, we explore trends in socioeconomic inequalities in the prevalence of chronic illness using Germany-wide data from four cross-sectional health surveys conducted between 2003 and 2012 (n = 54,197; ages 25-69 years). We thereby expand a prior analysis on post-millennial inequality trends in behavioural risk factors by turning the focus to chronic illness as the outcome measure. The regression-based slope index of inequality (SII) and relative index of inequality (RII) were calculated to estimate the extent of absolute and relative socioeconomic inequalities in chronic illness, respectively. The results for men revealed a significant increase in the extent of socioeconomic inequalities in chronic illness between 2003 and 2012 on both the absolute and relative scales (SII 2003  = 0.06, SII 2012  = 0.17, p-trend = 0.013; RII 2003  = 1.18, RII 2012  = 1.57, p-trend = 0.013). In women, similar increases in socioeconomic inequalities in chronic illness were found (SII 2003  = 0.05, SII 2012  = 0.14, p-trend = 0.022; RII 2003  = 1.14, RII 2012  = 1.40, p-trend = 0.021). Whereas in men this trend was driven by an increasing prevalence of chronic illness in the low socioeconomic group, the trend in women was predominantly the result of a declining prevalence in the high socioeconomic group.

The experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings: a feminist poststructural approach: A qualitative study that explores negotiation of patient care between patients and chronically ill patients in hospital settings.

PubMed

Griscti, Odette; Aston, Megan; Martin-Misener, Ruth; Mcleod, Deborah; Warner, Grace

2016-07-01

The aim of this study was to understand the experiences of chronically ill patients and registered nurse in negotiating patient care in hospital. Specifically, we explored how social and institutional discourses shaped power relations and negotiation of patient care. Current literature indicates that although nurses embrace this notion, such partnerships are not easily implemented. Most existing studies focus on the role of the nurse as the leader of the partnership with little attention paid to how social and institutional values, beliefs and practices shape nurse/patient power relations; or how these relationships are negotiated between nurses and patients. The theoretical and methodological approaches used in this study are based on the precepts of Foucault and feminist poststructural theorists. In depth interviews were conducted with eight chronically ill patients and 10 registered nurses. Both nurses and patients commented about the relationships that develop between nurses and chronically ill patients and how these relationships facilitate negotiation of patient care. Both parties described challenging moments and how institutional discourses may hinder positive negotiations of care. In this paper we highlight three themes that emerged: getting to know each other, they are not the sickest patients and finding time to listen. This study offers an innovative way of unpacking negotiation of care between chronically ill patients and registered nurses. It exposes how social and institutional discourses play a pivotal role in shaping negotiations between nurses and chronically ill patients. Negotiating care with chronically ill patients is not as asymmetric as portrayed in some of the literature and tends to be based on mutual agreements between nurses and patients. Nurses make it a point to listen to patients' needs and resist institutional discourses that preclude them from spending time with patients. © 2016 John Wiley & Sons Ltd.

The epidemiology of chronic critical illness in the United States*.

PubMed

Kahn, Jeremy M; Le, Tri; Angus, Derek C; Cox, Christopher E; Hough, Catherine L; White, Douglas B; Yende, Sachin; Carson, Shannon S

2015-02-01

The epidemiology of chronic critical illness is not well characterized. We sought to determine the prevalence, outcomes, and associated costs of chronic critical illness in the United States. Population-based cohort study using data from the United States Healthcare Costs and Utilization Project from 2004 to 2009. Acute care hospitals in Massachusetts, North Carolina, Nebraska, New York, and Washington. Adult and pediatric patients meeting a consensus-derived definition for chronic critical illness, which included one of six eligible clinical conditions (prolonged acute mechanical ventilation, tracheotomy, stroke, traumatic brain injury, sepsis, or severe wounds) plus at least 8 days in an ICU. None. Out of 3,235,741 admissions to an ICU during the study period, 246,151 (7.6%) met the consensus definition for chronic critical illness. The most common eligibility conditions were prolonged acute mechanical ventilation (72.0% of eligible admissions) and sepsis (63.7% of eligible admissions). Among patients meeting chronic critical illness criteria through sepsis, the infections were community acquired in 48.5% and hospital acquired in 51.5%. In-hospital mortality was 30.9% with little change over the study period. The overall population-based prevalence was 34.4 per 100,000. The prevalence varied substantially with age, peaking at 82.1 per 100,000 individuals 75-79 years old but then declining coincident with a rise in mortality before day 8 in otherwise eligible patients. Extrapolating to the entire United States, for 2009, we estimated a total of 380,001 cases; 107,880 in-hospital deaths and $26 billion in hospital-related costs. Using a consensus-based definition, the prevalence, hospital mortality, and costs of chronic critical illness are substantial. Chronic critical illness is particularly common in the elderly although in very old patients the prevalence declines, in part because of an increase in early mortality among potentially eligible patients.

Time spent on health related activities associated with chronic illness: a scoping literature review.

PubMed

Jowsey, Tanisha; Yen, Laurann; W, Paul Mathews

2012-12-03

The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA. Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised. Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved. While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.

The use of mixed methods in studying a chronic illness.

PubMed

Jason, Leonard A; Reed, Jordan

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations.

The nature of youth care tasks in families experiencing chronic illness/disability: development of the Youth Activities of Caregiving Scale (YACS).

PubMed

Ireland, Michael James; Pakenham, Kenneth Ian

2010-07-01

The purpose of this study was to develop an empirically derived multi-item scale of care tasks performed by young people in the context of family illness/disability: the Youth Activities of Caregiving Scale (YACS). A total of 135 youngsters aged 10-24 years with an ill/disabled family member completed questionnaires. Factor analyses performed on the YACS yielded four factors, instrumental care, social/emotional care, personal/intimate care and domestic/household care, accounting for 57.78% of the variance. The internal reliabilities of all factors ranged from 0.74 to 0.92. Higher scores on the YACS related to higher youth age and several caregiving context variables (i.e. household type [single or dual-parent household], relationship with care-recipient and perceived choice in caregiving). Higher scores on the YACS also related to care-recipient illness/disability variables (onset, functional impairment, prognosis, predictability and illness/disability type). Strong positive correlations between the YACS and a conceptually related measure of young caregiving experiences provided good convergent validity data. Criterion validity was established with evidence that the YACS predicted youth adjustment in the domains of health and prosocial behaviour.

Patients, persons or partners? Involving those with chronic disease in their care.

PubMed

McWilliam, Carol L

2009-12-01

Self-care management is essential for effective chronic disease management. Yet prevailing approaches of healthcare practitioners often undermine the efforts of those who require on-going medical attention for chronic conditions, emphasizing their status as patients, failing to consider their larger life experience as people, and most importantly, failing to consider them as people with the potential to be partners in their care. This article explores two approaches for professional-patient interaction in chronic disease management, namely, patient-centred care and empowering partnering, illuminating how professionals might better interact with chronically ill individuals who seek their care. The opportunities, challenges, theory and research evidence associated with each approach are explored. The advantages of moving beyond patient-centred care to the empowering partnering approach are elaborated. For people with chronic disease, having the opportunity to engage in the social construction of their own health as a resource for everyday living, the opportunity to experience interdependence rather than dependence/independence throughout on-going healthcare, and the opportunity to optimize their potential for self-care management of chronic disease are important justifications for being involved in an empowering partnering approach to their chronic disease management.

Acceptance of Commercially Available Wearable Activity Trackers Among Adults Aged Over 50 and With Chronic Illness: A Mixed-Methods Evaluation.

PubMed

Mercer, Kathryn; Giangregorio, Lora; Schneider, Eric; Chilana, Parmit; Li, Melissa; Grindrod, Kelly

2016-01-27

Physical inactivity and sedentary behavior increase the risk of chronic illness and death. The newest generation of "wearable" activity trackers offers potential as a multifaceted intervention to help people become more active. To examine the usability and usefulness of wearable activity trackers for older adults living with chronic illness. We recruited a purposive sample of 32 participants over the age of 50, who had been previously diagnosed with a chronic illness, including vascular disease, diabetes, arthritis, and osteoporosis. Participants were between 52 and 84 years of age (mean 64); among the study participants, 23 (72%) were women and the mean body mass index was 31 kg/m(2). Participants tested 5 trackers, including a simple pedometer (Sportline or Mio) followed by 4 wearable activity trackers (Fitbit Zip, Misfit Shine, Jawbone Up 24, and Withings Pulse) in random order. Selected devices represented the range of wearable products and features available on the Canadian market in 2014. Participants wore each device for at least 3 days and evaluated it using a questionnaire developed from the Technology Acceptance Model. We used focus groups to explore participant experiences and a thematic analysis approach to data collection and analysis. Our study resulted in 4 themes: (1) adoption within a comfort zone; (2) self-awareness and goal setting; (3) purposes of data tracking; and (4) future of wearable activity trackers as health care devices. Prior to enrolling, few participants were aware of wearable activity trackers. Most also had been asked by a physician to exercise more and cited this as a motivation for testing the devices. None of the participants planned to purchase the simple pedometer after the study, citing poor accuracy and data loss, whereas 73% (N=32) planned to purchase a wearable activity tracker. Preferences varied but 50% felt they would buy a Fitbit and 42% felt they would buy a Misfit, Jawbone, or Withings. The simple pedometer had a mean acceptance score of 56/95 compared with 63 for the Withings, 65 for the Misfit and Jawbone, and 68 for the Fitbit. To improve usability, older users may benefit from devices that have better compatibility with personal computers or less-expensive Android mobile phones and tablets, and have comprehensive paper-based user manuals and apps that interpret user data. For older adults living with chronic illness, wearable activity trackers are perceived as useful and acceptable. New users may need support to both set up the device and learn how to interpret their data.

Acceptance of Commercially Available Wearable Activity Trackers Among Adults Aged Over 50 and With Chronic Illness: A Mixed-Methods Evaluation

PubMed Central

Mercer, Kathryn; Giangregorio, Lora; Schneider, Eric; Chilana, Parmit; Li, Melissa

2016-01-01

Background Physical inactivity and sedentary behavior increase the risk of chronic illness and death. The newest generation of “wearable” activity trackers offers potential as a multifaceted intervention to help people become more active. Objective To examine the usability and usefulness of wearable activity trackers for older adults living with chronic illness. Methods We recruited a purposive sample of 32 participants over the age of 50, who had been previously diagnosed with a chronic illness, including vascular disease, diabetes, arthritis, and osteoporosis. Participants were between 52 and 84 years of age (mean 64); among the study participants, 23 (72%) were women and the mean body mass index was 31 kg/m2. Participants tested 5 trackers, including a simple pedometer (Sportline or Mio) followed by 4 wearable activity trackers (Fitbit Zip, Misfit Shine, Jawbone Up 24, and Withings Pulse) in random order. Selected devices represented the range of wearable products and features available on the Canadian market in 2014. Participants wore each device for at least 3 days and evaluated it using a questionnaire developed from the Technology Acceptance Model. We used focus groups to explore participant experiences and a thematic analysis approach to data collection and analysis. Results Our study resulted in 4 themes: (1) adoption within a comfort zone; (2) self-awareness and goal setting; (3) purposes of data tracking; and (4) future of wearable activity trackers as health care devices. Prior to enrolling, few participants were aware of wearable activity trackers. Most also had been asked by a physician to exercise more and cited this as a motivation for testing the devices. None of the participants planned to purchase the simple pedometer after the study, citing poor accuracy and data loss, whereas 73% (N=32) planned to purchase a wearable activity tracker. Preferences varied but 50% felt they would buy a Fitbit and 42% felt they would buy a Misfit, Jawbone, or Withings. The simple pedometer had a mean acceptance score of 56/95 compared with 63 for the Withings, 65 for the Misfit and Jawbone, and 68 for the Fitbit. To improve usability, older users may benefit from devices that have better compatibility with personal computers or less-expensive Android mobile phones and tablets, and have comprehensive paper-based user manuals and apps that interpret user data. Conclusions For older adults living with chronic illness, wearable activity trackers are perceived as useful and acceptable. New users may need support to both set up the device and learn how to interpret their data. PMID:26818775

Consumers, gag rules, and health plans: strategies for a patient-focused market.

PubMed

Etheredge, L; Jones, S B

1997-05-01

The "gag rule" controversy has become a symbol of new tensions and changing relationships among patients, physicians, and health plans. This paper offers a consumer-focused analysis of these fundamental issues from the point of view of a patient with a chronic illness. It starts with a case study of a specific individual and then considers the systemic incentives and other factors that lead to conflicts among patients, physicians, and health plans. This consumer focus invites the reader to consider managed care with the following question in mind: "What would you want for yourself it you were the patient?" The paper suggests that many private-sector initiatives, as well as government actions, could contribute to a better health care market. Among the reform strategies discussed are (a) professional responsibility and private-sector standards, (b) consumer assistance, and (c) government regulation. All of us, including persons with chronic illness, need a consumer-focused health system. So, too, do physicians and health plans that want to provide excellent care for all of their patients.

A total patient monitoring system for point-of-care applications

NASA Astrophysics Data System (ADS)

Whitchurch, Ashwin K.; Abraham, Jose K.; Varadan, Vijay K.

2007-04-01

Traditionally, home care for chronically ill patients and the elderly requires periodic visits to the patient's home by doctors or healthcare personnel. During these visits, the visiting person usually records the patient's vital signs and takes decisions as to any change in treatment and address any issues that the patient may have. Patient monitoring systems have since changed this scenario by significantly reducing the number of home visits while not compromising on continuous monitoring. This paper describes the design and development of a patient monitoring systems capable of concurrent remote monitoring of 8 patient-worn sensors: Electroencephalogram (EEG), Electrocardiogram (ECG), temperature, airflow pressure, movement and chest expansion. These sensors provide vital signs useful for monitoring the health of chronically ill patients and alerts can be raised if certain specified signal levels fall above or below a preset threshold value. The data from all eight sensors are digitally transmitted to a PC or to a standalone network appliance which relays the data through an available internet connection to the remote monitoring client. Thus it provides a real-time rendering of the patient's health at a remote location.

Do Flexible Goal Adjustment and Acceptance Help Preserve Quality of Life in Patients with Multiple Sclerosis?

PubMed

Van Damme, Stefaan; De Waegeneer, Annelies; Debruyne, Jan

2016-06-01

Goal regulation strategies such as flexible goal adjustment and acceptance are believed to be protective factors in persons with chronic illness, but research on their relative contributions to quality of life in multiple sclerosis (MS) is lacking. We aimed to test the idea that acceptance and flexible goal adjustment (in contrast to tenacious goal pursuit) may help preserve the quality of life in persons with MS. A sample of 117 patients with MS was recruited. They completed questionnaires measuring quality of life (physical functioning, psychological distress), acceptance, flexible goal adjustment, and tenacious goal pursuit. Acceptance significantly accounted for variance in all three indexes of quality of life, beyond the effects of demographic and illness characteristics. The role of goal regulation style was less clear. Flexible goal adjustment significantly accounted for psychological well-being only. Surprisingly, tenacious goal pursuit predicted better psychological functioning and less psychological distress. No support was found for the hypothesis that acceptance and flexible goal adjustment would moderate the relation between illness severity and quality of life. The findings suggest the potential importance of acceptance in understanding MS patients' quality of life, although its hypothesized protective function could not be confirmed. Further conceptual work on acceptance and goal regulation style is needed, as well as prospective work investigating their causal status.

Strategies for Coping in a Complex World: Adherence Behavior Among Older Adults with Chronic Illness

PubMed Central

Ross-Degnan, Dennis; Adams, Alyce S.; Safran, Dana Gelb; Soumerai, Stephen B.

2007-01-01

Background Increasing numbers of medicines increase nonadherence. Little is known about how older adults manage multiple medicines for multiple illnesses. Objectives To explore how older adults with multiple illnesses make choices about medicines. Design Semistructured interviews with older adults taking several medications. Accounts of respondents’ medicine-taking behavior were collected. Participants Twenty community-dwelling seniors with health insurance, in Eastern Massachusetts, aged 67–90, (4–12 medicines, 3–9 comorbidities). Approach Qualitative analysis using constant comparison to explain real choices made about medicines in the past (“historical”) and hypothetical (“future”) choices. Results Respondents reported both past (“historical”) choices and hypothetical (“future”) choices between medicines. Although people discussed effectiveness and future risk of the disease when prompted to prioritize their medicines (future choices), key factors leading to nonadherence (historical choices) were costs and side effects. Specific choices were generally dominated by 1 factor, and respondents rarely reported making explicit trade-offs between different factors. Factors affecting 1 choice were not necessarily the same as those affecting another choice in the same person. There was no evidence of “adherent” personalities. Conclusion Prescribing a new medicine, a change in provider or copayment can provoke new choices about both new and existing medications in older adults with multiple morbidities. PMID:17406952

[The host community of a child with food allergies: the personalized care project (PCP)].

PubMed

Rancé, F

2010-12-01

The personalized care project (PCP) can manage allergic emergencies that may occur during school hours. Other objectives are to facilitate academic achievement, social and professional integration of children and adolescents with chronic illness such as food allergy, by promoting education through certain changes. The PCP is derived from official files including Circular N(o) 2003-135 of September 8 and the inter-ministerial circular of 25 June 2001. The family must request a protocol with the host school principal or school head. Then, the doctor of Education organizes the drafting of the document based on information provided by the physician (or allergist). Copyright © 2010 Elsevier Masson SAS. All rights reserved.

Impaired self-awareness in human addiction: deficient attribution of personal relevance.

PubMed

Moeller, Scott J; Goldstein, Rita Z

2014-12-01

Compromised self-awareness of illness-related deficits and behaviors in psychopathology (e.g., schizophrenia) has been associated with deficient functioning of cortical midline regions including the ventromedial prefrontal cortex (vmPFC), implicated in personal relevance. Here, we review and critically analyze recent evidence to suggest that vmPFC abnormalities could similarly underlie deficient tagging of personal relevance in drug addiction, evidenced by a constellation of behaviors encompassing drug-biased attention, negative outcome insensitivity, self-report/behavior dissociation, and social inappropriateness. This novel framework might clarify, for example, why drug-addicted individuals often ruin long-standing relationships or forego important job opportunities while continuing to engage in uncontrolled drug-taking. Therapeutic interventions targeting personal relevance and associated vmPFC functioning could enhance self-awareness and facilitate more adaptive behavior in this chronically relapsing psychopathology. Copyright © 2014 Elsevier Ltd. All rights reserved.

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

PubMed Central

Cramm, Jane Murray; Nieboer, Anna Petra

2013-01-01

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

Program for the Chronically Ill.

ERIC Educational Resources Information Center

Schoenherr, Arline; Schnarr, Barbara

The program for chronically ill students in the Detroit public schools is described. Forms are presented listing needed information and implications for teachers of the following conditions: diabetes, sickle cell anemia, chronic renal failure, congenital heart disease, hemophilia, rheumatoid arthritis, asthma, leukemia, and cystic fibrosis. The…

Psychosocial Impact of Terminal Chronic Illness.

ERIC Educational Resources Information Center

Chubon, Robert A.

1988-01-01

Development of a terminal chronic illness creates a spectrum of problems which call for counseling interventions to assist in the individual's adjustment. This overview, intended to raise the consciousness of rehabilitation counselors, outlines the three stages of terminal illness, followed by an examination of resulting lifestyle and relationship…

Exploring views on satisfaction with life in young children with chronic illness: an innovative approach to the collection of self-report data from children under 11.

PubMed

Christie, Deborah; Romano, Gabriella; Barnes, Jacqueline; Madge, Nicola; Nicholas, David B; Koot, Hans M; Armstrong, Daniel F; Shevlin, Mark; Kantaris, Xenya; Khatun, Hasina; Sutcliffe, Alastair G

2012-01-01

The objective of this study was to explore young children's views on the impact of chronic illness on their life in order to inform future development of a patient-based self-report health outcome measure. We describe an approach to facilitating self-report views from young children with chronic illness. A board game was designed in order to obtain qualitative data from 39 children with a range of chronic illness conditions and 38 healthy controls ranging in age from 3 to 11 years. The format was effective in engaging young children in a self-report process of determining satisfaction with life and identified nine domains. The board game enabled children aged 5-11 years with chronic illness to describe the effects of living with illness on home, family, friends, school and life in general. It generated direct, non-interpreted material from children who, because of their age, may have been considered unable or limited their ability to discuss and describe how they feel. Obtaining this information for children aged 4 and under continues to be a challenge.

The efficacy of a senior outreach program in the reduction of hospital readmissions and emergency department visits among chronically ill seniors.

PubMed

Prior, Michael K; Bahret, Beverly A; Allen, Reva I; Pasupuleti, Sudershan

2012-01-01

This study reports on the effectiveness of a community-based senior outreach program in decreasing rehospitalizations and emergency department visits among chronically ill seniors. Participants had been repeatedly hospitalized with chronic illnesses and were subsequently served in an in-home program designed to address their psychosocial and medical needs. Participation in the program was found to be related to lower hospital readmission rates and emergency department usage. Clients also reported decreased financial concerns and depression and anxiety and increased social support. The study adds to the growing body of work supporting community-based programs as effective strategies for decreasing health care usage and improving quality of life for chronically ill seniors.

Within the web: the family-practitioner relationship in the context of chronic childhood illness.

PubMed

Dickinson, Annette R; Smythe, Elizabeth; Spence, Deb

2006-12-01

This hermeneutic phenomenological study explores the relationship between health professionals and families who have a child with a chronic illness. Study participants included 10 family groups who had a child with a chronic illness and 12 practitioners from the disciplines of nursing, medicine, dietetics, physiotherapy and speech therapy. Data were collected by narrative audiotaped interviewing. The results of this study revealed that chronic childhood illness 'throws' families and practitioners together into a web of relationships, which must work for the sake of the child. However, children are usually excluded from the relationship. To understand and manage the child's illness, practitioners and families 'go around' and act 'in-between' relationships. While the quality of the relationship from the family perspective is not essential, relationships are more successful when practitioners recognize the uniqueness of each family web. The nature of the relationship is often simple, yet it coexists with complexity.

Illness representations as mediators of the relationship between dispositional optimism and depression in patients with chronic tinnitus: a cross-sectional study.

PubMed

Vollmann, Manja; Scharloo, Margreet; Langguth, Berthold; Kalkouskaya, Natallia; Salewski, Christel

2013-01-01

Both dispositional optimism and illness representations are related to psychological health in chronic patients. In a group of chronic tinnitus sufferers, the interplay between these two variables was examined. Specifically, it was tested to what extent the relationship between dispositional optimism and depression is mediated by more positive illness representations. The study had a cross-sectional design. One hundred and eighteen patients diagnosed with chronic tinnitus completed questionnaires assessing optimism (Life Orientation Test-Revised [LOT-R]), illness representations (Illness Perceptions Questionnaire-Revised [IPQ-R]) and depression (Hospital Anxiety and Depression Scale [HADS]). Correlation analysis showed that optimism was associated with more positive illness representations and lower levels of depression. Simple mediation analyses revealed that the relationship between optimism and depression was partially mediated by the illness representation dimensions consequences, treatment control, coherence, emotional representations and internal causes. A multiple mediation analysis indicated that the total mediation effect of illness representations is particularly due to the dimension consequences. Optimism influences depression in tinnitus patients both directly and indirectly. The indirect effect indicates that optimism is associated with more positive tinnitus-specific illness representations which, in turn, are related to less depression. These findings contribute to a better understanding of the interplay between generalised expectancies, illness-specific perceptions and psychological adjustment to medical conditions.

Using Freire's Participatory Educational Method to Understand the Experience of Living With Chronic Illness in the Current Age of Globalization.

PubMed

Camargo Plazas, Maria del Pilar; Cameron, Brenda L

2015-06-01

Many approaches and efforts have been used to better understand chronic diseases worldwide. Yet, little is known about the meaning of living with chronic illness under the pressures of globalization and neoliberal ideologies. Through Freire's participatory educational method, this article presents an innovative approach to understanding the multiple dimensions of living with chronic illness. In this way, we hope to use an innovative approach to address the impact of globalization on the daily life of chronically ill people and thus expand to the body of knowledge on nursing. This article uses Freire's participatory educational method to understand the multiple dimensions of living with chronic illness. This qualitative study follows an interpretive inquiry approach and uses a critical hermeneutic phenomenological method and critical research methodologies. Five participants were recruited for this participatory educational activity. Data collection methods included digitally recorded semistructured individual interviews and a Freire's participatory educational method session. Data analysis included a thematic analysis. Participants reported lacking adequate access to healthcare services because of insurance policies; a general perception that they were an unwanted burden on the healthcare system; and a general lack of government support, advocacy, and political interest. This research activity assisted participants to gain a new critical perspective about the condition of others with chronic diseases and thus provided an enlightening opportunity to learn about the illnesses and experiences of others and to realize that others experienced the same oppression from the healthcare system. Participants became agents of change within their own families and communities. Chronic diseases cause many economic and social consequences in their victims. These findings urge us to move from merely acknowledging the difficulties of people who live with chronic illness in an age of globalization to taking the actions necessary to bring about healthcare, social, and political reform through a process of conscientization and mutual transformation.

A review of factors associated with mental health in siblings of children with chronic illness.

PubMed

Incledon, Emily; Williams, Lauren; Hazell, Trevor; Heard, Todd R; Flowers, Alexandra; Hiscock, Harriet

2015-06-01

This article reviews the literature on modifiable factors associated with mental health in siblings of children with chronic illness. Three clinical databases were searched. A total of 17 studies met the inclusion criteria. Several key themes emerged from the review. Better sibling mental health was associated with camp attendance, perceived parent/peer support, illness education and enhancing control through cognitive coping strategies and routine. Parental and sibling psychoeducation interventions and social support may enhance children's mental health when their sibling has a chronic illness. © The Author(s) 2013.

Economic hardship associated with managing chronic illness: a qualitative inquiry

PubMed Central

Jeon, Yun-Hee; Essue, Beverley; Jan, Stephen; Wells, Robert; Whitworth, Judith A

2009-01-01

Background Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness. Methods Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66). Content analysis guided the interpretation of data. Results The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in self-management and risk reduction behaviours. Factors exacerbating hardship included ineligibility for government support, co-morbidity, health service flexibility, and health literacy. Participants who were on multiple medications, from culturally and linguistically diverse or Indigenous backgrounds, and/or not in paid employment, experienced economic hardship more harshly and their management of chronic illness was jeopardised as a consequence. Economic hardship was felt among not only those ineligible for government financial supports but also those receiving subsidies that were insufficient to meet the costs of managing long-term illness over and above necessary daily living expenses. Conclusion This research provides insights into the economic stressors associated with managing chronic illness, demonstrating that economic hardship requires households to make difficult decisions between care and basic living expenses. These decisions may cause less than optimal health outcomes and increased costs to the health system. The findings support the necessity of a critical analysis of health, social and welfare policies to identify cross-sectoral strategies to alleviate such hardship and improve the affordability of managing chronic conditions. In a climate of global economic instability, research into the economic impact of chronic illness on individuals' health and well-being and their disease management capacity, such as this study, provides timely evidence to inform policy development. PMID:19818128

Prevalence, impact and cost of multimorbidity in a cohort of people with chronic pain in Ireland: a study protocol

PubMed Central

Slattery, Brian W; O'Connor, Laura; Haugh, Stephanie; Dwyer, Christopher P; O'Higgins, Siobhan; Caes, Line; Egan, Jonathan; McGuire, Brian E

2017-01-01

Introduction Multimorbidity (MM) refers to the coexistence of two or more chronic conditions within one person, where no one condition is considered primary. As populations age and healthcare provision improves, MM is becoming increasingly common and poses a challenge to the single morbidity approach to illness management, usually adopted by healthcare systems. Indeed, recent research has shown that 66.2% of the people in primary care in Ireland are living with MM. Healthcare usage and cost is significantly associated with MM, and additional chronic conditions lead to exponential increases in service usage and financial costs, and decreases in physical and mental well-being. Certain conditions, for example, chronic pain, are highly correlated with MM. This study aims to assess the extent, profile, impact and cost of MM among Irish adults with chronic pain. Methods and analysis Using cluster sampling, participants aged 18 years and over will be recruited from Irish pain clinics and provided an information package and questionnaire asking them to participate in our study at three time points, 1 year apart. The questionnaire will include our specially developed checklist to assess the prevalence and impact of MM, along with validated measures of quality of life, pain, depression and anxiety, and illness perception. Economic data will also be collected, including direct and indirect costs. Ethics and dissemination Ethical approval has been granted by the Research Ethics Committee of the National University of Ireland, Galway. Dissemination of results will be via journal articles and conference presentations. PMID:28100560

Association of housing first implementation and key outcomes among homeless persons with problematic substance use.

PubMed

Davidson, Clare; Neighbors, Charles; Hall, Gerod; Hogue, Aaron; Cho, Richard; Kutner, Bryan; Morgenstern, Jon

2014-11-01

Housing First is a supportive housing model for persons with histories of chronic homelessness that emphasizes client-centered services, provides immediate housing, and does not require treatment for mental illness or substance abuse as a condition of participation. Previous studies of Housing First have found reduced governmental costs and improved personal well-being among participants. However, variations in real-world program implementation require better understanding of the relationship between implementation and outcomes. This study investigated the effects of Housing First implementation on housing and substance use outcomes. Study participants were 358 individuals with histories of chronic homelessness and problematic substance use. Clients were housed in nine scatter-site Housing First programs in New York City. Program fidelity was judged across a set of core Housing First components. Client interviews at baseline and 12 months were used to assess substance use. Clients in programs with greater fidelity to consumer participation components of Housing First were more likely to be retained in housing and were less likely to report using stimulants or opiates at follow-up. Consistently implemented Housing First principles related to consumer participation were associated with superior housing and substance use outcomes among chronically homeless individuals with a history of substance use problems. The study findings suggest that program implementation is central to understanding the potential of Housing First to help clients achieve positive housing and substance use outcomes.

Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases

ERIC Educational Resources Information Center

Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris

2016-01-01

Introduction: This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies used by patients, and some health information behaviour practices may be associated with better coping and more positive perception of…

A Therapeutic Approach for Treating Chronic Illness and Disability among College Students

ERIC Educational Resources Information Center

Haemmelmann, Katie L.; McClain, Mary-Catherine

2013-01-01

Research in chronic illness and disability (CID) in college students has demonstrated that students with disabilities encounter more difficulties psychosocially than their nondisabled counterparts. Subsequently, these difficulties impact the ability of these students to successfully adapt. Using the illness intrusiveness model in combination with…

Coping strategies in episodic and chronic tension-type headache.

PubMed

Rollnik, J D; Karst, M; Fink, M; Dengler, R

2001-03-01

To study the importance of coping with illness strategies in tension-type headache (TTH). The pathophysiology of TTH is complex, and coping with illness strategies might contribute to the transformation to a chronic form. We examined 89 subjects (mean age, 45.6 +/- 14.8 years; range, 18 to 72 years) with episodic (n = 37) and chronic (n = 52) TTH. Patients were required to fill in a Freiburg Questionnaire of Coping with Illness (FQCI), a von Zerssen Depression Scale, quality-of-life questionnaires, and a headache home diary (over 4 weeks). In addition, pressure pain thresholds (temporal muscles) and total tenderness scores were obtained. Patients with chronic TTH exhibited poorer quality-of-life measures, slightly more depressive symptoms, and significantly stronger avoidance behavior and endurance strategies on FQCI scales F4 and F5 (P< .05). There was no difference between episodic and chronic TTH with respect to measures of muscle tenderness or pain thresholds. We conclude that disadvantageous coping with illness strategies might contribute to a transformation to chronic TTH.

Loving your child to death: Considerations of the care of chronically ill children and euthanasia in Emil Sher’s Mourning Dove

PubMed Central

Mukhida, Karim

2007-01-01

How do parents cope when their child is ill or dying, and when he or she is experiencing constant pain or suffering? What do parents think of the contributions that medical professionals make to the care of their chronically or terminally ill child? Is it possible for a parent to love a child so much that they wish their child to be dead? The purpose of the present paper is to explore these questions and aspects of the care of chronically or terminally ill children using Mourning Dove’s portrayal of one family’s attempt to care for their ill daughter. Mourning Dove, a play written by Canadian playwright Emil Sher, was inspired by the case of Saskatchewan wheat farmer Robert Latimer who killed his 12-year-old daughter, Tracy, who suffered with cerebral palsy and had begun to experience tremendous pain. Rather than focusing on the medical or legal aspects of the care of a chronically ill child, the play offers a glimpse into how a family copes with the care of such a child and the effect the child’s illness has on the family. The reading and examination of nonmedical literature, such as Mourning Dove, serves as a useful means for medical professionals to better understand how illness affects and is responded to by patients and their families. This understanding is a prerequisite for them to be able to provide complete care of children with chronic or terminal illnesses and their families. PMID:19043501

Self-management in patients with COPD: theoretical context, content, outcomes, and integration into clinical care.

PubMed

Kaptein, Ad A; Fischer, Maarten J; Scharloo, Margreet

2014-01-01

In this narrative review, we put self-management in the context of a 50-year history of research about how patients with COPD respond to their illness. We review a definition of self-management, and emphasize that self-management should be combined with disease management and the chronic care model in order to be effective. Reviewing the empirical status of self-management in COPD, we conclude that self-management is part and parcel of modern, patient-oriented biopsychosocial care. In pulmonary rehabilitation programs, self-management is instrumental in improving patients' functional status and quality of life. We conclude by emphasizing how studying the way persons with COPD make sense of their illness helps in refining self-management, and thereby patient-reported outcomes in COPD.

Self-management in patients with COPD: theoretical context, content, outcomes, and integration into clinical care

PubMed Central

Kaptein, Ad A; Fischer, Maarten J; Scharloo, Margreet

2014-01-01

In this narrative review, we put self-management in the context of a 50-year history of research about how patients with COPD respond to their illness. We review a definition of self-management, and emphasize that self-management should be combined with disease management and the chronic care model in order to be effective. Reviewing the empirical status of self-management in COPD, we conclude that self-management is part and parcel of modern, patient-oriented biopsychosocial care. In pulmonary rehabilitation programs, self-management is instrumental in improving patients’ functional status and quality of life. We conclude by emphasizing how studying the way persons with COPD make sense of their illness helps in refining self-management, and thereby patient-reported outcomes in COPD. PMID:25214777

Pilot undergraduate course teaches students about chronic illness in children: an educational intervention study.

PubMed

Montenegro, Roberto E; Birnie, Krista D; Fisher, Paul Graham; Dahl, Gary V; Binkley, John; Schiffman, Joshua D

2014-01-01

Recent data question whether medical education adequately prepares physicians to care for the growing number of children with chronic medical conditions. We describe a 10-week course designed to provide undergraduate students with the knowledge and skills required to understand and care for children with chronic or catastrophic illnesses. The course presented the illness experience from the child's perspective and thus presented information in a manner that was efficient, conducive, and memorable. The curriculum was designed like a graduate-level seminar that included workshops, lectures, readings, writing, and lively discussions. This is an educational intervention study that used survey data to assess changes in attitudes among and between participants completing this course versus students not exposed to this course. We used Somers' D test and Fisher's z-transformation to perform both pre- and post-nonparametric comparisons. Course participants were more likely to change their attitudes and agree that chronically ill children "feel comfortable talking with their peers about their condition" (P=0.003) and less likely to agree that these children "want to be treated differently," "want more sympathy," or "care less about romantic relationships" (P = 0.003, 0.002 and 0.02, respectively). Controls were more likely to continue to agree that chronically ill children "want to be treated differently" (P = 0.009) and "care less about romantic relationships" (P = 0.02), and less likely to agree that these children "talk openly" or "feel comfortable talking with their peers about their condition" (P = 0.04). This classroom-based course serves as a feasible and cost-effective model for universities and medical schools to aid in improving student attitudes toward treating chronically ill children. The course provides the unique opportunity to learn directly from those who care for and those who have lived with chronic illness.

Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta-review.

PubMed

Lum, A; Wakefield, C E; Donnan, B; Burns, M A; Fardell, J E; Marshall, G M

2017-09-01

Serious chronic illness can have a detrimental effect on school attendance, participation and engagement, leaving affected students at risk of failing to meet their developmental potential. An improved understanding of factors that help to explain or mitigate this risk can help educators and health professionals deliver the most effective support. This meta-review critiqued the available evidence examining the link between six chronic illnesses (asthma, cancer, chronic kidney diseases, heart diseases, cystic fibrosis and gastrointestinal diseases) and children's and adolescents' school experiences and outcomes, as well as investigating the medical, school, psychosocial and sociodemographic factors that are linked to poorer or better school outcomes. We searched CINAHL, Cochrane Database, EMBASE, ERIC, MEDLINE, ProQuest Theses and Dissertations, and PsycINFO (2000-2015). Systematic and narrative reviews, and meta-analyses, of original studies examining students' subjective school experiences and objective school outcomes were eligible. We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses criteria to critically appraise all systematic reviews. The Grading of Recommendations Assessment, Development, and Evaluation system guided our recommendations for practice and research. Eighteen reviews of 172 studies including more than 40 000 students were eligible. Therefore, we chose to conduct a meta-review to provide an overview of the literature on the relationship between chronic illness and school experiences and outcomes. We also explored the associated medical, school, psychosocial and sociodemographic factors affecting the relationship between illness and school experiences and outcomes. Students with chronic illness demonstrate mixed school experiences and outcomes that are often worse than students without chronic illness. Modifiable factors, such as students' engagement with school, may be novel yet appropriate targets of educational support to ensure that these students reach their full schooling potential. © 2017 John Wiley & Sons Ltd.

“You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions

PubMed Central

Witteman, Holly O; Hafeez, Baria; Provencher, Thierry; Van de Graaf, Mary; Wei, Esther

2015-01-01

Background Consumer health information technologies (HIT) that encourage self-tracking, such as diet and fitness tracking apps and disease journals, are attracting widespread interest among technology-oriented consumers (such as “quantified self” advocates), entrepreneurs, and the health care industry. Such electronic technologies could potentially benefit the growing population of patients with multiple chronic conditions (MCC). However, MCC is predominantly a condition of the elderly and disproportionately affects the less affluent, so it also seems possible that the barriers to use of consumer HIT would be particularly severe for this patient population. Objective Our aim was to explore the perspectives of individuals with MCC using a semistructured interview study. Our research questions were (1) How do individuals with MCC track their own health and medical data? and (2) How do patients and providers perceive and use patient-tracked data? Methods We used semistructured interviews with patients with multiple chronic diseases and providers with experience caring for such patients, as well as participation in a diabetes education group to triangulate emerging themes. Data were analyzed using grounded theory and thematic analysis. Recruitment and analysis took place iteratively until thematic saturation was reached. Results Interviews were conducted with 22 patients and 7 health care providers. The patients had an average of 3.5 chronic conditions, including type 2 diabetes, heart disease, chronic pain, and depression, and had regular relationships with an average of 5 providers. Four major themes arose from the interviews: (1) tracking this data feels like work for many patients, (2) personal medical data for individuals with chronic conditions are not simply objective facts, but instead provoke strong positive and negative emotions, value judgments, and diverse interpretations, (3) patients track for different purposes, ranging from sense-making to self-management to reporting to the doctor, and (4) patients often notice that physicians trust technologically measured data such as lab reports over patients’ self-tracked data. Conclusions Developers of consumer health information technologies for data tracking (such as diet and exercise apps or blood glucose logs) often assume patients have unlimited enthusiasm for tracking their own health data via technology. However, our findings potentially explain relatively low adoption of consumer HIT, as they suggest that patients with multiple chronic illnesses consider it work to track their own data, that the data can be emotionally charged, and that they may perceive that providers do not welcome it. Similar themes have been found in some individual chronic diseases but appeared more complex because patients often encountered “illness work” connected to multiple diseases simultaneously and frequently faced additional challenges from aging or difficult comorbidities such as chronic pain, depression, and anxiety. We suggest that to make a public health impact, consumer HIT developers should engage creatively with these pragmatic and emotional issues to reach an audience that is broader than technologically sophisticated early adopters. Novel technologies are likely to be successful only if they clearly reduce patient inconvenience and burden, helping them to accomplish their “illness work” more efficiently and effectively. PMID:26290186

The consequences of Campylobacter infection.

PubMed

O'Brien, Sarah J

2017-01-01

The purpose of this review is to provide an update on the clinical, public health and economic consequences of Campylobacter infection. Campylobacter is a leading bacterial cause of food-related illness. Its importance is enhanced by the chronic sequelae that can result from acute infection. Recent advances include a new clinical classification system for neurological sequelae with the aim of speeding accurate diagnosis and appropriate treatment, a better understanding of the mechanisms underlying postinfectious functional gastrointestinal disorders, the emergence of Campylobacter concisus and Campylobacter showae as potential aetiological agents in inflammatory bowel disease, a new mechanism for antimicrobial resistance in campylobacters and a better appreciation of the economic costs. Campylobacter infection is very common and can lead to serious chronic sequelae and considerable personal, healthcare and societal costs.

Race, unemployment rate, and chronic mental illness: a 15-year trend analysis.

PubMed

Lo, Celia C; Cheng, Tyrone C

2014-07-01

Before abating, the recession of the first decade of this century doubled the US unemployment rate. High unemployment is conceptualized as a stressor having serious effects on individuals' mental health. Data from surveys administered repeatedly over 15 years (1997-2011) described changes over time in the prevalence of chronic mental illness among US adults. The data allowed us to pinpoint changes characterizing the White majority--but not Black, Hispanic, or Asian minorities--and to ask whether such changes were attributable to economic conditions (measured via national unemployment rates). We combined 1.5 decades' worth of National Health Interview Survey data in one secondary analysis. We took social structural and demographic factors into account and let adjusted probability of chronic mental illness indicate prevalence of chronic mental illness We observed, as a general trend, that chronic mental illness probability increased as the unemployment rate rose. A greater increase in probability was observed for Blacks than Whites, notably during 2007-2011, the heart of the recession Our results confirmed that structural risk posed by the recent recession and by vulnerability to the recession's effects was differentially linked to Blacks. This led to the group's high probability of chronic mental illness, observed even when individual-level social structural and demographic factors were controlled. Future research should specify the particular kinds of vulnerability that created the additional disadvantage experienced by Black respondents.

Experiences of coexisting with chronic illnesses among elderly women in communities.

PubMed

Chang, Yu-Mei; Tsao, Lee-Ing; Huang, Min-His

2014-01-01

Based on the increasing numbers of women in the aging population, the health of women will become critical in the future. Our purpose in this study was to analyze the experiences of elderly women with chronic illness. Twelve elderly Taiwanese women participated in in-depth interviews. "Using my own power out of the disease shackle" was the core category referring to elderly women who coexist with chronic illnesses. Elderly women should be provided with individually targeted plans for disease management and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases.

Discovering untapped relationship potential with patients in telehealth: a qualitative interview study

PubMed Central

Wolf, Axel; Ali, Lilas; Sonntag, Steffen Mark; Ekman, Inger

2016-01-01

Objectives To explore factors that influence relationship building between telehealth professionals and patients with chronic illness over a distance, from a telehealth professional's perspective. Design 4 focus group interviews were conducted in June 2014. Digital recordings were transcribed verbatim and qualitative content analysis was performed using an iterative process of 3 coding rounds. Participants 20 telehealth professionals. Setting A telehealth service centre in the south of Germany that provided care for 12 000 patients with chronic heart failure across Germany. Results Non-video telehealth technology creates an atmosphere that fosters sharing of personal information and a non-judgemental attitude. This facilitates the delivery of fair and equal healthcare. A combination of a protocol-driven service structure along with shared team and organisational values provide a basis for establishing long-term healthcare relationships. However, each contact between a telehealth professional and a patient has an uncertain outcome and requires skilful negotiation of the relationship. Although care provision was personalised, there was scope to include the patients as ‘experts on their own illness’ to a greater extent as advocated by person-centred care. Currently, provision of person-centred care is not sufficiently addressed in telehealth professional training. Conclusions Telehealth offers a viable environment for the delivery of person-centred care for patients with long-standing disease. Current telehealth training programmes may be enhanced by teaching person-centred care skills. PMID:26936904

The private struggle of mothers with asthma: a gender perspective on illness management.

PubMed

van Mens-Verhulst, Janneke; Radtke, H Lorraine; Spence, Cheryl D

2004-07-01

Little attention has been paid to the specific problems of mothers with chronic illness. In this study of mothers with asthma, we asked the question: "how do they manage their illness"? We interviewed a purposive sample of four Dutch and four Canadian mothers living with asthma and varying in age and socio-economic class. Our analysis explored challenges the mothers face, three main strategies of non-medical illness management (prevention, normalization and mobilizing support), and the influence of age and class differences. Unhealthy cycles of living with asthma are identified and suggestions for mother-specific interventions are offered. By drawing attention to the gendered nature of chronic illness management and to patients' own experiences, a more useful frame of reference is created for professionals who do not have first hand knowledge of living with a chronic illness.

Mothers' perceptions of sibling adjustment and family life in childhood chronic illness.

PubMed

Gallo, A M; Breitmayer, B J; Knafl, K A; Zoeller, L H

1993-10-01

Researchers who study the effects of chronic illness on well siblings have generally focused on individual characteristics and their relationships with psychological adjustment. More recently, researchers suggest that sibling adjustment can be best understood within the context of the family. The purpose of this study was to examine variations in sibling behavioral adjustment in relation to mothers' perceptions of the illness experience and family life. Based on mothers' ratings on the behavior problem scale of the Child Behavior Checklist (CBCL), five siblings considered poorly adjusted and five very well-adjusted siblings were compared with respect to mothers' reports of individual family member's response to illness, illness management, parenting philosophy, presence of other stressors, availability of social supports, and impact of illness on family members and family life. Two major differences were found between mothers who rated healthy siblings either poorly or very well adjusted: (a) effects of illness on the healthy sibling, the ill child, and the marital relationship and (b) perceived controllability of the chronic illness. Devising ways of helping mothers feel confident in managing their child's illness is integral to creating an environment that promotes optimal development of their ill child and the child's siblings.

Association between nutritional status and subjective health status in chronically ill children attending special schools.

PubMed

Joosten, Koen; van der Velde, Kelly; Joosten, Pieter; Rutten, Hans; Hulst, Jessie; Dulfer, Karolijn

2016-04-01

In hospitalized children with a chronic disease, malnutrition was associated with a lower subjective health status. In outpatient children with a chronic disease attending special schools, this association has never been studied. The aim of this study was to assess the association between nutritional status and subjective health status in chronically ill children attending special schools. Overall, 642 children, median age 9.8 years (IQR 7.7-11.5), 60 % male, 72 % Caucasian, were included in this prospective study in nine special schools for chronically ill children in the Netherlands. Overall malnutrition was assessed as: acute malnutrition (<-2 SDS for weight for height (WFH)) and chronic malnutrition (<-2 SDS for height for age). The malnutrition risk was assessed with the nutritional risk-screening tool STRONGkids. Subjective health status was assessed with EQ-5D. Overall, 16 % of the children had overall malnutrition: 3 % acute and 13 % chronic malnutrition. Nurses reported 'some/severe problems' on the health status dimensions mobility (15 %), self-care (17 %), usual activities (19 %), pain/discomfort (22 %), and anxiety/depression (22 %) in chronically ill children. Their mean visual analogue scale score (VAS) was 73.0 (SD 11.1). Malnutrition, medication usage, and younger age explained 38 % of the variance of the VAS score. The presence of overall malnutrition in chronically ill children attending special schools was associated with lower subjective health status, especially in younger children and in those with chronic medication usage. Therefore, it is important to develop and use profile-screening tools to identify these children.

Childhood trauma and chronic illness in adulthood: mental health and socioeconomic status as explanatory factors and buffers.

PubMed

Mock, Steven E; Arai, Susan M

2010-01-01

Experiences of traumatic events in childhood have been shown to have long-term consequences for health in adulthood. With data from the 2005 Canadian Community Health Survey we take a life course perspective of cumulative disadvantage and examine the potential role of mental health and socioeconomic status in adulthood as multiple mediators of the link between childhood trauma and chronic illness in adulthood. Mental health and socioeconomic status are also tested as buffers against the typically adverse consequences of childhood trauma. The results suggest mental health and socioeconomic status partially explain the association of childhood trauma with chronic illness in adulthood, with mental health showing a stronger effect. In addition, an analysis of the interactions suggested higher socioeconomic status is a potential protective factor for those with a history of trauma. Results also suggest cumulative disadvantage following trauma may lead to chronic illness and suggest the need for public health expenditures on resources such as counseling and income supports to prevent or reduce psychological harm and chronic illness resulting from traumatic events.

77 FR 64597 - Proposed Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

Federal Register 2010, 2011, 2012, 2013, 2014

2012-10-22

... information needed to evaluate chronic gastrointestinal disorders in Persian Gulf War Veterans. DATES: Written... deployed in the first Persian Gulf War returned with persistent gastrointestinal symptoms, typical of... of Chronic Gastrointestinal Illness in Persian Gulf Veterans (Irritable Bowel Syndrome--Diarrhea...

Clinical Manifestations and the Natural History of HIV Infection in Adults

PubMed Central

Piot, Peter; Colebunders, Robert

1987-01-01

The clinical expression of infection with the human immunodeficiency virus (HIV) appears increasingly complex. It includes manifestations due to opportunistic diseases, as well as illness directly caused by HIV itself. Neurologic disease may include involvement of the brain, spinal cord and peripheral nerves and is probably directly caused by HIV, as is lymphocytic interstitial pneumonia. The etiology of the chronic diarrhea and a papular pruritic skin eruption associated with HIV infection is unclear. Between 2% and 8% of HIV-infected persons progress to the acquired immunodeficiency syndrome (AIDS) per year, with no apparent decrease in the rate of disease progression over time. A chronically activated state secondary to chronic microbial antigenic exposure may increase both the susceptibility to HIV infection and development of disease. Increased HIV gene expression, followed by persistent antigenemia, appear to be triggering factors in clinical deterioration. The role, if any, of environmental and/or genetic cofactors remains unclear. Images PMID:3433753

Modifiable correlates of illness perceptions in adults with chronic somatic conditions: A systematic review.

PubMed

Arat, Seher; De Cock, Diederik; Moons, Philip; Vandenberghe, Joris; Westhovens, René

2018-04-01

When individuals become ill, they want to understand and give meaning to their illness. The interpretation of this illness experience, or illness perception, is influenced by a range of individual, contextual, and cultural factors. Some of these factors may be modifiable by nursing interventions. The purpose of this systematic review was to investigate which modifiable factors were correlated with illness perceptions across studies of adults with different chronic somatic diseases. Using search terms tailored to each of four electronic databases, studies retrieved were reviewed by two independent evaluators, and each relevant article was assessed for methodological quality. Results were standardized by calculating correlation coefficients. Fifteen papers on illness perceptions in a variety of chronic diseases met the inclusion criteria. All used standardized measures of illness perceptions. We identified five groups of modifiable correlates of illness perceptions: illness-related factors, psychosocial factors, medication beliefs, information provision and satisfaction with information received, and quality of care. Our findings add to the knowledge of modifiable factors correlated with illness perceptions, including the importance of illness-related factors and psychosocial factors such as anxiety and depression. Knowledge of these correlates can facilitate understanding of patients' illness perceptions and might be useful in tailoring patient education programs. © 2018 Wiley Periodicals, Inc.

Perceived conflict in the couple and chronic illness management: preliminary analyses from the Quebec Health Survey.

PubMed

Soubhi, Hassan; Fortin, Martin; Hudon, Catherine

2006-10-19

The quality of the relationship with the spouse/partner appears crucial among patients with multiple chronic conditions where illness management is complex and multifaceted. This study draws on data from the Quebec Health Survey (QHS) to examine, among patients with one or more chronic conditions, the relation between marital status, the perceived conflict with the spouse/partner, and what the patients do to manage their illness as well as how they perceive their health. Data from the QHS 1998 were used. The sample included 7547 coupled adults who had one or more chronic health problems lasting more than 6 months. Independent variables included marital status, perceived conflict with the spouse/partner, and the number of chronic conditions. Illness management was defined broadly as a measure of the patient's efforts at self-care and an illness status indicator, including visits to the generalist and the specialist, the use of telephone health line in the last 12 months, self-rated general health, mental health, and a measure of psychological distress. Linkages between the independent variables and illness management were assessed for males and females separately with logistic regressions, while accounting for the survey sampling design and household clustering. Female patients who did not live with their partner and had never been married were more likely to report a negative perception of their general health and a higher psychological distress than those who were married. Perceived conflict with the partner was linked to a negative perception of mental health and a higher psychological distress among both men and women. Compared to patients with only one chronic condition, males who reported more than one chronic condition were more likely to have consulted a generalist prior to the survey and used the telephone health line, whereas females were more likely to have consulted a specialist. Both males and females with more than one chronic condition were more likely to have a negative perception of their general health and mental health. The study provides a useful preliminary measure of the importance of living arrangements and the quality of the couple relationship in chronic illness management broadly conceived as a measure of the patient's efforts at self-care and an illness status indicator. Results of this study prod us to examine more closely, within longitudinal designs, the influence of living arrangements and the presence of conflict in the couple on chronic illness management as well as the modifying effect of gender on these associations.

Open Access Integrated Therapeutic and Diagnostic Platforms for Personalized Cardiovascular Medicine

PubMed Central

Gladding, Patrick A.; Cave, Andrew; Zareian, Mehran; Smith, Kevin; Hussan, Jagir; Hunter, Peter; Erogbogbo, Folarin; Aguilar, Zoraida; Martin, David S.; Chan, Eugene; Homer, Margie L.; Shevade, Abhijit V.; Kassemi, Mohammad; Thomas, James D.; Schlegel, Todd T.

2013-01-01

It is undeniable that the increasing costs in healthcare are a concern. Although technological advancements have been made in healthcare systems, the return on investment made by governments and payers has been poor. The current model of care is unsustainable and is due for an upgrade. In developed nations, a law of diminishing returns has been noted in population health standards, whilst in the developing world, westernized chronic illnesses, such as diabetes and cardiovascular disease have become emerging problems. The reasons for these trends are complex, multifactorial and not easily reversed. Personalized medicine has the potential to have a significant impact on these issues, but for it to be truly successful, interdisciplinary mass collaboration is required. We propose here a vision for open-access advanced analytics for personalized cardiac diagnostics using imaging, electrocardiography and genomics. PMID:25562653

[The hemodialysed patient and his/her family caregiver. Comparison of perceptions of the chronic illness].

PubMed

Zanini, S; Ajmone, C; Margola, D; Busnach, G; Summa, I; Brunati, C; Cabibbe, M; Dal Col, A; De Ferrari, M E; Macaluso, M

2006-01-01

According to health psychology, the family caregiver (fc), i.e. the person who takes care of a hemodialysed patient, plays a pivotal role in coping with dialysis. This study explored and compared the lifestyle and the main needs of a cohort of hemodialysis patients, with reduced personal autonomy, to their fc, evaluating some psychological functional parameters, such as the perception of familial and social support, the psychological quality of life, the disability due to chronic illness, and the communication style. An anonymous multiple versions questionnaire, administered according to the caregiver's family relationship, was given for self assessment to 54 couples of patients and related fc (spouse, son/daughter and brother/sister), mean age 66 and 60, respectively; mean dialytic patients' age: 8 years and 6 months. The questionnaire consisted of three different sections, demographics, renal disease and psychological evaluation, with 4 standard scales (Social Support Satisfaction, Marital Communication, Psychological General Well-Being Index and Evaluation of Needs). A multivariate variance analysis (MANOVA) was subsequently performed. Women have a higher perception of their lifestyle change after dialysis, and, in general, patients communicate more easily with their fc than vice versa. Communication problems are more common in patients with a recent diagnosis. Patients and fc mostly need a better dialogue with their nephrologists and urge some psychological help. The quality of the relationship between physicians, patients and their families is a key element in the process of healing.

Swedish attitudes towards persons with mental illness.

PubMed

Högberg, Torbjörn; Magnusson, Annabella; Lützén, Kim; Ewalds-Kvist, Béatrice

2012-04-01

Negative and stigmatizing attitudes towards persons with mental illness must be dealt with to facilitate the sufferers' social acceptance. The present study aimed at survey Swedish attitudes towards persons with mental illness related to factors impacting these attitudes. New CAMI-S based on the questionnaire "Community Attitudes to Mental Illness in Sweden" ([CAMI] Taylor & Dear, 1981) was developed with nine behavioral-intention items and thus comprised a total of 29 items. Of 5000 Swedish people, 2391 agreed to complete the questionnaire. Principal component analysis rendered four factors reflecting attitudes towards the mentally ill: Intention to Interact, Fearful and Avoidant, Open-minded and Pro-Integration, as well as Community Mental Health Ideology. The factors were analyzed for trends in attitudes. By MANOVA, the experience of mental illness effects on mind-set towards the sufferers was assessed. By means of logistic regression, demographic factors contributing to positive attitudes towards persons with mental illness residing in the neighborhood were assessed. By New CAMI-S, the Swedish attitudes towards the mentally ill were surveyed and trends in agreement with living next to a person with mental illness were revealed in three out of four factors derived by principal component analysis. Aspects impacting the Swedish attitudes towards persons with mental illness and willingness to have him/her residing in the neighborhood comprised experience of mental illness, female gender, age (31-50 years), born in Scandinavia or outside Europe, only 9 years of compulsory school and accommodation in flat. The New CAMI-S came out as a useful tool to screen Swedish attitudes towards persons with mental illness. Most Swedes were prepared to live next to the mentally ill.

Mothers' Attributions Regarding the Behavior of Chronically Ill Children.

ERIC Educational Resources Information Center

Walker, Lynn S.

Parents of chronically ill children are faced with the difficult task of being vigilant and yet not overprotective of their children. The literature suggests that parents hold a positive bias toward their ill children. Attribution theory gives a framework in which to study parents' ideas about their children's behavior. A study was conducted to…

Health, Health Beliefs, and Body Image in School-Aged Girls.

ERIC Educational Resources Information Center

Johnson, Melissa Ramirez

When Spielberger's State-Trait Anxiety Scale was administered to 26 healthy and 26 chronically ill children, it was found that the chronically ill were significantly more anxious than the healthy. Results also suggested that the question of sex differences in children's emotional response to illness deserves further investigation in studies…

A Dyadic Approach: Applying a Developmental-Conceptual Model to Couples Coping with Chronic Illness

ERIC Educational Resources Information Center

Checton, Maria G.; Magsamen-Conrad, Kate; Venetis, Maria K.; Greene, Kathryn

2015-01-01

The purpose of the present study was to apply Berg and Upchurch's developmental-conceptual model toward a better understanding of how couples cope with chronic illness. Specifically, a model was hypothesized in which proximal factors (relational quality), dyadic appraisal (illness interference), and dyadic coping (partner support) influence…

Profiles of Chronic Illness Knowledge in a Community Sample of American Adults

ERIC Educational Resources Information Center

Jackson, Todd

2009-01-01

The author identified profiles of chronic illness knowledge (i.e., heart disease, cancer, diabetes) in a community sample of American adults and examined the effect of sociodemographic influences on relations of illness knowledge to health practices and well-being. Participants were 181 women and 120 men who completed measures of illness…

Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

PubMed Central

Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

2015-01-01

Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO’s definition of health, health was indeed one of the most important factors when the decision to return was made. PMID:26473899

Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

PubMed

Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

2015-10-12

Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO's definition of health, health was indeed one of the most important factors when the decision to return was made.

The use of mixed methods in studying a chronic illness

PubMed Central

Jason, Leonard A.; Reed, Jordan

2016-01-01

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations. PMID:27088060

Arthritis symptoms, the work environment, and the future: measuring perceived job strain among employed persons with arthritis.

PubMed

Gignac, Monique A M; Sutton, Deborah; Badley, Elizabeth M

2007-06-15

To develop a measure of job strain related to differing aspects of working with arthritis and to examine the demographic, illness, work context, and psychosocial variables associated with it. Study participants were 292 employed individuals with osteoarthritis or inflammatory arthritis. Participants were from wave 3 of a 4-wave longitudinal study examining coping and adaptation efforts used to remain employed. Participants completed an interview-administered structured questionnaire, including a Chronic Illness Job Strain Scale (CIJSS) and questions on demographic (e.g., age, sex), illness and disability (e.g., disease type, pain, activity limitations), work context (e.g., job type, job control), and psychosocial variables (e.g., arthritis-work spillover, coworker/managerial support, job perceptions). Principal component analysis and multiple linear regression were used to analyze the data. A single factor solution emerged for the CIJSS. The scale had an internal reliability of 0.95. Greater job strain was reported for future uncertainty, balancing multiple roles, and difficulties accepting the disease than for current workplace conditions. Participants with inflammatory arthritis, more frequent severe pain, greater workplace activity limitations, fewer hours of work, less coworker support, and greater arthritis-work spillover reported greater job strain. The findings underscore the diverse areas that contribute to perceptions of job strain and suggest that existing models of job strain do not adequately capture the stress experienced by individuals working with chronic illnesses or the factors associated with job strain. Measures similar to the CIJSS can enhance the tools researchers and clinicians have available to examine the impact of arthritis in individuals' lives.

Disability Risks of Chronic Illnesses and Impairments. Disability Statistics Report 2.

ERIC Educational Resources Information Center

LaPlante, Mitchell P.

This report provides results from an investigation of comparative disability risks of specific chronic physical and mental illnesses, diseases, and impairments. National estimates are presented of the risks of chronic health conditions causing disability--including activity limitation, work disability, and need for assistance in basic life…

A waterborne outbreak of Escherichia coli O157:H7 infections and hemolytic uremic syndrome: implications for rural water systems.

PubMed

Olsen, Sonja J; Miller, Gayle; Breuer, Thomas; Kennedy, Malinda; Higgins, Charles; Walford, Jim; McKee, Gary; Fox, Kim; Bibb, William; Mead, Paul

2002-04-01

In the summer of 1998, a large outbreak of Escherichia coli O157:H7 infections occurred in Alpine, Wyoming. We identified 157 ill persons; stool from 71 (45%) yielded E. coli O157:H7. In two cohort studies, illness was significantly associated with drinking municipal water (town residents: adjusted odds ratio=10.1, 95% confidence intervals [CI]=1.8-56.4; visitors attending family reunion: relative risk=9.0, 95% CI=1.3-63.3). The unchlorinated water supply had microbiologic evidence of fecal organisms and the potential for chronic contamination with surface water. Among persons exposed to water, the attack rate was significantly lower in town residents than in visitors (23% vs. 50%, p<0.01) and decreased with increasing age. The lower attack rate among exposed residents, especially adults, is consistent with the acquisition of partial immunity following long-term exposure. Serologic data, although limited, may support this finding. Contamination of small, unprotected water systems may be an increasing public health risk.

A Waterborne Outbreak of Escherichia coli O157:H7 Infections and Hemolytic Uremic Syndrome: Implications for Rural Water Systems1

PubMed Central

Miller, Gayle; Breuer, Thomas; Kennedy, Malinda; Higgins, Charles; Walford, Jim; McKee, Gary; Fox, Kim; Bibb, William; Mead, Paul

2002-01-01

In the summer of 1998, a large outbreak of Escherichia coli O157:H7 infections occurred in Alpine, Wyoming. We identified 157 ill persons; stool from 71 (45%) yielded E. coli O157:H7. In two cohort studies, illness was significantly associated with drinking municipal water (town residents: adjusted odds ratio=10.1, 95% confidence intervals [CI]=1.8-56.4; visitors attending family reunion: relative risk=9.0, 95% CI=1.3-63.3). The unchlorinated water supply had microbiologic evidence of fecal organisms and the potential for chronic contamination with surface water. Among persons exposed to water, the attack rate was significantly lower in town residents than in visitors (23% vs. 50%, p<0.01) and decreased with increasing age. The lower attack rate among exposed residents, especially adults, is consistent with the acquisition of partial immunity following long-term exposure. Serologic data, although limited, may support this finding. Contamination of small, unprotected water systems may be an increasing public health risk. PMID:11971769

The relationship of patient and spouse personality to cardiac patients' health: two observational studies of mediation and moderation.

PubMed

Karademas, Evangelos C; Tsaousis, Ioannis

2014-02-01

Little is known about the ways that personality is related to patient health, although there is some evidence that illness self-regulation as well as partner personality play a significant role. The aim of the two present studies was to examine the intra-personal (i.e., through illness representations) and the inter-personal (i.e., partner) effects of personality on cardiac patients' subjective health. One hundred fifteen patients participated in study 1; 75 patients and their spouses participated in study 2. The representations of illness consequences, personal control, and the attribution of illness to emotional causes mediated the relation of personality to health (first study). The relations of patients' extraversion, agreeableness, and conscientiousness to their health were statistically significant at the higher levels (+1 SD) of spouse corresponding traits (second study). Personality affects patients' health through illness representations (intrapersonal level), as well as by interacting with partner personality (interpersonal level).

Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study

PubMed Central

Jowsey, Tanisha; Jeon, Yun-Hee; Dugdale, Paul; Glasgow, Nicholas J; Kljakovic, Marjan; Usherwood, Tim

2009-01-01

Background In response to the escalating burden of chronic illness in Australia, recent health policies have emphasised the promotion of patient self-management and better preventive care. A notable omission from these policies is the acknowledgment that patients with chronic illness tend to have co-morbid conditions. Our objectives were: to identify the common challenges co-morbidity poses to patients and carers in their experiences of self-management; to detail the views and perceptions of health professionals about these challenges; and to discuss policy options to improve health care for people with co-morbid chronic illness. The method included semi-structured interviews and focus groups with 129 purposively sampled participants. Participants were people with Type 2 diabetes, chronic obstructive pulmonary disease and/or chronic heart failure as well as carers and health care professionals. Content analysis of the interview data was conducted using NVivo7 software. Results Patients and their carers found co-morbidity influenced their capacity to manage chronic illness in three ways. First, co-morbidity created barriers to patients acting on risk factors; second, it complicated the process of recognising the early symptoms of deterioration of each condition, and third, it complicated their capacity to manage medication. Conclusion Findings highlight challenges that patients with multiple chronic conditions face in relation to preventive care and self-management. Future clinical policy initiatives need to move away from single illness orientation toward strategies that meet the needs of people with co-morbid conditions and strengthen their capacity to self-manage. These patients will benefit directly from specialised education and services that cater to the needs of people with clusters of co-morbidities. PMID:19735576

42 CFR 431.51 - Free choice of providers.

Code of Federal Regulations, 2010 CFR

2010-10-01

... developmental disabilities or with chronic mental illness. This limitation may only be permitted so that the... chronic mental illness are capable of ensuring that those individuals receive needed services. (d...

Just regionalisation: rehabilitating care for people with disabilities and chronic illnesses.

PubMed

Secker, Barbara; Goldenberg, Maya J; Gibson, Barbara E; Wagner, Frank; Parke, Bob; Breslin, Jonathan; Thompson, Alison; Lear, Jonathan R; Singer, Peter A

2006-08-29

Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs - equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care - and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of - or revisions to - a regionalised health care strategy.

Contributions and Challenges of Non-Professional Patient Care: A Key Component of Contemporary Canadian Healthcare.

PubMed

Montague, Terrence; Gogovor, Amédé; Ahmed, Sara; Torr, Emily; Aylen, John; Marshall, Lucas; Henningsen, Nadine; Nemis-White, Joanna

2015-01-01

The Canadian public is aging. Population levels of excellent, or very good, health are decreasing, and the prevalence of chronic diseases is increasing. Timely access to caring and respectful care from health professionals, with supporting information transfer, are key qualities in patients' sense of centricity and hope for best outcomes. Data from the 2013-2014 Health Care in Canada (HCIC) survey reveal, however, that 38% of such patients do not always, or often, access this support. The lack of timely access may be one underlying driver for non-professional caregivers to contribute to the care, as well as the personal and financial management, of family members or friends with chronic disease. Previous HCIC surveys, in 2005, 2006 and 2007, reported non-professional caregivers' prevalence in the adult public at 21, 23 and 26%, respectively, compared with 19% in the 2013-2014 survey. In all the surveys, a notable feature of non-professional care providers has been their universality of contribution, across age, sex, geography and time. Caregivers pay, however, a price. They have a lower level of self-related health, a higher incidence of chronic illness and net-negative impacts on relationships, career and finances, including use of personal savings (53%) and necessity of quitting their job (12%). Conversely, they infrequently claim available tax (12%) or compassionate care (11%) benefits. Interestingly, non-professional caregivers work in team-care settings with health professionals more frequently (29%) than patients in the general population with chronic illnesses (18%). Nonetheless, their current levels of always, or often, receiving assisting support (46%) and information (53%) from health professionals are lower than the respective results reported by the general public (65% and 68%). In conclusion, non-professional patient care in Canada is a common, longstanding and not-for-profit enterprise. It is more likely driven by altruistic caring or sense of duty that balance, or overwhelm, its associated personal, medical and financial burdens. In the short term, practical opportunities for enhancement include broader recognition of caregivers' contributions, their improved access to professional support and communication and wider use of available governmental financial support. All are likely to enhance both patient-centred care and lessen the practical burdens of caregivers. Things can be better.

Integrating the ICF with positive psychology: Factors predicting role participation for mothers with multiple sclerosis.

PubMed

Farber, Ruth S; Kern, Margaret L; Brusilovsky, Eugene

2015-05-01

Being a mother has become a realizable life role for women with disabilities and chronic illnesses, including multiple sclerosis (MS). Identifying psychosocial factors that facilitate participation in important life roles-including motherhood-is essential to help women have fuller lives despite the challenge of their illness. By integrating the International Classification of Functioning, Disability, and Health (ICF) and a positive psychology perspective, this study examined how environmental social factors and positive personal factors contribute to daily role participation and satisfaction with parental participation. One hundred and 11 community-dwelling mothers with MS completed Ryff's Psychological Well-Being Scales, the Medical Outcome Study Social Support Survey, the Short Form-36, and the Parental Participation Scale. Hierarchical regression analyses examined associations between social support and positive personal factors (environmental mastery, self-acceptance, purpose in life) with daily role participation (physical and emotional) and satisfaction with parental participation. One-way ANOVAs tested synergistic combinations of social support and positive personal factors. Social support predicted daily role participation (fewer limitations) and greater satisfaction with parental participation. Positive personal factors contributed additional unique variance. Positive personal factors and social support synergistically predicted better function and greater satisfaction than either alone. Integrating components of the ICF and positive psychology provides a useful model for understanding how mothers with MS can thrive despite challenge or impairment. Both positive personal factors and environmental social factors were important contributors to positive role functioning. Incorporating these paradigms into treatment may help mothers with MS participate more fully in meaningful life roles. (c) 2015 APA, all rights reserved).

Paediatric chronic illness and educational failure: the role of emotional and behavioural problems.

PubMed

Layte, Richard; McCrory, Cathal

2013-08-01

Chronic illness in childhood is associated with worse educational outcomes. The association is usually explained via lowered cognitive development, decreased readiness to learn and school absence. However, this paper examines whether worse psychological adjustment may also play a role. We use data from the Growing Up in Ireland study, a cohort study, which collected data on 8,568 nine-year-old children through the Irish national school system using a two-stage sampling method. Maximum likelihood path analytic models are used to assess the direct effect of child chronic illness on reading and maths test scores and the mediating role of emotional and behavioural problems. In unadjusted analyses, children with a mental and behavioural condition scored 14.5 % points less on reading tests and 16.9 % points less on maths tests than their healthy peers. Children with non-mental and behavioural conditions scored 3 % points less on both tests, a significant difference. Mental and behavioural (OR, 9.58) and other chronic conditions (OR, 1.61) were significantly more likely to have 'high' levels of difficulties on the SDQ. Path analysis models showed that the association between chronic illness and educational test scores was completely mediated by emotional and behavioural problems controlling for school absence and bullying by peers. Child and adolescent chronic illness can have significant effects on educational development and a long-lasting impact on future life-chances. The psychological adjustment of the child is important in mediating the effect of chronic illness on educational outcomes. Interventions should target this developmental pathway.

Parenting stress among caregivers of children with chronic illness: a systematic review.

PubMed

Cousino, Melissa K; Hazen, Rebecca A

2013-09-01

To critically review, analyze, and synthesize the literature on parenting stress among caregivers of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96 studies was conducted. Results Caregivers of children with chronic illness reported significantly greater general parenting stress than caregivers of healthy children (d = .40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was associated with greater parental responsibility for treatment management and was unrelated to illness duration and severity across illness populations. Greater parenting stress was associated with poorer psychological adjustment in caregivers and children with chronic illness. Conclusion Parenting stress is an important target for future intervention. General and illness-specific measures of parenting stress should be used in future studies.

Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review.

PubMed

Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo; Husted, Gitte R

2017-01-01

This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient-doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns. © The Author(s) 2016.

Management of Chronic Kidney Disease Patients in the Intensive Care Unit: Mixing Acute and Chronic Illness.

PubMed

De Rosa, Silvia; Samoni, Sara; Villa, Gianluca; Ronco, Claudio

2017-01-01

Patients with chronic kidney disease (CKD) are at high risk for developing critical illness and for admission to intensive care units (ICU). 'Critically ill CKD patients' frequently develop an acute worsening of renal function (i.e. acute-on-chronic, AoC) that contributes to long-term kidney dysfunction, potentially leading to end-stage kidney disease (ESKD). An integrated multidisciplinary effort is thus necessary to adequately manage the multi-organ damage of those kidney patients and contemporaneously reduce the progression of kidney dysfunction when they are critically ill. The aim of this review is to describe (1) the pathophysiological mechanisms underlying the development of AoC kidney dysfunction and its role in the progression toward ESKD; (2) the most common clinical presentations of critical illness among CKD/ESKD patients; and (3) the continuum of care for CKD/ESKD patients from maintenance hemodialysis/peritoneal dialysis to acute renal replacement therapy performed in ICU and, vice-versa, for AoC patients who develop ESKD. © 2017 S. Karger AG, Basel.

The role of disease management programs in the health behavior of chronically ill patients.

PubMed

Cramm, Jane Murray; Adams, Samantha A; Walters, Bethany Hipple; Tsiachristas, Apostolos; Bal, Roland; Huijsman, Robbert; Rutten-Van Mölken, Maureen P M H; Nieboer, Anna Petra

2014-04-01

Investigate the effects of disease management program (DMP) implementation on physical activity, smoking, and physical quality of life among chronically ill patients. This study used a mixed-methods approach involving qualitative (35 interviews with project managers) and quantitative (survey of patients from 18 DMPs) data collection. Questionnaire response rates were 51% (2010; 2619/5108) at T0 and 47% (2011; 2191/4693) at T1. Physical activity and the percentage of smokers improved significantly over time, whereas physical quality of life declined. After adjusting for patients' physical quality of life at T0, age, educational level, marital status, and gender, physical activity at T0 (p<0.01), changes in physical activity (p<0.001), and percentage of smokers at T0 (p<0.05) predicted physical quality of life at T1. Project managers reported that DMPs improved patient-professional interaction. The ability to set more concrete targets improved patients' health behaviors. DMPs appear to improve physical activity among chronically ill patients over time. Furthermore, (changes in) health behavior are important for the physical quality of life of chronically ill patients. Redesigning care systems and implementing DMPs based on the chronic care model may improve health behavior among chronically ill patients. Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

Role of Theories in the Design of Web-Based Person-Centered Support: A Critical Analysis

PubMed Central

Ranerup, Agneta; Sparud-Lundin, Carina; Koinberg, Ingalill; Skärsäter, Ingela; Jenholt-Nolbris, Margaretha; Berg, Marie

2014-01-01

Objective. The aim of this study was to provide a critical understanding of the role of theories and their compatibility with a person-centered approach in the design and evaluation of web-based support for the management of chronic illness. Methods. Exploration of web-based support research projects focusing on four cases: (1) preschool children aged 4–6 with bladder dysfunction and urogenital malformation; (2) young adults aged 16–25 living with mental illness; (3) women with type 1 diabetes who are pregnant or in early motherhood; and (4) women who have undergone surgery for breast cancer. Data comprised interviews with research leaders and documented plans. Analysis was performed by means of a cross-case methodology. Results. The used theories concerned design, learning, health and well-being, or transition. All web support products had been developed using a participatory design (PD). Fundamental to the technology design and evaluation of outcomes were theories focusing on learning and on health and well-being. All theories were compatible with a person-centered approach. However, a notable exception was the relatively collective character of PD and Communities of Practice. Conclusion. Our results illustrate multifaceted ways for theories to be used in the design and evaluation of web-based support. PMID:26464860

Including Young Children With "New" Chronic Illnesses in an Early Childhood Education Setting.

ERIC Educational Resources Information Center

Fauvre, Mary

1988-01-01

Presents suggestions for successfully including young children with "new" life-threatening, chronic illnesses -- various types of cancer, heart, liver, and kidney diseases -- in early childhood education classes. (BB)

76 FR 74039 - Approaches to Reducing Sodium Consumption; Establishment of Dockets; Request for Comments, Data...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-11-30

... and other chronic illnesses; sodium consumption practices; motivation and barriers in reducing sodium... role of sodium in hypertension and other chronic illnesses; sodium consumption practices; motivation...

The Relationship of Chronic Medical Illnesses, Poor Health-Related Lifestyle Choices, and Health Care Utilization to Recovery Status in Borderline Patients over a Decade of Prospective Follow-up

PubMed Central

Keuroghlian, Alex S.; Frankenburg, Frances R.; Zanarini, Mary C.

2013-01-01

Background The interaction of borderline personality disorder (BPD) with physical health has not been well characterized. In this longitudinal study, we investigated the long-term relationship of chronic medical illnesses, health-related lifestyle choices, and health services utilization to recovery status in borderline patients over a decade of prospective follow-up. Method 264 borderline patients were interviewed concerning their physical health at 6-year follow-up in a longitudinal study of the course of BPD. This sample was then reinterviewed five times at two-year intervals over the next ten years. We defined recovery from BPD based on a Global Assessment of Functioning score of 61 or higher, which required BPD remission, one close relationship, and full-time competent and consistent work or school attendance. We controlled for potentially confounding effects of time-varying major depressive disorder. Results Never-recovered borderline patients were significantly more likely than ever-recovered borderline patients to have a medical syndrome, obesity, osteoarthritis, diabetes, urinary incontinence, or multiple medical conditions (p < 0.0063). They were also significantly more likely to report pack-per-day smoking, weekly alcohol use, no regular exercise, daily sleep medication use, or pain medication overuse (p < 0.0083). In addition, never-recovered borderline patients were significantly more likely than ever-recovered borderline patients to undergo a medical emergency room visit, medical hospitalization, X-ray, CT scan, or MRI scan (p < 0.0063). Conclusions Over a decade of prospective follow-up, failure to recover from BPD seems to be associated with a heightened risk of chronic medical illnesses, poor health-related lifestyle choices, and costly health services utilization. PMID:23856083

Reconstructing normality following the diagnosis of a childhood chronic disease: does "rare" make a difference?

PubMed

Germeni, Evi; Vallini, Isabella; Bianchetti, Mario G; Schulz, Peter J

2018-04-01

Living with a childhood chronic disease can be challenging, especially if the diagnosis involves a rare condition. This study sought to elucidate how the diagnosis of a rare disease, as compared to a common, chronic condition, may influence maternal experiences of childhood illness. We conducted face-to-face, semi-structured interviews with 26 mothers of children treated in a pediatric hospital in the province of Lecco, Italy. Half of the participants had a child diagnosed with Bartter syndrome (BS), and the rest had a child suffering from celiac disease (CD). Interviews were recorded, transcribed, and analyzed using an inductive thematic approach. We identified three main themes from the analysis of our data: (1) disrupted normality and the need to know, (2) reconstructing normality, and (3) acting "normal." Although most participants experienced the disclosure of diagnosis as a relief, processes that facilitated normality reconstruction in celiac families, notably access to appropriate information, social support, and personal contact with comparison others, were found to be important stressors for mothers living with BS. This comparative qualitative study provides evidence on how well-known problems associated with the rarity of childhood diseases impact on families' efforts to cope with the illness and regain a sense of normality. What is Known: • Families living with a rare disease have been found to experience a range of common problems, directly linked to the rarity of these pathologies. What is New: • Maximization of both emotional and instrumental social support, through provision of appropriate information or establishment of disease-specific support groups, could greatly contribute to rare disease families' efforts to cope with childhood illness and regain a sense of normality.

The College Experience for Students with Chronic Illness: Implications for Academic Advising

ERIC Educational Resources Information Center

Houman, Katie M.; Stapley, Janice C.

2013-01-01

A purposive sample (2 males, 3 females) of students (aged 18-29 years) with chronic illness completed standardized measures and a semi-structured interview. Content analysis of the interview data revealed two themes: stress exacerbating symptoms of illness and a desire for a support group on campus. Viewed through the theory of emerging adulthood,…

Imaginal Coping and Childhood Illness: How Children Relate to Treatments for Chronic Illness.

ERIC Educational Resources Information Center

Clark, Cindy Dell

This ethnographic study used multiple approaches to try to determine the emotional experience of young children (ages 5 to 8) with chronic illnesses. Forty-six children with severe asthma and diabetes were interviewed on two separate occasions using child-centered in-depth interviews that included play-based interviewing. The study also employed…

Alagille Syndrome: A Case Report Highlighting Dysmorphic Facies, Chronic Illness, and Depression

PubMed Central

Winthrop, Zachary A.; Salman, Rabia; Majeed, Salman

2016-01-01

Alagille syndrome is a rare multisystem disorder affecting the liver, heart, vertebrae, eyes, and face. Alagille syndrome shares multiple phenotypic variants of other congenital or chronic childhood illnesses such as DiGeorge syndrome, Down syndrome, spina bifida, type 1 diabetes mellitus, and cystic fibrosis. All of these chronic illnesses have well-established links to psychiatric conditions. There are few community resources for Alagille patients, as it is an extremely rare condition. Despite the overlap with other chronic childhood illnesses, the psychiatric manifestations of Alagille syndrome have not been previously discussed in literature. The current study is a case report of a twelve-year-old female hospitalized in our pediatric psychiatric hospital for suicidal ideation with intent and plan. The patient had major depressive disorder, anxiety, other specified feeding and eating disorder, and attention-deficit/hyperactive disorder. PMID:28018696

Peer Attachment, Perceived Parenting Style, Self-concept, and School Adjustments in Adolescents with Chronic Illness.

PubMed

Ahn, Jeong-Ah; Lee, Sunhee

2016-12-01

The purpose of this study was to identify how peer attachment and parenting style differentially affect self-concept and school adjustment in adolescents with and without chronic illness. A cross-sectional study using multiple group analysis on the Korean panel data was used. A nationwide stratified multistage cluster sampling method was used and the survey was conducted in 2013 on 2,092 first-year middle school students in Korea. We used standardized instruments by the National Youth Policy Institute to measure peer attachment, parenting style, self-concept, and school adjustment. Multiple-group structural equation modeling was used to evaluate the difference of relations for peer attachment, parenting style, self-concept, and school adjustment variable between adolescents with chronic illness and those without chronic illness. The model fit of a multiple-group structural equation modeling was good. The difference of the path from negative parenting style to self-concept between the two groups was significant, and a significant between-group difference in the overall path was found. This indicated that self-concept in adolescents with chronic illness was more negatively affected by negative parenting style than in adolescents without chronic illness. Healthcare providers can promote the process of school adjustment in several ways, such as discussing this issue directly with adolescent patients, along with their parents and peers, examining how the organization and content of the treatment can be modified according to the adolescents' school life. Copyright © 2016. Published by Elsevier B.V.

Mind-Body Approaches and Chronic Illness: Status of Research

ERIC Educational Resources Information Center

Riccio, Cynthia A.; Pliego, Jessica; Rae, William A.

2016-01-01

An increasing number of children experience chronic health issues that affect their academic and behavioral functioning, as well as psychological well-being. At the same time, psychological stress can exacerbate the chronic illness. The first line of treatment most often is medical (e.g., pharmacology, surgery, radiation). Even when the medical…

An Evaluation of Collaborative Interventions to Improve Chronic Illness Care: Framework and Study Design

ERIC Educational Resources Information Center

Cretin, Shan; Shortell, Stephen M.; Keeler, Emmett B.

2004-01-01

The authors' dual-purpose evaluation assesses the effectiveness of formal collaboratives in stimulating organizational changes to improve chronic illness care (the chronic care model or CCM). Intervention and comparison sites are compared before and after introduction of the CCM. Multiple data sources are used to measure the degree of…

Women Confronting the Reality of Multiple Sclerosis: A Qualitative Model of Self-Healing

ERIC Educational Resources Information Center

Romagosa, Carol J.

2010-01-01

Multiple sclerosis (MS) is a chronic debilitating disease that has an uncertain course. Although uncertainty is a universal experience in chronic illness, uncertainty in MS is especially threatening to psychological well-being. Chronic illness, including conditions of disability, is one of our greatest health care problems as society ages. Never…

The INSPIRED study: a randomised controlled trial of the Whole Person Model of disease self-management for people with type 2 diabetes.

PubMed

Clarke, David M; Baird, Donita E; Perera, Dinali N; Hagger, Virginia L; Teede, Helena J

2014-02-08

The prevalence of type 2 diabetes has increased dramatically in the last decade, and is continuing to rise. It is a chronic condition, often related to obesity, diet and sedentary lifestyles, and can lead to significant health complications, disability and early death. Diabetes is commonly associated with depression, which can impact significantly on a person's ability to manage their illness and, consequently, on disease outcomes. Disease self-management is fundamental in diabetes and requires support from multiple health professionals and the active participation of the person, including in maintaining a healthy lifestyle. The Whole Person Model was developed in order to integrate emotional and behavioural aspects into a self-management program for people with type 2 diabetes. Here we describe a study designed to test the efficacy of the Whole Person Model of disease self-management in type 2 diabetes. In a parallel-group randomised trial, 180 people with type 2 diabetes of between 2-10 years duration will be recruited via invitation through the Australian National Diabetes Services Scheme. Participants will undergo baseline assessment, followed by randomisation to either intervention or control condition. Control participants will receive fact sheets containing key information about diabetes self-management. The intervention group will receive the INSPIRED (Individual Support & Resources for Diabetes) Manual and be assigned a Health Coach. The INSPIRED Manual consists of six modules that provide key information about diabetes and disease management using the Whole Person Model. Engagement is facilitated by interactive tasks and contact with a Health Coach over seven weeks--an introductory face-to-face session, and six subsequent contacts by phone following each module. Follow-up assessments occur at 13 weeks (post-intervention) and 26 weeks. Primary outcomes include blood glucose management (HbA1c), weight and mood. Secondary outcomes include level of exercise, confidence to manage diabetes, and psychosocial well-being. The Whole Person Model is designed to enable health professionals to address mood disturbance without pathologizing any disorders and, in the context of the chronic illness, empowering behavior change and self-management. If proven effective, this model will strengthen capacity of the healthcare workforce to foster and support effective diabetes self-management. Australia and New Zealand Clinical Trials Register, ACTRN12613000391774.

Providing Support to Relatives and Friends Managing Both Chronic Physical Illness and Depression: the Views of a National Sample of U.S. Adults

PubMed Central

Janevic, Mary; Rosland, Ann-Marie; Wiitala, Wyndy; Connell, Cathleen M; Piette, John D.

2012-01-01

Objective To describe how comorbid depression in chronically ill adults affects the willingness of their family and friends to provide them with illness management support. Methods We identified a national sample of U.S. adults (n=1027), all of whom had a close relative or friend with a chronic physical illness. We examined whether respondents were less willing to help their relatives/friends with disease management when they reported that these relatives/friends were also diagnosed with depression. Results In multivariate models, the odds of respondents being willing to provide disease-management support doubled when the relative/friend was depressed (adjusted odds ratio (AOR) = 1.99; 95% C.I=1.31, 3.02). Respondents were willing to perform an equal number of illness support tasks for relatives/friends with and without depression. However, respondents reported 30% more difficulties discussing health issues (incidence rate ratio (IRR)=1.30; 95% C.I=1.11,1.53), and 44% more barriers to providing support (IRR=1.44; 95% C.I=1.18, 1.75) to depressed relatives/friends. Conclusion U.S. adults are more willing to provide disease-management support for chronically ill relatives/friends with depression. However, helping depressed relatives/friends is also more challenging. Practice implications By providing resources for potential supporters, health providers could mobilize an important source of disease-management support for patients with chronic illness and depression. PMID:22748757

Health-care encounters create both discontinuity and continuity in daily life when living with chronic heart failure—A grounded theory study

PubMed Central

Östman, Malin; Ung, Eva Jakobsson; Falk, Kristin

2015-01-01

Living with chronic heart failure (CHF) often involves lifelong contact with health care, more or less frequently, depending on fluctuating health-generating disruptions in everyday life. To reduce the influence on continuity in life, health-care professionals should preferably focus on supporting patients in managing their daily lives, based on their perspective. The aim of this study was to describe how the interaction in health-care encounters contributes to either continuity or discontinuity in the daily life for persons with CHF. Interviews with 18 participants were carried out, using the grounded theory method, through data collection and analysis. Two core concepts were constructed from data which reveal a model that illuminates the characteristics of the encounters, the actions of health-care professionals and the normative discourse. Patient-centred agenda consists of the categories: “Experiencing a subordinate approach,” “Objectifying during the encounter” and “Expected to be compliant.” This describes how health-care professionals enhance discontinuity in daily life by using a paternalistic approach in the encounter. Person-centred agenda consists of the categories: “Experiencing an empowering approach,” “Person-centredness during the encounter” and “Expected to be capable.” It describes how participants perceive that health-care professionals enable them to deal with everyday life which enhances continuity. The findings highlight the importance of health-care professionals’ attitudes and communication in encounters with patients. Health care must be designed to support and promote patients’ own strategic thinking by strengthening their self-image to enhance continuity in everyday life. The experience of discontinuity is based on the prevailing health-care culture which focuses on disease and medical treatment and regards it as superior to the illness experience in an everyday life context. We therefore strongly suggest a paradigm shift in the health-care organisation and culture in order to support the patients in their efforts to live a meaningful, rich life, in spite of the chronic illness CHF. PMID:28229746

Morbidity, utilization of curative care and service entry point preferences in metropolitan Centro Habana, Cuba.

PubMed

Rodríguez, Armando; Díaz, Addys; Balcindes, Susana; García, René; Vos, Pol De; Stuyft, Patrick Van der

2016-11-03

First-line health services with a primary health care approach are a strong trigger for adequate health-care-seeking behavior. Research on the association between prevalence of chronic diseases and acute illnesses and use of health services emphasizes the importance of socioeconomic determinants in such patterns of utilization. In a cross-sectional study of 408 families in Centro Habana, Cuba, home interviews were conducted between April and June 2010 to analyze socio-demographic determinants of acute and chronic health problems and use of formal health services. Bivariate and logistic regression models were used. 529 persons reported a chronic disease. During the previous month, 155 of the latter reported an exacerbation and 50 experienced an unrelated acute health problem. 107 persons without chronic diseases reported acute health problems. Age was the strongest determinant of chronic disease prevalence. Adult women and the elderly were more likely to report acute problems. Acute patients with underlying chronic disease used formal services more often. No socio-demographic variable was associated with services use or consultation with the family physician. While the family physician is defined as the system's entry-point, this was the case for only 54% of patients that had used formal services, thus compromising the physician's role in counseling patients and summarizing their health issues. The importance of chronic diseases highlights the need to strengthen the family physician's pivotal role. New economic policies in Cuba, stimulating self-employment and private initiative, may increase the strain on the exclusively public health care system. Still, the Cuban health system has demonstrated its ability to adapt to new challenges, and the basic premises of Cuba's health policy are expected to be preserved.

Illness Perception of Patients with Functional Gastrointestinal Disorders.

PubMed

Xiong, Na-Na; Wei, Jing; Ke, Mei-Yun; Hong, Xia; Li, Tao; Zhu, Li-Ming; Sha, Yue; Jiang, Jing; Fischer, Felix

2018-01-01

To investigate the illness perception characteristics of Chinese patients with functional gastrointestinal disorders (FGID), and the mediating role between symptoms, psychopathology, and clinical outcomes. Six illness groups from four outpatient departments of a general hospital in China were recruited, including the FGID patient group. The modified and validated Chinese version of the illness perception questionnaire-revised was utilized, which contained three sections: symptom identity, illness representation, and causes. The 12-item short-form health survey was utilized to reflect the physical and mental health-related quality of life (HRQoL). The Toronto alexithymia scale was used to measure the severity of alexithymia. Additional behavioral outcome about the frequency of doctor visits in the past 12 months was measured. Pathway analyses with multiple-group comparisons were conducted to test the mediating role of illness perception. Overall, 600 patients were recruited. The illness perceptions of FGID patients were characterized as with broad non-gastrointestinal symptoms (6.8 ± 4.2), a negative illness representation (more chronic course, worse consequences, lower personal and treatment control, lower illness coherence, and heavier emotional distress), and high numbers of psychological and culture-specific attributions. Fit indices of the three hypothesized path models (for physical and mental HRQoL and doctor-visit frequency, respectively) supported the mediating role of illness perceptions. For example, the severity of alexithymia and non-gastrointestinal symptoms had significant negative effect on mental quality of life through both direct (standardized effect: -0.085 and -0.233) and indirect (standardized effect: -0.045 and -0.231) influence via subscales of consequences, emotional representation, and psychological and risk factor attributions. Multi-group confirmatory factor analysis showed similar psychometric properties for FGID patients and the other disease group. The management of FGID patients should take into consideration dysfunctional illness perceptions, non-gastrointestinal symptoms, and emotion regulation.

Analysis of causes of death for all decedents in Ohio with and without mental illness, 2004-2007.

PubMed

Sherman, Marion E; Knudsen, Kraig J; Sweeney, Helen Anne; Tam, Kwok; Musuuza, Jackson; Koroukian, Siran M

2013-03-01

This study compared causes of death, crude mortality rates, and standardized mortality ratios (SMRs) between decedents with mental illness in Ohio's publicly funded mental health system ("mental illness decedents") and all Ohio decedents. Ohio death certificates and Ohio Department of Mental Health service utilization data were used to assess mortality among decedents from 2004 to 2007. Age-adjusted SMRs and age-adjusted mortality rates were calculated across race and sex strata. Mental illness decedents accounted for 3.3% of all 438,749 Ohio deaths. Age-adjusted SMRs varied widely across the race and sex strata and by cause of death. Nonblacks with or without mental illness showed higher SMRs than blacks. Nonblack females with mental illness showed the highest SMRs in injury-related deaths. Higher SMRs were found for deaths associated with substance abuse; mental illness; diabetes; issues related to the nervous, cardiovascular, or respiratory systems; and injury. With and without mental illness, the top cause of death was violence for youths and cardiovascular disease for adults >35. Deaths from injury and violence, especially among those <35, should be specifically addressed to reduce excess mortality for persons with mental illness. Mental health care should be integrated with primary care to better manage chronic disease, especially cardiovascular disease. Methodological contributions included use of linked files to compare SMR and leading causes of death between mental illness decedents and all Ohio decedents. More research is needed on patterns in cause of death and any interactions from demographic characteristics and mental illness. Health care data silos must be bridged between private and public sectors and the Departments of Veterans Affairs and Defense.

Self-management support in chronic illness care: a concept analysis.

PubMed

Kawi, Jennifer

2012-01-01

This article reports on the concept analysis of self-management support (SMS) to provide clarity for systematic implementation in practice. SMS is a concept in its early phase of development. It is increasingly evident in literature on chronic illness care. However, the definition has been simplified or vague leading to variable SMS programs and inconsistent outcomes. Elucidation of SMS is necessary in chronic illness care to facilitate clear understanding and implementation. Rodgers' evolutionary concept analysis method was used to examine SMS. Data sources included systematic multidisciplinary searches of multiple search engines. SMS refers to comprehensive sustaining approaches toward improving chronic illness outcomes consisting of patient-centered attributes (involving patients as partners; providing diverse, innovative educational modalities specific to patients' needs; individualizing patient care), provider attributes (possessing adequate knowledge, skills, attitudes in providing care), and organizational attributes (putting an organized system of care in place, having multidisciplinary team approach, using tangible and social support). A well-clarified SMS concept is important in theory development. The attributes offer necessary components in SMS programs for systematic implementation, evaluation, and research. There is great potential that SMS can help improve outcomes of chronic illness care.

Developing interventions for chronically ill patients: is coping a helpful concept?

PubMed

de Ridder, D; Schreurs, K

2001-03-01

In this review, the role of coping in the development of psychosocial interventions for chronically ill patients is discussed. After summarizing the theoretical issues involved in the translation of the coping concept into an intervention, a review is undertaken of 35 studies concerned with the impact of interventions aimed at improving coping on patients' quality of life. These studies concern seven different chronic disease types (AIDS, asthma, cancer, cardiovascular diseases, chronic pain, diabetes, and rheumatoid arthritis) and show explicit consideration of attempts to manage illness in terms of coping to be rare. Many studies nevertheless address the equivalent of coping, namely behaviors and/or cognitions intended to deal with an illness situation appraised as stressful. The results of these studies are encouraging, although largely limited to the improvement of one or two particular coping strategies and problem-focused strategies in particular. It is argued that in order to expand on these initially positive findings, greater and more explicit consideration should be given to the potential of the coping concept for intervention with the chronically ill. The appraisal of stressful situations, the use of coping resources, and the strategic application of particular coping strategies should, for example, be given more careful consideration.

Chronic stress and illness in children: the role of allostatic load.

PubMed

Johnston-Brooks, C H; Lewis, M A; Evans, G W; Whalen, C K

1998-01-01

Recent studies of stress have highlighted the contributions of chronic psychological and environmental stressors to health and well-being. Children may be especially vulnerable to the negative effects of chronic stressors. Allostasis, the body's ability to adapt and adjust to environmental demands, has been proposed as an explanatory mechanism for the stress-health link, yet empirical evidence is minimal. This study tested the proposition that allostasis may be an underlying physiological mechanism linking chronic stress to poor health outcomes in school-aged children. Specifically, we examined whether allostasis would mediate or moderate the link between chronic stress and health. To test the hypothesis that allostasis contributes to the relation between chronic stress and poor health, we examined household density as a chronic environmental stressor, cardiovascular reactivity (CVR) as a marker of allostatic load, and number of school absences due to illness as the health outcome in a sample of 81 boys. Structural equation modeling indicated that the mediating model fit the data well, accounting for 17% of the variance in days ill. Results provide the first evidence that CVR may mediate the relation between household density and medical illness in children. More generally, these findings support the role of allostasis as an underlying mechanism in the link between chronic stress and health.

[Nutrigenomics - perspectives of personalized nutrition].

PubMed

Kapka-Skrzypczak, Lucyna; Niedźwiecka, Joanna; Cyranka, Małgorzata; Kruszewski, Marcin K; Skrzypczak, Maciej; Wojtyła, Andrzej

2011-01-01

Currently used dietary recommendations and requirements are generalized. It applies to both healthy and ailing individuals. These recommendations are meant to avert leading chronic illnesses such as: type 2 diabetes mellitus, obesity, hyperlipidemia, cardiovascular diseases and hypertension. In the future it might be possible to give dietary advice tailored to every - sick and healthy - individual. Nutrigenomics and nutrigenetics are two fields derived from nutrition science and genetics. Their main goal is to elucidate the influence of interactions between genes and diet on individuals' health. This paper shows the examples of metabolic response changes according to diet and chosen gene polymorphisms. It will enable an effective prevention or management of chronic diseases by accurate diet and lifestyle matched to an individual's genetic makeup. It could be useful especially to define predisposition for type 2 diabetes mellitus in young children. It will be possible to change their diet and lifestyle so that they could avoid this chronic disease. There will also be a possibility to detect early the beginning of the illness and choose/select proper treatment. It is important because type 2 diabetes mellitus frequency is up to 90% of all cases of diabetes mellitus. It's often diagnosed too late and a lot of patients have already developed complications caused by this disease. Successful dietotherapy will also be available in such disease entities as dyslipidemias, hypertension and micro- , macronutrients and vitamins defficiences.

Technology dependence and health-related quality of life: a model.

PubMed

Marden, Susan F

2005-04-01

This paper presents a new theoretical model to explain people's diverse responses to therapeutic health technology by characterizing the relationship between technology dependence and health-related quality of life (HRQL). Technology dependence has been defined as reliance on a variety of devices, drugs and procedures to alleviate or remedy acute or chronic health problems. Health professionals must ensure that these technologies result in positive outcomes for those who must rely on them, while minimizing the potential for unintended consequences. Little research exists to inform health professionals about how dependency on therapeutic technology may affect patient-reported outcomes such as HRQL. Organizing frameworks to focus such research are also limited. Generated from the synthesis of three theoretical frameworks and empirical research, the model proposes that attitudes towards technology dependence affect HRQL through a person's illness representations or commonsense beliefs about their illness. Symptom distress, illness history, age and gender also influence the technology dependence and HRQL relationship. Five concepts form the major components of the model: a) attitudes towards technology dependence, b) illness representation, c) symptom distress, d) HRQL and e) illness history. The model is proposed as a guide for clinical nursing research into the impact of a wide variety of therapeutic health care interventions on HRQL. Empirical validation of the model is needed to test its generality.

Mercy killing without consent. Historical comments on a controversial issue.

PubMed

Lauter, H; Meyer, J E

1982-02-01

In recent discussions on euthanasia the question about mercy killing without consent of mentally ill persons has turned up, particularly in cases of hopeless suffering among senile or chronically insane patients. Possible analogies to the actions under the German Nazi-regimen and relations to the concept of Social Darwinism with suggestions about active eugenic control as propagated in the early part of this century are outlined in a historical review. The implications and obvious dangers of misuse of any such kind of active euthanasia in psychiatry are discussed on this background.

Homoeopathy: 3. Everyday uses for all the family.

PubMed

Kaplan, B

1994-10-01

Homoeopathy is a useful and safe therapeutic tool for all the family but cannot totally replace conventional medicine. It has a place in most chronic diseases; a tendency to recurrent attacks of acute illnesses; and acute conditions not treatable by conventional medicine or where the patient or parent wishes to avoid conventional drugs. The homoeopathic consultation involves a "whole person" approach and involves listening to the patient. Several homoeopathic remedies are suitable for the family medicine chest, eg. Arnica for bruising. Chamomilla for teething and Calendula cream for grazes and scalds.

Describing and analysing primary health care system support for chronic illness care in Indigenous communities in Australia's Northern Territory - use of the Chronic Care Model.

PubMed

Si, Damin; Bailie, Ross; Cunningham, Joan; Robinson, Gary; Dowden, Michelle; Stewart, Allison; Connors, Christine; Weeramanthri, Tarun

2008-05-28

Indigenous Australians experience disproportionately high prevalence of, and morbidity and mortality from chronic illness such as diabetes, renal disease and cardiovascular disease. Improving the understanding of how Indigenous primary care systems are organised to deliver chronic illness care will inform efforts to improve the quality of care for Indigenous people. This cross-sectional study was conducted in 12 Indigenous communities in Australia's Northern Territory. Using the Chronic Care Model as a framework, we carried out a mail-out survey to collect information on material, financial and human resources relating to chronic illness care in participating health centres. Follow up face-to-face interviews with health centre staff were conducted to identify successes and difficulties in the systems in relation to providing chronic illness care to community members. Participating health centres had distinct areas of strength and weakness in each component of systems: 1) organisational influence - strengthened by inclusion of chronic illness goals in business plans, appointment of designated chronic disease coordinators and introduction of external clinical audits, but weakened by lack of training in disease prevention and health promotion and limited access to Medicare funding; 2) community linkages - facilitated by working together with community organisations (e.g. local stores) and running community-based programs (e.g. "health week"), but detracted by a shortage of staff especially of Aboriginal health workers working in the community; 3) self management - promoted through patient education and goal setting with clients, but impeded by limited focus on family and community-based activities due to understaffing; 4) decision support - facilitated by distribution of clinical guidelines and their integration with daily care, but limited by inadequate access to and support from specialists; 5) delivery system design - strengthened by provision of transport for clients to health centres, separate men's and women's clinic rooms, specific roles of primary care team members in relation to chronic illness care, effective teamwork, and functional pathology and pharmacy systems, but weakened by staff shortage (particularly doctors and Aboriginal health workers) and high staff turnover; and 6) clinical information systems - facilitated by wide adoption of computerised information systems, but weakened by the systems' complexity and lack of IT maintenance and upgrade support. Using concrete examples, this study translates the concept of the Chronic Care Model (and associated systems view) into practical application in Australian Indigenous primary care settings. This approach proved to be useful in understanding the quality of primary care systems for prevention and management of chronic illness. Further refinement of the systems should focus on both increasing human and financial resources and improving management practice.

Effectiveness of neurofeedback therapy for anxiety and stress in adults living with a chronic illness: a systematic review protocol.

PubMed

Blaskovits, Farriss; Tyerman, Jane; Luctkar-Flude, Marian

2017-07-01

The objective of this review is to systematically examine the effectiveness of neurofeedback therapy for managing anxiety and stress in adults living with a chronic illness.The specific objectives are to identify which neurofeedback systems and/or protocols demonstrate effectiveness and determine the level of supporting evidence.The review question is as follows: What is the effectiveness of neurofeedback therapy for managing anxiety and stress in an adult population aged 18 years of age or older living with a chronic illness?

Chronic Illness Associated with Mold and Mycotoxins: Is Naso-Sinus Fungal Biofilm the Culprit?

PubMed Central

Brewer, Joseph H.; Thrasher, Jack D.; Hooper, Dennis

2013-01-01

It has recently been demonstrated that patients who develop chronic illness after prior exposure to water damaged buildings (WDB) and mold have the presence of mycotoxins, which can be detected in the urine. We hypothesized that the mold may be harbored internally and continue to release and/or produce mycotoxins which contribute to ongoing chronic illness. The sinuses are the most likely candidate as a site for the internal mold and mycotoxin production. In this paper, we review the literature supporting this concept. PMID:24368325

Chronic illness associated with mold and mycotoxins: is naso-sinus fungal biofilm the culprit?

PubMed

Brewer, Joseph H; Thrasher, Jack D; Hooper, Dennis

2013-12-24

It has recently been demonstrated that patients who develop chronic illness after prior exposure to water damaged buildings (WDB) and mold have the presence of mycotoxins, which can be detected in the urine. We hypothesized that the mold may be harbored internally and continue to release and/or produce mycotoxins which contribute to ongoing chronic illness. The sinuses are the most likely candidate as a site for the internal mold and mycotoxin production. In this paper, we review the literature supporting this concept.

Florence Nightingale: her Crimean fever and chronic illness.

PubMed

Dossey, Barbara M

2010-03-01

Florence Nightingale's Crimean fever and chronic illness have intrigued historians for more than a century and a half. The purpose of this article is threefold: (a) to discuss the facts that point to the cause of Nightingale's Crimean fever as brucellosis, (b) to show that her debilitating illness for 32 years (1855-1887) was compatible with the specific form of chronic brucellosis, and (c) to present new evidence that she was still having severe symptoms in December 1887, when it was previously felt that she had no severe symptoms after 1870.

Positive aspects of caregiving in schizophrenia: A review

PubMed Central

Kulhara, Parmanand; Kate, Natasha; Grover, Sandeep; Nehra, Ritu

2012-01-01

Schizophrenia is a severe mental illness which is associated with significant consequences for both the patients and their relatives. Due to chronicity of the illness, the relatives of patients of schizophrenia have to bear the main brunt of the illness. Studies across the world have evaluated various aspects of caregiving and caregivers such as burden, coping, quality of life, social support, expressed emotions, and psychological morbidity. In general the research has looked at caregiving as a negative phenomenon, however, now it is increasingly recognised that caregiving is not only associated with negative consequences only, also experience subjective gains and satisfaction. This review focus on the conceptual issues, instruments available to assess the positive aspects of caregiving and the various correlates of positive aspects of caregiving reported in relation to schizophrenia. The positive aspect of caregiving has been variously measured as positive caregiving experience, caregiving satisfaction, caregiving gains and finding meaning through caregiving scale and positive aspects of caregiving experience. Studies suggests that caregivers of patients with schizophrenia and psychotic disorders experience caregiving gains (in the form of becoming more sensitive to persons with disabilities, clarity about their priorities in life and a greater sense of inner strength), experience good aspects of relationship with the patient, do have personal positive experiences. Some of the studies suggest that those who experience greater negative caregiving experience also do experience positive caregiving experience. PMID:24175167

Clinical variables and implications of the personality on the outcome of bipolar illness: a pilot study

PubMed Central

Casas-Barquero, Nieves; García-López, Olga; Fernández-Argüelles, Pedro; Camacho-Laraña, Manuel

2007-01-01

Outcome in bipolar patients is affected by comorbidity. Comorbid personality disorders are frequent and may complicate the course of bipolar illness. This pilot study examined a series of 40 euthymic bipolar patients (DSM-IV criteria) (bipolar I disorder 31, bipolar II disorder 9) to assess the effect of clinical variables and the influence of comorbid personality on the clinical course of bipolar illness. Bipolar patients with a diagnosis of comorbid personality disorder (n = 30) were compared with “pure” bipolar patients (n = 10) with regard to demographic, clinical, and course of illness variables. Comorbid personality disorder was diagnosed in 75% of patients according to ICD-10 criteria, with obsessive-compulsive personality disorder being the most frequent type. Sixty-three per cent of subjects had more than one comorbid personality disorder. Bipolar patients with and without comorbid personality disorder showed no significant differences regarding features of the bipolar illness, although the group with comorbid personality disorder showed a younger age at onset, more depressive episodes, and longer duration of bipolar illness. In subjects with comorbid personality disorders, the number of hospitalizations correlated significantly with depressive episodes and there was an inverse correlation between age at the first episode and duration of bipolar illness. These findings, however, should be interpreted taking into account the preliminary nature of a pilot study and the contamination of the sample with too many bipolar II patients. PMID:19300559

Close relationships and the management of chronic illness: Associations and interventions.

PubMed

Martire, Lynn M; Helgeson, Vicki S

2017-09-01

Self-management of a chronic illness involves not only monitoring symptoms, adhering to medication regimens, and keeping medical appointments but also making and maintaining difficult lifestyle changes. This article highlights correlational and intervention research suggesting family members are influential in children's and adults' illness management. The argument is made that a dyadic approach to chronic illness management that targets the influence of close relationships may yield more sustainable effects on patient behavior than has been achieved in the past. In particular, dyadic approaches aimed at helping patients and family members to find ways to collaborate in goal setting for these behaviors is recommended. Such dyadic interventions may also benefit family members who are ill or are at risk because of poor health behaviors. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Say 'trouble's gone': chronic illness and employability in job training programmes.

PubMed

Tsui, Emma K

2013-01-01

The concept of biographical disruption has unique relevance for socioeconomically disadvantaged groups who participate in entry-level job training programmes. In these programmes trainees often suffer from various forms of chronic illness and must arrange these illnesses into a picture of employability. In this article I use ethnographic data and narrative analysis to examine closely two trainees' illness-related experiences, expressions and talk, and find that their ability to present their illnesses in ways that are consistent with programmatic goals is strongly influenced by family support, responsibilities and roles, as well as particular aspects of illness, like the interpretability of symptoms. I also find that the concept of biographical disruption has a curious traction in the world of job training, particularly among job training programme staff who would like to see trainees mobilise a variety of resources to help manage their illness. However, for trainees, many of whom have lived with chronic illness for years, the concept of biographical disruption may be more limited as a tool for understanding the experiences of illness. A more meaningful disruptive force in the lives of trainees appears to be the programme itself and the strategies for dealing with illness that programme staff may extend. © 2012 The Author. Sociology of Health & Illness © 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

Older women and health: an overview.

PubMed

Lewis, M

1985-01-01

Older women's health issues are unique. There are more older women than ever before. They are living increasingly longer than men, yet they report more acute and chronic illness and disability than men. They are disproportionally represented in nursing homes, since many women are alone: twenty-five percent aged 70 or over have no living children and over 60 percent of older women are widowed, divorced, or single. Older women have fewer personal financial resources for health care than men. Health care reimbursement does not meet their needs for financial coverage of chronic outpatient and nursing home care. They face age and sex discrimination on the part of many health care providers and are subject to a growing tendency to be seen as "burdens" and "problems" in the American health care system.

Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill.

PubMed

Hickman, Ronald L; Pinto, Melissa D

2014-03-01

To identify the relationships between advance directive status, demographic characteristics and decisional burden (role stress and depressive symptoms) of surrogate decision-makers (SDMs) of patients with chronic critical illness. Although the prevalence of advance directives among Americans has increased, SDMs are ultimately responsible for complex medical decisions of the chronically critically ill patient. Decisional burden has lasting psychological effects on SDMs. There is insufficient evidence on the influence of advance directives on the decisional burden of surrogate decision-makers of patients with chronic critical illness. The study was a secondary data analysis of cross-sectional data. Data were obtained from 489 surrogate decision-makers of chronically critically ill patients at two academic medical centres in Northeast Ohio, United States, between September 2005-May 2008. Data were collected using demographic forms and questionnaires. A single-item measure of role stress and the Center for Epidemiological Studies Depression (CESD) scale were used to capture the SDM's decisional burden. Descriptive statistics, t-tests, chi-square and path analyses were performed. Surrogate decision-makers who were nonwhite, with low socioeconomic status and low education level were less likely to have advance directive documentation for their chronically critically ill patient. The presence of an advance directive mitigates the decisional burden by directly reducing the SDM's role stress and indirectly lessening the severity of depressive symptoms. Most SDMs of chronically critically ill patients will not have the benefit of knowing the patient's preferences for life-sustaining therapies and consequently be at risk of increased decisional burden. Study results are clinically useful for patient education on the influence of advance directives. Patients may be informed that SDMs without advance directives are at risk of increased decisional burden and will require decisional support to facilitate patient-centred decision-making. © 2013 John Wiley & Sons Ltd.