WorldWideScience

Sample records for underlying chronic illness

  1. Mechanisms in Chronic Multisympton Illnesses

    Science.gov (United States)

    2007-10-01

    total hip arthroplasty : an outcome measure of hip osteoarthritis? J Rheumatol 1999;26: 855–61. 3506 BINGHAM ET AL 53. Adami S, Pavelka K, Cline GA...have recruited 125 new subjects. This brings our total number of subjects for the Registry to 504. We have continued to schedule and screen...accepted with revisions . 13 Title: Mechanisms in Chronic Multisymptom Illnesses PI: Clauw *Petrou M, Harris RE, Foerster BR, Mclean SA, Sen A

  2. Sleep quality in patients with chronic illness.

    Science.gov (United States)

    Kemple, Mary; O'Toole, Sinead; O'Toole, Conor

    2016-11-01

    To explore sleep quality in patients with chronic illness in primary care. Many people suffer from chronic illness with the numbers increasing. One common issue arises from problems that people have with their quality of sleep: a largely under-researched topic. This study exploring poor quality sleep allowed patients to describe their daily struggles with poor sleep in their own lives. This allowed the development of a deeper understanding of what it means to sleep poorly and find out how participants cope with not sleeping well. A qualitative approach enabling a deep exploration of patient's experiences of sleep quality was used. Interviews were conducted with a purposive sample of nine participants from a primary care clinic. Analysis utilised an interpretative approach. Data analysed produced four recurrent themes that were grouped into two categories. First, themes that identified the recognition by participants that 'something was wrong' were abrupt beginning and impact on their life. Second, themes that identified that the participants considered there was 'nothing wrong' were I am fine and I just carry on. Data revealed that poor quality sleep can have a profound effect on quality of life. Participants lived without good quality sleep for years. They had come to accept two seemingly irreconcilable ideas that not being able to sleep is an enduring problem with a distinct starting point, and paradoxically, this is not a problem that deserves much professional attention. Important original data were generated on the impact of poor quality sleep indicating that chronically disturbed sleep can increase the disease burden on patients with chronic illness. The results of this study suggest healthcare professionals need to understand how sleep quality issues impact on patient's experience of chronic illness. Data from this study will help nurses and other health professionals to deepen their understanding of the profound impact of poor quality sleep on patients with

  3. Illness Identity in Adults with a Chronic Illness.

    Science.gov (United States)

    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.

  4. Chronic illness and poverty in The Netherlands

    NARCIS (Netherlands)

    van Agt, H. M. E.; Stronks, K.; Mackenbach, J. P.

    2000-01-01

    Background: The actual financial situation of chronically ill people is not known. Methods: A postal questionnaire was conducted among a sample of the non-institutionalised population (4,206 respondents). Results: Fourteen percent of chronically ill people were found to be poor as compared to 5% of

  5. Chronic conditions, fluid states: chronicity and the anthropology of illness

    National Research Council Canada - National Science Library

    Manderson, Lenore; Smith-Morris, Carolyn

    2010-01-01

    .... Breaking new ground in medical anthropology by challenging the chronic/acute divide in illness and disease, the editors, along with a group of rising scholars and some of the most influential minds...

  6. Psychological and Spiritual Factors in Chronic Illness.

    Science.gov (United States)

    Leifer, Ron

    1996-01-01

    Asserts the importance of psychological and spiritual factors in the treatment of chronic illness. Discusses the inevitably of sickness, old age, and death, as well as the presence of the physician, patience, pain, and hope. Maintains that reflection on these qualities can benefit both the physician and patient. (MJP)

  7. Normalizing fibromyalgia as a chronic illness.

    Science.gov (United States)

    Clauw, Daniel J; D'Arcy, Yvonne; Gebke, Kevin; Semel, David; Pauer, Lynne; Jones, Kim D

    2018-01-01

    Fibromyalgia (FM) is a complex chronic disease that affects 3-10% of the general adult population and is principally characterized by widespread pain, and is often associated with disrupted sleep, fatigue, and comorbidities, among other symptoms. There are many gaps in our knowledge of FM, such that, compared with other chronic illnesses including diabetes, rheumatoid arthritis, and asthma, it is far behind in terms of provider understanding and therapeutic approaches. The experience that healthcare professionals (HCPs) historically gained in developing approaches to manage and treat patients with these chronic illnesses may help show how they can address similar problems in patients with FM. In this review, we examine some of the issues around the management and treatment of FM, and discuss how HCPs can implement appropriate strategies for the benefit of patients with FM. These issues include understanding that FM is a legitimate condition, the benefits of prompt diagnosis, use of non-drug and pharmacotherapies, patient and HCP education, watchful waiting, and assessing patients by FM domain so as not to focus exclusively on one symptom to the detriment of others. Developing successful approaches is of particular importance for HCPs in the primary care setting who are in the ideal position to provide long-term care for patients with FM. In this way, FM may be normalized as a chronic illness to the benefit of both patients and HCPs.

  8. Impact of childhood chronic illnesses on siblings: a literature review.

    Science.gov (United States)

    O' Brien, Irene; Duffy, Anita; Nicholl, Honor

    Childhood illness can have a significant impact on families, particularly on the ill child's siblings. There is a dearth of published literature focusing on the needs of siblings of ill children. This literature review aims to provide an overview of the current healthcare literature in relation to the impact of childhood chronic illness or disability on siblings. A literature review was undertaken by searching the databases CINAHL, PsycINFO, ProQuest and Cochrane Library for relevant articles in English using the search terms: 'siblings', 'chronic illness', 'disability', 'cancer', 'sibling relations', 'sibling adjustment', 'coping', 'family-centred care', 'sibling interventions', 'camps', 'autism', 'Down's syndrome'. Seventeen research studies in total were reviewed. This review focuses on three sibling groups related to children suffering from autism, cancer and Down's syndrome, and are discussed under the following headings: sibling adjustment; family functioning and sibling's coping resources; and intervention programmes. The literature revealed that siblings of children with Down's syndrome were well adjusted to living with their brother or sister. However, there was conflicting information on the adjustment of siblings of children with cancer and autism. An awareness of the harmful effect that living with childhood illness and disability can have on some siblings is essential to enable healthcare professionals to provide supportive interventions to protect siblings' physical and emotional wellbeing.

  9. Labour participation of the chronically ill: a profile sketch.

    NARCIS (Netherlands)

    Baanders, A.N.; Rijken, P.M.; Peters, L.

    2002-01-01

    To improve our understanding of the problematic labour market position of people with a chronic disease, this paper describes the participation rates of several subgroups of the chronically ill in the Netherlands, as well as the aspects by which the working chronically ill differ from those who are

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

    Science.gov (United States)

    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…

  11. Peer interaction in adolescents with a chronic illness

    NARCIS (Netherlands)

    Meijer, SA; Sinnema, G; Bijstra, JO; Mellenbergh, GJ; Wolters, WHG

    2000-01-01

    This study examined behavioural, cognitive and affective aspects of peer interaction of adolescents with a chronic illness. The aim of the study was twofold: (1) describe peer interaction of adolescents with a chronic illness in comparison with norms of healthy adolescents; (2) examine the

  12. Health Care Hassles of Caregivers to the Chronically Ill

    Science.gov (United States)

    Keith, Pat M.

    2009-01-01

    This research investigated variables that influenced hassles with the health care system among 320 informal caregivers of the chronically ill. Caregivers of the chronically ill usually have considerable contact with the health care system. The research shifted the focus from strain in the caregiver-recipient dyad to hassles with the health care…

  13. Beyond unfavorable thinking: the illness cognition questionnaire for chronic diseases

    NARCIS (Netherlands)

    Evers, A. W.; Kraaimaat, F. W.; van Lankveld, W.; Jongen, P. J.; Jacobs, J. W.; Bijlsma, J. W.

    2001-01-01

    The literature on chronic diseases recognizes the role of illness cognition as a mediator between stress and illness. Few conceptualizations and instruments, however, give an indication of both unfavorable and favorable ways of adjusting to an uncontrollable long-term stressor, such as a chronic

  14. Beyond unfavorable thinking: the illness cognition questionnaire for chronic diseases.

    NARCIS (Netherlands)

    Evers, A.W.M.; Kraaimaat, F.W.; Lankveld, W.G.J.M. van; Jongen, P.J.H.; Jacobs, J.W.; Bijlsma, J.W.J.

    2001-01-01

    The literature on chronic diseases recognizes the role of illness cognition as a mediator between stress and illness. Few conceptualizations and instruments, however, give an indication of both unfavorable and favorable ways of adjusting to an uncontrollable long-term stressor, such as a chronic

  15. Chronically ill employees in the context of organizational culture

    NARCIS (Netherlands)

    Kopnina, Helen; Haafkens, Joke

    2009-01-01

    In this article, the differences in implementation of policies in relation to chronically ill employees are discussed in the context of organizational culture. It appears that an appropriate organizational culture is required to be able to take measures to retain chronically ill employees. Various

  16. Self-management and support needs of chronically ill people

    NARCIS (Netherlands)

    van Houtum, L.

    2016-01-01

    Over the past decade, self-management by patients has been recognized an important aspect of chronic illness care, as it can help avoid preventable mortality and morbidity and improve the quality of life of patients and their families. However, not all people with a chronic illness are able to

  17. Close relationship and chronic illness : The interrelations between illness perceptions and social support

    NARCIS (Netherlands)

    Salewski, Christel; Vollmann, Manja

    2014-01-01

    The aims of this study were (1) to explore the degree of concordance/discordance between the illness perceptions of patients with a chronic illness and those of their partners, and (2) to examine the relationship between the concordance/discordance of couples’ illness perceptions and social support

  18. Management of chronic illness: voices of rural women.

    Science.gov (United States)

    Sullivan, Therese; Weinert, Clarann; Cudney, Shirley

    2003-12-01

    The prevalence and cost of chronic illness globally and in the United States of America continue to escalate and the day-to-day management of these conditions presents a major challenge. The burden of chronic illness disproportionately affects vulnerable populations such as women and those living in rural areas. To add to the knowledge base of illness management by chronically ill rural women through examining their individual perceptions of the illness experience. The Women to Women project provided a nursing research-based computer intervention model for conducting support groups, providing health education, and fostering self-care, via personal computers and evaluated its effect on the women's psychosocial health. Fatigue and pain were the major physical symptoms that impacted the women's quality of life, with depression and stress being the primary emotions they experienced. The characteristics of humour, hope, and courage were key in their successful adaptation to living with chronic illness. The women's voices relate how they manage their illness responses and adaptation mechanisms. The data provide nurses with information to heighten their sensitivity to clients' day-to-day needs and experiences. It will assist them in their designing and planning of interventions that will enable clients to adapt and to have the best quality of life possible within the limitations of their chronic illnesses. The data are also important to nurses involved in rural research and theory development concerning self-management and adaptation to chronic illnesses.

  19. An application of the transactional model to the analysis of chronic illness narratives.

    Science.gov (United States)

    Lee, Andrea M; Poole, Gary

    2005-03-01

    The authors' aim in this study was to describe the chronic illness experience and its relationship to the concept to finding meaning. They conducted interviews using a narrative approach with 15 adults experiencing various chronic illnesses and analyzed narrative data using a combination of holistic-content and categorical-content approaches. The three major categories were the context of the chronic illness experience, personal reactions, and coping efforts. These categories were best interpreted in terms of a transactional model. The authors categorized finding meaning under cognitive coping strategies and described it as a strategy that was part of a larger coping repertoire.

  20. Chronic illness in the workplace: stigma, identity threat and strain.

    Science.gov (United States)

    McGonagle, Alyssa K; Barnes-Farrell, Janet L

    2014-10-01

    Chronic illness affects a large and growing number of workers in the United States and globally. Stigmatization (devaluation) at work based on chronic illness may be stressful for individuals and therefore may lead to negative psychological consequences (i.e. strains). In order to better understand stressful experiences of stigma for workers with chronic illnesses, a model of stigma-related identity threat (perceptions that one is at risk of being treated negatively at work because of chronic illness) was tested on a sample of 203 working adults with chronic illnesses. The following variables related to workers' perceptions of chronic illness-related identity threat: workers' boundary flexibility (flexibility in managing their work and life), their meta-perceptions of devaluation (perceptions of others' devaluation of them based on illness) and their job self-efficacy (feelings of confidence related to performing their job). In turn, perceptions of identity threat related to both feelings of psychological strain and (lower levels of) perceived work ability. Surprisingly, neither stigma centrality (how fundamental illness is to one's identity) nor supervisor support related to workers' identity threat perceptions. Copyright © 2013 John Wiley & Sons, Ltd.

  1. Cultural expressions of bodily awareness among chronically ill Filipino Americans.

    Science.gov (United States)

    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.

  2. Psychosocial characteristics of chronically ill child

    OpenAIRE

    Tomažič, Tjaša

    2016-01-01

    In this thesis, I would like to draw attention to the impact of long-term illness and prolonged hospitalization on the life of the ill child and his family. The effects of the illness are often overlooked and people do not receive the assistance they need to deal with it. In the theoretical part of the thesis, I define the term »long-term« illness and I pay attention to different strategies to cope with it. I indicate signs that show the presence of consequences of the long-term illness and p...

  3. Return Migration among Elderly, Chronically Ill Bosnian Refugees

    DEFF Research Database (Denmark)

    Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian

    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...

  4. An intelligent partner system for improving chronic illness care

    Directory of Open Access Journals (Sweden)

    Tibor Deutsch

    2003-02-01

    Full Text Available Chronic care consists of a sequence of actions to treat a specific clinical disorder over time as a function of the ways in which illness progresses and patients respond to management actions. Outcomes depend on physicians' skills to select the actions best suited for their patients and competent self-management. This paper presents the architecture of an intelligent partner system (IPS, which helps to provide doctors with relevant data and skills and empowers chronically ill patients with the information and confidence to manage their health wisely. The services of this intelligent system are presented as 'therapies' for the information-processing 'pathologies' associated with traditional chronic illness care.

  5. Living as a family in the midst of chronic illness.

    Science.gov (United States)

    Årestedt, Liselott; Persson, Carina; Benzein, Eva

    2014-03-01

    The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness. Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted. A qualitative design with a FSN approach was chosen. Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data. The phenomenon can be described as an ongoing movement towards well-being. The results included two themes and five sub-themes. The first theme was 'Co-creating a context for living with illness' with the subthemes; 'learning to live with the expressions of illness' and 'communicating the illness within and outside the family'. The second theme was 'Co-creating alternative ways for everyday life' with the subthemes; 'adapting to a new life rhythm', 'altering relationships' and 'changing roles and tasks in the family'. Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co-create a context for living with illness. They also co-create a context for alternative ways of everyday life. Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations together, as well as highlight resources within the family. © 2013 The Authors Scandinavian Journal of Caring Sciences © 2013 Nordic College of Caring Science.

  6. Nutrition support and the chronic critical illness syndrome.

    Science.gov (United States)

    Hollander, Jason M; Mechanick, Jeffrey I

    2006-12-01

    Critical illness can be viewed as consisting of 4 distinct stages: (1) acute critical illness (ACI), (2) prolonged acute critical illness, (3) chronic critical illness, and (4) recovery. ACI represents the evolutionarily programmed response to a stressor. In ACI, substrate is shunted away from anabolism and toward vital organ support and inflammatory proteins. Nutrition support in this stage is unproven and may ultimately prove detrimental. As critical illness progresses, there is no evolutionary precedent, and man owes his life to modern critical care medicine. It is at this point that nutrition and metabolic support become integral to the care of the patient. This paper (1) delineates and develops the 4 stages of critical illness using current evidence, clinical experience, and new hypotheses; (2) defines the chronic critical illness syndrome (CCIS); and (3) details an approach to the metabolic and nutrition support of the chronically critically ill patient using the metabolic model of critical illness as a guide. It is our hope that this clinical model can generate testable hypotheses that can improve the outcome of this unique population of patients.

  7. Temporal Trends Between 2010 and 2015 in Intensity of Care at End-of-Life for Patients With Chronic Illness: Influence of Age Under vs. Over 65 Years.

    Science.gov (United States)

    Sathitratanacheewin, Seelwan; Engelberg, Ruth A; Downey, Lois; Lee, Robert Y; Fausto, James A; Starks, Helene; Dunlap, Ben; Sibley, James; Lober, William; Loggers, Elizabeth T; Khandelwal, Nita; Curtis, J Randall

    2018-01-01

    Recent analyses of Medicare data show decreases over time in intensity of end-of-life care. Few studies exist regarding trends in intensity of end-of-life care for those under 65 years of age. To examine recent temporal trends in place of death, and both hospital and intensive care unit (ICU) utilization, for age-stratified decedents with chronic, life-limiting diagnoses (<65 vs. ≥65 years) who received care in a large healthcare system. Retrospective cohort using death certificates and electronic health records for 22,068 patients with chronic illnesses who died between 2010 and 2015. We examined utilization overall and stratified by age using multiple regression. The proportion of deaths at home did not change, but hospital admissions in the last 30 days of life decreased significantly from 2010 to 2015 (hospital b = -0.026; CI = -0.041, -0.012). ICU admissions in the last 30 days also declined over time for the full sample and for patients aged 65 years or older (overall b = -0.023; CI = -0.039, -0.007), but was not significant for younger decedents. Length of stay (LOS) did not decrease for those using the hospital or ICU. From 2010 to 2015, we observed a decrease in hospital admissions for all age groups and in ICU admissions for those over 65 years. As there were no changes in the proportion of patients with chronic illness who died at home nor in hospital or ICU LOS in the last 30 days, hospital and ICU admissions in the last 30 days may be a more responsive quality metric than site of death or LOS for palliative care interventions. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  8. Chronic cough postacute respiratory illness in children: a cohort study.

    Science.gov (United States)

    O'Grady, Kerry-Ann F; Drescher, Benjamin J; Goyal, Vikas; Phillips, Natalie; Acworth, Jason; Marchant, Julie M; Chang, Anne B

    2017-11-01

    Data on the aetiology of persistent cough at the transitional stage from subacute to chronic cough (>4 weeks duration) are scarce. We aimed to (1) identify the prevalence of chronic cough following acute respiratory illness (ARI) and (2) determine the diagnostic outcomes of children with chronic cough. Prospective cohort study. A paediatric emergency department (ED) in Brisbane, Australia. Children aged cough. Children were followed weekly for 28 days;those with a persistent cough at day 28 were reviewed by a paediatric pulmonologist. Cough persistence at day 28 and pulmonologist diagnosis. 2586 children were screened and 776 (30%) were ineligible; 839 children (median age=2.3 years, range=0.5 months to 14.7 years, 60% male) were enrolled over 2 years. Most children (n=627, 74.8%) had cough duration of cough irrespective of cough duration at enrolment. The cough was wet in 59/171 (34.5%), dry in 45/171 (26.4%) and variable in 28/171 (16.1%). Of these 117 children , 117 (68.4%) were reviewed by a paediatric pulmonologist. A new and serious chronic lung disease was diagnosed in 36/117 (30.8%) children; 55/117 (47.0%) were diagnosed with protracted bacterial bronchitis. When chronic cough develops post-ARI, clinical review is warranted, particularly if parents report a history of prolonged or recurrent cough. Parents of children presenting acutely to ED with cough should be counselled about the development of chronic cough, as an underlying respiratory condition is not uncommon. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  9. Identity and psychological ownership in chronic illness and disease state.

    Science.gov (United States)

    Karnilowicz, W

    2011-03-01

    Psychological ownership is rarely considered in health discourse related to chronic illness or disease state. Construction of identity is an important consideration within this framework. This autoethnographic study explores psychological ownership and identity related to prostate cancer and chronic illness. Conclusions about the nature of psychological ownership and identity were gathered from the relevant literature and personal experience. Themes include the patient-healthcare professional relationship and that psychological ownership is personal and grounded in an individual's sense of identity, control and perceived capacity to control illness or disease. Personal reflection through autoethnography guides discussion of psychological ownership and identity. © 2010 Blackwell Publishing Ltd.

  10. Management of Chronic Kidney Disease Patients in the Intensive Care Unit: Mixing Acute and Chronic Illness.

    Science.gov (United States)

    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.

  11. Impact of childhood chronic illnesses on siblings: a literature review.

    LENUS (Irish Health Repository)

    O' Brien, Irene

    2012-02-01

    BACKGROUND: Childhood illness can have a significant impact on families, particularly on the ill child\\'s siblings. There is a dearth of published literature focusing on the needs of siblings of ill children. AIM: This literature review aims to provide an overview of the current healthcare literature in relation to the impact of childhood chronic illness or disability on siblings. METHOD: A literature review was undertaken by searching the databases CINAHL, PsycINFO, ProQuest and Cochrane Library for relevant articles in English using the search terms: \\'siblings\\

  12. Return Migration among Elderly, Chronically Ill Bosnian Refugees

    DEFF Research Database (Denmark)

    Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian

    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...

  13. Prevalence of chronic illnesses and characteristics of chronically ill informal caregivers of persons with dementia.

    Science.gov (United States)

    Wang, Xiao Rong; Robinson, Karen M; Carter-Harris, Lisa

    2014-01-01

    to examine the prevalence of and the link of chronic illnesses (CIs) to informal caregivers of persons with dementia (PWDs), as well as to identify characteristics of caregivers with CIs. the sample included 124 caregivers of PWDs from a caregiver programme of research. Sociodemographic information and caregivers CIs were collected by an in-person interview. Descriptive statistics, t-tests, chi-square analysis and binary logistic regressions were performed for data analysis. approximately 81.5% (n = 101) of caregivers reported having at least one CI, 60.5% (n = 75) reported two or more CIs. Caregivers with CIs were more likely to be older and unemployed; advanced age and female gender were risk factors for CIs. The link of CIs to caregivers was stronger in younger caregivers but weaker in older caregivers when compared with the general population. targeted interventions based on this study need to be developed to improve the health of caregivers of PWDs.

  14. Mind-Body Approaches and Chronic Illness: Status of Research

    Science.gov (United States)

    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…

  15. Hypothalamic inflammation and food intake regulation during chronic illness

    NARCIS (Netherlands)

    Dwarkasing, J.T.; Marks, D.L.; Witkamp, R.F.; Norren, van K.

    2016-01-01

    Anorexia is a common symptom in chronic illness. It contributes to malnutrition and strongly affects survival and quality of life. A common denominator of many chronic diseases is an elevated inflammatory status, which is considered to play a pivotal role in the failure of food-intake regulating

  16. Chronic mentally ill women: emergence and legitimation of program issues.

    Science.gov (United States)

    Bachrach, L L

    1985-10-01

    Program development for chronic mentally ill women is emerging in a climate where more general concerns relating to women's health and mental health are increasingly being examined. Although in the past the special needs of chronic mentally ill women have received scant attention in the professional literature, there is evidence today of a growing commitment to serving this population. The author traces the emergence and legitimation of three specific issues--homelessness, skills training, and family planning--that reflect the complexity of program development for this population. As specific issues in service delivery to chronic mentally ill women come to the fore and move toward relevant solutions, we may anticipate a sharpening of planning concepts. Both male and female chronic mental patients stand to benefit from these developments.

  17. [The rehabilitation under alpine conditions of the participants in the cleanup of the accident at the Chernobyl Atomic Electric Power Station who are ill with chronic bronchitis].

    Science.gov (United States)

    Brimkulov, N N; Abdulina, A A; Davletalieva, N E; Bakirova, A N; Karamuratov, A; Mirrakhimov, M M

    1996-01-01

    24 patients exposed to low-dose radiation after the Chernobyl accident were examined before and after 24-day treatment of chronic bronchitis in the high-altitude rehabilitation center (3200 m above the sea level) in Tien Shan. Sanogenic alpine climate improved the patients' general condition, physical performance and lung ventilation, corrected compromised immunity. After high-altitude adaptation tracheobronchial inflammation alleviated, cytologic composition and surface activity of bronchoalveolar fluid returned to normal. Therefore, high-altitude treatment of Chernobyl accident victims with chronic bronchitis is effective and can be recommended for such patients.

  18. Chronic Pain Among Homeless Persons with Mental Illness.

    Science.gov (United States)

    Vogel, Marc; Frank, Anastasia; Choi, Fiona; Strehlau, Verena; Nikoo, Nooshin; Nikoo, Mohammadali; Hwang, Stephen W; Somers, Julian; Krausz, Michael R; Schütz, Christian G

    2017-12-01

    Chronic pain is an important public health issue. However, characteristics and needs of marginalized populations have received limited attention. Studies on prevalence and correlates of chronic pain among homeless persons are lacking. We assessed chronic pain among homeless persons with mental illness in the At Home/Chez Soi study. Cross-sectional data from a randomized controlled trial on homelessness and mental health. Data collected between 2009 and 2013 in three Canadian cities. One thousand two hundred eighty-seven homeless persons with mental illness. Data on chronic pain and utilization of prescribed and nonprescribed interventions was assessed using a chronic pain screening instrument. Mental illness was diagnosed with the Mini-International Neuropsychiatric Interview. Forty-three percent reported moderate to severe chronic pain, interfering with general daily activities (80%), sleep (78%), and social interactions (61%). Multivariate analysis indicated that increasing age and diagnoses of major depressive disorder, mood disorder with psychotic features, panic disorder, and post-traumatic stress disorder (PTSD) were independent predictors of chronic pain. Chronic pain was further associated with increased suicidality. Among participants reporting chronic pain, 64% had sought medical treatment and 56% treated pain with prescribed drugs, while 38% used illicit drugs for pain relief. Chronic pain is very common among homeless persons with mental illness and affects activities of daily living. Clinicians treating this population should be aware of the common connections between chronic pain, depression, panic disorder, PTSD, and substance use. While the data indicate the contribution of chronic pain to complex treatment needs, they also indicate a clear treatment gap. © 2017 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  19. Visibility and invisibility in chronic illness

    NARCIS (Netherlands)

    Hoppe, S.

    2010-01-01

    Does the visibility of a condition necessarily lead to stigmatization? Is it easier to suffer from an invisible than a visible condition? And what are the consequences of living with an invisible or visible illness? In this article the author draws on the concepts of stigma and concealability to

  20. Skin disorders in chronic psychiatric illness

    NARCIS (Netherlands)

    Mookhoek, E. J.; van de Kerkhof, P. C. M.; Hovens, J. E. J. M.; Brouwers, J. R. B. J.; Loonen, A. J. M.

    2010-01-01

    Background Chronic psychiatric patients are prone to develop skin diseases. However, epidemiological data are scarce. Objective To describe the prevalence of skin complaints and dermatological disorders in residential psychiatric patients. Methods Ninety-one randomly chosen patients of the

  1. Coping with chronic illness: the mediating role of biographic and illness-related factors.

    Science.gov (United States)

    Viney, L L; Westbrook, M T

    1982-01-01

    The aim of this research was to examine the mediating roles played by a range of biographic and illness-related factors in preferences for strategies for coping with chronic illness. Chronically-ill patients assessed their own coping strategy preference by ranking six clusters of strategies. Information was also obtained about their demographic characteristics, life styles, illness roles, the degree of their disability, their perceived handicaps and their perceived achievement of their rehabilitation goals. Multiple regression analyses of each of these six sets of variables on each coping strategy were carried out to identify patterns of association between them. (1) Preferences for action strategies were found to be associated with patient-related factors (demographic characteristics, life style and illness role). (2) Control strategies were associated with illness-related factors (illness role, degree of disability, perceived handicap and achievement of rehabilitation goals). (3) Escape strategies were ranked higher by women than by men, sex being their only significant predictor. (4) Preferences for fatalism, unlike those for action strategies, were associated with relatively low social status and relatively little interpersonal involvement or social commitment. (5) Preferences for optimism were related only to patients' perceptions of their handicaps. (6) Interpersonal coping was not found to be associated with any of this wide range of biographic illness-related factors.

  2. Understanding the impact of chronic childhood illness on families.

    Science.gov (United States)

    Sabbeth, B

    1984-02-01

    A great deal has been written about mothers and their relationships with their ill children. Fathers, however, have been relatively excluded from the research, as they have been from many pediatrician-mother-child interactions. Although it has been noted that some fathers tend to withdraw from the family, in fact very little is known about the impact of childhood illness on their lives. In general, studies of mothers, fathers, siblings, marriage, and families emphasize psychopathology and other psychosocial problems. Yet, there is a growing awareness in the social sciences that we have much to learn from the capacity to adjust. How is it that some families of chronically ill children survive so well? This question has not been addressed. Most studies focus on individual constituents of the family. Minuchin and others have taught us about aberrant family systems that sometimes develop around chronically ill children. Such systems are characterized by high cohesion and conformity, and the absence of apparent friction. How frequently do such systems develop? How can they be prevented? Finally, understanding the impact of chronic childhood illness on families is a difficult task. Parents have reasons for obscuring the impact, and particularly their distress, from the view of their pediatrician. Physicians are often uncertain how much understanding they ought to offer. Careful attention to the parent-pediatrician relationship is essential to a thorough understanding of the impact of childhood illness on the family.

  3. A basic residency curriculum concerning the chronically mentally ill.

    Science.gov (United States)

    Faulkner, L R; Cutler, D L; Krohn, D D; Factor, R M; Goldfinger, S M; Goldman, C R; Lamb, H R; Lefley, H; Minkoff, K; Schwartz, S R

    1989-10-01

    In this paper a group of knowledgeable individuals with expertise in psychiatric education present their recommendations for a basic psychiatric residency curriculum concerning the chronically mentally ill. The proposed curriculum consists of knowledge, skill, and attitude educational objectives, as well as clinical experiences, faculty supervision, didactics and seminars, and evaluation mechanisms. Recommendations are also made concerning changes in the Accreditation Council for Graduate Medical Education's Special Requirements for Residency Training in Psychiatry, which would require residency programs to place more emphasis on training to meet the needs of the chronically mentally ill. Obstacles to the implementation of the proposed recommendations are presented and possible solutions are discussed.

  4. Voting preferences of outpatients with chronic mental illness in Germany.

    Science.gov (United States)

    Bullenkamp, Jens; Voges, Burkhard

    2004-12-01

    Outpatients with chronic mental illness living in therapeutic residential facilities in Mannheim, Germany (N=110) responded to an opinion poll to determine their voting preferences for the 2002 federal election to the Bundestag. The poll found that the outpatients were significantly more likely than the general population in Mannheim to prefer left-wing parties (78 percent compared with 56 percent). This finding is in contrast to earlier reports; however, it seems to better reflect common beliefs about the political preferences of this population. In conclusion, persons with chronic mental illness seem to prefer political parties that they believe will best serve their perceived specific interests.

  5. Economic hardship associated with managing chronic illness: a qualitative inquiry

    Directory of Open Access Journals (Sweden)

    Jan Stephen

    2009-10-01

    Full Text Available Abstract 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

  6. Economic hardship associated with managing chronic illness: a qualitative inquiry.

    Science.gov (United States)

    Jeon, Yun-Hee; Essue, Beverley; Jan, Stephen; Wells, Robert; Whitworth, Judith A

    2009-10-09

    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. 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. 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. 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

  7. AIDS as chronic illness: epidemiological transition and health care ...

    African Journals Online (AJOL)

    This paper suggests that people in south-eastern Botswana experience the AIDS epidemic as part of a recent epidemiological transition in which rates of chronic debilitating illness have risen, even as the degree of acute infectious disease has fallen (HIV/AIDS aside). Whereas international health programmes and ...

  8. Psychosocial Adaptation to Chronic Illness and Disability: A Conceptual Framework.

    Science.gov (United States)

    Livneh, Hanoch

    2001-01-01

    Reviews the fundamental components inherent in the process of psychosocial adaptation to chronic illness and disability. It is proposed that psychosocial outcomes correspond to specific or global indicators of quality of life and may be categorized according to their functional domains, content areas, technologies or methods of assessment, and…

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

    Science.gov (United States)

    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.

  10. Approaches to self-management in chronic illness.

    Science.gov (United States)

    Novak, Marta; Costantini, Lucia; Schneider, Sabrina; Beanlands, Heather

    2013-01-01

    Management of a chronic medical condition is a complex process and requires coordinated action between healthcare providers and patients. This process is further complicated by the fact that an increasing number of patients suffer from multiple chronic conditions. Self-management involves active participation of the patients in the everyday care of the symptoms of their illness(es) and medical treatments, as well as maintaining general health and prevention of progression of medical conditions. Managing the psychosocial consequences of illness is also an important component of self-management. Data have demonstrated that enhancing self-management improves quality of life, coping, symptom management, disability, and reduces healthcare expenditures and service utilization. To foster self-management, potential barriers to implementation as well as facilitators and supports for this approach must be acknowledged. In this article, we review various aspects of self-management in chronic illness, focusing on chronic kidney disease. Better understanding of these concepts will facilitate patient-provider collaboration, improve patient care with increased patient and staff satisfaction, and may ultimately result in better clinical outcomes and enhanced quality of life for both the patients and their families. © 2013 Wiley Periodicals, Inc.

  11. Coping with Chronic Illness in Childhood and Adolescence

    Science.gov (United States)

    Compas, Bruce E.; Jaser, Sarah S.; Dunn, Madeleine J.; Rodriguez, Erin M.

    2012-01-01

    Chronic illnesses and medical conditions present millions of children and adolescents with significant stress that is associated with risk for emotional and behavioral problems and interferes with adherence to treatment regimens. We review research on the role of child and adolescent coping with stress as an important feature of the process of adaptation to illness. Recent findings support a control-based model of coping that includes primary control or active coping (efforts to act on the source of stress or one’s emotions), secondary control or accommodative coping (efforts to adapt to the source of stress), and disengagement or passive coping (efforts to avoid or deny the stressor). Evidence suggests the efficacy of secondary control coping in successful adaptation to chronic illness in children and adolescents, disengagement coping is associated with poorer adjustment, and findings for primary control coping are mixed. Avenues for future research are highlighted. PMID:22224836

  12. Chronic conditions, fluid states: chronicity and the anthropology of illness

    National Research Council Canada - National Science Library

    Manderson, Lenore; Smith-Morris, Carolyn

    2010-01-01

    ... in the field, address the concept of chronicity, an idea used to explain individual and local life-worlds, question public health discourse, and consider the relationship between health and the globalizing forces that shape it."--pub. desc.

  13. Do everyday problems of people with chronic illness interfere with their disease management? Chronic Disease epidemiology

    NARCIS (Netherlands)

    Van Houtum, Lieke; Rijken, Mieke; Groenewegen, Petrus

    2015-01-01

    Background: 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

  14. Communicating the experience of chronic pain and illness through blogging.

    Science.gov (United States)

    Ressler, Pamela Katz; Bradshaw, Ylisabyth S; Gualtieri, Lisa; Chui, Kenneth Kwan Ho

    2012-10-23

    Although more individuals are sharing their experiences with chronic pain or illness through blogging (writing an Internet web log), research on the psychosocial effects and motivating factors for initiating and maintaining a blog is lacking. The objective was to examine via online questionnaire the perceived psychosocial and health benefits of blogging among patients who use this media to communicate their experience of chronic pain or illness. A 34-item online questionnaire was created, tested, and promoted through online health/disease forums. The survey employed convenience sampling and was open from May 5 to July 2, 2011. Respondents provided information regarding demographics, health condition, initiation and upkeep of blogs, and dynamics of online communication. Qualitative data regarding respondents' blogging experiences, expectations for blogging, and the perceived effects from blogging on the blogger's health, interpersonal relationships, and quality of life were collected in the form of written narrative. Out of 372 respondents who started the survey, 230 completed the entire questionnaire. Demographic data showed survey respondents to be predominantly female (81.8%) and highly educated (97.2% > high school education and 39.6% with graduate school or professional degrees). A wide spectrum of chronic pain and illness diagnoses and comorbidities were represented. Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness. Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a

  15. Chronic illness and consumer inequality: the impact of health costs on people with chronic illnesses in rural and regional Australia.

    Science.gov (United States)

    Walker, Christine

    2007-05-01

    This paper presents the results of a survey undertaken in rural and regional Victoria in 2003 on the total costs faced by households caring for people with chronic illnesses. The impact of these costs for the households is discussed in the context of neo-liberal policy development by Australian governments and the effects of those policies on such households.

  16. Outcomes in critically ill chronic lymphocytic leukemia patients.

    Science.gov (United States)

    Xhaard, Aliénor; Epelboin, Loic; Schnell, David; Vincent, François; Levy, Vincent; Malphettes, Marion; Azoulay, Elie; Darmon, Michaël

    2013-07-01

    Although recent studies have demonstrated an improvement in the prognosis of critically ill cancer patients, little is known regarding the prognosis of patients with non-aggressive underlying malignancies. The aims of this study were to assess the prognosis of critically ill patients with chronic lymphocytic leukemia (CLL) and to evaluate risk factors for hospital mortality. In retrospective mono-center cohort study, consecutive adult patients with CLL requiring ICU admission from 1997 to 2008 were included. Sixty-two patients of 67 years (62-75) were included. Median time interval between CLL diagnosis and ICU admission was 6.7 years (2.6-10.8). Nine patients (15 %) had stage C disease at the time of ICU admission, and seven patients (11 %) had Richter syndrome. Most ICU admissions were related to bacterial or fungal pulmonary infections (n = 47; 76 %). ICU, in-hospital, and 90-day mortality were 35 % (n = 22), 42 % (n = 26), and 58 % (n = 36), respectively. Only three factors were independently associated with in-hospital mortality: oxygen saturation lower than 95 % when breathing room air (odds ratio (OR) 5.80; 95 % confidence interval (CI) 1.23-27.33), need for vasopressors (OR 27.94; 95 % CI 5.37-145.4), and past history of infection (OR 6.62; 95 % CI 1.34-32.68). The final model did not change when disease-related variables (Binet classification, Richter syndrome, long-term steroids) or treatment-related variables (fludarabine, rituximab, or alemtuzumab) were included. Acute pulmonary infections remain the leading cause of ICU admission in patients with CLL. The severity at ICU admission and past history of infection were the only factors associated with hospital mortality. Neither disease characteristics nor previous cancer treatments were associated with outcome.

  17. Cost-of-illness of chronic leg ulcers in Germany.

    Science.gov (United States)

    Purwins, Sandra; Herberger, Katharina; Debus, Eike Sebastian; Rustenbach, Stephan J; Pelzer, Peter; Rabe, Eberhard; Schäfer, Elmar; Stadler, Rudolf; Augustin, Matthias

    2010-04-01

    Chronic wounds are important because of their frequency, their chronicity and high costs of treatment. However, there are few primary data on the cost-of-illness in Germany. The aim was to determine the cost-of-illness of venous leg ulcers (VLU) in Germany. Prospective cost-of-illness study was performed in 23 specialised wound centres throughout Germany. Direct, medical, non medical and indirect costs to the patient, statutory health insurers and society were documented. Thereover, health-related quality of life (QoL) was recorded as intangible costs using the Freiburg quality of life assessment for wounds (FLQA-w, Augustin). A total of 218 patients (62.1% female) were recruited consecutively. Mean age was 69.8 +/- 12.0 years. The mean total cost of the ulcer per year and patient was 9569 euros, [8658.10 euros (92%) direct and 911.20 euros (8%) indirect costs]. Of the direct costs, 7630.70 euros was accounted for by the statutory health insurance and 1027.40 euros by the patient. Major cost factors were inpatient costs, outpatient care and non drug treatments. QoL was strikingly reduced in most patients. In Germany, VLU are associated with high direct and indirect costs. As a consequence, there is a need for early and qualified disease management. Deeper-going cost-of-illness-studies and cost-benefit analyses are necessary if management of chronic wounds is to be improved.

  18. [Strategies of coping with chronic illness in adolescents].

    Science.gov (United States)

    Flores-Carvajal, Daniel; Urzúa M, Alfonso

    2016-01-01

    To develop a tool to evaluate coping strategies for chronic illness in adolescents. Based on a theoretical review and semi-structured interviews with adolescents, a questionnaire was prepared that was finally evaluated by judges experienced in in understanding, relevance and viability. A scale is proposed that consists of 60 items grouped into 12 coping families. The scale may be a useful clinical tool to provide key information about the experience and ways to cope with illness in adolescents. Copyright © 2015 Sociedad Chilena de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.

  19. A Narrative: Meditation In The Lives Of Children With Chronic Illness

    Directory of Open Access Journals (Sweden)

    Taunya WIDEMAN-JOHNSTON

    2012-07-01

    Full Text Available The presence of chronic illness in ones life often entails endless appointments, tests, medications, treatments, and procedures. In the instances of children with chronic illness, they do not know what life consists of without their illness, and consequently, have lived with many restrictions. Children with chronic illness and their families are not only in need of traditional methods and strategies from the medical model but are often in need of additional strategies to support and cope with the nature and effects of the chronic illness. This paper focuses on how mediation, mindfulness, and visualization strategies aid individuals with chronic illness.

  20. Older Adults’ Perception of Chronic Illness Management in South Korea

    Directory of Open Access Journals (Sweden)

    Minah Kang

    2014-07-01

    Full Text Available Objectives: Despite the recent emphasis on a patient-centered chronic care model, few studies have investigated its use in older adults in South Korea. We explored how older Korean adults perceive and cope with their chronic illness. Methods: We conducted focus group interviews in Seoul, Korea in January 2010. Focus groups were formed by disease type (hypertension and type 2 diabetes and gender using purposive sampling. Inclusion criteria were patients aged 60 and over who had been diagnosed with diabetes or hypertension and received care at a community health center for at least six months prior to participation. Interview data were analyzed through descriptive content analysis. Results: Among personal factors, most participants felt overwhelmed when they received their diagnosis. However, with time and control of their acute symptoms using medication, their worry diminished and participants tended to denying being identified as a patient or sick person. Among socio-familial factors, participants reported experiencing stigma with their chronic illness and feeling it was a symbol of weakness. Instead of modifying their lifestyles, which might interfere with their social relationships, they resorted to only following their medicine regime prescribed by their doctor. Participants also reported feeling that their doctor only prescribed medications and acted in an authoritative and threatening manner to induce and reinforce participants’ compliance with treatment. Conclusions: For successful patient-centered management of chronic illnesses, supportive environments that include family, friends, and healthcare providers should be established.

  1. Psychosocial status in chronic illness. A comparative analysis of six diagnostic groups.

    Science.gov (United States)

    Cassileth, B R; Lusk, E J; Strouse, T B; Miller, D S; Brown, L L; Cross, P A; Tenaglia, A N

    1984-08-23

    Assumptions that psychological attributes are specific to particular diagnoses characterize many investigations of chronically ill patients. We studied 758 patients, each of whom had one of six different chronic illnesses, to determine and compare their scores on the Mental Health Index. Five groups of physically ill patients (with arthritis, diabetes, cancer, renal disease, or dermatologic disorders) did not differ significantly from one another or from the general public, but all had significantly higher scores for psychological status when compared with the sixth group, patients under treatment for depression. There was a significant direct relation between higher mental-health scores and advancing age across all patient populations. Patients with recently diagnosed illness in all groups had poorer mental-health scores than did patients whose illness had been diagnosed more than four months previously. A direct relation between declining physical status and mental-health scores was observed. These results suggest that psychological adaptation among patients with chronic illnesses is remarkably effective and fundamentally independent of specific diagnosis.

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

    Science.gov (United States)

    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.

  3. Chronic Neurodegenerative Illnesses and Epilepsy in Danish Adventists and Baptists

    DEFF Research Database (Denmark)

    Thygesen, Lau Caspar; Gimsing, Louise Nørreslet; Bautz, Andrea

    2017-01-01

    are neurodegenerative, whereas epilepsy can occur at any age. METHODS: We compared hospital admission rates for some major neurological diseases among members of the Danish Religious Societies Health Study comprising 6,532 SDA and 3,720 Baptists with the general Danish population. Standardized incidence rates (SIR......BACKGROUND: Limited knowledge of the influence of lifestyle risk factors and religious living on chronic neurological diseases exist. Seventh-day Adventists (SDA) do not consume tobacco, alcohol, or pork, and many adhere to lacto-ovo-vegetarian diet, and Baptists discourage excessive use of alcohol...... and tobacco. OBJECTIVE: We investigated whether the incidence of four common chronic neurological illnesses: dementia, Alzheimer's disease, Parkinson's disease, and epilepsy in a large cohort of Danish Adventists and Baptists was different compared to the general Danish population. Three of the illnesses...

  4. Rural women, technology, and self-management of chronic illness.

    Science.gov (United States)

    Weinert, Clarann; Cudney, Shirley; Hill, Wade G

    2008-09-01

    The objective of this study was to determine the differences in the psychosocial status of 3 groups of chronically ill rural women participating in a computer intervention. The 3 groups were: intense intervention, less-intense intervention, and control. At baseline and following the intervention, measures were taken for social support, self-esteem, empowerment, self-efficacy, depression, stress, and loneliness. ANCOVA results showed group differences for social support and self-efficacy among the overall group. The findings differed for a vulnerable subgroup, with significant between-group differences for social support and loneliness. It was concluded that a computer-delivered intervention can improve social support and self-efficacy and reduce loneliness in rural women, enhancing their ability to self-manage and adapt to chronic illness.

  5. Facilitating critical reflection in mothers of chronically ill children.

    Science.gov (United States)

    Gibson, C H

    1999-05-01

    The hybrid model, developed by Schwartz-Barcott & Kim guided the conduct of a study of empowerment in mothers of chronically ill children. Integral to the model of empowerment that emerged from the study was an ongoing process of critical reflection. Through this process, mothers became aware of their strengths, abilities and resources. This paper is an in-depth analysis of the process of critical reflection, which corroborates recent theory on women's development. The process of critical reflection is illuminated by women's ways of knowing, as exemplified in the story of one mother, and by elements of maternal thinking. Implications for nursing practice in working with mothers of chronically ill children are highlighted.

  6. The relationship between chronic illness, chronic pain, and socioeconomic factors in the ED.

    Science.gov (United States)

    Hanley, Owen; Miner, James; Rockswold, Erik; Biros, Michelle

    2011-03-01

    The study aimed to determine the prevalence of chronic illness and chronic pain in emergency department (ED) patients across demographic backgrounds. This was a cross-sectional study at an urban, level I trauma center with 98,000 annual visits. This was a prospective sample of adult patients presenting to the ED during a randomized distribution of daily 8-hour periods between June 4 and August 26, 2007. Prevalence of chronic illness was compared to subject demographics using logistic regression, and prevalence of chronic pain was compared using ordinal logistic regression. Six thousand nine hundred sixty-one patients presented during the data collection periods; 3882 were eligible, and 3132 (82%) were enrolled (51.7% male; age, 41.1 ± 15.8 years; range, 18-98 years). Chronic illness was reported in 36.3% of patients and chronic pain in 34.9% of patients. Chronic illness was associated with homelessness (odds ratio [OR], 1.75; 95% confidence interval [CI], 1.17-2.61), family income less than $25,000 (OR, 2.27; 95% CI, 1.60-3.22), and lack of access to primary care facilities (OR, 2.68; 95% CI, 2.25-3.21). Chronic pain was associated with homelessness (OR, 2.56; 95% CI, 1.79-3.64), family income less than $25,000 (OR, 2.54; 95% CI, 1.91-3.39), and lack of access to primary care facilities (OR, 1.47; 95% CI, 1.26-1.70). Patient housing situation, family income, and perceived access to primary care medical facilities were associated with higher self-reported rates of chronic illness and chronic pain. Copyright © 2011 Elsevier Inc. All rights reserved.

  7. Attributions about cause of illness in chronic obstructive pulmonary disease.

    Science.gov (United States)

    Hoth, Karin F; Wamboldt, Frederick S; Bowler, Russell; Make, Barry; Holm, Kristen E

    2011-05-01

    Patients' beliefs about the causes of their illness have been associated with emotional adjustment and behavioral outcomes in several medical conditions; however, few studies have examined illness attributions among patients with chronic obstructive pulmonary disease (COPD). In the current study, patterns of patients' causal attributions for COPD were identified and examined in relation to health behaviors and symptoms. Three-hundred and ninety-four patients with COPD and >10 pack year history of smoking completed a self-report questionnaire that included the Illness Perception Questionnaire-Revised (IPQ-R). A factor analysis of the IPQ-R cause items using principal axis factoring yielded four individual items (i.e., smoking, heredity, pollution, and personal behavior) and one large factor that was primarily driven by psychological attributions. Ninety-three percent of patients agreed or strongly agreed that smoking was a cause of their COPD. Higher scores on the large IPQ-R factor were associated with reduced quality of life (r=.25, PIPQ-R in other chronic illness populations. This difference may be due to the importance of smoking, environmental exposures, and heredity in the development of COPD. Future research should expand upon these specific attributions in COPD. Copyright © 2010 Elsevier Inc. All rights reserved.

  8. [Chronic illnesses and education. Diabetes mellitus as a paradigm].

    Science.gov (United States)

    Viniegra-Velázquez, Leonardo

    2006-01-01

    The purpose of this essay is to controvert ideas that prevail about chronic illnesses, using type 2 diabetes mellitus as an example, and to propose another way of thinking, perceiving, and acting towards them. Initially the dominant vision of the disease as a deviation from the health path is confronted with another one that considers it as a specific way of being of certain groups of persons. It brings out how the idea of deviation, when favoring the technical aspects of medical practice, often compares the organism with a machine. On the other hand, the idea of disease as a way of being when rescuing the most distinctive qualities of life, allows a more penetrating understanding of the patient and his illness. Trying to overcome the limitations that the notion of natural history of disease impose, the concept of cultural history of disease is proposed, showing how culture has a determining role in the expression of illnesses. The role and type of education within the strategies of health care in chronic diseases are discussed. Participatory education--particularly in the therapeutic communities of patients--is proposed as the most powerful resource to bring the patient closer to better life circumstances and healthier habits that allow the self-control of the illness.

  9. DIFFERENCES IN ILLNESS REPRESENTATIONS IN PATIENTS WITH CHRONIC KIDNEY DISEASE.

    Science.gov (United States)

    Pagels, Agneta A; Söderquist, Birgitta Klang; Heiwe, Susanne

    2015-09-01

    To explore the impact of chronic kidney disease (CKD) on individual illness representations, including symptoms and causal attributions. Fifty-four patients responded to the Illness Perception Questionnaire (IPQ-R) and a further seven patients undertook cognitive interviews regarding the IPQ-R. All respondents had CKD stage 2-5, not undergoing renal replacement therapy. Those in earlier CKD stages and those with fewer symptoms perceived a significantly different understanding of their condition than those in more advanced disease stages or with more symptoms. Behavioural and psychological attributions were commonly referred to as contributing causes to CKD. These attributions were associated to negative illness representations. An uncertainty assessing symptoms attributed to CKD was indicated, especially in earlier disease stages. Illness representations differ with CKD stages and symptom burden. The patients in earlier disease stages or with fewer symptoms did not hold as strong beliefs about their illness as being a threat as those in advanced stages or with more symptoms. Self-blame emerged as a common causal attribution. Patients did not always relate symptoms to CKD, therefore this study identifies a gap in patients' disease knowledge, especially in earlier stages of the condition. © 2015 European Dialysis and Transplant Nurses Association/European Renal Care Association.

  10. Systematic review of character development and childhood chronic illness.

    Science.gov (United States)

    Maslow, Gary R; Hill, Sherika N

    2016-05-08

    To review empirical evidence on character development among youth with chronic illnesses. A systematic literature review was conducted using PubMed and PSYCHINFO from inception until November 2013 to find quantitative studies that measured character strengths among youth with chronic illnesses. Inclusion criteria were limited to English language studies examining constructs of character development among adolescents or young adults aged 13-24 years with a childhood-onset chronic medical condition. A librarian at Duke University Medical Center Library assisted with the development of the mesh search term. Two researchers independently reviewed relevant titles (n = 549), then abstracts (n = 45), and finally manuscripts (n = 3). There is a lack of empirical research on character development and childhood-onset chronic medical conditions. Three studies were identified that used different measures of character based on moral themes. One study examined moral reasoning among deaf adolescents using Kohlberg's Moral Judgement Instrument; another, investigated moral values of adolescent cancer survivors with the Values In Action Classification of Strengths. A third study evaluated moral behavior among young adult survivors of burn injury utilizing the Tennessee Self-Concept, 2(nd) edition. The studies observed that youth with chronic conditions reasoned at less advanced stages and had a lower moral self-concept compared to referent populations, but that they did differ on character virtues and strengths when matched with healthy peers for age, sex, and race/ethnicity. Yet, generalizations could not be drawn regarding character development of youth with chronic medical conditions because the studies were too divergent from each other and biased from study design limitations. Future empirical studies should learn from the strengths and weaknesses of the existing literature on character development among youth with chronic medical conditions.

  11. Illness progression in chronic fatigue syndrome: a shifting immune baseline.

    Science.gov (United States)

    Russell, Lindsey; Broderick, Gordon; Taylor, Renee; Fernandes, Henrique; Harvey, Jeanna; Barnes, Zachary; Smylie, AnneLiese; Collado, Fanny; Balbin, Elizabeth G; Katz, Ben Z; Klimas, Nancy G; Fletcher, Mary Ann

    2016-03-10

    Validation of biomarkers for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) across data sets has proven disappointing. As immune signature may be affected by many factors, our objective was to explore the shift in discriminatory cytokines across ME/CFS subjects separated by duration of illness. Cytokine expression collected at rest across multiple studies for female ME/CFS subjects (i) 18 years or younger, ill for 2 years or less (n = 18), (ii) 18-50 years of age, ill for 7 years (n = 22), and (iii) age 50 years or older (n = 28), ill for 11 years on average. Control subjects were matched for age and body mass index (BMI). Data describing the levels of 16 cytokines using a chemiluminescent assay was used to support the identification of separate linear classification models for each subgroup. In order to isolate the effects of duration of illness alone, cytokines that changed significantly with age in the healthy control subjects were excluded a priori. Optimal selection of cytokines in each group resulted in subsets of IL-1α, 6, 8, 15 and TNFα. Common to any 2 of 3 groups were IL-1α, 6 and 8. Setting these 3 markers as a triple screen and adjusting their contribution according to illness duration sub-groups produced ME/CFS classification accuracies of 75-88 %. The contribution of IL-1α, higher in recently ill adolescent ME/CFS subjects was progressively less important with duration. While high levels of IL-8 screened positive for ME/CFS in the recently afflicted, the opposite was true for subjects ill for more than 2 years. Similarly, while low levels of IL-6 suggested early ME/CFS, the reverse was true in subjects over 18 years of age ill for more than 2 years. These preliminary results suggest that IL-1α, 6 and 8 adjusted for illness duration may serve as robust biomarkers, independent of age, in screening for ME/CFS.

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

    Science.gov (United States)

    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.

  13. Topical Review: Adolescent Self-Regulation as a Foundation for Chronic Illness Self-Management

    Science.gov (United States)

    Lansing, Amy Hughes

    2014-01-01

    Objective To illustrate adolescent self-regulation as a foundation for both individual and interpersonal processes in adolescent chronic illness self-management. Method Literature review. Results Research has identified multiple individual (e.g., self-efficacy, coping, and adherence) and interpersonal factors (parental monitoring and friend support) that are sources of risk and resilience to adolescent chronic illness self-management. In this article, we highlight literature consistent with the idea that self-regulation (including cognitive, emotional, and behavioral regulation) underlies both individual and interpersonal sources of risk and resilience across development. Conclusions This self-regulation approach has multiple benefits: A parsimonious construct for explaining both individual and interpersonal processes that contribute to risk and resilience for chronic illness self-management, the incorporation of methods used in developmental and health psychology research, including performance-based, physiological, daily, and ecological momentary assessment, and a new look to interventions that target self-regulation as a way to improve individual and interpersonal processes in chronic illness self-management. PMID:25214646

  14. Achieving harmony with oneself: life with a chronic illness.

    Science.gov (United States)

    Delmar, Charlotte; Bøje, Trine; Dylmer, Dorrit; Forup, Lisbeth; Jakobsen, Christina; Møller, Majbritt; Sønder, Hanne; Pedersen, Birthe D

    2005-09-01

    This paper presents partial findings of a larger research project focusing on what it means to live with a chronic illness. Getting in harmony with oneself is a movement towards, and a form of, acceptance of the chronic suffering and disease. Some patients achieve this level of acceptance, while for others the obstacles of everyday life make this movement towards acceptance difficult. Achieving harmony with oneself is conditioned by the existence of hope and spirit of life/life courage and by the pressure of doubts on this hope. Doubts can shake this hope so that instead of moving towards acceptance, the patient drifts towards hopelessness and despair. The research design is qualitative and uses a phenomenological-hermeneutic approach. A total of 18 patients were interviewed, divided into three groups of six patients diagnosed with 'type I' diabetes, colitis ulcerosa and patients with coronary occlusion in the rehabilitation phase. The goal of the research was to derive patterns/themes common to the three diagnosed groups regarding the patients' view of health and disease in connection with chronic illness and to elucidate the significance of this view for how the patients coped with everyday life. The research method is inspired by Paul Ricoeur.

  15. Family caregivers: Competence in the care of the chronically ill

    Directory of Open Access Journals (Sweden)

    Olga Marina Vega Angarita

    2018-01-01

    Full Text Available Introduction: Because of the high demand and costs of care, chronic diseases have shown an increasing number of caregivers who develop their role without the required training and skill. Objective: To describe the capacity for home care of caregivers of patients with chronic illness in a service provider institution of San José de Cúcuta. Materials and methods: Descriptive quantitative cross-sectional study, developed in the fi rst half of 2017. The sample was composed by 360 caregivers of patients with chronic disease. We used the instruments developed by the Chronic Patient Care Group of the Faculty of Nursing of the National University of Colombia called: GCPC-UN-C © - technical characterization chart for family caregivers of patients with chronic non-transferable disease and the instrument “Caring” - short version to measure the competence of care at home. Results: In the study, low and medium levels of competence of the caregivers were reported in the exercise of their role, and the categories Knowledge and Enjoyment (Welfare were more affected. It is important to note that caregivers with a high level of competence were not reported. Conclusion: The results show that the need for nursing intervention in strengthening the competence of caregivers remains an important constant of professional performance.

  16. Community residential options for the chronically mentally ill.

    Science.gov (United States)

    Cutler, D L

    1986-01-01

    We have discussed the problems of the new young chronic patients, deinstitutionalized old chronic patients now living in the community, and some of the groups of hard to place patients. We have talked about problems with community barriers, staff training, a spectrum of facilities, and we have looked at what new sorts of facilities may need to be developed. It seems clear that we have not yet developed a spectrum which can deal with all varieties of the chronically mentally ill. Pepper (1985) has suggested a different, more ideal spectrum of housing particularly suited to the young adult chronic patient. These include crisis residences, supervised 14-bed residences, growth house for 14 beds; support house for 14 beds; supervised apartments (satellite apartments), 14 beds; supportive apartments, 14 beds; (these have less intensive staffing than supervised ones); open community living; and residential congregate care for adults (RCCAs). These RCCAs are large facilities located either in old state hospitals or nursing homes which are primarily oriented towards the homeless mentally ill. According to Pepper, if a program can plan a spectrum of housing situations in the immediate catchment area, it can then actually meet the specific needs of each patient with a specific sort of residential facility. The challenge for community residences is certainly much greater than a decade ago and, with the homeless mentally ill population continuing to grow (Bachrach, 1985), one might be tempted to regard our present situation as one of crisis proportions. Clearly, there is little doubt that a need exists for a wide spectrum of living situations to be made available to the deinstitutionalized or never institutionalized young adult chronic patient. Yet very few incentives exist for those who would try to meet this challenge. To do this effectively will undoubtedly require the development of sizeable amounts of public funding through existing and new channels to provide support for

  17. The Impact of Chronic Illness on Psychosocial Stages of Human Development.

    Science.gov (United States)

    Lapham, E. Virginia, Ed.; Shevlin, Kathleen M., Ed.

    This book addresses critical issues regarding the impact of chronic illness and disability on human development. It was written for health care professionals who help chronically ill and disabled persons deal with the psychological and social as well as the biological aspects of their illness or disability. An expanded version of Erik Erikson's…

  18. Vitamin D deficiency in children with chronic illnesses: Predisposing and protecting factors

    OpenAIRE

    Koskivirta, Panu

    2011-01-01

    This thesis assesses clinical differences in patients with low and high vitamin D levels. The factors analyzed included the underlying disease, body size, age, ethnic background, use of vitamin D supplements and the season when the blood sample was taken. Fifty patients with the lowest and 50 patients with the highest vitamin D concentrations were selected from a cohort of 1351 chronically ill children and adolescents who had had their vitamin D status assessed at Children's Hospital. Protect...

  19. Chronic unremitting headache associated with Lyme disease-like illness

    Directory of Open Access Journals (Sweden)

    Pedro Andre Kowacs

    2013-07-01

    Full Text Available The Brazilian Lyme-disease-like illness (BLDLI or Baggio-Yoshinari syndrome is a unique zoonosis found in Brazil. It reproduces all the clinical symptoms of Lyme disease except for the high frequencies of relapse and the presence of autoimmune manifestations. Two cases of borreliosis manifesting with unremitting headache, which is a symptom associated with late-stage BLDLI, were presented. Clinical, therapeutic, and prognostic aspects of the BLDLI and its associated headaches were showed and discussed in this article. BLDLI diagnosis requires additional attention by physicians, since the disease has a tendency to progress to the late, recurrent stage or the chronic form, and the associated headache can be confused with chronic primary headache or with analgesic-overuse one. Special attention should be paid to patients with headaches who have traveled to endemic areas.

  20. 78 FR 6404 - Agency Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

    Science.gov (United States)

    2013-01-30

    ... whether eradication of these bacteria reduces symptoms of chronic diarrhea. An agency may not conduct or... AFFAIRS Agency Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf Veterans....'' SUPPLEMENTAL INFORMATION: Titles: a. Survey of Chronic Gastrointestinal Illness in Persian Gulf Veterans, VA...

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

    Science.gov (United States)

    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…

  2. Anatomical brain images alone can accurately diagnose chronic neuropsychiatric illnesses.

    Directory of Open Access Journals (Sweden)

    Ravi Bansal

    Full Text Available OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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

  3. Accuracy of triage for children with chronic illness and infectious symptoms.

    Science.gov (United States)

    Seiger, Nienke; van Veen, Mirjam; Steyerberg, Ewout W; van der Lei, Johan; Moll, Henriëtte A

    2013-12-01

    This prospective observational study aimed to assess the validity of the Manchester Triage System (MTS) for children with chronic illnesses who presented to the emergency department (ED) with infectious symptoms. Children (diarrhea/vomiting, or fever were included. Chronic illness was classified on the basis of International Classification of Diseases, Ninth Revision, Clinical Modification, codes. The validity of the MTS was assessed by comparing the urgency categories of the MTS with an independent reference standard on the basis of abnormal vital signs, life-threatening working diagnosis, resource utilization, and follow-up. Overtriage, undertriage, and correct triage were calculated for children with and without a chronic illness. The performance was assessed by sensitivity, specificity, and diagnostic odds ratios, which were calculated by dichotomizing the MTS into high and low urgency. Of the 8592 children who presented to the ED with infectious symptoms, 2960 (35%) had a chronic illness. Undertriage occurred in 16% of children with chronic illnesses and in 11% of children without chronic illnesses (P children with chronic illnesses was 58% (95% confidence interval [CI]: 53%-62%) and was 74% (95% CI: 70%-78%) for children without chronic illnesses. There was no difference in specificity between the 2 groups. The diagnostic odds ratios for children with and without chronic illnesses were 4.8 (95% CI: 3.9-5.9) and 8.7 (95% CI: 7.1-11), respectively. In children presenting with infectious symptoms, the performance of the MTS was lower for children with chronic illnesses than for children without chronic illnesses. Nurses should be particularly aware of undertriage in children with chronic illnesses.

  4. Strategies of normalization used by parents of chronically ill school age children.

    Science.gov (United States)

    Bossert, E; Holaday, B; Harkins, A; Turner-Henson, A

    1990-01-01

    The concept of normalization is examined in relation to chronically ill children. From this conceptual base, the responses of 365 parents in a survey of chronically ill children's use of time out of school, were analyzed to determine the normalization strategies used pertaining to the life of the child and family. This article discusses the appropriateness and importance of normalization, and presents implications for the professional nurse working with families of chronically ill children.

  5. Evidence supporting a link between dental amalgams and chronic illness, fatigue, depression, anxiety, and suicide.

    Science.gov (United States)

    Kern, Janet K; Geier, David A; Bjørklund, Geir; King, Paul G; Homme, Kristin G; Haley, Boyd E; Sykes, Lisa K; Geier, Mark R

    2014-01-01

    The purpose of this review is to examine the evidence for a relationship between mercury (Hg) exposure from dental amalgams and certain idiopathic chronic illnesses--chronic fatigue syndrome (CFS), fibromyalgia (FM), depression, anxiety, and suicide. Dental amalgam is a commonly used dental restorative material that contains approximately 50% elemental mercury (Hg0) by weight and releases Hg0 vapor. Studies have shown that chronic Hg exposure from various sources including dental amalgams is associated with numerous health complaints, including fatigue, anxiety, and depression--and these are among the main symptoms that are associated with CFS and FM. In addition, several studies have shown that the removal of amalgams is associated with improvement in these symptoms. Although the issue of amalgam safety is still under debate, the preponderance of evidence suggests that Hg exposure from dental amalgams may cause or contribute to many chronic conditions. Thus, consideration of Hg toxicity may be central to the effective clinical investigation of many chronic illnesses, particularly those involving fatigue and depression.

  6. Sexual behavior, body image, and partnership in chronic illness: a comparison of Huntington's disease and multiple sclerosis.

    Science.gov (United States)

    Reininghaus, Eva; Reininghaus, Bernd; Fitz, Werner; Hecht, Karen; Bonelli, Raphael Maria

    2012-08-01

    Huntington's disease (HD) and multiple sclerosis (MS) are both chronic progressive illnesses posing a serious challenge to affected patients and families. Sexual dysfunction in HD as well as in MS is a very common problem, although it is unclear whether the dysfunction is caused by the chronic illness itself or by the sociopsychiatric burden related to the illness. Twenty-nine patients with HD and 27 patients with MS each participated in a semistructured interview and several standardized questionnaires concerning partnership, sexual function, and body image. The results display significant differences in both patient groups, displaying higher sexual desire and activity in HD patients, but MS patients also reported fewer sexual problems compared to the norming values. Conversely, the MS patients' relationships seemed to be stable despite subjectively perceived lower initiative on sexual activities. The results are discussed under the possible influences of the underlying organic changes and the psychosocial consequences of chronic progressive disorders.

  7. Health Vlogs as Social Support for Chronic Illness Management.

    Science.gov (United States)

    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.

  8. Chronical Illness and the Issue of Context in Dietary Counselling

    DEFF Research Database (Denmark)

    Kristensen, Søren Tange

    In dietary counselling contextual food and eating issues are increasingly considered important when trying to promote dietary change. Besides transferring knowledge on healthy eating based on an assessment of the nutritional adequacy of clients diet priority is given to obtain the full dietary...... food and eating issues are taken into account in dietary counselling and how this reflects broader epistemological and political issues related to the prevention and management of chronic illness. A concluding statement from the study is that in order to empower clients, the complexity and contextual...... nature of food and eating needs to be addressed in a more systematic and critical way than is usually the case in dietary counselling. A narrative approach informed by insights from qualitative research on food and eating is suggested as a more context sensitive approach....

  9. [Impact of chronic illness on hospital nursing workloads].

    Science.gov (United States)

    Vallés, S; Valdavida, E; Menéndez, C; Natal, C

    2018-01-10

    To evaluate the short-term impact of chronic illness in hospital units and to establish a method that allows nursing workloads to be adapted according to the care needs of patients. A descriptive study of the evolution of workloads of nursing staff associated with the care needs of patients between 1 July 2014 and 30 June 2016, in a county hospital. The care needs of the patients were assessed daily using an adaptation of the Montesinos scheme. The estimated times of nursing care and auxiliary nursing required by the patients, based on their level of dependence for time distribution, were based on the standards and recommendations of the Ministry of Health, Social Services and Equality. During the study period, there was a change in the patient care needs, with no increase in activity, which resulted in an increase in the nursing staffing needs of 1,396 theoretical hours per year. This increase implies an increase in the workforce of 5 nurses in the second period. In the study period, the needs for direct nursing care increased by 7%, this increase is not related to the increase in activity, but to the level of dependency of the patients with chronic diseases. This increase occurred in both medical and surgical units. Copyright © 2017 SECA. Publicado por Elsevier España, S.L.U. All rights reserved.

  10. Using Freire's Participatory Educational Method to Understand the Experience of Living With Chronic Illness in the Current Age of Globalization.

    Science.gov (United States)

    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

  11. Thinking positively about chronic illness: An exploration of optimism, illness perceptions and well-being in patients with Parkinson's disease.

    Science.gov (United States)

    Hurt, Catherine S; Burn, David J; Hindle, John; Samuel, Mike; Wilson, Ken; Brown, Richard G

    2014-05-01

    Holding positive beliefs about illness and having an optimistic outlook have been associated with increased well-being across a range of health conditions. However, research has indicated that being very optimistic may not actually be beneficial, and holding a realistic attitude is more adaptive in some forms of chronic illness, for example, Parkinson's disease (PD). This study aimed to explore the nature of relationships between illness perceptions, optimism and well-being: specifically, whether a linear or non-linear relationship best described the data. Additionally, the proposed moderating effect of optimism on the relationship between illness perceptions and well-being was tested. A total of 109 participants with idiopathic PD completed questionnaire measures of illness perception, optimism, mood and health-related quality of life (HRQoL). Multiple regression analyses were used to explore relationships between illness perceptions, optimism, mood and HRQoL. The potential curvilinear effects of illness perceptions and optimism were modelled using squared variables and linear and quadratic curve estimation. Holding positive illness perceptions predicted better well-being. Some evidence for a non-linear relationship between optimism and mood was found. Optimism had a significant moderating effect on the relationship between specific illness perceptions and outcome. Optimism appears to provide protection against some negative perceptions of illness and was associated with better mood and HRQoL. The findings indicate that specific illness perceptions may be beneficial targets for therapy. Therapeutic interventions should focus on enhancing positive perceptions of PD but potentially more importantly general optimistic attitude to maximize well-being. What is already known on this subject? Positive illness perceptions and high optimism are associated with better well-being in a range of conditions, both chronic and acute. Preliminary studies suggest that in chronic

  12. Pre-travel advice seeking from GPs by travellers with chronic illness seen at a travel clinic.

    Science.gov (United States)

    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.

  13. Psychological interventions for parents of children and adolescents with chronic illness

    Science.gov (United States)

    Eccleston, Christopher; Palermo, Tonya M; Fisher, Emma; Law, Emily

    2012-01-01

    Background Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. Objectives To evaluate the effectiveness of psychological therapies that include coping strategies for parents of children/adolescents with chronic illnesses (painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury, inflammatory bowel diseases, skin diseases or gynaecological disorders). The therapy will aim to improve parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and family functioning. Search methods We searched CENTRAL, MEDLINE, EMBASE and PsyclNFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. The initial search was from inception of these databases to June 2011 and we conducted a follow-up search from June 2011 to March 2012. We identified additional studies from the reference list of retrieved papers and from discussion with investigators. Selection criteria Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents (under 19 years of age) with a chronic illness compared to active control, wait list control or treatment as usual. We excluded studies if the parent component was a coaching intervention, the aim of the intervention was health prevention/promotion, the comparator was a pharmacological treatment, the child/adolescent had an illness not listed above or the study included children with more than one type of chronic illness. Further to this, we excluded studies when the sample size of either comparator

  14. Psychological interventions for parents of children and adolescents with chronic illness.

    Science.gov (United States)

    Eccleston, Christopher; Palermo, Tonya M; Fisher, Emma; Law, Emily

    2012-08-15

    Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. To evaluate the effectiveness of psychological therapies that include coping strategies for parents of children/adolescents with chronic illnesses (painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury, inflammatory bowel diseases, skin diseases or gynaecological disorders). The therapy will aim to improve parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and family functioning. We searched CENTRAL, MEDLINE, EMBASE and PsycINFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. The initial search was from inception of these databases to June 2011 and we conducted a follow-up search from June 2011 to March 2012. We identified additional studies from the reference list of retrieved papers and from discussion with investigators. Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents (under 19 years of age) with a chronic illness compared to active control, wait list control or treatment as usual. We excluded studies if the parent component was a coaching intervention, the aim of the intervention was health prevention/promotion, the comparator was a pharmacological treatment, the child/adolescent had an illness not listed above or the study included children with more than one type of chronic illness. Further to this, we excluded studies when the sample size of either comparator group was fewer than 10 at post-treatment. We included 35

  15. 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).

    Science.gov (United States)

    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 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.

  16. Perceptions of Chronic Illness Care Among Veterans With Multiple Chronic Conditions.

    Science.gov (United States)

    Balbale, Salva N; Etingen, Bella; Malhiot, Alex; Miskevics, Scott; LaVela, Sherri L

    2016-05-01

    Given the burden of multiple chronic conditions (MCCs) in the Veterans Affairs (VA) Health Care System, understanding perspectives of Veterans with MCC is essential to evaluate chronic care and ensure that care and quality improvement efforts align with patient needs. The purpose of this study was to use the Patient Assessment of Chronic Illness Care (PACIC) instrument to examine perceptions of chronic care among Veterans with MCC. We conducted a nation-wide, cross-sectional mailed survey. Study inclusion criteria were Veteran patients with MCC who receive care from eight VA facilities. The survey included questions on patient demographics, recent hospital or doctor visits, and the PACIC instrument. Chronic condition and health care utilization data were extracted from VA administrative databases. The sample (n = 3,519) was mostly male; average age was 68.1 years. Mean PACIC summary score was 3.05 (standard deviation [SD] = 1.12). Respondents achieved higher scores (favorable perceptions) in the Delivery System Design and Patient Activation subscales, and lowest scores (unfavorable perceptions) in the Follow-up/Coordination subscale. Characteristics associated with higher scores included non-white race, recent VA doctor visit, and high school or less education. Perceptions of chronic care were high; however, quality improvements are needed to enhance care continuity and coordination. Reprint & Copyright © 2016 Association of Military Surgeons of the U.S.

  17. [Chronic illness from the perspective of patients and health professionals: a qualitative study in Mexico].

    Science.gov (United States)

    Mercado-Martínez, Francisco J; Hernández-Ibarra, Eduardo

    2007-09-01

    Chronic diseases are leading causes of morbidity, mortality, and increasing expenditures in numerous countries. However, little is known about how chronic diseases are perceived and managed by social actors. This article aims to compare the perspectives of health professionals and patients towards chronic diseases, besides analyzing the relationship between these two groups. A qualitative, multi-center study was conducted in three Mexican cities: Guadalajara, San Luis Potosí, and Mexico City. Participants included chronically ill individuals, physicians, and other health professionals from primary and secondary health care centers. Data collection used focus groups and interviews. The data were analyzed using discourse analysis. Participants' perceptions varied, from the medicalized view of physicians to that of patients focused on illness and the lifeworld. The participants agreed that there are unequal relationships between health professionals, families, and the chronically ill, but that relationships are more equal among the chronically ill themselves. The article includes by discussing various implications of the findings.

  18. Chronic Venous Disease under pressure

    NARCIS (Netherlands)

    S.W.I. Reeder (Suzan)

    2013-01-01

    textabstractIn chapter 1 we provide a general introduction of this thesis. Chronic venous disease (CVD) is a common medical condition that affects 2-64% of the worldwide population and leads to leg ulcers in 1% of the Western population. Venous leg ulceration (VLU) has an unfavorable prognosis with

  19. Acute and long-term survival in chronically critically ill surgical patients: a retrospective observational study.

    Science.gov (United States)

    Hartl, Wolfgang H; Wolf, Hilde; Schneider, Christian P; Küchenhoff, Helmut; Jauch, Karl-Walter

    2007-01-01

    Various cohort studies have shown that acute (short-term) mortality rates in unselected critically ill patients may have improved during the past 15 years. Whether these benefits also affect acute and long-term prognosis in chronically critically ill patients is unclear, as are determinants relevant to prognosis. We conducted a retrospective analysis of data collected from March 1993 to February 2005. A cohort of 390 consecutive surgical patients requiring intensive care therapy for more than 28 days was analyzed. The intensive care unit (ICU) survival rate was 53.6%. Survival rates at one, three and five years were 61.8%, 44.7% and 37.0% among ICU survivors. After adjustment for relevant covariates, acute and long-term survival rates did not differ significantly between 1993 to 1999 and 1999 to 2005 intervals. Acute prognosis was determined by disease severity during ICU stay and by primary diagnosis. However, only the latter was independently associated with long-term prognosis. Advanced age was an independent prognostic determinant of poor short-term and long-term survival. Acute and long-term prognosis in chronically critically ill surgical patients has remained unchanged throughout the past 12 years. After successful surgical intervention and intensive care, long-term outcome is reasonably good and is mainly determined by age and underlying disease.

  20. The importance of productive patient–professional interaction for the well-being of chronically ill patients

    NARCIS (Netherlands)

    J.M. Cramm (Jane); A.P. Nieboer (Anna)

    2014-01-01

    markdownabstract__Abstract__ Objective To investigate patient–professional interactions and identify the association between quality of care, productivity of patient–professional interaction, and chronically ill patients’ well-being. Methods Questionnaires were distributed to chronically ill

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

    Science.gov (United States)

    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.

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

    Science.gov (United States)

    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.

  3. Loneliness and Quality of Life in Chronically Ill Rural Older Adults

    Science.gov (United States)

    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

  4. Chronic illness self-management: a mechanism behind the relationship between neighbourhood social capital and health?

    Science.gov (United States)

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

    2017-08-01

    Neighbourhood social capital might provide resources that can benefit chronic illness self-management. Improved self-management is a possible mechanism behind the relationship between neighbourhood social capital and health of people with chronic illness. To test this mechanism, we collected data on self-management and self-rated health among a sample of 2091 people with chronic illness in 2013. Data on neighbourhood social capital were collected among 69 336 people in 3425 neighbourhoods between May 2011 and September 2012. A social capital measure was estimated with ecometric measurements. We conducted mediation analyses to examine whether the relationship between neighbourhood social capital and self-rated health was mediated through chronic illness self-management. We found that neighbourhood social capital is related to chronic illness self-management only for people with chronic illness and mild physical disabilities and that, for this group, self-management mediates the relationship between neighbourhood social capital and health. Improved self-management is a mechanism behind the relationship between neighbourhood social capital and health for people with chronic illness and mild physical disabilities. It is possible that the self-management support needs of people with chronic illness with moderate or severe physical disabilities cannot be met by the resources provided in neighbourhoods, but more tailored support is necessary. More research is needed to discover mechanisms behind the relationship between neighbourhood social capital and health and elucidate which resources in neighbourhoods can benefit specific groups of people with chronic illness. © The Author 2016. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved.

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

    Science.gov (United States)

    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.

  6. A Middle-Range Theory of Self-Care of Chronic Illness

    OpenAIRE

    Riegel, Barbara; Jaarsma, Tiny; Strömberg, Anna

    2012-01-01

    Nearly 50% of adults have one or more chronic illnesses. Self-care is considered essential in the management of chronic illness, but the elements of self-care in this context have not been specified in a middle-range theory. This article describes a middle-range theory of self-care that addresses the process of maintaining health with health promoting practices within the context of the management required of a chronic illness. The key concepts include self-care maintenance, self-care monitor...

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

    Science.gov (United States)

    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.

  8. Building a measure of fatigue: the functional assessment of Chronic Illness Therapy Fatigue Scale.

    Science.gov (United States)

    Smith, Eleanor; Lai, Jin-Shei; Cella, David

    2010-05-01

    The shared goal of all clinical disciplines is to optimize the well-being of people who become patients and find themselves diminished by illness and recovery. This goal relies on sound tools to evaluate both real and perceived deficits in a way that can be used for a particular patient over time and also across medical disciplines and patient populations. Fatigue is a critical and notoriously subjective aspect of many illnesses. Although the soundness of research is often correlated with the objectivity of data, certain clinical measures must, by definition, be patient centered, with all the complexities and challenges of patient-reported evaluations. Measurement of fatigue has been an important and evolving component of symptom management in the field of oncology. The Functional Assessment of Chronic Illness Therapy Fatigue Scale is a self-administered fatigue-assessment tool that has found wide application across diverse medical fields and that has demonstrated validity and utility across a broad range of populations. The Functional Assessment of Chronic Illness Therapy Fatigue Scale has become one in a repository of tools in the item banks that are accumulating under the auspices of The Patient-Reported Outcomes Measurement Information System, a National Institutes of Health initiative to deploy the most clinically relevant and technologically agile tools that we have to advance research in medicine and patient care. As much as with any other discipline, physical medicine and rehabilitation stands to gain from the collective knowledge and creative horizons in the assessment and treatment of fatigue. Copyright (c) 2010 American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.

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

    Science.gov (United States)

    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.

  10. Selective responsiveness of chronically ill children to assessments of depression.

    Science.gov (United States)

    Worchel, F F; Rae, W A; Olson, T K; Crowley, S L

    1992-12-01

    Many investigators have noted that depression is a common symptom among pediatric cancer patients. However, prevalence rates vary widely across studies. This variation in prevalence rates may be due, in part, to selective reporting of patients based on measures used and environmental cues. In this study, we evaluated 50 chronically ill pediatric patients (19 cancer and 31 diabetic patients) for their use of selective reporting of depression. Factors in the 2 x 2 design were Intervention (disclosure videotape and cartoon videotape) and Examiner (familiar examiner and unfamiliar examiner). In the Intervention manipulation, subjects were shown either a videotape prompting the child that self-disclosure was appropriate or a tape of a cartoon (control condition). In the Examiner manipulation, subjects were administered the experimental measures by either a familiar (parent) or unfamiliar (research assistant) examiner. Dependent variables were the Children's Depression Inventory (CDI; Kovacs, 1981), the Depression scale of the Roberts Apperception Test for Children (RATC; McArthur & Roberts, 1982), and a depression measure taken from the Child Behavior Checklist (CBCL; Achenbach & Edelbrock, 1983). As hypothesized, the Examiner x Intervention interaction revealed that children who did not view the disclosure videotape and who were tested by an unfamiliar examiner gave significantly lower self-reports of depression on the CDI than children in the other conditions. However, parent and child projective reports of depression did not vary as a function of experimental condition. The results are interpreted as selective responding on the part of pediatric patients. Limitations of assessing internal psychological states in children are discussed.

  11. Blood Biomarkers of Chronic Inflammation in Gulf War Illness.

    Directory of Open Access Journals (Sweden)

    Gerhard J Johnson

    Full Text Available More than twenty years following the end of the 1990-1991 Gulf War it is estimated that approximately 300,000 veterans of this conflict suffer from an unexplained chronic, multi-system disorder known as Gulf War Illness (GWI. The etiology of GWI may be exposure to chemical toxins, but it remains only partially defined, and its case definition is based only on symptoms. Objective criteria for the diagnosis of GWI are urgently needed for diagnosis and therapeutic research.This study was designed to determine if blood biomarkers could provide objective criteria to assist diagnosis of GWI.A surveillance study of 85 Gulf War Veteran volunteers identified from the Department of Veterans Affairs Minnesota Gulf War registry was performed. All subjects were deployed to the Gulf War. Fifty seven subjects had GWI defined by CDC criteria, and 28 did not have symptomatic criteria for a diagnosis of GWI. Statistical analyses were performed on peripheral blood counts and assays of 61 plasma proteins using the Mann-Whitney rank sum test to compare biomarker distributions and stepwise logistic regression to formulate a diagnostic model.Lymphocyte, monocyte, neutrophil, and platelet counts were higher in GWI subjects. Six serum proteins associated with inflammation were significantly different in GWI subjects. A diagnostic model of three biomarkers-lymphocytes, monocytes, and C reactive protein-had a predicted probability of 90% (CI 76-90% for diagnosing GWI when the probability of having GWI was above 70%.The results of the current study indicate that inflammation is a component of the pathobiology of GWI. Analysis of the data resulted in a model utilizing three readily measurable biomarkers that appears to significantly augment the symptom-based case definition of GWI. These new observations are highly relevant to the diagnosis of GWI, and to therapeutic trials.

  12. Longitudinal Model Predicting Self-Concept in Pediatric Chronic Illness.

    Science.gov (United States)

    Emerson, Natacha D; Morrell, Holly E R; Neece, Cameron; Tapanes, Daniel; Distelberg, Brian

    2018-04-16

    Although self-concept has been identified as salient to the psychosocial adjustment of adolescents dealing with a chronic illness (CI), little research has focused on its predictors it. Given that depression and parent-child attachment have been linked to self-concept in the population at large, the goal of this study was to evaluate these relationships longitudinally in a sample of adolescents with CI. Using participant data from the Mastering Each New Direction (MEND) program, a 3-month psychosocial, family based intensive outpatient program for adolescents with CI, we employed multilevel modeling to test longitudinal changes in self-concept, as predicted by depressive symptoms and parent-child attachment, in a sample of 50 youths (M age  = 14.56, SD age  = 1.82) participating in MEND. Both "time spent in the program" and decreases in depressive symptoms were associated with increases in self-concept over time. Higher baseline levels of avoidant attachment to both mother and father were also associated with greater initial levels of self-concept. Targeting depressive symptoms and supporting adaptive changes in attachment may be key to promoting a healthy self-concept in pediatric CI populations. The association between avoidant attachment and higher baseline self-concept scores may reflect differences in participants' autonomy, self-confidence, or depression. Limitations of the study include variability in the amount of time spent in the program, attrition in final time point measures, and the inability to fully examine and model all potential covariates due to a small sample size (e.g. power). © 2018 Family Process Institute.

  13. The Functional Assessment of Chronic Illness Therapy (FACIT Measurement System: properties, applications, and interpretation

    Directory of Open Access Journals (Sweden)

    Yost Kathleen

    2003-12-01

    Full Text Available Abstract The Functional Assessment of Chronic Illness Therapy (FACIT Measurement System is a collection of health-related quality of life (HRQOL questionnaires targeted to the management of chronic illness. The measurement system, under development since 1987, began with the creation of a generic CORE questionnaire called the Functional Assessment of Cancer Therapy-General (FACT-G. The FACT-G (now in Version 4 is a 27-item compilation of general questions divided into four primary QOL domains: Physical Well-Being, Social/Family Well-Being, Emotional Well-Being, and Functional Well-Being. It is appropriate for use with patients with any form of cancer, and extensions of it have been used and validated in other chronic illness condition (e.g., HIV/AIDS; multiple sclerosis; Parkinson's disease; rheumatoid arthritis, and in the general population. The FACIT Measurement System now includes over 400 questions, some of which have been translated into more than 45 languages. Assessment of any one patient is tailored so that the most-relevant questions are asked and administration time for any one assessment is usually less than 15 minutes. This is accomplished both by the use of specific subscales for relevant domains of HRQOL, or computerized adaptive testing (CAT of selected symptoms and functional areas. FACIT questionnaires can be administered by self-report (paper or computer or interview (face-to-face or telephone. Available scoring, normative data and information on meaningful change now allow one to interpret results in the context of a growing literature base.

  14. Use of creative arts as a complementary therapy by rural women coping with chronic illness.

    Science.gov (United States)

    Kelly, Catherine G; Cudney, Shirley; Weinert, Clarann

    2012-03-01

    To investigate the spontaneous use of creative arts as a complementary therapy by rural women in the Western United States who are coping with chronic illness. Women to Women Project was an 11-week research-based computer intervention that provided health education and support to rural women with chronic illnesses in an effort to help them better adapt to living with chronic conditions. Through the use of text queries, messages posted to an unprompted, online support and health education forum were examined for references to the spontaneous use of creative arts and their influence as a complementary therapy for dealing with chronic illness. In three identified themes-coping with pain, relaxation/quality of life, and giving back to others-participants strongly suggested that creative activity was an important strategy for coping with chronic illness and that it contributed to reduced pain and increased overall well-being, regardless of whether it was the expression of a previously learned skill or a practice established after the onset of chronic illness. The use of creative arts and developing art-making interventions could significantly benefit rural individuals coping with chronic illness. Discovering methods of implementing creative arts interventions in rural populations warrants further study.

  15. Integrated and consumer-directed care: a necessary paradigm shift for rural chronic ill health.

    Science.gov (United States)

    Ranson, Nicole E; Terry, Daniel R; Glenister, Kristen; Adam, Bill R; Wright, Julian

    2016-01-01

    Chronic ill health has recently emerged as the most important health issue on a global scale. Rural communities are disproportionally affected by chronic ill health. Many health systems are centred on the management of acute conditions and are often poorly equipped to deal with chronic ill health. Cardiovascular disease (CVD) is one of the most prominent chronic ill health conditions and the principal cause of mortality worldwide. In this paper, CVD is used as an example to demonstrate the disparity between rural and urban experience of chronic ill health, access to medical care and clinical outcomes. Advances have been made to address chronic ill health through improving self-management strategies, health literacy and access to medical services. However, given the higher incidence of chronic health conditions and poorer clinical outcomes in rural communities, it is imperative that integrated health care emphasises greater collaboration between services. It is also vital that rural GPs are better supported to work with their patients, and that they use consumer-directed approaches to empower patients to direct and coordinate their own care.

  16. Social networks, the 'work' and work force of chronic illness self-management: a survey analysis of personal communities.

    Science.gov (United States)

    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.

  17. Do illness perceptions of people with chronic low back pain differ from people without chronic low back pain?

    NARCIS (Netherlands)

    van Wilgen, C. Paul; van Ittersum, Miriam W.; Kaptein, Ad A.

    Objectives To determine why some people develop chronic low back pain, and whether illness perceptions are an important risk factor in the transition from acute to chronic low back pain. Design Cross-sectional study. Participants Four hundred and two members of the general Dutch population, with and

  18. Say 'trouble's gone': chronic illness and employability in job training programmes.

    Science.gov (United States)

    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.

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

    Science.gov (United States)

    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.

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

    OpenAIRE

    Cocosila, Mihail; Archer, Norm

    2014-01-01

    Objective 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. Materials and methods 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. An...

  1. Do everyday problems of people with chronic illness interfere with their self-management?

    NARCIS (Netherlands)

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

    2015-01-01

    Background: 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

  2. Cognitive Treatment of Illness Perceptions in Patients With Chronic Low Back Pain : A Randomized Controlled Trial

    NARCIS (Netherlands)

    Siemonsma, Petra C.; Stuive, Ilse; Roorda, Leo D.; Vollebregt, Joke A.; Walker, Marion F.; Lankhorst, Gustaaf J.; Lettinga, Ant T.

    Background. Illness perceptions have been shown to predict patient activities. Therefore, studies of the effectiveness of a targeted illness-perception intervention on chronic nonspecific low back pain (CLBP) are needed. Objective. The purpose of this study was to compare the effectiveness of

  3. Cognitive Treatment of Illness Perceptions in Patients With Chronic Low Back Pain: A Randomized Controlled Trial

    NARCIS (Netherlands)

    Siemonsma, P.C.; Stuive, I.; Roorda, L.D.; Vollebregt, J.A.; Walker, M.F.; Lankhorst, G.J.; Lettinga, A.T.

    2013-01-01

    Background. Illness perceptions have been shown to predict patient activities. Therefore, studies of the effectiveness of a targeted illness-perception intervention on chronic nonspecific low back pain (CLBP) are needed. Objective. The purpose of this study was to compare the effectiveness of

  4. Health risk behavior among chronically ill adolescents : a systematic review of assessment tools

    NARCIS (Netherlands)

    Ssewanyana, Derrick; Nyongesa, Moses Kachama; Van Baar, Anneloes; Newton, Charles R; Abubakar, Amina

    2017-01-01

    Background Adolescents living with chronic illnesses engage in health risk behaviors (HRB) which pose challenges for optimizing care and management of their ill health. Frequent monitoring of HRB is recommended, however little is known about which are the most useful tools to detect HRB among

  5. Experiences of case management with chronic illnesses: a qualitative systematic review.

    Science.gov (United States)

    Joo, J Y; Liu, M F

    2018-03-01

    This qualitative systematic review aimed to identify and synthesize recent qualitative studies to improve understanding of the experiences and perceptions of case management interventions that individuals with chronic illnesses and their caregivers have. Case management has been shown to be effective at improving quality of care and lowering costs for individuals with chronic illnesses. However, no qualitative review has been synthesized with recent qualitative studies about case management experiences by individual with chronic illnesses. This qualitative systematic review uses a thematic synthesis method to review 10 qualitative studies published within the last 10 years, from 2007 to 2016, thereby identifying and discussing the understandings that individuals with chronic illnesses and their caregivers have about case management. From this synthesis, three themes were identified as facilitators of case management (access to healthcare resources, health status supports and emotional aid) and two themes were identified as barriers to it (low information about case management and time constraints). This is the first qualitative systematic review of the perceptions and experiences that individuals with chronic illnesses and their caregivers have about case management. The facilitators of case management can be employed to inform patients about the benefits of case management and to improve population health. The findings about barriers to case management can be used to reform case management for populations with chronic illnesses. These factors should be considered by nursing researchers and healthcare policymakers when implementing case management. © 2018 International Council of Nurses.

  6. The Role of Adult Learning in Coping with Chronic Illness

    Science.gov (United States)

    Baumgartner, Lisa M.

    2011-01-01

    Nearly half the U.S. population copes with a chronic disease or condition. A chronic disease is "one lasting three months or more that generally cannot be prevented by vaccines or cured by medication." Heart disease, cancer, diabetes, and obesity are the most common chronic diseases in developed countries. By 2030, it is estimated that…

  7. Differences in illness perception between children with cancer and other chronic diseases and their parents.

    Science.gov (United States)

    Szentes, Annamária; Kökönyei, Gyöngyi; Békési, Andrea; Bokrétás, Ildikó; Török, Szabolcs

    2017-10-01

    The purpose of this study was to explore the differences in illness perception between children with cancer and other chronic diseases. A secondary aim was to examine the similarities and differences between the illness perception of these children and their parents. The Revised Illness Perception Questionnaire (IPQ-R) was used to measure the children's and parents' illness perceptions. In this study, 184 children (ages 8-18 years) and their caregivers completed the questionnaires. This study shows that children with cancer feel that they have greater control over their treatment compared to the other two groups. The children's parents have more pessimistic views of the illness than their children. Examinations of illness perceptions among paediatric cancer patients and their families are essential in designing psychosocial interventions for these families. The clinical value of our results can help better understand the cancer-specific features of illness perceptions.

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

    Science.gov (United States)

    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.

  9. Experiences of depression and illness behavior in patients with intractable chronic pain.

    Science.gov (United States)

    Stein, N; Fruchter, H J; Trief, P

    1983-01-01

    Studied the relationships between depth of depression, anaclitic and introjective depressive experiences, and dimensions of illness behavior in 37 chronic pain patients. Depth of depression and degree of introjective depressive experiences showed similar positive covariation with a broad range of illness behavior: Namely, hypochondriasis, disease conviction, affective inhibition, affective disturbance, and irritability. The findings suggest that depression characterized by feelings of guilt, worthlessness, and self-doubt, rather than themes of abandonment, is associated differentially with disturbances in the illness behavior of chronic pain patients.

  10. Families of Children with Chronic Illness and the Relational Family Model

    Directory of Open Access Journals (Sweden)

    Tanja Pate

    2016-09-01

    Full Text Available Families of children with chronic illness experience persistent stress. Facing the diagnosis and learning how to cope with it is a stressful experience not only for the child but also for the parents and for the whole family. The illness, with its unpredictability and treatment, disturbs their daily routine and threatens the whole family system. Parental involvement in the child’s disease management and their emotional support are crucial for effective coping and adaptation to the child’s chronic illness. The aim of this article is to present the importance of the parental role in these families through theoretical findings of the relational family model.

  11. A Self-Study Of My Life With A Chronic Illness

    Directory of Open Access Journals (Sweden)

    Taunya WIDEMAN-JOHNSTON

    2015-07-01

    Full Text Available The following paper is a self-study identifying and examining obstacles I have encountered from living with a chronic illness (CI. In particular, I intend to connect my life experiences as both an individual and educator in academia. The focus of this paper is to reveal my life experiences with a CI, the challenges I encounter, and how I learn I can foster change in the community. A serious failure in my health from the rare chronic gastrointestinal illness I have been diagnosed with initiated a journey of questioning both my knowledge and understandings regarding my life. I was forced to reconnect with my body and yet again, accept the illness inside me. The findings from my recovery included four main themes that illuminate transformative learning with a chronic illness. The themes are betrayed by my body, trying to live, societal differences, and seeking wellness.

  12. Theory of planned behavior and adherence in chronic illness: a meta-analysis

    NARCIS (Netherlands)

    Rich, A.; Brandes, K.; Mullan, B.; Hagger, M.S.

    2015-01-01

    Social-cognitive models such as the theory of planned behavior have demonstrated efficacy in predicting behavior, but few studies have examined the theory as a predictor of treatment adherence in chronic illness. We tested the efficacy of the theory for predicting adherence to treatment in chronic

  13. 77 FR 64597 - Proposed Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

    Science.gov (United States)

    2012-10-22

    ... of Chronic Gastrointestinal Illness in Persian Gulf Veterans (Irritable Bowel Syndrome--Diarrhea... diarrhea-predominant irritable bowel syndrome. The data collected from the survey will assist VA in... bacteria in the intestines and whether eradication of these bacteria reduces symptoms of chronic diarrhea...

  14. Association between nutritional status and subjective health status in chronically ill children attending special schools.

    Science.gov (United States)

    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 (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.

  15. [Illness perception questionnaire (IPQ-r): an useful paradigm in chronic disease].

    Science.gov (United States)

    Trovato, Guglielmo M; Catalano, Daniela; Martines, Giuseppe Fabio; Spadaro, Davide; Garufi, Giuliana; Di Corrado, Donatella; Di Nuovo, Santo

    2006-03-01

    The Illness Perception Questionnaire (IPQr) is a validated psycho-social tool. Chronic illness out-patients, 48 women and 42 men, 61.36 +/- 14.55 yrs, showed a social stigma related to illness condition, even common and scarcely invalidating, more evident with a lower degree of instruction, associated to limited cognitive representation and to inappropriate control. Duration of illness directly influences perception of "chronicity"; age, instead, positively influences compliance and trust of patients. The study of illness perception, aimed to foresee, interprets and modifies behavioural patterns in health and disease, according to implicit and/or hidden personal and/or social theories, it can improve quality of clinical medical approach.

  16. A meta-ethnographic synthesis on phenomenographic studies of patients’ experiences of chronic illness

    Directory of Open Access Journals (Sweden)

    Marta Röing

    2015-02-01

    Full Text Available 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.

  17. Psychometric properties of a caregiver illness perception measure for caries in children under 6 years old.

    Science.gov (United States)

    Nelson, Suchitra; Slusar, Mary Beth; Albert, Jeffrey M; Liu, Yiying; Riedy, Christine A

    2016-02-01

    Based on the Common-Sense Model of Self-Regulation (CSM), the Revised Illness Perception Questionnaire (IPQ-R) was developed to measure patients' perceptions of their chronic medical illness. Such a measure does not exist for dental conditions. This study describes psychometric properties of the IPQ-R for Dental (IPQ-RD) for parent/caregivers of children under 6 years of age. Parent/caregivers (n=160) of children aged 0.74). The IPQ-RD is a valid and reliable measure to assess parent/caregivers' representation of young children's cavities with potential to be a valuable risk assessment tool for oral health behavioral research. Copyright © 2016 Elsevier Inc. All rights reserved.

  18. Time spent on health related activities associated with chronic illness: a scoping literature review

    Directory of Open Access Journals (Sweden)

    Jowsey Tanisha

    2012-12-01

    Full Text Available Abstract Background 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. Methods 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. Results 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. Conclusions 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

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

    Science.gov (United States)

    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.

  20. Time spent on health related activities associated with chronic illness: a scoping literature review.

    Science.gov (United States)

    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

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

    Science.gov (United States)

    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.

  2. Anemia of chronic disease: illness or adaptive mechanism.

    Science.gov (United States)

    Županić-Krmek; Sučić, Mirna; Bekić, Dinko

    2014-09-01

    The anemia of chronic disease (ACD) is the most prevalent anemia after iron deficiency anemia. It is associated with infectious, inflammatory and neoplastic disease. ACD is a medical condition caused by the release of cytokines which mediate inflammatory and immune response (tumor necrosis factor, interleukins 1 and 6, and interferon). Abnormal iron metabolism with iron trapping in reticuloendothelial cells is primarily the cause of this condition, making iron unavailable for erythropoiesis although iron tissue reserves are elevated. Disorder in erythropoietin secretion and shortening of red cell life span also play a role in the pathogenesis of ACD. The main therapy is treatment of the underlying disorder and red cell transfusions in severe anemia. In more severe (protracted) anemias that lead to impaired quality of life and have an impact on the mortality and survival rate, erythropoiesis stimulating agents are used. Recently, new possibilities are being evaluated in terms of therapy for ACD in defined conditions, such as chelating agents, as well as hepcidin antagonist and other erythropoiesis stimulating agents.

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

    Science.gov (United States)

    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.

  4. Mad, homeless, and unwanted. A history of the care of the chronic mentally ill in America.

    Science.gov (United States)

    Grob, G N

    1994-09-01

    The history of the care and treatment of the mentally ill in America for nearly four centuries offers a sobering example of a cyclical pattern that alternated between enthusiastic optimism and fatalistic pessimism. In the nineteenth century an affinity for institutional solutions led to the creation of the mental hospital, an institution designed to promote recovery and to enable the individual to return to the community. No institution ever lives up to the claims of its promoters, and the mental hospital was no exception. Plagued by a variety of problems, its reputation and image were slowly tarnished. When it became clear that hospitals were caring for large numbers of chronic patients, the stage was set for an attack on its legitimacy after World War II. Its detractors insisted that a community-based policy could succeed where an institutional policy had failed, and that it was possible to identify mental illnesses in the early stages, at which time treatment would prevent the advent of chronicity. Between the 1940s and 1960s, there was a sustained attack on institutional care that finally succeeded when Congress enacted and the president signed a piece of legislation that shifted the locus of care and treatment back to the community. The community mental health policy proved no less problematic than its institutional predecessor. Indeed, the emergence of a new group of young chronic mentally ill persons in the 1970s and 1980s created entirely new problems, for the individuals who constituted this group proved difficult to treat and to care for under any circumstances. Each of these stages was marked by unrealistic expectations and rhetorical claims that had little basis in fact. In their quest to build public support and legitimate their cherished policy, psychiatric activists invariably insisted that they possessed the means to prevent and to cure severe mental disorders. When such expectations proved unrealistic, they placed the blame either upon callous

  5. Cost of Illness of Chronic Hepatitis B Infection in Vietnam

    NARCIS (Netherlands)

    Tu, Hong Anh T.; Woerdenbag, Herman J.; Riewpaiboon, Arthorn; Kane, Sumit; Le, Diep M.; Postma, Maarten J.; Li, Shu Chuen

    2012-01-01

    To estimate the total financial burden of chronic hepatitis B virus (HBV) infection for Vietnam by quantifying the direct medical, the direct nonmedical, and indirect costs among patients with various stages of chronic HBV infection. Direct medical cost data were retrieved retrospectively from

  6. Differential outcomes of adolescents with chronically ill and healthy parents

    NARCIS (Netherlands)

    Sieh, D.S.; Visser-Meily, J.M.A.; Meijer, A.M.

    2013-01-01

    Approximately 10% of children grow up with a parent who has been diagnosed with a chronic medical condition (CMC) and seem to be at risk for adjustment difficulties. We examined differences in behavioral, psychosocial and academic outcomes between 161 adolescents from 101 families with a chronically

  7. The role of team climate in improving the quality of chronic care delivery: a longitudinal study among professionals working with chronically ill adolescents in transitional care programmes.

    Science.gov (United States)

    Cramm, Jane M; Strating, Mathilde M H; Nieboer, Anna P

    2014-05-22

    This study aimed to (1) evaluate the effectiveness of implementing transition programmes in improving the quality of chronic care delivery and (2) identify the predictive role of (changes in) team climate on the quality of chronic care delivery over time. This longitudinal study was undertaken with professionals working in hospitals and rehabilitation units that participated in the transition programme 'On Your Own Feet Ahead!' in the Netherlands. A total of 145/180 respondents (80.6%) filled in the questionnaire at the beginning of the programme (T1), and 101/173 respondents (58.4%) did so 1 year later at the end of the programme (T2). A total of 90 (52%) respondents filled in the questionnaire at both time points. Two-tailed, paired t tests were used to investigate improvements over time and multilevel analyses to investigate the predictive role of (changes in) team climate on the quality of chronic care delivery. Transition programme. Quality of chronic care delivery measured with the Assessment of Chronic Illness Care Short version (ACIC-S). The overall ACIC-S score at T1 was 5.90, indicating basic or intermediate support for chronic care delivery. The mean ACIC-S score at T2 significantly improved to 6.70, indicating advanced support for chronic care. After adjusting for the quality of chronic care delivery at T1 and significant respondents' characteristics, multilevel regression analyses showed that team climate at T1 (pteam climate (pteam climate to enhance the quality of chronic care delivery to chronically ill adolescents. 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.

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

    Science.gov (United States)

    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.

  9. Psychometric Testing of an Arabic Translation of the Revised-Illness Perception Questionnaire (IPQ-R) for Chronic Illness Patients.

    Science.gov (United States)

    Aberkane, Salah

    2017-08-01

    Researchers lack a properly validated instrument to measure perceptions of chronic disease in Arabic language contexts. This study aimed to adapt and validate the Revised-Illness Perception Questionnaire (IPQ-R) for Arabic speaking chronic illness patients. A cross-sectional design was conducted to examine the psychometric properties of the adapted English version of the IPQ-R for Arabic speaking chronic illness patients. The study instrument was an Arabic version of the IPQ-R prepared through a translation process. The reliability and validity of the instrument were assessed using exploratory and confirmatory factor analysis and Cronbach's alpha coefficient. Three hundred and sixteen participants (ages 16-79) from the Batna region in Algeria completed the IPQ-R. A total of 316 (100%) patients responded to this study. Regarding internal consistency, Cronbach's alpha a coefficient was consistently higher than 0.45. Several areas of fit were identified and substantial changes to the measurement model were made, such as the deletion of 22 items from the original 38-item IPQ-R and two items from the original 18 causal items this accounted for 64.63% of the total variance, and the respecification of indicators had to be applied to achieve acceptable model fit. The final model consists of two sections: The 16-item Arabic IPQ-R, which had a good fit; (CMIN/Df = 1.30, P < 0.001, CFI = 0.93, RMSEA = 0.08, SRMR = 0.03), and was similar to the Arabic 16 causal items (CMIN/DF = 1.11, P < 0.001, CFI = 0.95, RMSEA = 0.080, SRMR = 0.02). The factor structure concurred with prior finding despite differences to the type of sample and cultural considerations that might explain these findings. Replication of this study in Algerian patients with specific illness, such as silicosis, breast cancer and multiple sclerosis. Further psychometric testing on other large samples is recommended.

  10. Peer Attachment, Perceived Parenting Style, Self-concept, and School Adjustments in Adolescents with Chronic Illness.

    Science.gov (United States)

    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.

  11. Noninvasive ventilation during the weaning process in chronically critically ill patients

    Directory of Open Access Journals (Sweden)

    Jesus Sancho

    2016-10-01

    Full Text Available Chronically critically ill patients often undergo prolonged mechanical ventilation. The role of noninvasive ventilation (NIV during weaning of these patients remains unclear. The aim of this study was to determine the value of NIV and whether a parameter can predict the need for NIV in chronically critically ill patients during the weaning process. We conducted a prospective study that included chronically critically ill patients admitted to Spanish respiratory care units. The weaning method used consisted of progressive periods of spontaneous breathing trials. Patients were transferred to NIV when it proved impossible to increase the duration of spontaneous breathing trials beyond 18 h. 231 chronically critically ill patients were included in the study. 198 (85.71% patients achieved weaning success (mean weaning time 25.45±16.71 days, of whom 40 (21.4% needed NIV during the weaning process. The variable which predicted the need for NIV was arterial carbon dioxide tension at respiratory care unit admission (OR 1.08 (95% CI 1.01–1.15, p=0.013, with a cut-off point of 45.5 mmHg (sensitivity 0.76, specificity 0.67, positive predictive value 0.76, negative predictive value 0.97. NIV is a useful tool during weaning in chronically critically ill patients. Hypercapnia despite mechanical ventilation at respiratory care unit admission is the main predictor of the need for NIV during weaning.

  12. Race, unemployment rate, and chronic mental illness: a 15-year trend analysis.

    Science.gov (United States)

    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.

  13. Noninvasive ventilation during the weaning process in chronically critically ill patients

    Science.gov (United States)

    Servera, Emilio; Barrot, Emilia; Sanchez-Oro-Gómez, Raquel; Gómez de Terreros, F. Javier; Martín-Vicente, M. Jesús; Utrabo, Isabel; Núñez, M. Belen; Binimelis, Alicia; Sala, Ernest; Zamora, Enrique; Segrelles, Gonzalo; Ortega-Gonzalez, Angel; Masa, Fernando

    2016-01-01

    Chronically critically ill patients often undergo prolonged mechanical ventilation. The role of noninvasive ventilation (NIV) during weaning of these patients remains unclear. The aim of this study was to determine the value of NIV and whether a parameter can predict the need for NIV in chronically critically ill patients during the weaning process. We conducted a prospective study that included chronically critically ill patients admitted to Spanish respiratory care units. The weaning method used consisted of progressive periods of spontaneous breathing trials. Patients were transferred to NIV when it proved impossible to increase the duration of spontaneous breathing trials beyond 18 h. 231 chronically critically ill patients were included in the study. 198 (85.71%) patients achieved weaning success (mean weaning time 25.45±16.71 days), of whom 40 (21.4%) needed NIV during the weaning process. The variable which predicted the need for NIV was arterial carbon dioxide tension at respiratory care unit admission (OR 1.08 (95% CI 1.01–1.15), p=0.013), with a cut-off point of 45.5 mmHg (sensitivity 0.76, specificity 0.67, positive predictive value 0.76, negative predictive value 0.97). NIV is a useful tool during weaning in chronically critically ill patients. Hypercapnia despite mechanical ventilation at respiratory care unit admission is the main predictor of the need for NIV during weaning. PMID:28053973

  14. Living with a chronic illness - dealing with feelings

    Science.gov (United States)

    ... on the Internet, at a library, and from social networks, support groups, national organizations, and local hospitals. Ask ... 2016:chap 3. Wagner EH. Comprehensive chronic disease management. In: Goldman L, Schafer AI, eds. Goldman's Cecil ...

  15. Playful intervention with chronically-ill children: promoting coping

    Directory of Open Access Journals (Sweden)

    Flávia Moura de Moura

    Full Text Available Chronic diseases can adversely affect the development process of children. This qualitative, action-research study had the aim to analyze the effects of activities in the manual "Como Hóspede no Hospital" (As a patient in the hospital on the coping process of children with chronic diseases. Study participants included six children and adolescents aged seven to 13 years, who suffered from a chronic disease. Data were collected in the pediatric clinic of a public hospital in the Brazilian state of Paraíba, through participant observation and individual sessions with activities from the manual. Data interpretation followed the principles of thematic analysis. The activities from the manual encouraged participants' search for information about their disease and treatment, and increased their interest and participation in their health care process, thereby contributing to better coping. The study points to the need for comprehensive care for children with chronic diseases.

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

    Science.gov (United States)

    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

  17. Integration of Biosensors and Drug Delivery Technologies for Early Detection and Chronic Management of Illness

    Directory of Open Access Journals (Sweden)

    Viness Pillay

    2013-06-01

    Full Text Available Recent advances in biosensor design and sensing efficacy need to be amalgamated with research in responsive drug delivery systems for building superior health or illness regimes and ensuring good patient compliance. A variety of illnesses require continuous monitoring in order to have efficient illness intervention. Physicochemical changes in the body can signify the occurrence of an illness before it manifests. Even with the usage of sensors that allow diagnosis and prognosis of the illness, medical intervention still has its downfalls. Late detection of illness can reduce the efficacy of therapeutics. Furthermore, the conventional modes of treatment can cause side-effects such as tissue damage (chemotherapy and rhabdomyolysis and induce other forms of illness (hepatotoxicity. The use of drug delivery systems enables the lowering of side-effects with subsequent improvement in patient compliance. Chronic illnesses require continuous monitoring and medical intervention for efficient treatment to be achieved. Therefore, designing a responsive system that will reciprocate to the physicochemical changes may offer superior therapeutic activity. In this respect, integration of biosensors and drug delivery is a proficient approach and requires designing an implantable system that has a closed loop system. This offers regulation of the changes by means of releasing a therapeutic agent whenever illness biomarkers prevail. Proper selection of biomarkers is vital as this is key for diagnosis and a stimulation factor for responsive drug delivery. By detecting an illness before it manifests by means of biomarkers levels, therapeutic dosing would relate to the severity of such changes. In this review various biosensors and drug delivery systems are discussed in order to assess the challenges and future perspectives of integrating biosensors and drug delivery systems for detection and management of chronic illness.

  18. Integration of Biosensors and Drug Delivery Technologies for Early Detection and Chronic Management of Illness

    Science.gov (United States)

    Ngoepe, Mpho; Choonara, Yahya E.; Tyagi, Charu; Tomar, Lomas Kumar; du Toit, Lisa C.; Kumar, Pradeep; Ndesendo, Valence M. K.; Pillay, Viness

    2013-01-01

    Recent advances in biosensor design and sensing efficacy need to be amalgamated with research in responsive drug delivery systems for building superior health or illness regimes and ensuring good patient compliance. A variety of illnesses require continuous monitoring in order to have efficient illness intervention. Physicochemical changes in the body can signify the occurrence of an illness before it manifests. Even with the usage of sensors that allow diagnosis and prognosis of the illness, medical intervention still has its downfalls. Late detection of illness can reduce the efficacy of therapeutics. Furthermore, the conventional modes of treatment can cause side-effects such as tissue damage (chemotherapy and rhabdomyolysis) and induce other forms of illness (hepatotoxicity). The use of drug delivery systems enables the lowering of side-effects with subsequent improvement in patient compliance. Chronic illnesses require continuous monitoring and medical intervention for efficient treatment to be achieved. Therefore, designing a responsive system that will reciprocate to the physicochemical changes may offer superior therapeutic activity. In this respect, integration of biosensors and drug delivery is a proficient approach and requires designing an implantable system that has a closed loop system. This offers regulation of the changes by means of releasing a therapeutic agent whenever illness biomarkers prevail. Proper selection of biomarkers is vital as this is key for diagnosis and a stimulation factor for responsive drug delivery. By detecting an illness before it manifests by means of biomarkers levels, therapeutic dosing would relate to the severity of such changes. In this review various biosensors and drug delivery systems are discussed in order to assess the challenges and future perspectives of integrating biosensors and drug delivery systems for detection and management of chronic illness. PMID:23771157

  19. Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness

    DEFF Research Database (Denmark)

    Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo

    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...

  20. Does chronic illness cause adverse social and economic consequences among Swedes?

    DEFF Research Database (Denmark)

    Lindholm, C; Burström, B; Diderichsen, F

    2001-01-01

    question raised here is therefore to examine chronic illness (defined as limiting longstanding illness. LLSI) as a causal factor contributing adverse financial conditions, unemployment or labour market exclusion. METHODS: A longitudinal design was employed with data from a sample of 27,773 people......BACKGROUND: In an international comparison, the Swedish welfare system has been known for universal coverage and high benefit levels. Perhaps this is the reason why very few studies recently have dealt with the social and economic consequences of long-term illness in Sweden. AIMS: The research...... interviewed twice (Swedish Surveys of Living Conditions performed by Statistics Sweden), including subjects (n = 12,556) at interview I, without chronic illness or adverse socioeconomic conditions. RESULTS: The odds ratios for labour market exclusion, unemployment, and financial difficulties among people who...

  1. Perceived conflict in the couple and chronic illness management: Preliminary analyses from the Quebec Health Survey

    Directory of Open Access Journals (Sweden)

    Hudon Catherine

    2006-10-01

    Full Text Available Abstract Background 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. Methods 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. Results 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

  2. Collaborative Chronic Care Networks (C3Ns) to transform chronic illness care.

    Science.gov (United States)

    Margolis, Peter A; Peterson, Laura E; Seid, Michael

    2013-06-01

    Despite significant gains by pediatric collaborative improvement networks, the overall US system of chronic illness care does not work well. A new paradigm is needed: a Collaborative Chronic Care Network (C3N). A C3N is a network-based production system that harnesses the collective intelligence of patients, clinicians, and researchers and distributes the production of knowledge, information, and know-how over large groups of people, dramatically accelerating the discovery process. A C3N is a platform of "operating systems" on which interconnected processes and interventions are designed, tested, and implemented. The social operating system is facilitated by community building, engaging all stakeholders and their expertise, and providing multiple ways to participate. Standard progress measures and a robust information technology infrastructure enable the technical operating system to reduce unwanted variation and adopt advances more rapidly. A structured approach to innovation design provides a scientific operating system or "laboratory" for what works and how to make it work. Data support testing and research on multiple levels: comparative effectiveness research for populations, evaluating care delivery processes at the care center level, and N-of-1 trials and other methods to select the best treatment of individual patient circumstances. Methods to reduce transactional costs to participate include a Federated IRB Model in which centers rely on a protocol approved at 1 central institutional review board and a "commons framework" for organizational copyright and intellectual property concerns. A fully realized C3N represents a discontinuous leap to a self-developing learning health system capable of producing a qualitatively different approach to improving health.

  3. Illness beliefs and self-management in children and young people with chronic illness: a systematic review.

    Science.gov (United States)

    Law, Gary Urquhart; Tolgyesi, Charlotte Sarah; Howard, Ruth A

    2014-01-01

    To review the extent to which illness representations, based on Leventhal's Common Sense Model, relate to self-management in children and young people with chronic physical health conditions. A systematic literature review was carried out to identify relevant studies and each included paper was assessed for risk of bias. Fifteen papers met criteria for inclusion within the review. The majority of studies were cross-sectional, and small sample sizes for some studies made it difficult to generalise findings. The method of measuring both illness representations and outcomes varied. Timeline, identity, control and consequences beliefs were the most frequently assessed domains of illness representations included within the studies. While there is variability, there are indications that control beliefs, specifically treatment control beliefs, are more consistently and strongly associated with self-management than other representation domains. Control beliefs should be targeted for intervention in studies trying to improve adolescent self-management. In addition, the relationship between illness representations and self-management needs to be considered within both developmental and systemic contexts. It is likely that the variation in self-management will be more fully explained in future research that explores the combined effects of individual representations and the influence of wider contexts.

  4. Character Development Pilot Evaluation of Two Programs for Youth with Chronic Illness

    Directory of Open Access Journals (Sweden)

    Gary Maslow

    2016-05-01

    Full Text Available This article describes the pilot evaluation of two Positive Youth Development (PYD programs for youth with child onset chronic illness (COCI, reporting how the programs influenced participants’ character development. College students with COCI led high school students with COCI through activities pertaining to different aspects of growing up with a chronic illness. Participants completed the Positive Youth Development Inventory-Short Form (PYDI-S, which measures seven domains of youth perceptions of the contribution to their development from the program. Participants reported that both programs helped them the most with personal standards, which corresponds well to character development on the full version of the Positive Youth Development Inventory (PYDI. They also had high scores on prosocial behavior and future orientation, both important domains for character development. We discuss the idea that interventions promoting character development for youth with COCI are critical for promoting a positive narrative for chronically-ill youth, their parents, and society.

  5. [Development of Empowerment Program for Persons with Chronic Mental Illness and Evaluation of Impact].

    Science.gov (United States)

    Kim, Mijung; Lee, Kyunghee

    2015-12-01

    This study was done to develop an empowerment program for people with chronic mental illness and to analyze effects of the program on level of empowerment. The research was conducted using a nonequivalent control group pretest-posttest design. Participants were 37 people with chronic mental illness (experimental group: 18, control group: 19). The empowerment program was provided for 8 weeks (15 sessions). Data were collected between July 21 and October 17, 2014. Data were analyzed using Chi-square, Fisher's exact test, Sapiro-Wilk test, and Repeated measure ANOVA with SPSS/WIN 18.0. Quantitative results show that self-efficacy, interpersonal relationships, attitudes in the workplace, occupational performance capacity, and levels of empowered execute were significantly better in the experimental group compared to the control group. Study findings indicate that this empowerment program for persons with chronic mental illness is effective for improving self efficacy, interpersonal skills, attitudes in the workplace, occupational performance capacity, levels of empowered execute.

  6. A middle-range theory of self-care of chronic illness.

    Science.gov (United States)

    Riegel, Barbara; Jaarsma, Tiny; Strömberg, Anna

    2012-01-01

    Nearly 50% of adults have one or more chronic illnesses. Self-care is considered essential in the management of chronic illness, but the elements of self-care in this context have not been specified in a middle-range theory. This article describes a middle-range theory of self-care that addresses the process of maintaining health with health promoting practices within the context of the management required of a chronic illness. The key concepts include self-care maintenance, self-care monitoring, and self-care management. Assumptions and propositions of the theory are specified. Factors influencing self-care including experience, skill, motivation, culture, confidence, habits, function, cognition, support from others, and access to care are described.

  7. Alagille Syndrome: A Case Report Highlighting Dysmorphic Facies, Chronic Illness, and Depression

    Directory of Open Access Journals (Sweden)

    James J. Bresnahan

    2016-01-01

    Full Text Available 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.

  8. Quality of life, treatment adherence, and locus of control: multiple family groups for chronic medical illnesses.

    Science.gov (United States)

    López-Larrosa, Silvia

    2013-12-01

    The Multiple Family Groups (MFGs) approach for patients with a chronic medical illness and their families is a structured psychoeducational program that unfolds in six weekly 90-minute sessions. In the MFGs, patients and family members explore new ways to balance illness and nonillness priorities in family life (Steinglass, 1998; Steinglass, 2000 Cuadernos de Terapia Familiar, 44-45, 11; Steinglass, Ostroff, & Steinglass, 2011 Family Process, 50, 393). © FPI, Inc.

  9. The economic impact of the insured patients with severe chronic and acute illnesses: a qualitative approach

    Directory of Open Access Journals (Sweden)

    Budi Aji

    2014-10-01

    Full Text Available Background: Little research has focused on the economic hardship among the insured with severe illnesses and high treatment costs, in particular, the consequence of poorer insurance coverage for high-cost illnesses. Therefore, we presented the case for identifying the experiences of insured patients with severe chronic and acute illnesses. This study identified a qualitative understanding of the economic impact of severe chronic and acute illnesses and household strategies to deal with high treatment costs. Design: Interviews were conducted with 19 insured households of three different health insurance programs with a family member that had been hospitalized for severe chronic or acute illnesses in either Banyumas or Margono Sukarjo hospitals in Banyumas, Central Java, Indonesia. A thematic analysis was applied to guide the interpretation of the data. Results: Insured households with a family member that had been hospitalized for severe chronic and acute illnesses were greatly affected by the high treatment costs. Four major issues emerged from this qualitative study: insured patients are still burdened with high out-of-pocket payments, households adopt various strategies to cope with the high cost of treatments, households experience financial hardships, and positive and negative perceptions of the insured regarding their health insurance coverage for acute and chronic illnesses. Conclusions: Askes and Jamsostek patients faced financial burdens from high cost sharing for hospital amenities, non-covered drugs, and treatments and other indirect costs. Meanwhile, Jamkesmas beneficiaries faced no financial burden for related medical services but were rather burdened with indirect costs for the carers. Households relied on internal resources to cover hospital bills as the first strategy, which included the mobilization of savings, sale of assets, and borrowing of money. External support was tapped secondarily and included financial support from

  10. Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill.

    Science.gov (United States)

    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

  11. Post-millennial trends of socioeconomic inequalities in chronic illness among adults in Germany.

    Science.gov (United States)

    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.

  12. Systematic review of positive youth development programs for adolescents with chronic illness.

    Science.gov (United States)

    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.

  13. Chronic illness and family: impact of schizophrenia and Crohn's disease on the family quality of life.

    Science.gov (United States)

    Loga, Slobodan; Sošić, Bojan; Kulenović, Alma Džubur; Svraka, Emira; Bosankić, Nina; Kučukalić, Abdulah; Cemalović, Omer; Hadžić, Alma

    2012-12-01

    Quality of life assessments are increasingly present in health research. Chronic and progressive illness of a family member unavoidably affects quality of life of a family as a whole. The goals of this study were to gain insight into the family burden of chronic disorders, especially possible differences in family quality of life (FQOL) in families that have members suffering from either schizophrenia or Crohn's disease, and families in which none of the members have chronic somatic or mental illness, as well as to pilot an instrument for this purpose. The sample consisted of 53 families with a member suffering from schizophrenia, 50 families with a member suffering from Crohn's disease, and 45 families with no identifiable chronic illnesses. An informant from each family underwent a structured face to face interview, using a questionnaire specially adapted from Family Quality of Life Survey, an instrument widely used to assess FQOL in families with members with disabilities, and which addresses nine areas of family life. In the domain of health, both groups of families with chronic illnesses believe they have significantly different conditions when compared to members of the Control group. In the Crohn's disease group, families had a great deal more of challenges in accessing healthcare services; and see themselves at a disadvantage when compared to both other groups in the domain of finances. Control group offered lowest rating in the domain of support from others. Overall measures of FQOL show significant variation among the three groups, Crohn's disease group offering lowest ratings, followed by families of mental health service users. Overall, FQOL seems to be lower in families that have members diagnosed with Crohn's disease than in families with members suffering from schizophrenia. Illness-specific studies are required, as well as instruments with stronger psychometric properties and studies of determinants of FQOL. Qualitative approach should be emphasised

  14. Illness representations in patients with chronic kidney disease on maintenance hemodialysis.

    Science.gov (United States)

    Fowler, Christopher; Baas, Linda S

    2006-01-01

    A sample of patients with chronic kidney disease on maintenance hemodialysis participated in a study to explore the relationship between illness perception and quality of life. Illness perception was examined based on the Common-Sense Model of Illness as described by Leventhal. Forty-two participants completed the Revised Illness Perception Questionnaire (IPQ-R), the Index of Well-being (IWB) and a brief demographic form. All of the subscales of the IPQ-R and the IWB demonstrated adequate reliability (alpha levels > or = .70) except for the treatment control subscale (alpha = .46). More perceived consequences of kidney disease and higher scores on the emotional representation scale were negatively correlated with scores on the IWB. Future research is needed to assess the influence of factors such as coping strategies on illness representations and on well-being. Nephrology nurses are in an optimal position to identify the illness perceptions of patients on chronic hemodialysis and can introduce specific coping mechanisms to enhance overall well-being. As well nephrology nurses can function as part of the overall health care team to identify the resources available to minimize the perceived consequences of chronic kidney disease.

  15. Paradise regained: how elderly people who are chronically mentally ill reinvent a social self.

    Science.gov (United States)

    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.

  16. Collaborative decision-making and promoting treatment adherence in pediatric chronic illness

    Directory of Open Access Journals (Sweden)

    Dennis Drotar

    2010-03-01

    Full Text Available Dennis Drotar, Peggy Crawford, Margaret BonnerCincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USAAbstract: Collaborative or shared decision-making between health care providers and families can facilitate treatment adherence, health outcomes, and satisfaction with care in the management of pediatric chronic illness, but raises special challenges. Barriers such as authoritarian models of medical care as well as absence of time and opportunity for dialogue limit collaborative decision making and can disrupt treatment adherence. However, models of provider-family communication that emphasize communication and shared goal-setting inform an anticipatory guidance model of collaborative decision-making that can enhance treatment adherence. Salient challenges and strategies involved in implementing collaborative decision-making in pediatric chronic illness care are described. Research is needed to: 1 describe the communication and decision-making process in the management of pediatric chronic illness; and 2 evaluate the impact of interventions that enhance collaborative decision-making on provider-family communication, illness management, and treatment adherence.Keywords: collaborative decision-making, shared decision-making, treatment adherence, pediatric chronic illness

  17. Patient-Assessed Chronic Illness Care (PACIC scenario in an Indian homeopathic hospital

    Directory of Open Access Journals (Sweden)

    Munmun Koley

    2016-01-01

    Full Text Available Homeopathy research has focused on chronic conditions; however, the extent to which current homeopathic care is compliant with the Chronic Care Model (CCM has been sparsely shown. As the Bengali Patient-Assessed Chronic Illness Care (PACIC-20 was not available, the English questionnaire was translated and evaluated in a government homeopathic hospital in West Bengal, India. The translation was done in six steps, and approved by an expert committee. Face validity was tested by 15 people for comprehension. Test/retest reliability (reproducibility was tested on 30 patients with chronic conditions. Internal consistency was tested in 377 patients suffering from various chronic conditions. The questionnaire showed acceptable test/retest reliability [intraclass correlation coefficient (ICC 0.57–0.75; positive to strong positive correlations; p0.05; however, monthly household income had a significant influence (p<0.05 on the subscales except for “delivery system or practice design.” Overall, chronic illness care appeared to be quite promising and CCM-compliant. The psychometric properties of the Bengali PACIC-20 were satisfactory, rendering it a valid and reliable instrument for assessing chronic illness care among the patients attending a homeopathic hospital.

  18. Concept development of family resilience: a study of Korean families with a chronically ill child.

    Science.gov (United States)

    Lee, Insook; Lee, Eun-Ok; Kim, Hesook Suzie; Park, Young Sook; Song, Misoon; Park, Youn Hwan

    2004-07-01

    To clarify and delineate the concept of family resilience in the context of the chronic illness of a child. This study also investigated the concept of family resilience in relation to family functioning in order to compare and contrast family resilience and family functioning. Three phases of the hybrid model of concept development were applied: theoretical, fieldwork and final analytical. In the theoretical phase, a working definition of family resilience was developed by a literature review. The fieldwork phase comprised in-depth interviews with 11 parents with a chronically ill child, in the paediatric oncology unit of a university hospital in South Korea. The qualitative data obtained from the interviews were analysed to find attributes of family resilience. The final analytical phase compared and interpreted the findings from the theoretical and fieldwork phases in order to clarify and refine the concept of resilience. The definition of family resilience was of an enduring force that leads a family to change its functioning dynamics in order to solve problems encountered. Twenty-one conceptual attributes of family resilience emerging from this study were differentiated into four dimensions: (i) intrinsic family characteristics, (ii) family member orientation related to family characteristics, (iii) responsiveness to stress and (iv) external orientation. Family resilience is an enduring force that leads a family to change its dynamics of functioning in order to solve problems associated with stresses encountered. This conceptualization led to the development of a model of family coping that incorporates both family resilience and family functioning, as the property and as the process of change, respectively. In order to build a family that functions better under stress, it is necessary for nurses to focus more attention on family resilience, especially in terms of the development of intervention strategies to strengthen family resilience.

  19. Increased risk of treatment with antidepressants in stroke compared with other chronic illness

    DEFF Research Database (Denmark)

    Dam, Henrik; Harhoff, Mette; Andersen, Per Kragh

    2007-01-01

    The prevalence of depression and anxiety is higher in patients with stroke than in the general population but it is unclear whether patients with stroke are at an increased risk of being treated for depression and anxiety compared with patients with other chronic illness. The objective...... of the present study was to investigate whether the rate of treatment with antidepressants is increased in patients with stroke compared with patients with other chronic illness and compared with the general population. By linkage of nationwide case registers, all patients who received a main diagnosis of stroke...

  20. A Self-Study Of My Life With A Chronic Illness

    OpenAIRE

    Taunya WIDEMAN-JOHNSTON

    2015-01-01

    The following paper is a self-study identifying and examining obstacles I have encountered from living with a chronic illness (CI). In particular, I intend to connect my life experiences as both an individual and educator in academia. The focus of this paper is to reveal my life experiences with a CI, the challenges I encounter, and how I learn I can foster change in the community. A serious failure in my health from the rare chronic gastrointestinal illness I have been diagnosed with initiat...

  1. The social course of epilepsy: chronic illness as social experience in interior China.

    Science.gov (United States)

    Kleinman, A; Wang, W Z; Li, S C; Cheng, X M; Dai, X Y; Li, K T; Kleinman, J

    1995-05-01

    Findings are reported from a collaborative research project on the experience of epilepsy and treatment among patients and family members in Shanxi and Ningxia Provinces in China. Family, marriage, financial and moral consequences of the social experience of epilepsy support the conceptualization of chronic illness as possessing a social course. Beyond traditional concern with stigma, application of concepts of delegitimation, sociosomatic processes, coping as resistance, contestation in the evaluation of efficacy and compliance, and the cultural ontology of suffering illustrate other ways that social theory is useful in research on chronic illness and disability.

  2. Frequency of MMPI Profile Types in Three Chronic Illness Populations.

    Science.gov (United States)

    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)

  3. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers.

    Science.gov (United States)

    Haafkens, Joke A; Kopnina, Helen; Meerman, Martha G M; van Dijk, Frank J H

    2011-05-17

    Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs) and human resource managers (HRM). Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Concept mapping methodology was used to elicit and map statements (ideas) from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Participants generated 35 statements. Each group (LMs and HRM) sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health researchers and planners should address in developing job retention

  4. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

    Directory of Open Access Journals (Sweden)

    Meerman Martha GM

    2011-05-01

    Full Text Available Abstract Background Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs and human resource managers (HRM. Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Methods Concept mapping methodology was used to elicit and map statements (ideas from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Results Participants generated 35 statements. Each group (LMs and HRM sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. Conclusions There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health

  5. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

    Science.gov (United States)

    2011-01-01

    Background Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs) and human resource managers (HRM). Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Methods Concept mapping methodology was used to elicit and map statements (ideas) from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Results Participants generated 35 statements. Each group (LMs and HRM) sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. Conclusions There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health researchers and planners should

  6. Seen through the patients' eyes: Safety of chronic illness care.

    Science.gov (United States)

    Desmedt, Melissa; Petrovic, Mirko; Bergs, Jochen; Vandijck, Dominique; Vrijhoef, Hubertus; Hellings, Johan; Vermeir, Peter; Cool, Lieselot; Dessers, Ezra

    2017-11-01

    Due to the increasing burden of chronic diseases, a considerable part of care delivery will continue to shift from secondary to primary care, and home care settings. Despite the growing importance of primary care, concerns about the safety of patients in hospitals have thus far driven most research in the field. Therefore, the present study sought to explore patients' perceptions and experiences of the safety of primary chronic care. An observational, cross-sectional study design was applied. Participants were recruited from the Flemish Patients' Platform, an independent organization that defends patients' rights and strives for more care quality. An online questionnaire was designed to assess: socio-demographic characteristics, medical consumption and patients' perspectives of the quality and safety of chronic care. Respondents (n = 339) had positive perceptions of the safety of primary chronic care as they indicated to receive safe care at home (68.1%), receive enough care support at home (70.8%) and experience good communication between their healthcare professionals (51.6%). Almost one quarter of respondents experienced an incident, mainly related to self-reported fall incidents (50.4%), wrong diagnoses or treatments (37.8%) and adverse drug events (11.8%). Also, more than half of respondents who experienced an incident (64.9%) indicated that poor communication between their healthcare professionals was the main cause. Information on patients' experiences is critical to identify patient safety incidents and to ultimately reduce patient harm. More research is needed to fully understand patient safety in primary chronic care to further improve patient safety. © The Author 2017. Published by Oxford University Press in association with the International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  7. An online approach to providing chronic illness self-management information.

    Science.gov (United States)

    Cudney, Shirley; Weinert, Clarann

    2012-02-01

    The purpose of this article was to describe an online approach to providing chronic illness self-management information to rural women with chronic illness. To self-manage chronic illness, individuals require information about their conditions. For those in rural areas who have limited access to health services, computer-based interventions are a means of providing this information. Participants were randomly assigned either to an 11-week computer intervention in which they completed nine online self-study health teaching units related to self-management, or to a control group. The health teaching units were positively rated as being helpful in managing their chronic illnesses, with scores ranging from 4.09 to 4.84 on a six-point scale. Perceptions of computer skills increased significantly for the intervention group, with no increase in the control group. Computer-based programs can be an effective approach to providing health information to rural women with chronic conditions that will assist them in their self-management efforts.

  8. The role of disease management programs in the health behavior of chronically ill patients.

    Science.gov (United States)

    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 (pmanagers 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.

  9. Chronotope disruption as a sensitizing concept for understanding chronic illness narratives.

    Science.gov (United States)

    Gomersall, Tim; Madill, Anna

    2015-04-01

    This article aims to elaborate chronotope disruption--a changed relation to time and space--as a sensitizing concept for understanding chronic illness narratives. Sixteen men and 16 women with Type 2 diabetes were purposefully sampled. Each was interviewed about his or her experience of diabetes self-management using the biographical-narrative interview method. Transcripts were inspected for key moments defined as emotionally laden stories relevant to the purpose of the research. We present dialogically inflected discursive analysis of exemplar extracts. The analysis demonstrates how the concept of chronotope disruption helps identify, and understand, important aspects of patients' chronic illness narratives. First, we investigate how medical advice can conflict with embodied experience and how progressive bodily deterioration can provoke a reevaluation of past illness (self-mis)management. Second, the increasing temporal and spatial intrusion of chronic illness into participants' lives is examined. Finally, we focus on the masquerade of health as an attempt to manage, hide, or deny that one is physically challenged. Chronotope disruption offers a useful sensitizing concept for approaching chronic illness narratives and around which to organize analytical insights and to develop practice. Chronotope analysis fills an important gap in the science through compensating current health sciences' focus on rationality, cognition, and prospective time (prediction) with a patient-oriented focus on emotionality, embodiment, and retrospective time (nostalgia). Chronotope disruption could be used to develop practice by gaining empathic understanding of patients' life-worlds and provides a tool to examine how new technologies change the way in which the chronically ill have "being" in the world. (c) 2015 APA, all rights reserved).

  10. Chronotope Disruption as a Sensitizing Concept for Understanding Chronic Illness Narratives

    Science.gov (United States)

    2014-01-01

    Objectives: This article aims to elaborate chronotope disruption —a changed relation to time and space— as a sensitizing concept for understanding chronic illness narratives. Methods: Sixteen men and 16 women with Type 2 diabetes were purposefully sampled. Each was interviewed about his or her experience of diabetes self-management using the biographical-narrative interview method. Transcripts were inspected for key moments defined as emotionally laden stories relevant to the purpose of the research. We present dialogically inflected discursive analysis of exemplar extracts. Results: The analysis demonstrates how the concept of chronotope disruption helps identify, and understand, important aspects of patients’ chronic illness narratives. First, we investigate how medical advice can conflict with embodied experience and how progressive bodily deterioration can provoke a reevaluation of past illness (self-mis)management. Second, the increasing temporal and spatial intrusion of chronic illness into participants’ lives is examined. Finally, we focus on the masquerade of health as an attempt to manage, hide, or deny that one is physically challenged. Conclusions: Chronotope disruption offers a useful sensitizing concept for approaching chronic illness narratives and around which to organize analytical insights and to develop practice. Chronotope analysis fills an important gap in the science through compensating current health sciences’ focus on rationality, cognition, and prospective time (prediction) with a patient-oriented focus on emotionality, embodiment, and retrospective time (nostalgia). Chronotope disruption could be used to develop practice by gaining empathic understanding of patients’ life-worlds and provides a tool to examine how new technologies change the way in which the chronically ill have “being” in the world. PMID:25197985

  11. The role of spiritual experiences and activities in the relationship between chronic illness and psychological well-being.

    Science.gov (United States)

    Ballew, Shoshana H; Hannum, Susan M; Gaines, Jean M; Marx, Katherine A; Parrish, John M

    2012-12-01

    Our research explores the correlates of spiritual experiences over a 2-year period in a sample of older adults (N = 164; mean age 81.9 years) living in a continuing care retirement community. Utilizing responses to the Daily Spiritual Experiences Scale, scores were analyzed for changes over time and for their hypothesized moderating effect in the relationship between chronic illness impact and markers of psychological well-being (as measured by the Geriatric Depression and Life Satisfaction scales). Repeated measures ANOVA indicated a significant decline (P spiritual experiences over a 2-year period of time, and t tests showed a significant difference by gender (P spiritual experiences than men. Analyses found low spirituality scores associated with low life satisfaction in all years (baseline: r = -.288, P spirituality and the presence of depressive symptoms at baseline (r = .186, P spirituality on the relationship between chronic illness impact and markers of psychological well-being were explored in all years, with a statistically significant effect found only for the presence of depressive symptoms in year 2. Higher impact of chronic illnesses is associated with more depressive symptoms under conditions of low spirituality. Future research may center upon longer-duration evaluation of reliance upon spiritual practices and their impact in care management models.

  12. Predictors of good-quality counselling from the perspective of hospitalised chronically ill adults.

    Science.gov (United States)

    Kaakinen, Pirjo; Kyngäs, Helvi; Kääriäinen, Maria

    2013-10-01

    To determine the factors that predict the quality of patient counselling from the perspective of hospitalised chronically ill adults. In view of the growing number of adults with chronic diseases and a lack of resources in health care, it would be valuable for healthcare professionals to know which factors result in good-quality counselling for such individuals. The study used a cross-sectional, descriptive design. Data were collected from chronically ill adults (n = 106) in northern Finland and were analysed using logistic regression. Counselling implementation was perceived to be of good quality if it was preplanned (odds ratio = 24·07) and patient-centred (odds ratio = 16·03) and if interaction during counselling (odds ratio = 13·27) was good. Counselling about social support (odds ratio = 14·78), preplanned counselling (odds ratio = 9·69), counselling about the results of investigations (odds ratio = 7·84) and counselling about disease progression (odds ratio = 7·66) were statistically significant predictors of the content being considered good quality. The effects of counselling on disease treatment (odds ratio = 11·33), patient-centred counselling (odds ratio = 9·75) and counselling about the effects of attitudes (odds ratio = 9·52) were statistically significant predictors of highly beneficial counselling. Counselling about the effects of disease treatment (odds ratio = 9·71) and interaction during counselling (odds ratio = 4·91) predicted the quality of counselling materials and methods. The results could be used to help healthcare professionals to ensure good-quality counselling by highlighting the areas that are most important to meet the expectations of chronically ill adults. The results can be used to develop the quality of chronically ill adults' counselling as well as to educate staff to focus better on chronically ill patients' counselling because it is necessary to develop new ways to offer more patient-centred counselling in order to

  13. Paediatric chronic illness and educational failure: the role of emotional and behavioural problems.

    Science.gov (United States)

    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.

  14. Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

    Science.gov (United States)

    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.

  15. Effects of loneliness on illness perception in persons with a chronic disease.

    Science.gov (United States)

    Özkan Tuncay, Fatma; Fertelli, Tülay; Mollaoğlu, Mukadder

    2018-04-01

    To determine the effects of loneliness on illness perception in persons with a chronic disease. How an illness is perceived not only affects all dimensions of a person's life but also plays an important role in his/her coping with the complications and consequences of the disease. One of the factors that influence the illness perception is loneliness. The study is a descriptive study. The study sample included 206 individuals over the 18 years of age, conscious, having had a chronic illness at least 1 year, having no communication problems and agreeing to participate in the study after being informed about the study. Data were collected with the Personal Information Form, the Illness Perception Questionnaire and the University of California Los Angeles Loneliness Scale. The forms were administered to the participants in an unoccupied patient room, and the data were collected through face-to-face interviews. The results of the study revealed that individuals with a chronic disease perceived emotional symptoms accompanying the disease more intensely that they accepted their disease was a chronic one and that their personal control and treatment control of the disease were at a middle level. The mean score the participants obtained from the University of California Los Angeles Loneliness Scale was 38.49 ± 11.15. There was a significant negative correlation between this mean score and the mean scores obtained from the following subscales consequences, treatment control, illness perception and emotional representations. In this study, it was concluded that the participants perceived their loneliness level as moderate and that their illness perception was negatively affected as their loneliness levels increased. The knowledge of clinical nurses about perception of patients with chronic illnesses and conditions affecting that perception will enhance compliance with the illness management or treatment strategies. Clinical nurses should observe residents closely for

  16. Effects of Rural Medical Insurance on Chronically Ill Patients' Choice of the Same Hospital Again in Rural Northern China.

    Science.gov (United States)

    Jiang, Ke; You, Daming; Li, Zhendong; Wei, Wei; Mainstone, Mitchell

    2018-04-12

    The emergence of rural health insurance plays a crucial role in alleviating the pressure on rural medical expenditure. Under the current medical system in northern China, rural medical insurance may reduce the free referral of patients with chronic diseases among hospitals. This study was carried out based on the results of an investigation of rural chronically-ill patients in eight county hospitals in northern China, as well as through the comparison and analysis of patients with chronic diseases, considering whether they were with or without rural health insurance. The main results showed that both age ( χ 2 = 22.9, p rural peoples' willingness to buy health insurance. Meanwhile, both the quality of the hospital's treatment ( B = 0.555, p rural health insurance had weakened the three relationships upon which the aforementioned correlations were based.

  17. [Medical inpatient rehabilitation influences on self-esteem and self-efficacy of chronically ill adolescents].

    Science.gov (United States)

    Kiera, S; Stachow, R; Petermann, F; Tiedjen, U

    2010-08-01

    In this article the development of self-esteem and self-efficacy in adolescents with chronic physical illness with and without psychological symptoms is measured over one year, following a medical inpatient rehabilitation treatment of four to six weeks. Gender- and diagnosis-related differences are analyzed. 243 chronically ill adolescents were interviewed at the beginning of their rehabilitation treatment. After one year data of 99 chronically ill adolescents are available (age: M=14.6; SD=1.70), 50 boys. Self-esteem was measured using the revised Rosenberg Self-Esteem Scale. The revised Allgemeine Selbstwirksamkeitsskala was chosen for assessing self-efficacy at school and other social contexts. At the beginning of rehabilitation, psychological symptoms were identified using the German version of the Strengths and Difficulties Questionnaire. Therapy of chronically ill adolescents in medical rehabilitation affects their self-esteem positively, with differences in self-esteem found between adolescents who show clinically relevant psychological symptoms and those who do not. Only minor changes are however noticed in ratings of self-efficacy at school and other social contexts. Gender- and diagnosis-related differences have not been found. Copyright Georg Thieme Verlag KG Stuttgart New York.

  18. Educational Functioning of Children of Parents with Chronic Physical Illness: A Systematic Review

    Science.gov (United States)

    Chen, Cliff Yung-Chi

    2016-01-01

    A systematic review of the literature was performed to answer the question: What are the effects of parental chronic physical illness on children's educational functioning? Thirteen studies that met the inclusion criteria for the purpose of this review were identified, indicating the paucity of research on the topic. The results found that…

  19. Psychosocial Adaptation to Chronic Illness and Disability: A Primer for Counselors

    Science.gov (United States)

    Livneh, Hanoch; Antonak, Richard F.

    2005-01-01

    In this article, the authors discuss 3 broad domains of psychosocial adaptation to chronic illness and disability. These include the dynamics (basic concepts, psychosocial responses, and coping strategies) typically associated with the process of adaptation to disabling conditions, assessment of adaptation as evidenced by 6 commonly used measures,…

  20. A photo elicitation study on chronically ill adolescents' identity constructions during transition

    DEFF Research Database (Denmark)

    Hanghøj, Signe; Schmiegelow, K.; Boisen, Kirsten A.

    2016-01-01

    Adolescence is an important phase of life with increasing independence and identity development, and a vulnerable period of life for chronically ill adolescents with a high occurrence of insufficient treatment adherence. We conducted four photo elicitation focus group interviews with 14 adolescents...

  1. Accuracy of triage for children with chronic illness and infectious symptoms

    NARCIS (Netherlands)

    N. Seiger (Nienke); M.V. Veen (Mirjam Van); E.W. Steyerberg (Ewout); J. van der Lei (Johan); H.A. Moll (Henriëtte)

    2013-01-01

    textabstractOBJECTIVE: This prospective observational study aimed to assess the validity of the Manchester Triage System (MTS) for children with chronic illnesses who presented to the emergency department (ED) with infectious symptoms. METHODS: Children (<16 years old) presenting to the ED of a

  2. A Multi-Modal Digital Game-Based Learning Environment for Hospitalized Children with Chronic Illnesses.

    Science.gov (United States)

    Chin, Jui-Chih; Tsuei, Mengping

    2014-01-01

    The aim of this study was to explore the digital game-based learning for children with chronic illnesses in the hospital settings. The design-based research and qualitative methods were applied. Three eight-year-old children with leukemia participated in this study. In the first phase, the multi-user game-based learning system was developed and…

  3. Quality of Life and School Absenteeism in Children with Chronic Illness

    Science.gov (United States)

    Emerson, Natacha D.; Distelberg, Brian; Morrell, Holly E. R.; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne

    2016-01-01

    Objective: Children and adolescents with a chronic illness (CI) tend to demonstrate diminished physical and social functioning, which contribute to school attendance issues. We investigated the role of social and physical functioning in reducing school absenteeism in children participating in Mastering Each New Direction (MEND), a family-based…

  4. Integrated care programmes for chronically ill patients: a review of systematic reviews.

    NARCIS (Netherlands)

    Ouwens, M.M.T.J.; Wollersheim, H.C.H.; Hermens, R.P.M.G.; Hulscher, M.E.J.L.; Grol, R.P.T.M.

    2005-01-01

    OBJECTIVE: To investigate effectiveness, definitions, and components of integrated care programmes for chronically ill patients on the basis of systematic reviews. DESIGN: Literature review from January 1996 to May 2004. MAIN MEASURES: Definitions and components of integrated care programmes and all

  5. Cost-of-illness of chronic hepatitis B infection in Vietnam

    NARCIS (Netherlands)

    Tu, H.A.T.; Riewpaiboon, A.; Woerdenbag, H.J.; Postma, M.J.; Li, S.C.

    2010-01-01

    OBJECTIVES: To quantify the financial burden of chronic hepatitis B (CHB) infection and its complications in a cost-of-illness study in Vietnam, a highly endemic country of hepatitis B virus (HBV) infection. METHODS: The study adopted the micro-costing approach. For direct medical cost estimation,

  6. Adults Living with Limited Literacy and Chronic Illness: Patient Education Experiences

    Science.gov (United States)

    King, Judy; Taylor, Maurice C.

    2010-01-01

    The purpose of this study was to investigate how Canadian adults living with limited literacy and chronic illness made meaning of their patient education experiences. The study used a hermeneutic phenomenological research design and employed three data sources over a nine-month period. Data was interpreted and analyzed as it was collected,…

  7. Efficacy of Psychosocial Group Intervention for Children With Chronic Illness and Their Parents

    NARCIS (Netherlands)

    Scholten, Linde; Willemen, Agnes M.; Last, Bob F.; Maurice-Stam, Heleen; van Dijk, Elisabeth M.; Ensink, Elske; Zandbelt, Noortje; van der Hoop-Mooij, Aafke; Schuengel, Carlo; Grootenhuis, Martha A.

    2013-01-01

    OBJECTIVE: To investigate the efficacy of a cognitive-behavioral group intervention for children with chronic illnesses and to test the effect of an added parent component. METHODS: Children (n = 194) and their parents participated in a multi-center randomized clinical trial comparing a child-only

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

    Science.gov (United States)

    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

  9. Living with a Chronic Disabling Illness and Then Some: Data from the 1998 Ice Storm

    Science.gov (United States)

    Gignac, Monique A. M.; Cott, Cheryl A.; Badley, Elizabeth M.

    2003-01-01

    This study examined the impact of the 1998 Canadian ice storm on the physical and psychological health of older adults (age greater than 55 years) living with a chronic physical illness, namely osteoarthritis and/or osteoporosis. Although disasters are relatively rare, they are a useful means of examining the impact of a single stressor on a group…

  10. Relation between perceived health and sick leave in employees with a chronic illness

    NARCIS (Netherlands)

    Boot, C.R.L.; Koppes, L.L.J.; Bossche, S.N.J. van den; Anema, J.R.; Beek, A.J. van der

    2011-01-01

    Introduction: To improve work participation in individuals with a chronic illness, insight into the role of work-related factors in the association between health and sick leave is needed. The aim of this study was to gain insight into the contribution of work limitations, work characteristics, and

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

    Science.gov (United States)

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

    2012-01-01

    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. PMID:23226974

  12. Loneliness, depression, social support, and quality of life in older chronically ill Appalachians.

    Science.gov (United States)

    Theeke, Laurie A; Goins, R Turner; Moore, Julia; Campbell, Heather

    2012-01-01

    This study's purpose was to describe loneliness and to examine the relationships between loneliness, depression, social support, and QOL in chronically ill, older Appalachians. In-person interviews were conducted with a convenience sample of 60 older, chronically ill, community-dwelling, and rural adults. Those with dementia or active grief were excluded. The UCLA Loneliness Scale (Russell, Peplau, & Cutrona, 1985), Geriatric Depression Scale (Shiekh & Yesavage, 1986), Katz ADL scale (Katz, Down, & Cash, 1970), MOS Social Support Scale (Sherbourne & Stewart, 1991), and a visual analog scale for Quality of Life (Spitzer et al., 1981) scale were used. Diagnoses were obtained through chart reviews. SPSS was used for data analyses. The majority of the 65% female sample (M age = 75 years) were married and impoverished. Participants' number of chronic illnesses averaged more than 3. Over 88% of participants reported at least 1 area of functional impairment. Loneliness was prevalent with UCLA loneliness scores indicating moderate to high loneliness, ranging from 39 to 62 (possible scores were 20-80). Higher loneliness scores correlated with depression, lower Qol, and lower social support, particularly lower emotional support. This study provides evidence that loneliness is a significant problem for older chronically ill Appalachian adults and that it may be related to low emotional support. Further, it provides evidence that this population may be significantly lonely and may not self-identify as lonely. Screening for loneliness and designing interventions that target the emotional aspects of loneliness could be important in this population.

  13. Introduction to Health Promotion for People with Chronic Illness and Disability

    Science.gov (United States)

    Chan, Fong; Chiu, Chung-Yi; Bezyak, Jill L.; Keegan, John

    2012-01-01

    Health promotion has received increasing attention in rehabilitation counseling research. Health promotion research contributes to theory building and provides the foundation for empirically supported interventions that can improve the health-related quality of life and employment outcomes of people with chronic illness and disability. In this…

  14. Development of disaster pamphlets based on health needs of patients with chronic illnesses.

    Science.gov (United States)

    Motoki, Emi; Mori, Kikuko; Kaji, Hidesuke; Nonami, Yoko; Fukano, Chika; Kayano, Tomonori; Kawada, Terue; Kimura, Yukari; Yasui, Kumiko; Ueki, Hiroko; Ugai, Kazuhiro

    2010-01-01

    The aim of this research was to develop a pamphlet that would enable patients with diabetes, rheumatic diseases, chronic respiratory disease, and dialysis treatment to be aware of changes in their physical conditions at an early stage of a disaster, cope with these changes, maintain self-care measures, and recover their health. Illness-specific pamphlets were produced based on disaster-related literature, news articles, surveys of victims of the Great Hanshin-Awaji Earthquake Disaster and Typhoon Tokage, and other sources. Each pamphlet consisted of seven sections-each section includes items common to all illnesses as well as items specific to each illness. The first section, "Physical Self-Care", contains a checklist of 18 common physical symptoms as well as symptoms specific to each illness, and goes on to explain what the symptoms may indicate and what should be done about them. The main aim of the "Changes in Mental Health Conditions" section is to detect posttraumatic stress disorder (PTSD) at an early stage. The section "Preventing the Deterioration of Chronic Illnesses" is designed to prevent the worsening of each illness through the provision of information on cold prevention, adjustment to the living environment, and ways of coping with stress. In the sections, "Medication Control" and "Importance of Having Medical Examinations", spaces are provided to list medications currently being used and details of the hospital address, in order to ensure the continued use of medications. The section, "Preparing for Evacuations" gives a list of everyday items and medical items needed to be prepared for a disaster. Finally, the "Methods of Contact in an Emergency" section provides details of how to use the voicemail service. The following content-specific to each illness also was explained in detail: (1) for diabetes, complications arising from the deterioration of the illness, attention to nutrition, and insulin management; (2) for rheumatic diseases, a checklist of

  15. Does chronic illness cause adverse social and economic consequences among Swedes?

    DEFF Research Database (Denmark)

    Lindholm, C; Burström, B; Diderichsen, F

    2001-01-01

    had acquired LLSI at interview II varied between 1.4 and 4.0 for the outcomes. The elevated OR decreased after testing for the mediating effect of social context and the labour market position for financial difficulties but remained significantly elevated. CONCLUSIONS: The results suggest that LLSI...... question raised here is therefore to examine chronic illness (defined as limiting longstanding illness. LLSI) as a causal factor contributing adverse financial conditions, unemployment or labour market exclusion. METHODS: A longitudinal design was employed with data from a sample of 27,773 people...... interviewed twice (Swedish Surveys of Living Conditions performed by Statistics Sweden), including subjects (n = 12,556) at interview I, without chronic illness or adverse socioeconomic conditions. RESULTS: The odds ratios for labour market exclusion, unemployment, and financial difficulties among people who...

  16. Coping styles and locus of control as predictors for psychological adjustment of adolescents with a chronic illness

    NARCIS (Netherlands)

    Meijer, SA; Sinnema, G; Bijstra, JO; Mellenbergh, GJ; Wolters, WHG

    This study examines the way coping styles and locus of control contribute to the prediction of psychosocial adjustment in adolescents with a chronic illness. Psychosocial adjustment of 84 adolescents aged 13-16 years with a chronic illness was assessed with measures of social adjustment. global

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

    Science.gov (United States)

    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.

  18. Are We overestimating the prevalence of depression in chronic illness using questionnaires? Meta-analytic evidence in obstructive sleep apnoea

    DEFF Research Database (Denmark)

    Nanthakumar, Shenooka; Bucks, Romola S.; Skinner, Timothy C.

    2016-01-01

    Depression is common in chronic illness, albeit prevalence can be highly variable. This variability may be a function of symptom overlap between depression and chronic illness. Using Obstructive Sleep Apnoea (OSA) as an exemplar, this meta-analysis explored whether the proportion of overlapping s...

  19. Chronic illness and disordered eating: a discussion of the literature.

    Science.gov (United States)

    Quick, Virginia M; Byrd-Bredbenner, Carol; Neumark-Sztainer, Dianne

    2013-05-01

    This paper describes the prevalence of eating disorders and disordered eating behaviors, the reasons why these practices are endorsed, and the potential consequences in youths and young adults with selected diet-related chronic health conditions (DRCHCs) and provides recommendations for eating disorder prevention interventions and research efforts. Although it remains unclear whether the prevalence of eating disorders is higher in those with DRCHCs compared with the general population, overall findings suggest that young people with DRCHCs may be at risk of endorsing disordered eating behaviors that may lead to diagnosis of an eating disorder and other health problems over the course of their treatment. Thus, health care providers should be aware that young people with DRCHCs may be at risk of eating disorders and carefully monitor psychological changes and the use of unhealthy weight control methods. It is also important to develop and evaluate theory-based interventions and disease-specific eating disorder risk screening tools that are effective in halting the progression of eating disorders and negative health outcomes in young people with chronic health conditions.

  20. 'I have cystic fibrosis': an analysis of web-based disclosures of a chronic illness.

    Science.gov (United States)

    Ravert, Russell D; Crowell, Toni L

    2008-11-01

    This study examined instances where individuals with cystic fibrosis disclosed their illness on the World Wide Web, better understand their experiences and needs across stages of the lifespan. Disclosing one's chronic illness is typically done purposefully, so examining those disclosures allows a naturalistic window into individuals' experiences and needs. This study is unique to Internet-based studies of chronic illness in that data are not limited to interactions at health-related websites, but include disclosure instances gathered across a variety of Internet contexts. Qualitative content analysis with a summative component was used. A web-based search engine was used to identify all web pages containing the phrases 'I have cystic fibrosis' and 'I have cf' (n = 277). Constant comparative analysis methods were used to identify thematic categories of context. Quantitative methods were used to examine age-related differences in the distribution of those disclosure statements. Findings were interpreted within a framework of Erikson's lifespan psychosocial theory. Adolescents (13-18 years) most frequently expressed psychosocial concerns and enlisted social support. Emerging adults (19-25 years) tended to present cystic fibrosis as just one of many self-characteristics. Adults (>25 years) tended to reach out to support others with cystic fibrosis. The study identified age-related differences in the types of illness disclosures found among individuals with cystic fibrosis. It also demonstrated that web-based research into chronic illness need not be limited to analysis of illness-specific online communities. Findings suggest that psychosocial interventions for individuals with cystic fibrosis across the lifespan might focus on (a) facilitating social support and incorporating illness into one's emerging identity among adolescents, (b) supporting emerging adults in presenting and incorporating themselves into larger social networks and (c) partnering with

  1. Psychosocial well-being in young adults with chronic illness since childhood: the role of illness cognitions

    Science.gov (United States)

    2014-01-01

    Background More and more pediatric patients reach adulthood. Some of them are successfully integrating in adult life, but many others are not. Possibly Illness cognitions (IC) - the way people give meaning to their illness/disability – may play a role in individual differences on long-term adjustment. This study explored the association of IC with disease–characteristics and Health Related Quality of Life (HRQoL), anxiety and depression in young adults with a disability benefit due to childhood-onset chronic condition. Methods In a cross-sectional study, young adults (22–31 years, N = 377) who claimed a disability benefit because of a somatic condition since childhood, completed the Illness Cognition Questionnaire (acceptance-helplessness-benefits), RAND-36 (HRQoL) and HADS (anxiety and depression) online. Besides descriptive statistics, linear regression analyses were conducted to predict (1) illness cognitions by age, gender and disease-characteristics, and (2) HRQoL (Mental and Physical Component Scale), Anxiety and Depression by illness cognitions, controlling for disease-characteristics, age and gender. Results Respectively 90.2%, 83.8% and 53.3% of the young adults with a disability benefit experienced feelings of acceptance, benefits and helplessness. Several disease-characteristics were associated with IC. More acceptance and less helplessness were associated with better mental (β = 0.31; β = −0.32) and physical (β = 0.16; β = −0.15) HRQoL and with less anxiety (β = −0.27; β = 0.28) and depression (β = −0.29; β = 0.31). Conclusions IC of young adult beneficiaries were associated with their HRQoL and feelings of anxiety and depression. Early recognition of psychological distress and negative IC might be a key to the identification of pediatric patients at risk for long-term dysfunction. Identification of maladaptive illness cognitions enables the development of psychosocial interventions to optimise

  2. Measuring Children's Decision-Making Involvement Regarding Chronic Illness Management

    Science.gov (United States)

    Harris, Diana

    2012-01-01

    Objectives To develop a measure of decision-making involvement in children and adolescents with cystic fibrosis, diabetes, and asthma. Methods Parent–child dyads completed the Decision-Making Involvement Scale (DMIS) and measures of locus of control and family communication. DMIS items were subjected to exploratory and confirmatory factor analysis (CFA). Temporal stability and construct validity were assessed. Results The parent form was reduced to 20 items representing five factors. CFA showed that the five factors were an acceptable fit to the parent- and child-report data. Internal consistency values ranged from 0.71 to 0.91. Temporal stability was supported by moderate–substantial intraclass correlation coefficients. DMIS subscales were associated with child age, child locus of control, and family communication. Conclusions The DMIS can be used to inform our understanding of the transition to greater independence for illness management. Additional research is needed to examine outcomes of decision-making involvement, including treatment adherence and responsibility. PMID:22138318

  3. The self-efficacy model of medication adherence in chronic mental illness.

    Science.gov (United States)

    McCann, Terence V; Clark, Eileen; Lu, Sai

    2008-11-01

    In this position paper, the self-efficacy model of medication adherence in chronic mental illness is presented, and its application to antipsychotic medication adherence is considered. Poor adherence to antipsychotic medications is common in chronic mental illness. Major implications of this are relapse and re-hospitalisation. Several conceptual frameworks have been developed about adherence and, in some instances, have been incorporated in medication taking studies, but have resulted in inconsistent outcomes. This paper draws on a review of literature from databases to inform the development of the self-efficacy model of medication adherence. Inclusion and exclusion criteria were developed from primary and secondary research questions. The model places the person with chronic mental illness as an active participant central to the process of medication taking. It has three components: core factors, contextual influences and a continuum. The factors comprise a central factor, self-efficacy and four interrelated supporting influences: perceived medication efficacy; access to, and relationships with, health professionals; significant other support and supported living circumstances. The factors are affected by three broad contextual influences - personal issues, medication side-effects and complexity, and social stigma - which affect the way individuals take their medications. A continuum exists between adherence and non-adherence. The model positions service users at the heart of adherence by giving prominence to self-efficacy, medication efficacy and to immediate social, psychological and environmental supports. Further work is needed to validate, refine and extend the model. For practitioners involved in prescribing and medication management in people with chronic mental illness, the model provides a theoretical framework to strengthen adherence. It highlights the need to consider broader influences on medication taking. Moreover, it places the person with chronic

  4. Disease-management partnership functioning, synergy and effectiveness in delivering chronic-illness care.

    Science.gov (United States)

    Cramm, Jane Murray; Nieboer, Anna Petra

    2012-06-01

    This study explored associations among disease-management partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. This study had a cross-sectional design. The study sample consists of 218 professionals (out of 393) participating in 22 disease-management partnerships in various regions of the Netherlands. We assessed the relationships among partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. Partnership functioning was assessed through leadership, resources, administration and efficiency. Synergy was considered the proximal outcome of partnership functioning, which, in turn, influenced the effectiveness of disease-management partnerships [measured with the Assessment of Chronic Illness Care (ACIC) survey instrument]. Overall ACIC scores ranged from 3 to 10, indicating basic/intermediate to optimal/comprehensive delivery of chronic-illness care. The results of the regression analysis demonstrate that partnership effectiveness was positively associated with leadership (β = 0.25; P≤ 0.01), and resources (β = 0.31; P≤ 0.001). No significant relationship was found between administration, efficiency and partnership effectiveness. Partnership synergy acted as a mediator for partnership functioning and was statistically significantly associated with partnership effectiveness (β = 0.25; P≤ 0.001). Disease-management partnerships seemed better able to deliver higher levels of chronic-illness care when synergy is created between partners. Synergy was more likely to emerge with boundary-spanning leaders who understood and appreciated partners' different perspectives, could bridge their diverse cultures and were comfortable sharing ideas, resources and power. In addition, the acknowledgement of and ability to use members' resources are valuable in engaging partners' involvement and achieving synergy in disease-management partnerships.

  5. Emergency and disaster preparedness for chronically ill patients: a review of recommendations

    Directory of Open Access Journals (Sweden)

    Tomio J

    2014-12-01

    Full Text Available Jun Tomio,1 Hajime Sato2 1Department of Public Health, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan; 2Department of Health Policy and Technology Assessment, National Institute of Public Health, Wako, Japan Abstract: Recent disasters, especially those in developed countries, have highlighted the importance of disaster preparedness measures for chronic diseases. A number of surviving patients experienced the exacerbation of a chronic illness, such as hypertension, diabetes, cancer, and chronic respiratory diseases, due to disaster-related stress, interruption of care, or both; for some patients, these exacerbations resulted in death. Here, we review reports from recent disasters in developed countries and summarize the recommendations for disaster preparedness of chronically ill patients. A considerable number of recommendations based on the lessons learned from recent disasters have been developed, and they provide practical and essential steps to prevent treatment interruption during and after a disaster. To improve preparedness efforts, we suggest that health care providers should be aware of the following three suggestions: 1 recommendations should be evidence-based; 2 recommendations should contain consistent messages; and 3 recommendations should be feasible. Keywords: disaster, chronic illness, preparedness

  6. Using zero-inflated models to explain chronic illness, pain, and complementary and alternative medicine use.

    Science.gov (United States)

    Ayers, Stephanie L; Kronenfeld, Jennie J

    2011-07-01

    To extend knowledge of complementary and alternative medicine (CAM) use by understanding how poor health influences both trying CAM and number of CAM types used. Using the 2002 National Health Interview Survey's Supplemental Section, zero-inflated models were employed to examine CAM use across 5 domains. Results indicate that level of pain is the only consistent predictor of both the likelihood of trying CAM and how many types of CAM are used. Pain increased the odds ratio and number of CAM types used across all domains. Findings, however, were mixed for health status and chronic conditions. Only prayer was associated with higher odds ratio (OR=1.705, PCAM types used for chronic illnesses (OR=1.024, PCAM use behaviors. Pain is the only consistent predictor of both trying CAM and the number of CAM types used. Chronic illness is only consistently influential for prayer.

  7. Personal strengths reported by people with chronic illness: A qualitative study.

    Science.gov (United States)

    Kristjansdottir, Olöf Birna; Stenberg, Una; Mirkovic, Jelena; Krogseth, Tonje; Ljoså, Tone Marte; Stange, Kurt C; Ruland, Cornelia M

    2018-02-25

    Self-management of chronic illness can be highly demanding and people need to mobilize their personal strengths to live well with their condition. More knowledge is needed about how people with chronic illness perceive and use their personal strengths as a basis for better integrating empowering person-centred approaches into health care. To explore what people with chronic illness describe as their strengths relevant to their health and well-being. Thirty-nine participants (11 men) from 4 outpatient self-management programmes were recruited to individual or group interviews. Participants included patients with chronic respiratory disease (n = 7), chronic pain (n = 18) and morbid obesity (n = 14). Interviews were analysed using content analysis. A number of personal strengths were reported and categorized into 3 domains: (i) Internal strengths, (ii) External strengths and (iii) Self-management strategies. Internal strengths included being persistent, having a positive outlook, being kind and caring, experiencing positive emotions, being kind towards oneself, reconciling oneself with the situation, having courage and having knowledge and insight. External strengths included support from family, friends, peers and health-care providers. Self-management strategies included being active, planning and prioritizing, reducing stress, goal setting and seeking knowledge and help. The study provides insights into personal strengths as reported by people with chronic illness. The results complement prior findings on strengths in people with health challenges and can aid in incorporating person-centred approaches into health care. © 2018 The Authors Health Expectations published by John Wiley & Sons Ltd.

  8. The Dutch health insurance reform: switching between insurers, a comparison between the general population and the chronically ill and disabled

    Directory of Open Access Journals (Sweden)

    Groenewegen Peter P

    2008-03-01

    Full Text Available Abstract Background On 1 January 2006 a number of far-reaching changes in the Dutch health insurance system came into effect. In the new system of managed competition consumer mobility plays an important role. Consumers are free to change their insurer and insurance plan every year. The idea is that consumers who are not satisfied with the premium or quality of care provided will opt for a different insurer. This would force insurers to strive for good prices and quality of care. Internationally, the Dutch changes are under the attention of both policy makers and researchers. Questions answered in this article relate to switching behaviour, reasons for switching, and differences between population categories. Methods Postal questionnaires were sent to 1516 members of the Dutch Health Care Consumer Panel and to 3757 members of the National Panel of the Chronically ill and Disabled (NPCD in April 2006. The questionnaire was returned by 1198 members of the Consumer Panel (response 79% and by 3211 members of the NPCD (response 86%. Among other things, questions were asked about choices for a health insurer and insurance plan and the reasons for this choice. Results Young and healthy people switch insurer more often than elderly or people in bad health. The chronically ill and disabled do not switch less often than the general population when both populations are comparable on age, sex and education. For the general population, premium is more important than content, while the chronically ill and disabled value content of the insurance package as well. However, quality of care is not important for either group as a reason for switching. Conclusion There is increased mobility in the new system for both the general population and the chronically ill and disabled. This however is not based on quality of care. If reasons for switching are unrelated to the quality of care, it is hard to believe that switching influences the quality of care. As yet there

  9. Anticipated stigma in chronic illness patients in Cambodia, Myanmar and Vietnam.

    Science.gov (United States)

    Peltzer, Karl; Pengpid, Supa

    2016-12-01

    The aim of this study was to explore the prevalence and relationship of anticipated chronic illness stigma among patients diagnosed with a variety of chronic diseases in three Southeast Asian countries (Cambodia, Myanmar and Vietnam). A cross-sectional survey was conducted in 4,803 adult chronic disease patients (mean age 49.3 years; SD=16.5) recruited systematically from health facilities. Overall, the results indicate that 20.7% of patients reported that for any of the 12 stigma items, they anticipated they were likely or very likely to experience chronic disease stigma. A multivariate analysis of sociodemographics revealed the following were associated with anticipated chronic disease stigma: older versus younger age, OR (odds ratio) = 0.71; 95% Confidence Interval (CI) [0.58, 0.87]; higher versus lower education, OR = 2.23; 95% CI [1.81, 2.75]; origin from Myanmar or Vietnam, being single, divorced or widowed, rural residence, and health status (having three or more chronic conditions versus having one chronic condition), OR = 1.93; 95% CI [1.58, 2.35]; lower versus higher quality of life, OR = 0.73; 95% CI [0.63, 0.85]); health risk behavior (physical inactivity, poor diet, current smoking, and problem drinking) and low versus medium or high medication adherence (OR = 0.69; 95% CI [0.55,0.86]). This study demonstrated the possible consequences of anticipated stigma on the health and behavior of people living with chronic diseases, and several factors for chronic disease stigma were identified that can help guide interventions to reduce chronic illness stigma in this population.

  10. Fathers' coping mechanisms related to parenting a chronically ill child: implications for advanced practice nurses.

    Science.gov (United States)

    Broger, Brenda; Zeni, Mary Beth

    2011-01-01

    The presence of a father has been positively associated with outcomes in several aspects of a child's life. This descriptive study investigated coping methods used by fathers of chronically ill children, fathers' perceived severity of the child's illness, and demographic differences related to coping mechanisms. A sample of 54 fathers of chronically ill children completed measurements of demographics, coping processes, and severity levels of their child's chronic condition. Data were analyzed with SPSS 14.0 using parametric and nonparametric tests to examine relationships and coping behaviors used by fathers in northwest Florida. A majority of fathers used an emotion-focused coping process with a religious dimension. No association was found between perceived level of severity of their child's illness and eight subscales used to measure coping methods; however, statistical significance was found between the age and marital status of fathers with seven of the subscales. Married and older fathers more often used "positive" coping mechanisms than did younger, unmarried fathers. The findings emphasize the need for practitioners, clinicians, and educators to assess, support, and provide appropriate resources to fathers in order to promote positive effective coping and increase the level of involvement in the child's life. Copyright © 2011 National Association of Pediatric Nurse Practitioners. Published by Mosby, Inc. All rights reserved.

  11. Paliperidone Palmitate Once-Monthly Treatment in Recent Onset and Chronic Illness Patients With Schizoaffective Disorder.

    Science.gov (United States)

    Bossie, Cynthia A; Turkoz, Ibrahim; Alphs, Larry; Mahalchick, Lucy; Fu, Dong-Jing

    2017-04-01

    Data from a multiphase schizoaffective disorder study (NCT01193153) were used to examine the effects of paliperidone palmitate once-monthly (PP1M) by subjects' illness duration, defined as recent onset (≤5 years since first psychiatric diagnosis; n = 206) and chronic illness (>5 years; n = 461). Symptom and functioning scores, as measured during open-label PP1M acute and stabilization treatment phases, improved in both subpopulations, with greater improvements in recent onset than chronic illness subjects (p ≤ 0.022). Relapse rates, examined during the double-blind, placebo-controlled phase, were higher with placebo than PP1M: 30.0% vs. 10.2% (p = 0.014; hazard ratio [HR]: 2.8; 95% confidence interval [CI]: 1.11-7.12; p = 0.029) in the recent onset subpopulation and 35.5% vs. 18.1% (p = 0.001; HR: 2.38; 95% CI: 1.37-4.12; p = 0.002) in the chronic illness subpopulation. Growing evidence in the treatment of schizophrenia and schizoaffective disorder supports early intervention with long-acting antipsychotics.

  12. Mental health in adolescents with chronic physical illness versus controls in Northern Russia.

    Science.gov (United States)

    Zashikhina, A; Hagglof, B

    2007-06-01

    To study the behaviour/emotional problems and depression in adolescents with and without physical illnesses; to compare the same psychological parameters in adolescents with different disorders. The sample consisted of 148 adolescents aged 13-16 years with one of the following physical chronic conditions: diabetes (n = 55), asthma (n = 59), or epilepsy (n = 59). Comparative data were obtained from a group of 301 schoolchildren. Test batteries (Child Behaviour Check-List, Youth Self Report, Beck Depression Inventory, socio-economic status questions) were individually completed by adolescents and their mothers. Overall adolescents with physical illness had more behaviour/emotional problems and were more depressed compared to controls although results varied according to the informants and the disease severity. Two risk groups were revealed: girls with asthma and boys with epilepsy. Our results suggest that mental health in adolescents with chronic physical illnesses is poorer than in controls and their mental health state is very much associated with the disease severity. The findings of the study can help to develop disease targeted and comprehensive interventions in outpatient clinics of Northern Russia in order to reduce behaviour and mood disorders in adolescents with chronic physical illnesses and therefore to smooth the transition through their teenage years.

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

    Science.gov (United States)

    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.

  14. Development and validation of a printed information brochure for families of chronically critically ill patients.

    Science.gov (United States)

    Carson, Shannon S; Vu, Maihan; Danis, Marion; Camhi, Sharon L; Scheunemann, Leslie P; Cox, Christopher E; Hanson, Laura C; Nelson, Judith E

    2012-01-01

    Families and other surrogate decisionmakers for chronically critically ill patients often lack information about patient prognosis or options for care. This study describes an approach to develop and validate a printed information brochure about chronic critical illness aimed at improving comprehension of the disease process and outcomes for patients' families and other surrogate decisionmakers. Investigators reviewed existing literature to identify key domains of informational needs. Content of these domains was incorporated in a draft brochure that included graphics and a glossary of terms. Clinical sensibility, balance, and emotional sensitivity of the draft brochure were tested in a series of evaluations by cohorts of experienced clinicians (n = 49) and clinical content experts (n = 8) with revisions after each review. Cognitive testing of the brochure was performed through interviews of ten representative family members of chronically critically ill patients with quantitative and qualitative analysis of responses. Clinical sensibility and balance were rated in the two most favorable categories on a five-point scale by more than two thirds of clinicians and content experts. After review, family members described the brochure as clear and readable and recommended that the brochure be delivered to family members by clinicians followed by a discussion of its contents. They indicated that the glossary was useful and recommended supplementation by additional lists of local resources. After reading the brochure, their prognostic estimates became more consistent with actual outcomes. We have developed and validated a printed information brochure that may improve family comprehension of chronic critical illness and its outcomes. The structured process that is described can serve as a template for the development of other information aids for use with seriously ill populations.

  15. Achieving Effective Universal Health Coverage And Diagonal Approaches To Care For Chronic Illnesses.

    Science.gov (United States)

    Knaul, Felicia Marie; Bhadelia, Afsan; Atun, Rifat; Frenk, Julio

    2015-09-01

    Health systems in low- and middle-income countries were designed to provide episodic care for acute conditions. However, the burden of disease has shifted to be overwhelmingly dominated by chronic conditions and illnesses that require health systems to function in an integrated manner across a spectrum of disease stages from prevention to palliation. Low- and middle-income countries are also aiming to ensure health care access for all through universal health coverage. This article proposes a framework of effective universal health coverage intended to meet the challenge of chronic illnesses. It outlines strategies to strengthen health systems through a "diagonal approach." We argue that the core challenge to health systems is chronicity of illness that requires ongoing and long-term health care. The example of breast cancer within the broader context of health system reform in Mexico is presented to illustrate effective universal health coverage along the chronic disease continuum and across health systems functions. The article concludes with recommendations to strengthen health systems in order to achieve effective universal health coverage. Project HOPE—The People-to-People Health Foundation, Inc.

  16. Competence in chronic mental illness: the relevance of practical wisdom.

    Science.gov (United States)

    Widdershoven, Guy A M; Ruissen, Andrea; van Balkom, Anton J L M; Meynen, Gerben

    2017-06-01

    The concept of competence is central to healthcare because informed consent can only be obtained from a competent patient. The standard approach to competence focuses on cognitive abilities. Several authors have challenged this approach by emphasising the role of emotions and values. Combining cognition, emotion and values, we suggest an approach which is based on the notion of practical wisdom. This focuses on knowledge and on determining what is important in a specific situation and finding a balance between various values, which are enacted in an individual's personal life. Our approach is illustrated by two cases of patients with obsessive-compulsive disorder. 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/.

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

    Science.gov (United States)

    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.

  18. Psychometric Properties of the Self-Perception Profile for Children in Children with Chronic Illness.

    Science.gov (United States)

    Ferro, Mark A; Tang, Jennie

    2017-07-01

    The Self-Perception Profile for Children (SPPC) is a commonly used measure of self-concept in children, but little research has examined its psychometric properties in children newly-diagnosed with chronic illness. Confirmatory factor analysis and examination of reliability and convergent and discriminant validity of the SPPC was conducted in 31 children newly-diagnosed with asthma, diabetes, epilepsy, food allergy, or juvenile arthritis. The unidimensionality of each domain of the SPPC was confirmed, internal reliability was robust (α=.83-.95), and inter-domain polychoric correlations ranged from weak to strong (ρ=.05-.85) Convergent validity was demonstrated with measures of global self-concept and domains of quality of life. The Global Self-worth domain showed discriminant validity between children with and without comorbid mental disorder. Findings extend the psychometric properties of the SPPC as a valid and reliable scale in children newly-diagnosed with chronic illness.

  19. Prediction of chronic critical illness in a general intensive care unit

    Directory of Open Access Journals (Sweden)

    Sérgio H. Loss

    2013-06-01

    Full Text Available OBJECTIVE: To assess the incidence, costs, and mortality associated with chronic critical illness (CCI, and to identify clinical predictors of CCI in a general intensive care unit. METHODS: This was a prospective observational cohort study. All patients receiving supportive treatment for over 20 days were considered chronically critically ill and eligible for the study. After applying the exclusion criteria, 453 patients were analyzed. RESULTS: There was an 11% incidence of CCI. Total length of hospital stay, costs, and mortality were significantly higher among patients with CCI. Mechanical ventilation, sepsis, Glasgow score < 15, inadequate calorie intake, and higher body mass index were independent predictors for cci in the multivariate logistic regression model. CONCLUSIONS: CCI affects a distinctive population in intensive care units with higher mortality, costs, and prolonged hospitalization. Factors identifiable at the time of admission or during the first week in the intensive care unit can be used to predict CCI.

  20. Prediction of chronic critical illness in a general intensive care unit.

    Science.gov (United States)

    Loss, Sérgio H; Marchese, Cláudia B; Boniatti, Márcio M; Wawrzeniak, Iuri C; Oliveira, Roselaine P; Nunes, Luciana N; Victorino, Josué A

    2013-01-01

    To assess the incidence, costs, and mortality associated with chronic critical illness (CCI), and to identify clinical predictors of CCI in a general intensive care unit. This was a prospective observational cohort study. All patients receiving supportive treatment for over 20 days were considered chronically critically ill and eligible for the study. After applying the exclusion criteria, 453 patients were analyzed. There was an 11% incidence of CCI. Total length of hospital stay, costs, and mortality were significantly higher among patients with CCI. Mechanical ventilation, sepsis, Glasgow score intensive care units with higher mortality, costs, and prolonged hospitalization. Factors identifiable at the time of admission or during the first week in the intensive care unit can be used to predict CCI. Copyright © 2013 Elsevier Editora Ltda. All rights reserved.

  1. Self-reported barriers to medication adherence among chronically ill adolescents

    DEFF Research Database (Denmark)

    Hanghøj, Signe; Boisen, Kirsten A

    2014-01-01

    , forgetfulness, organization, medicine complexity, and financial costs. Most reported barriers to adherence were not unique to specific diseases. CONCLUSION: Some barriers seem to be specific to adolescence; for example, relations to parents and peers and adolescent development. Knowledge and assessment......PURPOSE: To investigate self-reported barriers to medication adherence among chronically ill adolescents, and to investigate whether barriers are unique to specific chronic diseases or more generic across conditions. METHODS: A systematic search of Web of Science, PubMed, Embase, Psyc...

  2. Self-esteem in adolescents with chronic physical illness vs. controls in Northern Russia

    OpenAIRE

    Zashikhina, Anna; Hägglöf, Bruno

    2014-01-01

    Objective: This work aims to study self-esteem in adolescents with diabetes, asthma and epilepsy; compare the results with those of the representative sample of healthy adolescents; and evaluate the predictive value of certain demographic, family-related, and disease-related factors on self-esteem. Methods: A total of 148 chronically ill adolescents and 301 matched healthy counterparts completed the Rosenberg Self Esteem Scale and the "I think I am" questionnaire. Adolescents' parents answere...

  3. Patient Experience of Chronic Illness Care and Medical Home Transformation in Safety Net Clinics.

    Science.gov (United States)

    Tung, Elizabeth L; Gao, Yue; Peek, Monica E; Nocon, Robert S; Gunter, Kathryn E; Lee, Sang Mee; Chin, Marshall H

    2018-02-01

    To examine the relationship between medical home transformation and patient experience of chronic illness care. Thirteen safety net clinics located in five states enrolled in the Safety Net Medical Home Initiative. Repeated cross-sectional surveys of randomly selected adult patients were completed at baseline (n = 303) and postintervention (n = 271). Questions from the Patient Assessment of Chronic Illness Care (PACIC) (100-point scale) were used to capture patient experience of chronic illness care. Generalized estimating equation methods were used to (i) estimate how differential improvement in patient-centered medical home (PCMH) capability affected differences in modified PACIC scores between baseline and postintervention, and (ii) to examine cross-sectional associations between PCMH capability and modified PACIC scores for patients at completion of the intervention. In adjusted analyses, high PCMH improvement (above median) was only marginally associated with a larger increase in total modified PACIC score (adjusted β = 7.7, 95 percent confidence interval [CI]: -1.1 to 16.5). At completion of the intervention, a 10-point higher PCMH capability score was associated with an 8.9-point higher total modified PACIC score (95 percent CI: 3.1-14.7) and higher scores in four of five subdomains (patient activation, delivery system design, contextual care, and follow-up/coordination). We report that sustained, 5-year medical home transformation may be associated with modest improvement in patient experience of chronic illness care for vulnerable populations in safety net clinics. © Health Research and Educational Trust.

  4. An evaluation of a positive youth development program for adolescents with chronic illness.

    Science.gov (United States)

    Maslow, Gary; Adams, Cathleen; Willis, Matthew; Neukirch, Jodie; Herts, Kate; Froehlich, Wendy; Calleson, Diane; Rickerby, Michelle

    2013-02-01

    Youth with chronic illness often struggle transitioning to adulthood and adult medical care. This article examines the outcomes of a group mentoring program called The Adolescent Leadership Council (TALC) that brings together high school participants and college mentors, all with chronic illness. TALC uses a positive youth development (PYD) approach, emphasizing strong relationships between youth and adults in an environment where youth can learn important life skills and take a leadership role. A pre-/postprogram participant survey was conducted for high school participants using a loneliness scale and a transition readiness survey. An alumni survey was conducted with all high school and college mentor graduates to assess educational-, vocational-, and health care-related outcomes. Program records review and the alumni survey indicated that TALC was consistent with the PYD program model. Twenty high school students participated in the pre-/postprogram outcomes evaluation, which demonstrated a decrease in loneliness from 46 to 38.5 (p < .001) and an increase in health care self-advocacy from 3.8 to 4.2 (p < .001). Thirty-four alumni participated in the alumni survey. All high school and college mentor alumni had graduated from high school and college, respectively, and all were either currently in school or working. The majority of alumni were seeing adult providers for medical care. The TALC program applies the principles of PYD to support positive educational, vocational, and health care outcomes for youth with chronic illness. Program development using the PYD perspective is an important new approach for supporting adult development of youth with chronic illness. Copyright © 2013 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

  5. Psychological interventions for parents of children and adolescents with chronic illness

    OpenAIRE

    Eccleston, Chris; Palermo, T M; Fisher, Emma; Law, E

    2012-01-01

    Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. To evaluate the effectiveness of psychological therapies that include coping strategies for...

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

    Science.gov (United States)

    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.

  7. Correlates of Problem Resolution during Parent-Child Discussions about Chronic Illness Management

    Science.gov (United States)

    Friedrich, Elizabeth; Jawad, Abbas F.; Miller, Victoria A.

    2016-01-01

    Families impacted by pediatric chronic illness must navigate treatment regimens that can present multiple problems and decisions to be addressed on a daily basis. The extent to which parents and children are able to solve such problems is likely to have implications for health behaviors and outcomes. The aims of this study were to examine correlates of problem resolution in families of children with a chronic illness. Participants were 167 children (ages 8-16) with type 1 diabetes or cystic fibrosis and a parent. Parent-child dyads recounted a recent discussion they had related to illness management and completed questionnaires. The research team coded the discussions for topic and outcome (i.e., did the dyad come up with a plan to address the problem). The results indicated that the majority of dyads in both illness groups came up with a plan during their discussions. Lack of problem resolution during the discussion was associated with higher parent coercion, more child resistance to the regimen, and worse adherence. Parent coercion and child resistance could be the targets of interventions to enhance problem solving and improve adherence. PMID:28133408

  8. Personal growth in chronic illness - a biographical case study of living with fibromyalgia.

    Science.gov (United States)

    Kalitzkus, Vera; Matthiessen, Peter F

    2010-01-01

    Chronic illness can be distressing for patients. It confronts them with the challenge of having to cope with their life and of having to adjust their self-image. Nevertheless, patients often experience that they go through a process of personal growth. Although there is empirical proof of the potential that coping with severe illness has with regard to personal growth, fairly little is known about the conditions that bring about such a development. Based on a singlecase study of fibromyalgia (FM) from Germany, the paper reveals the potential of a biographical approach for understanding the process of personal growth in chronic illness. The case is part of a qualitative study on the occurrence of biographical transformation in severe illnesses. A narrative, biographical interview was conducted with the patient. The analysis takes objective biographical data as well as the subjective experience of the patient into account. Our analysis is confirmed by qualitative studies on the subjective experience of FM. Although these studies report a favorable development with some FM sufferers, they neither investigate its significance for the life of the patient nor the factors that make personal growth possible. We tried to identify biographical resources and personal strategies of the patient that facilitated her inner growth. A biographical approach is a way towards understanding individual growth in the face of severe suffering. By including the patients' objective life data as well as their subjective experiences, deeper insights into the process of personal growth can be gained. Copyright 2010 S. Karger AG, Basel.

  9. [Perception in chronic illnesses: linguistic validation of the revised Illness Perception Questionnaire and the Brief Illness Perception Questionnaire for a Spanish population].

    Science.gov (United States)

    Pacheco-Huergo, Valeria; Viladrich, Carme; Pujol-Ribera, Enriqueta; Cabezas-Peña, Carmen; Núñez, Montserrat; Roura-Olmeda, Pilar; Amado-Guirado, Ester; Núñez, Esther; Del Val, José Luis

    2012-05-01

    To obtain adapted versions for the Spanish population of a specific version of the Revised Illness Perception Questionnaire Revised (IPQ-R(e)) and the Brief Illness Perception Questionnaire (BIPQ), conceptually and linguistically equivalent to the original questionnaires. Cultural adaptation of questionnaires: linguistic validation. Five primary care centres and a tertiary hospital. A multidisciplinary team was selected. A pilot study was performed on 30 people with chronic diseases (hypertension, diabetes mellitus, stable ischaemic heart disease, asthma, chronic obstructive pulmonary disease or osteoarthritis) The project proceeded in 3 phases: I) Double forward-translation, II) Pilot study and III) Double back-translation. Three consensus meetings were held, one in each phase. Another meeting was held with one of the authors of the original questionnaire, where we knew about a short version, the BIPQ. It was also included in the study. Double forward and back-translations were performed and consensus was reached in both stages. Phase I) The majority of IPQ-R(e) items did not raise problems of translation. Phase II) In the pilot study we detected that patients found some difficulties in connection with the comprehension and self administration of some items. Therefore it was decided to employ trained interviewers, to introduce changes in the IPQ-R(e) format and vocabulary and to adapt a specific version with fewer items that solved most of these difficulties Phase III) Back-translations were very similar to the original version. The BIPQ forward and back-translation process caused no difficulties. After lingüistic validation, IPQ-R(e) and BIPQ versions conceptually and lingüistically equivalent to original instruments were obtained. Copyright © 2010 Elsevier España, S.L. All rights reserved.

  10. Continuity in care trajectories of older chronically ill patients in a battlefield of competing rationales.

    Science.gov (United States)

    Kjerholt, Mette; Wagner, Lis; Delmar, Charlotte; Clemensen, Jane; Lindhardt, Tove

    2014-12-01

    Continuity is crucial when caring for older chronically ill patients. Research has shown that the integration of patients' own perspectives on their situation is of utmost importance for continuity and quality of care. Studies have, however, demonstrated a number of problems with health professionals' communication concerning older patients, leading to lack of continuity and integration of the patient perspective in care and treatment. In spite of these problems being well investigated, they continue to prevail. To examine conditions for continuity and integration of the patient perspective in older, chronically ill patients' care as reflected in nursing staff's communication about the patients. Explorative Participatory Action Research (PAR). An acute, general medical ward at a Danish university hospital. Hospital and municipality nurses (n = 29). Nursing records (n = 12). Field studies: observations, interviews, nursing records audits and logs. Data were subject to manifest and latent content analysis. Participants were aware of the importance of ensuring continuity, a comprehensive approach and integration of the patient perspective in care trajectories of older, chronically ill patients. Although they adhered to these ideals, they rarely pursued them in practice. Hindering factors were: organisational values, episodic focus on patients and lack of time. They felt caught in a value conflict between nursing professional values and system values, which caused a feeling of powerlessness, maintaining status quo in their clinical practice. The prevailing episodic focus and the competing rationales on the ward constituted a barrier to continuity and integration of the patient perspective in a comprehensive way. © 2013 Blackwell Publishing Ltd.

  11. The articulation of neoliberalism: narratives of experience of chronic illness management in Bulgaria and the UK.

    Science.gov (United States)

    Vassilev, Ivaylo; Rogers, Anne; Todorova, Elka; Kennedy, Anne; Roukova, Poli

    2017-03-01

    The shift from social democratic to a neoliberal consensus in modern welfare capitalist states is characterised by an emphasis on individual responsibility, consumer choice, market rationality and growing social inequalities. There has been little exploration of how neoliberalism has shaped the environment within which chronic illness is experienced and managed. This article explores the different articulations of neoliberalism manifest in the arena of personal illness management in Bulgaria and the UK. People with type 2 diabetes discussed their experiences in terms of struggling with diet, diabetes as a personal failure, integrating illness management and valued activities, and the trustworthiness of the healthcare system. The UK narratives were framed within an individual responsibility discourse while in Bulgaria lack of resources dominated discussions, which were framed as structurally generated and unrelated to individual capabilities and choices. Respondents faced personal management challenges related to consumer and healthcare market failures in both countries. Differences in market regulation and emerging stakeholder and interest coalitions influenced users' expectations and their navigation and adaption to market failures in managing their everyday illnesses. The UK and Bulgarian articulations of neoliberalism can be described differently: the first as a logic of managed choice and the second as a logic of unmanaged consumerism. © 2016 Foundation for the Sociology of Health & Illness.

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

    Science.gov (United States)

    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

  13. Mind's response to the body's betrayal: Gestalt/Existential therapy for clients with chronic or life-threatening illnesses.

    Science.gov (United States)

    Imes, Suzanne A; Clance, Pauline Rose; Gailis, Andra T; Atkeson, Ellen

    2002-11-01

    In the literature on chronic or life-threatening illness, there is an overriding emphasis on clients' psychological coping styles and how they relate to psychological functioning. By contrast, in our approach, we look at the subjective mind/body experiences that clients have of their illness and how their lives are impacted by their illness. As psychotherapists, we address their existential distress, pain, body experience, thoughts, and feelings, as well as their efforts to cope or find meaning in their illness. We summarize Gestalt/Existential therapy for chronic illness, illustrate the approach with three case-vignettes, and stress the importance of attending to each client's unique responses to illness. Copyright 2002 Wiley Periodicals, Inc.

  14. [Social and organizational innovation to tackle the challenge of integrated care of the chronically ill].

    Science.gov (United States)

    Nuño-Solinís, Roberto

    2014-01-01

    The increase in life expectancy, coupled with other factors, has led to an increase in the prevalence of chronic diseases and multiple morbidity. This has led to the need to develop new health and social care models, which will allow managing these efficiently and in a sustainable manner. In particular, there seems to be consensus on the need to move towards integrated, patient-centered, and more proactive care. Thus, in recent years, chronic care models have been developed at international, national and regional level, as well as introducing strategies to tackle the challenge of chronic illness. However, the implementation of actions facilitating the change towards this new model of care does not seem to be an easy task. This paper presents some of the strategic lines and initiatives carried out by the Department of Health of the Basque Government. These actions can be described within a social and organizational innovation framework, as a means for effective implementation of interventions and strategies that shape the model required for the improved care of chronic illnesses within a universal and tax-funded health system. Copyright © 2013 Elsevier España, S.L. All rights reserved.

  15. Body image of children and adolescents with chronic illness: a meta-analytic comparison with healthy peers.

    Science.gov (United States)

    Pinquart, M

    2013-03-01

    This meta-analysis integrates results from 330 studies on differences between body image of children and adolescents with and without chronic physical illness. Young people with a chronic illness had a less positive body image than their healthy peers although the average size of differences was small (g=-.30 standard deviation units). A comparison of diseases showed that young people with obesity (g=-.79), cystic fibrosis (g=-.50), scoliosis (g=-.41), asthma (g=-.37), growth hormone deficits (g=-.35), spina bifida (g=-.23), cancer (g=-.20), and diabetes (g=-.17) evaluated their body less positively than their healthy peers. Furthermore, levels of body dissatisfaction varied by age at onset of the disease, method for assessing body image, ethnicity, year of publication, and comparison group. Recommendations are stated for reducing effects of chronic illness on the body image of people with chronic illness. Copyright © 2012 Elsevier Ltd. All rights reserved.

  16. Communication and cybercoping: coping with chronic illness through communicative action in online support networks.

    Science.gov (United States)

    Kim, Jeong-Nam; Lee, Seungyoon

    2014-01-01

    Computer-mediated communication, specifically blogs, has expanded the range of the communicative action of patients with chronic disease from information seeking to information forwarding. The authors examine the effects of these 2 types of communicative action on perceived affective and physical coping outcomes. Using a survey dataset of 254 chronic disease patients, the authors tested 2 models using structural equation modeling: first, the effects of communicative action about chronic illness on coping outcomes; and second, the mediating role of emotion-focused and problem-focused coping processes. Findings indicate overall positive effects of communicative action on coping processes and outcomes, yet with different magnitudes of effects depending on the dimensions of communication behavior, the coping process, and outcome. Implications for patients and health care providers are discussed.

  17. Providing healthcare for people with chronic illness: the views of Australian GPs.

    Science.gov (United States)

    Oldroyd, John; Proudfoot, Judith; Infante, Fernando A; Powell Davies, Gawaine; Bubner, Tanya; Holton, Chris; Beilby, Justin J; Harris, Mark F

    2003-07-07

    To explore general practitioners' views on chronic-disease care: the difficulties and rewards, the needs of patients, the impact of government incentive payments, and the changes needed to improve chronic-disease management. Qualitative study, involving semi-structured questions administered to 10 focus groups of GPs, conducted from April to October 2002. 54 GPs from both urban and rural practices in New South Wales and South Australia. Consistent themes emerged about the complex nature of chronic-disease management, the tension between patients' and GPs' goals for care, the time-consuming aspects of care (exacerbated by federal government requirements), and the conflicting pressures that prevent GPs engaging in structured multidisciplinary care (ie, team-based care involving systems for patient monitoring, recall, and care planning). Structured multidisciplinary care for people with chronic conditions can be difficult to provide. Barriers include the lack of fit between systems oriented towards acute care and the requirements of chronic-disease care, and between bureaucratic, inflexible structures and the complex, dynamic nature of GP-patient relationships. These problems are exacerbated by administrative pressures associated with federal government initiatives to improve chronic-illness management. Changes are needed in both policies and attitudes to enable GPs to move from episodic care to providing structured long-term care as part of a multidisciplinary team.

  18. Evaluating the Illness Perception Questionnaire on patients with chronic kidney disease in Sweden.

    Science.gov (United States)

    Pagels, Agneta; Söderquist, Birgitta Klang; Heiwe, Susanne

    2012-09-01

    The Revised Illness Perception Questionnaire (IPQ-R) measures illness perception according to the Common Sense Model of Self-Regulation. Illness perception relates to coping, health management, treatment outcomes and health-related quality of life. IPQ-R has been used in many contexts. However, there is yet no Swedish version evaluated for validity, reliability and usability in the context of a Swedish, adult population with Chronic Kidney Disease (CKD). To evaluate usability and psychometric properties of a Swedish translation of IPQ-R on a group of adults in different stages of CKD. Usability evaluation was carried out through cognitive interviews and psychometrics was assessed by internal consistency, test-retest, inter-correlations, correlations to health-related quality of life and coping and testing for concurrent validity. Content validity was strongly supported, but an uncertainty assessing symptoms attributed to CKD was indicated. All dimensions showed internal consistency, except the treatment control dimension. The IPQ-R showed good stability over time except the personal control dimension. Most IPQ-R dimensions distinguished illness representations between groups of different disease stages and symptom burden. The most supported IPQ-R dimensions for inter-correlations and convergent validity were identity, timeline cyclical, consequences and emotional representations. The evaluation of the Swedish version of IPQ-R on patients with CKD showed support for construct validity, except for the dimensions controllability, illness coherence and timeline, which were less supported. These dimensions should therefore be interpreted with care in CKD patients. There is a need to capture uncertainty regarding illness identity. IPQ-R should be interpreted with care in earlier stages of CKD or if few symptoms are reported. IPQ-R may be applicable and useful as a tool in nursing practice to support healthy behaviour as well as assessing clinical interventions in

  19. A questionnaire to evaluate the impact of chronic diseases: validated translation and Illness Effects Questionnaire (IEQ reliability study

    Directory of Open Access Journals (Sweden)

    Patrícia Pinto Fonseca

    2012-01-01

    Full Text Available INTRODUCTION: Patients' perception about their health condition, mainly involving chronic diseases, has been investigated in many studies and it has been associated to depression, compliance with the treatment, quality of life and prognosis. The Illness Effects Questionnaire (IEQ is a tool which makes the standardized evaluation of patients' perception about their illness possible, so that it is brief and accessible to the different clinical settings. This work aims to begin the transcultural adaptation of the IEQ to Brazil through the validated translation and the reliability study. METHODS: The back-translation method and the test-retest reliability study were used in a sample of 30 adult patients under chronic hemodialysis. The reliability indexes were estimated using the Pearson, Spearman, Weighted Kappa and Cronbach's alpha coefficients. RESULTS: The semantic equivalence was reached through the validated translation. In this study, the reliability indexes obtained were respectively: 0.85 and 0.75 (p < 0.001; 0.68 and 0.92 (p < 0.0001. DISCUSSION: The reliability indexes obtained attest to the stability of responses in both evaluations. Additional procedures are necessary for the transcultural adaptation of the IEQ to be complete. CONCLUSION: The results indicate the translation validity and the reliability of the Brazilian version of the IEQ for the sample studied.

  20. Personality variables in coping with the stress of a spouse's chronic illness.

    Science.gov (United States)

    Schoeneman, S Z; Reznikoff, M; Bacon, S J

    1983-05-01

    Identified systematically those spouses of male VA hemodialysis patients who are at risk for experiencing difficulties in adapting to their husband's chronic kidney failure and hemodialysis treatment. To this end, an exploration was made of personality variables that might enhance a spouse's ability to cope with the unique stress of living with chronic illness. Fifty-six wives of VA dialysis patients were administered the Rotter Internal-External Locus of Control Scale (I-E), the Multidimensional Locus of Control Scale (MLC), the Multidimensional Health Locus of Control Scale (MHLC), the State-Trait Anxiety Inventory (STAI), and the Beck Depression Inventory (BDI). Significant relationships were found between I-E scores and all measures of emotional adjustment (state anxiety, trait anxiety, and depression) for the entire sample of spouses in general, and also for a subgroup of home dialysis spouses who were analyzed separately. Results were discussed in terms of the role that locus of control orientation plays in mediating the stress of living with chronic illness, as well as the failure to find relationships between adjustment and the MLC or the area-specific MHLC.

  1. Health-related financial catastrophe, inequality and chronic illness in Bangladesh.

    Directory of Open Access Journals (Sweden)

    Md Mizanur Rahman

    Full Text Available BACKGROUND: Bangladesh has a high proportion of households incurring catastrophic health expenditure, and very limited risk sharing mechanisms. Identifying determinants of out-of-pocket (OOP payments and catastrophic health expenditure may reveal opportunities to reduce costs and protect households from financial risk. OBJECTIVE: This study investigates the determinants of high healthcare expenditure and healthcare- related financial catastrophe. METHODS: A cross-sectional household survey was conducted in Rajshahi city, Bangladesh, in 2011. Catastrophic health expenditure was estimated separately based on capacity to pay and proportion of non-food expenditure. Determinants of OOP payments and financial catastrophe were estimated using double hurdle and Poisson regression models respectively. RESULTS: On average households spent 11% of their total budgets on health, half the residents spent 7% of the monthly per capita consumption expenditure for one illness, and nearly 9% of households faced financial catastrophe. The poorest households spent less on health but had a four times higher risk of catastrophe than the richest households. The risk of financial catastrophe and the level of OOP payments were higher for users of inpatient, outpatient public and private facilities respectively compared to using self-medication or traditional healers. Other determinants of OOP payments and catastrophic expenses were economic status, presence of chronic illness in the household, and illness among children and adults. CONCLUSION: Households that received inpatient or outpatient private care experienced the highest burden of health expenditure. The poorest members of the community also face large, often catastrophic expenses. Chronic illness management is crucial to reducing the total burden of disease in a household and its associated increased risk of level of OOP payments and catastrophic expenses. Households can only be protected from these situations by

  2. Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time

    Directory of Open Access Journals (Sweden)

    Nimmon L

    2018-03-01

    Full Text Available Laura Nimmon,1,2 Joanna Bates,1,3 Gil Kimel,4,5 Lorelei Lingard6 On behalf of the Heart Failure/Palliative Care Teamwork Research Group 1Centre for Health Education Scholarship, 2Department of Occupational Science and Occupational Therapy, 3Department of Family Practice, Faculty of Medicine, University of British Columbia, 4Palliative Care Program, St Paul’s Hospital, 5Department of Medicine, Division of Internal Medicine, University of British Columbia, Vancouver, BC, 6Centre for Education Research and Innovation, Department of Medicine, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada Background: Informal caregivers play a vital role in supporting patients with heart failure (HF. However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care. Materials and methods: From a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient–partner couples (26 participants. The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness. Results: The analysis highlighted the profound enmeshment of the couples. The couples’ interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other’s changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state. Conclusion: We conclude that the salience of this couple group’s oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care. Keywords

  3. Hospital-to-School Transition for Children with Chronic Illness: Meeting the New Challenges of an Evolving Health Care System

    Science.gov (United States)

    Shaw, Steven R.; McCabe, Paul C.

    2007-01-01

    Chronic illness is common and has a profound impact on the education of affected children. A variety of approaches and programs to facilitate the transition from hospital to school for children with chronic health problems has been described in the literature. Traditional transition plans may no longer be effective because medical service delivery…

  4. Patient-perceived self-management tasks and support needs of people with chronic illness: generic or disease specific?

    NARCIS (Netherlands)

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

    2015-01-01

    Background: Self-management is widely accepted as an essential component of chronic care. Nevertheless, little is known about patients’ perceptions of self-management. Purpose: This study aims to explore which self-management tasks and support needs people with chronic illness perceive for

  5. Family reinforcement of illness behavior: a comparison of adolescents with chronic fatigue syndrome, juvenile arthritis, and healthy controls.

    Science.gov (United States)

    Brace, M J; Scott Smith, M; McCauley, E; Sherry, D D

    2000-10-01

    Parental encouragement of illness behavior is hypothesized to correlate with psychosocial dysfunction in adolescents with chronic illness. To explore this hypothesis, adolescents aged 11 to 17 years with chronic fatigue syndrome (CFS) (n = 10), juvenile rheumatoid arthritis (JRA) (n = 16), and healthy adolescents (n = 14) were recruited for the study. Measures included the Achenbach parent and youth self report forms, the Family Adaptability and Cohesion Evaluation Scale-II (FACES II), the Children's Depression Rating Scale, and number of days absent from school. The Illness Behavior Encouragement Scale (IBES) generated measures of parental reinforcement of illness behavior. As predicted, the teens with CFS scored statistically higher on measures of depression, total competence, and number of days of school missed in the previous 6 months (mean = 40). Children with JRA scored significantly lower than the CFS group on the measure of parental reinforcement of illness behavior. The healthy group produced intermediate scores. Results and implications for future clinical and research activity are discussed.

  6. Shamanism: Indications and Use by Older Hmong Americans with Chronic Illness

    Directory of Open Access Journals (Sweden)

    Linda A. Gerdner

    2012-01-01

    Full Text Available This article reports qualitative interviews from an ethnographic study that explored in part, the health seeking behaviors of and for older Hmong Americans with chronic illness. The study occurred over a 36-month period in the St. Paul / Minneapolis area of Minnesota. The majority of interviews were conducted in the Hmong language and lasted approximately three hours. Participants included 35 older Hmong Americans living independently with chronic illness. Themajority of these older adults were female (n=25, 80% with a mean age of 78.43 years. Interviews also included 33 family members (n=25 female,75.75% with a mean age of 75.75 years, who provided a minimum of eight hours of in-home care for an older Hmong American with chronic illness. Due to the significant role of shamans in the spiritual well-being of older adults, three shamans (two male, and one female were also interviewed. All (mean age 83, range65-99 had been “chosen” to become a shaman while living in Laos and had resided in the United States an average of 4 years 5 months (range: 1 month to 13 years. All shamans reported havingan active practice, with comments such as “I have so many [patients] I do not count.” More specifically, one shaman stated that he performed 20 to 40 healing ceremonies per year. One shaman explained his role by stating “I heal the weak and the lost spirit.” The majority of older Hmong Americans (74.29% and family caregivers (57.58 had retained the spiritual beliefs of animism and ancestor worship. Findings report that 18 (51.43% older Hmong Americanscompared to 21 (63.3% family caregivers sought the services of both a physician and a shaman for treatment of the older person’s chronic illness. Fourteen (40% older Hmong Americans compared to ten (30.30% family caregivers sought the services of a physician alone. Only 3 (8.57% older Hmong Americans compared to 2 (6.06% caregivers consulted the services of a shaman alone. Many older adults and

  7. Building a new life: a chaplain's theory based case study of chronic illness.

    Science.gov (United States)

    Risk, James L

    2013-01-01

    This article presents the case study of spiritual care for a patient suffering from Parkinson's disease who was referred to the chaplain in an out-patient depression research program. The chaplain's interventions were informed by an application of narrative theory, and the article demonstrates how this theory enabled the chaplain to help a patient develop new coping strategies for dealing with chronic disease. Using narrative theory, the chaplain assisted the patient to develop a new sense of identity as a spiritual, contingent self as the disease eroded his physical self and former life. The article includes a description of a patient's spiritual needs, chaplain interventions, and an outcomes measure of those interventions. The author argues that narrative theory provides chaplains with a language to identify and craft the unique intervention that spiritual care has in the life trajectory of this Parkinson's patient and other patients dealing with chronic illnesses.

  8. Sidney Katz, MD: a new paradigm for chronic illness and long-term care.

    Science.gov (United States)

    Noelker, Linda S; Browdie, Richard

    2014-02-01

    Dr. Sidney Katz's legacy to the field of gerontology is internationally recognized as his success at developing standardized measures and processes, beginning with the activities of daily living index, for the functional assessment of older adults with chronic conditions necessitating long-term services and supports. That work served as the bedrock for his subsequent major accomplishments, which improved rehabilitation services through interdisciplinary team work and attention to the patient-family constellation; reformed the regulation of nursing homes, refocusing it on resident outcomes and quality of life; and promulgated the concept of active life expectancy as a new approach to measuring the quality of later life. Few other scholars and researchers in the history of the field of aging can claim one, much less multiple monumental contributions leading to major advances in the treatment of chronic illness and the quality of long-term care.

  9. Secondary Traumatic Stress and Burnout Among Muslim Nurses Caring for Chronically Ill Children in a Turkish Hospital.

    Science.gov (United States)

    Günüşen, Neslihan Partlak; Wilson, Marian; Aksoy, Burcu

    2018-03-01

    This study investigated secondary traumatic stress and its relationship to burnout among nurses working at a Turkish hospital. A mixed-methods design included a cross-sectional survey administering the Professional Quality of Life instrument and Maslach Burnout Inventory to 106 nurses. Interviews with a subgroup of eight participants explored nurses' experiences and coping strategies related to caring for chronically ill pediatric patients. High risk levels of secondary traumatic stress existed among 40.6% participants, and those over the age of 40 years were at greater risk. Two main interview themes emerged that identified (a) consequences and (b) coping strategies while caring for chronically ill children. Nurses experience emotional burdens and may purposefully distance themselves from chronically ill children. Social support from nurse colleagues and spiritual beliefs assist coping. Workplaces should acknowledge stressors inherent in chronic pediatric nursing care. Environments that welcome spiritual practices and actively encourage social support could address job hazards.

  10. Reliability and validity of a Thai version of assessment of chronic illness care (ACIC).

    Science.gov (United States)

    Gomutbutra, Patama; Aramrat, Apinun; Sattapansri, Worapoj; Chutima, Siam; Tooprakai, Dusida; Sakarinkul, Pokin; Sangkhasilapin, Yaowapa

    2012-08-01

    The Assessment Chronic Illness Care (ACIC), developed in the United States, is a quality-improvement tool used to help organization evaluate the strengths and weaknesses of their delivery of care for chronic illness in six areas, community linkages, self-management support, decision support, delivery system design, information systems, and organization of care. These areas of care are influenced by the Chronic Care Model. The questionnaire scale ranges from 0 to 11. Translate in Thai language and validate the ACIC as a practical tool to measure the quality of chronic illness care in Thailand. In a cross-sectional study, the content validity was examined by public health experts. The original ACIC was translated into Thai with permission from The MacColl Institute for Healthcare Innovation at Group Health's Center for Health Studies. The translation process followed the World Health Organization (WHO) process of translation and adaptation of instruments, including forward translation, expert panel and synthesis of the translation, back translation, pre-testing, and cognitive interviewing. The pre-testing was done by distributing the questionnaire to a sample of 12 organizations with cognitive interviewing, followed by revision and finalization of the questionnaire. The reliability and validity of the translated version was then examined by distributing the questionnaire to 172 organizations (84 district hospitals and 88 community health center primary care units within the upper northern part of Thailand)focusing on care of cerebrovascular disease. The response rate was approximately 70% or 120 organizations. The results from these organizations 'self-assessment showed that the Thai version of ACIC achieved good levels of reliability and validity, with the range of Cronbach's alpha coefficients being 0.846 to 0.972 in each aspect of ACIC. However ACIC inablility to detect statistical significant difference in score for each dimension though the self

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

    Directory of Open Access Journals (Sweden)

    Jacobs RJ

    2017-04-01

    Full Text Available Robin J Jacobs,1 Raymond L Ownby,2 Amarilis Acevedo,3 Drenna Waldrop-Valverde4 1Department of Family and Community Medicine, Baylor College of Medicine, Houston, TX, 2College of Osteopathic Medicine, 3College of Psychology, Nova Southeastern University, Fort Lauderdale, FL, 4Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA, USA 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. Keywords: health disparities, older adults, resilience, computer interventions, comorbidity, multimorbidity

  12. Development of a measure of the impact of chronic parental illness on adolescent and adult children. The parental illness impact scale (Parkinson's disease).

    Science.gov (United States)

    Schrag, Anette; Morley, David; Quinn, Niall; Jahanshahi, Marjan

    2004-10-01

    Although chronic illness is likely to affect the well-being of patients' children, no assessment tools are currently available to measure this impact of parental illness. We therefore developed such an instrument based on interviews with children of patients with Parkinson's disease (PD). This questionnaire and other measures of psychological well-being were completed by 89 children, aged 12-48, years of patients with PD. Factor analysis revealed six domains with 38 questions. These six domains of the 'Parental Illness Impact Scale (Parkinson's disease)' or PIIS (PD) had satisfactory internal consistency and validity. Its six sub-scales correlated significantly and differentially with corresponding measures, including the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48; r = -0.2 to 0.85), the Beck Depression Inventory (r = -0.07 to -0.40) or Birleson Depression Self-Rating Scale (r = 0.04 to -0.62), and the Rosenberg Self-Esteem Scale (r = -0.01 to 0.33) as well as age (r = -0.37 to 0.28) and parent's disease duration (r = -0.31 to 0.34). The PIIS is the first instrument to assess the impact of parental illness on children. Its psychometric properties should be tested further in larger samples, including children of patients with other chronic disorders such as multiple sclerosis or chronic heart disease.

  13. Development and Validation of an Instrument for Assessing Patient Experience of Chronic Illness Care

    Directory of Open Access Journals (Sweden)

    José Joaquín Mira

    2016-08-01

    Full Text Available Introduction: The experience of chronic patients with the care they receive, fuelled by the focus on patient-centeredness and the increasing evidence on its positive relation with other dimensions of quality, is being acknowledged as a key element in improving the quality of care. There are a dearth of accepted tools and metrics to assess patient experience from the patient’s perspective that have been adapted to the new chronic care context: continued, systemic, with multidisciplinary teams and new technologies. Methods: Development and validation of a scale conducting a literature review, expert panel, pilot and field studies with 356 chronic primary care patients, to assess content and face validities and reliability. Results: IEXPAC is an 11+1 item scale with adequate metric properties measured by Alpha Chronbach, Goodness of fit index, and satisfactory convergence validity around three factors named: productive interactions, new relational model and person’s self-management. Conclusions: IEXPAC allows measurement of the patient experience of chronic illness care. Together with other indicators, IEXPAC can determine the quality of care provided according to the Triple Aim framework, facilitating health systems reorientation towards integrated patient-centred care.

  14. Low knowledge of physical health behaviours is associated with poor diet and chronic illness in adults.

    Science.gov (United States)

    Stanton, Robert; Scott, David; Happell, Brenda

    2016-01-01

    Governments invest heavily in health promotion strategies to improve physical health behaviours. However, the dietary and physical activity practices of many Australians fail to meet minimum levels for health, leading to the unacceptably high prevalence of chronic and complex illness. Health literacy is known to impact on health behaviour, and to be related to health knowledge; however, no studies have specifically examined knowledge of physical health behaviours in an Australian context. We assessed knowledge of physical health behaviours in 1244 adults in Queensland, Australia. Almost two-thirds of respondents had a 'Good' knowledge of physical health behaviour. People with 'Good' knowledge of physical health behaviours were more likely to be female, educated beyond secondary school, be employed and have an annual household income of >$52000 (Pphysical health behaviours were significantly more likely to report insufficient intake of vegetables and have at least one chronic illness (Passociation with low knowledge of physical health behaviours. Given the association between health knowledge and health literacy, assessment of the knowledge of physical health behaviours may provide considerable insight into the effectiveness of future health promotion interventions.

  15. Translation and adaptation of "Perception of Severity of Chronic Illness" to the Brazilian culture for adolescents.

    Science.gov (United States)

    Lopes, Isabel de Moraes; Apolinario, Priscila Peruzzo; Lima, Maria Helena de Melo

    2017-05-29

    To translate, adapt, and evaluate the applicability of the "Perception of Severity of Chronic Illness" questionnaire to the Brazilian culture for diabetic adolescents. This is a methodological study consisting of the stages of translation, synthesis of translations, back translation, review by an expert committee, and pre-test. The expert judges evaluated semantic, idiomatic, conceptual, and cultural equivalences. The judges' concordance was quantified using the Content Validity Index. The translation and back translation were performed successfully. After the synthesised translation was reviewed by the committee, the items were altered to ensure equivalence between the original and translated instrument. After the pre-test, some statements were reformulated to make them clearer and easier to understand. The preliminary data of the instrument's reliability calculated using Cronbach's alpha was 0.66. The Brazilian version of the instrument Perception of Severity of Chronic Illness proved satisfactory in terms of the translation, cultural adaptation, and practicality, and it was considered an easily applicable and viable tool for clinical practice.

  16. Theory of planned behavior and adherence in chronic illness: a meta-analysis.

    Science.gov (United States)

    Rich, Antonia; Brandes, Kim; Mullan, Barbara; Hagger, Martin S

    2015-08-01

    Social-cognitive models such as the theory of planned behavior have demonstrated efficacy in predicting behavior, but few studies have examined the theory as a predictor of treatment adherence in chronic illness. We tested the efficacy of the theory for predicting adherence to treatment in chronic illness across multiple studies. A database search identified 27 studies, meeting inclusion criteria. Averaged intercorrelations among theory variables were computed corrected for sampling error using random-effects meta-analysis. Path-analysis using the meta-analytically derived correlations was used to test theory hypotheses and effects of moderators. The theory explained 33 and 9 % of the variance in intention and adherence behavior respectively. Theoretically consistent patterns of effects among the attitude, subjective norm, perceived behavioral control, intention and behavior constructs were found with small-to-medium effect sizes. Effect sizes were invariant across behavior and measurement type. Although results support theory predictions, effect sizes were small, particularly for the intention-behavior relationship.

  17. Persistent Delirium in Chronic Critical Illness as a Prodrome Syndrome before Death.

    Science.gov (United States)

    DeForest, Anna; Blinderman, Craig D

    2017-05-01

    Chronic critical illness (CCI) patients have poor functional outcomes, high risk of mortality, and significant sequelae, including delirium and cognitive dysfunction. The prognostic significance of persistent delirium in patients with CCI has not been well described. We report a case of a patient with CCI following major cardiac surgery who was hemodynamically stable following a long course in the cardiothoracic intensive care unit (CTICU), but had persistent and unremitting delirium. Despite both pharmacological and nonpharmacological approaches to improve his delirium, the patient ultimately continued to have symptoms of delirium and subsequently died in the CTICU. Efforts to reconsider the goals of care, given his family's understanding of his values, were met with resistance as his cardiothoracic surgeon believed that he had a reasonable chance of recovery since his organs were not in failure. This case description raises the question of whether we should consider persistent delirium as a prodrome syndrome before death in patients with CCI. Study and analysis of a case of a patient with CCI following major cardiothoracic surgery who was hemodynamically stable with persistent delirium. Further studies of the prevalence and outcomes of prolonged or persistent agitated delirium in patients with chronic critical illness are needed to provide prognostic information that can assist patients and families in receiving care that accords with their goals and values.

  18. Psychosocial well-being in young adults with chronic illness since childhood: the role of illness cognitions

    NARCIS (Netherlands)

    Verhoof, Eefje J. A.; Maurice-Stam, Heleen; Heymans, Hugo S. A.; Evers, Andrea W. M.; Grootenhuis, Martha A.

    2014-01-01

    Background: More and more pediatric patients reach adulthood. Some of them are successfully integrating in adult life, but many others are not. Possibly Illness cognitions (IC) - the way people give meaning to their illness/disability - may play a role in individual differences on long-term

  19. Chronic illness and multimorbidity among problem drug users: a comparative cross sectional pilot study in primary care.

    LENUS (Irish Health Repository)

    Cullen, Walter

    2012-02-01

    BACKGROUND: Although multimorbidity has important implications for patient care in general practice, limited research has examined chronic illness and health service utilisation among problem drug users. This study aimed to determine chronic illness prevalence and health service utilisation among problem drug users attending primary care for methadone treatment, to compare these rates with matched \\'controls\\' and to develop and pilot test a valid study instrument. METHODS: A cross-sectional study of patients attending three large urban general practices in Dublin, Ireland for methadone treatment was conducted, and this sample was compared with a control group matched by practice, age, gender and General Medical Services (GMS) status. RESULTS: Data were collected on 114 patients. Fifty-seven patients were on methadone treatment, of whom 52(91%) had at least one chronic illness (other then substance use) and 39(68%) were prescribed at least one regular medication. Frequent utilisation of primary care services and secondary care services in the previous six months was observed among patients on methadone treatment and controls, although the former had significantly higher chronic illness prevalence and primary care contact rates. The study instrument facilitated data collection that was feasible and with minimal inter-observer variation. CONCLUSION: Multimorbidity is common among problem drug users attending general practice for methadone treatment. Primary care may therefore have an important role in primary and secondary prevention of chronic illnesses among this population. This study offers a feasible study instrument for further work on this issue. (238 words).

  20. A shared respite--The meaning of place for family well-being in families living with chronic illness.

    Science.gov (United States)

    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.

  1. Chronic illness and multimorbidity among problem drug users: a comparative cross sectional pilot study in primary care.

    LENUS (Irish Health Repository)

    Cullen, Walter

    2009-01-01

    BACKGROUND: Although multimorbidity has important implications for patient care in general practice, limited research has examined chronic illness and health service utilisation among problem drug users. This study aimed to determine chronic illness prevalence and health service utilisation among problem drug users attending primary care for methadone treatment, to compare these rates with matched \\'controls\\' and to develop and pilot test a valid study instrument. METHODS: A cross-sectional study of patients attending three large urban general practices in Dublin, Ireland for methadone treatment was conducted, and this sample was compared with a control group matched by practice, age, gender and General Medical Services (GMS) status. RESULTS: Data were collected on 114 patients. Fifty-seven patients were on methadone treatment, of whom 52(91%) had at least one chronic illness (other then substance use) and 39(68%) were prescribed at least one regular medication. Frequent utilisation of primary care services and secondary care services in the previous six months was observed among patients on methadone treatment and controls, although the former had significantly higher chronic illness prevalence and primary care contact rates. The study instrument facilitated data collection that was feasible and with minimal inter-observer variation. CONCLUSION: Multimorbidity is common among problem drug users attending general practice for methadone treatment. Primary care may therefore have an important role in primary and secondary prevention of chronic illnesses among this population. This study offers a feasible study instrument for further work on this issue. (238 words).

  2. Research Review: Childhood chronic physical illness and adult emotional health - a systematic review and meta-analysis.

    Science.gov (United States)

    Secinti, Ekin; Thompson, Ellen J; Richards, Marcus; Gaysina, Darya

    2017-07-01

    Childhood chronic physical illness is associated with a greater vulnerability for emotional problems (i.e. depression and anxiety) in childhood. However, little is known about life-long effects of childhood chronic physical illness on mental health. The present study aims to systematically review evidence for associations between eight chronic physical illnesses with childhood onset (arthritis, asthma, cancer, chronic renal failure, congenital heart disease, cystic fibrosis, type 1 diabetes, and epilepsy) and adult emotional problems. A database search of MEDLINE, PsycARTICLES, PsycINFO, and ScienceDirect was undertaken, and random effects meta-analyses were used to synthesise evidence from eligible studies. In total, 37 studies were eligible for the systematic review (n = 45,733) and of these, 34 studies were included in the meta-analyses (n = 45,358). There were overall associations between childhood chronic physical illness and adult depression (OR = 1.31; 95% CI [1.12, 1.54]) and anxiety (OR = 1.47; 95% CI [1.13, 1.92]). Separate meta-analyses for childhood asthma, type 1 diabetes and cancer were also conducted, with cancer being significantly associated with adult depression (OR = 1.19; 95% CI [1.00, 1.42]). The effects of childhood chronic physical illness on the risk of emotional problems persist beyond childhood and adolescence. Mental health prevention and intervention strategies targeting children with chronic physical illnesses can have long-term benefits. © 2017 Association for Child and Adolescent Mental Health.

  3. 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.

    Science.gov (United States)

    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.

  4. Under-recording of work-related injuries and illnesses: An OSHA priority.

    Science.gov (United States)

    Fagan, Kathleen M; Hodgson, Michael J

    2017-02-01

    A 2009 Government Accounting Office (GAO) report, along with numerous published studies, documented that many workplace injuries are not recorded on employers' recordkeeping logs required by the Occupational Safety and Health Administration (OSHA) and consequently are under-reported to the Bureau of Labor Statistics (BLS), resulting in a substantial undercount of occupational injuries in the United States. OSHA conducted a Recordkeeping National Emphasis Program (NEP) from 2009 to 2012 to identify the extent and causes of unrecorded and incorrectly recorded occupational injuries and illnesses. OSHA found recordkeeping violations in close to half of all facilities inspected. Employee interviews identified workers' fear of reprisal and employer disciplinary programs as the most important causes of under-reporting. Subsequent inspections in the poultry industry identified employer medical management policies that fostered both under-reporting and under-recording of workplace injuries and illnesses. OSHA corroborated previous research findings and identified onsite medical units as a potential new cause of both under-reporting and under-recording. Research is needed to better characterize and eliminate obstacles to the compilation of accurate occupational injury and illness data. Occupational health professionals who work with high hazard industries where low injury rates are being recorded may wish to scrutinize recordkeeping practices carefully. This work suggests that, although many high-risk establishments manage recordkeeping with integrity, the lower the reported injury rate, the greater the likelihood of under-recording and under-reporting of work-related injuries and illnesses. Published by Elsevier Ltd.

  5. 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

    Directory of Open Access Journals (Sweden)

    Stewart Allison

    2008-05-01

    Full Text Available Abstract Background 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. Methods 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. Results 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

  6. 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

    Science.gov (United States)

    Si, Damin; Bailie, Ross; Cunningham, Joan; Robinson, Gary; Dowden, Michelle; Stewart, Allison; Connors, Christine; Weeramanthri, Tarun

    2008-01-01

    Background 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. Methods 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. Results 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

  7. 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.

    Science.gov (United States)

    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

  8. Impermanence and Sense of Coherence: Lessons Learned From the Adaptive Behaviors of Sri Lankan Buddhist Nuns With a Chronic Illness.

    Science.gov (United States)

    Wijesinghe, Sunny; Parshall, Mark B

    2016-03-01

    The purpose of this study was to explore the influence of traditional Buddhist spiritual beliefs and practices on coping with chronic illness. The study was a descriptive ethnography. Participant observation and semistructured interviews were used with 45 Sri Lankan Buddhist nuns with a chronic illness and 20 secondary informants. Cultural domains and taxonomies were explored to uncover themes pertaining to traditional Buddhist spirituality and experiences of chronic illness. A repeating cultural theme, responsibility, was identified. Responsibility took four forms: to the Buddha, to the social circle, to self-liberation through meditation, and to finding security in old age. Nuns shaped spiritual practices (some with folk origins) to fulfill these responsibilities. Coping ranged from health-seeking to resigned acceptance. Responsibilities and coping were situated in a context of Buddhist spiritual beliefs about impermanence. Findings were congruent with Antonovsky's model of salutogenesis, in particular, the construct of sense of coherence. © The Author(s) 2014.

  9. Religious versus Conventional Psychotherapy for Major Depression in Patients with Chronic Medical Illness: Rationale, Methods, and Preliminary Results

    OpenAIRE

    Koenig, Harold G.

    2012-01-01

    This paper (1) reviews the physical and religious barriers to CBT that disabled medically ill-depressed patients face, (2) discusses research on the relationship between religion and depression-induced physiological changes, (3) describes an ongoing randomized clinical trial of religious versus secular CBT in chronically ill patients with mild-to-moderate major depression designed to (a) overcome physical and religious barriers to CBT and (b) compare the efficacy of religious versus secular C...

  10. Patient self-management and chronic illness: evaluating outcomes and impacts of information technology.

    Science.gov (United States)

    Cummings, Elizabeth; Turner, Paul

    2009-01-01

    Chronic illness is increasing in Australia and throughout the world. It is proving to be a large burden upon health systems. In response, a number of approaches are being tried including the introduction of self-management programmes to assist people in improving their health outcomes. There are also claims that the introduction of information and communications technology (ICT) tools can improve the management of these chronic conditions.This paper investigates the influence of ICT on the health outcomes and experiences of patients with chronic obstructive pulmonary disease (COPD) participating in a mentored self-management programme. It utilises a combined quantitative and qualitative methodology and introduces the use of triad interviews to provide a broader evaluation of the experiences of individuals within a controlled trial. Two sub-groups of participants within the controlled trial were examined, both received mentoring but one sub-group was also supported with access to an ICT symptom monitoring tool. This research highlights the need for more holistic perspectives on patients and towards the use of a variety of methodological approaches in designing and evaluating e-health projects. Critically, this research highlights the need to expand our understanding of participant's outcomes beyond conventional clinical or cohort based measures.

  11. A cognitive behavioral based group intervention for children with a chronic illness and their parents: a multicentre randomized controlled trial

    Directory of Open Access Journals (Sweden)

    Schuengel Carlo

    2011-07-01

    Full Text Available Abstract Background Coping with a chronic illness (CI challenges children's psychosocial functioning and wellbeing. Cognitive-behavioral intervention programs that focus on teaching the active use of coping strategies may prevent children with CI from developing psychosocial problems. Involvement of parents in the intervention program may enhance the use of learned coping strategies in daily life, especially on the long-term. The primary aim of the present study is to examine the effectiveness of a cognitive behavioral based group intervention (called 'Op Koers' 1 for children with CI and of a parallel intervention for their parents. A secondary objective is to investigate why and for whom this intervention works, in order to understand the underlying mechanisms of the intervention effect. Methods/design This study is a multicentre randomized controlled trial. Participants are children (8 to 18 years of age with a chronic illness, and their parents, recruited from seven participating hospitals in the Netherlands. Participants are randomly allocated to two intervention groups (the child intervention group and the child intervention combined with a parent program and a wait-list control group. Primary outcomes are child psychosocial functioning, wellbeing and child disease related coping skills. Secondary outcomes are child quality of life, child general coping skills, child self-perception, parental stress, quality of parent-child interaction, and parental perceived vulnerability. Outcomes are evaluated at baseline, after 6 weeks of treatment, and at a 6 and 12-month follow-up period. The analyses will be performed on the basis of an intention-to-treat population. Discussion This study evaluates the effectiveness of a group intervention improving psychosocial functioning in children with CI and their parents. If proven effective, the intervention will be implemented in clinical practice. Strengths and limitations of the study design are discussed

  12. Effectiveness of neurofeedback therapy for anxiety and stress in adults living with a chronic illness: a systematic review protocol.

    Science.gov (United States)

    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?

  13. A systematic review and quantitative analysis of neurocognitive outcomes in children with four chronic illnesses.

    Science.gov (United States)

    Moser, Joanna J; Veale, Pamela M; McAllister, Debbie L; Archer, David P

    2013-11-01

    Concern has been expressed that infants and children exposed to uneventful surgery and anesthesia may incur neurological injury that becomes manifest in poor scholastic performance or future learning difficulties. A recent meta-analysis of seven clinical studies examined the relationship between learning or behavior difficulties and pediatric exposure to anesthesia/surgery and reported an odds ratio of 1.4; however, the level of association and causal factors remain unclear. The purpose of our study is to provide context to the pediatric anesthesia neurotoxicity question by reviewing the evidence linking four childhood illnesses with neurocognitive development. In the present review, we have sought to quantify the magnitude of the impact of chronic illness on neurocognitive development through a systematic review of publications that report the developmental trajectory of patients with four childhood diseases: cystic fibrosis (CF), hemophilia A, end-stage renal disease (ESRD) and end-stage liver disease (ESLD). Studies were identified by searching the electronic databases OVID MEDLINE and Pubmed and scanning reference lists of articles by two authors. Limits were applied to the English language and to humans. We used the following search terms: CF, hemophilia A, ESRD, ESLD in combination with academic performance, educational status, educational measurement, learning, achievement, developmental delay, learning disabilities, intellectual disabilities, behavioral disorders, intelligence quotient (IQ), cognition, school problems, absenteeism, school attendance, anxiety, learning regression, or developmental regression. The search strategy was reviewed independently by all four authors. Eligibility assessment was performed independently in an unblinded standardized manner by two authors who chose relevant articles from the overall search results by scanning the titles and abstracts of articles and from the references within citations. The full-text publications were

  14. Illness representations as mediators of the relationship between dispositional optimism and depression in patients with chronic tinnitus: A cross-sectional study.

    NARCIS (Netherlands)

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

    2014-01-01

    Objective: 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

  15. Psychomotor skills learning under chronic hypoxia.

    Science.gov (United States)

    Bouquet, C A; Gardette, B; Gortan, C; Abraini, J H

    1999-09-29

    Psychomotor deficits are a prominent feature in subjects exposed to hypoxia. Eight subjects exposed to chronic hypoxia during a simulated climb to 8848 m (Everest-Comex 97) were investigated using both a simple psychomotor task (Purdue pegboard) and two complex psychomotor tasks including a recognition task of either a color stimulus (high semantic level) or an abstract sign (low semantic level). Exposure to hypoxic stress mainly produced psychomotor skills learning deficits compared to control study, with greater deficits in the complex psychomotor task. The pattern of results suggests disruptions of motor strategic process. Our data further suggest that the relative strength of implicit or automatic memory processes associated with semantic information processing may increase when disturbances occur in brain functions.

  16. Psychosocial Adaptation to Chronic Illness and Disability: A Virtue Based Model.

    Science.gov (United States)

    Kim, Jeong Han; McMahon, Brian T; Hawley, Carolyn; Brickham, Dana; Gonzalez, Rene; Lee, Dong-Hun

    2016-03-01

    Psychosocial adaptation to chronic illness and disability (CID) is an area of study where a positive psychology perspective, especially the study of virtues and character strengths, can be implemented within the rehabilitation framework. A carefully developed theory to guide future interdisciplinary research is now timely. A traditional literature review between philosophy and rehabilitation psychology was conducted in order to develop a virtue-based psychosocial adaptation theory, merging important perspectives from the fields of rehabilitation and positive psychology. The virtue-based psychosocial adaptation model (V-PAM) to CID is proposed in the present study. The model involves five qualities or constructs: courage, practical wisdom, commitment to action, integrity and emotional transcendence. Each of these components of virtue contributes to an understanding of psychosocial adaptation. The present study addresses the implications and applications of V-PAM that will advance this understanding.

  17. Youth friendly communication in a transition clinic aimed at adolescents with chronic illness

    DEFF Research Database (Denmark)

    Hanghøj, Signe; Boisen, Kirsten A.; Schmiegelow, Kjeld

    2017-01-01

    Good communication skills are considered a cornerstone in a "youth friendly approach". However, research in the field as well as transition guidelines only sparsely explain what doctor-patient communication involves. Furthermore, only few guidelines exist regarding concrete communication skills...... for health professionals who want to apply a youth friendly communication approach to their practice. To examine how health professionals trained in adolescent medicine practise a youth friendly approach when communicating with adolescents with chronic illness. Data from 10 non-participation observations...... in the transition clinic positioned the adolescent patients as independent interlocutors, children, and adolescents, and they positioned themselves as imperfect/untraditional, appreciative and non-judgmental. The positionings were based on a number of linguistic tools such as affirmation, recognition, examples...

  18. Feasibility of a transition intervention aimed at adolescents with chronic illness

    DEFF Research Database (Denmark)

    Hanghøj, Signe; Boisen, Kirsten A; Schmiegelow, Kjeld

    2018-01-01

    intervention aimed at adolescents with chronic illness focusing on declines, drop-outs, no-shows and advantages and disadvantages of participating. METHODS: We invited 236 adolescents (12-20 years) with juvenile idiopathic arthritis (JIA) to participate in a randomised controlled trial (RCT) transition...... intervention. Reasons for decline and drop-outs were calculated. Adolescents' experiences of advantages and disadvantages of participating and reasons for no-shows were investigated through focus groups and telephone interviews, which were analysed using thematic analysis. RESULTS: One hundred and twenty...... and being too busy. Advantages of participating were stated as 'participating without parents', 'trust and confidentiality', 'being able to set the agenda' and 'responsiveness'. Disadvantages were 'unclear aim of the study', 'meeting others with JIA', 'too few conversations' and 'transport issues...

  19. A role for communities in primary prevention of chronic illness? Case studies in regional Australia.

    Science.gov (United States)

    Taylor, Judy; Braunack-Mayer, Annette; Cargo, Margaret; Larkins, Sarah; Preston, Robyn

    2013-08-01

    In regional Australia "communities of place," defined as bounded geographic locations with a local society, undertake community-wide primary prevention programs. In helping to prevent chronic illness, communities provide valuable resources to the health system. To understand the role of community-health sector partnerships for primary prevention and the community contextual factors that affect them, we studied eight partnerships. We used an embedded multiple case study design and collected data through interviews, nonparticipant observation, and document analysis. These data were analyzed using a typology of community-health sector partnerships and community interaction theory to frame the key community contextual factors that affected partnerships. The dominant factor affecting all partnerships was the presence of a collective commitment that communities brought to making the community a better place through developing health. We call this a communitarian approach. Additional research to investigate factors influencing a communitarian approach and the role it plays in partnerships is required.

  20. Macroergonomic Factors in the Patient Work System: Examining the Context of Patients with Chronic Illness

    Science.gov (United States)

    Holden, Richard J.; Valdez, Rupa S.; Schubert, Christiane C.; Thompson, Morgan J.; Hundt, Ann S.

    2017-01-01

    Human factors/ergonomics recognizes work as embedded in and shaped by levels of social, physical, and organizational context. This study investigates the contextual or macroergonomic factors present in the health-related work performed by patients. We performed a secondary content analysis of findings from three studies of the work of chronically ill patients and their informal caregivers. Our resulting consolidated macroergonomic patient work system model identifies seventeen factors across physical, social, and organizational domains and household and community levels. These factors are illustrated with examples from the three studies and discussed as having positive, negative, or varying effects on health and health behavior. We present three brief case studies to illustrate how macroergonomic factors combine across domains and levels to shape performance in expected and unexpected ways. Findings demonstrate not only the importance of context for patients’ health-related activities but also specific factors to consider in future research, design, and policy efforts. PMID:27164171

  1. Telephone technical support: an essential adjunct to a computer intervention for rural chronically ill women.

    Science.gov (United States)

    Cudney, Shirley A; Weinert, Clarann; Phillips, Larry D

    2007-01-01

    The purposes of this article are to describe the telephone technical support system used in the Women to Women support and health education computer outreach project for chronically ill rural women, discuss the preparation and role of the information systems specialist, and examine the nature and quality of telephone support requested and received. Telephone support records were tallied and categorized to determine the number of participants requiring assistance and the nature of problems described. The quality of telephone support received was assessed through a postintervention mail survey. About one third of participants sought telephone support, most frequently for problems related to impaired Internet service provider delivery and the university's Web-application platform. The quality of telephone support was rated highly by 96% of respondents. It was concluded that telephone technical support is a useful adjunct to a computer-based intervention and that quality support can be provided by including a competent information systems specialist on the research team.

  2. Protocol of a Pilot Study of Technology-Enabled Coproduction in Pediatric Chronic Illness Care.

    Science.gov (United States)

    Kaplan, Heather C; Thakkar, Sunny Narendra; Burns, Lisa; Chini, Barbara; Dykes, Dana Mh; McPhail, Gary L; Moore, Erin; Saeed, Shehzad Ahmed; Eslick, Ian; Margolis, Peter A; Opipari-Arrigan, Lisa

    2017-04-28

    Pediatric chronic illness care models are traditionally organized around acute episodes of care and may not meet the needs of patients and their families. Interventions that extend the patient-clinician interaction beyond the health care visit, allow for asynchronous and bidirectional feedback loops that span visits and daily life, and facilitate seamless sharing of information are needed to support a care delivery system that is more collaborative, continuous, and data-driven. Orchestra is a mobile health technology platform and intervention designed to transform the management of chronic diseases by optimizing patient-clinician coproduction of care. The aim of this study is to assess the feasibility, acceptability, and preliminary impact of the Orchestra technology and intervention in the context of pediatric chronic illness care. This study will be conducted in the cystic fibrosis and inflammatory bowel disease clinics at Cincinnati Children's Hospital Medical Center. We will enroll interested patients and their caregivers to work with clinicians to use the Orchestra technology platform and care model over a 6-month period. In parallel, we will use quality improvement methods to improve processes for integrating Orchestra into clinic workflows and patient/family lifestyles. We will use surveys, interviews, technology use data, and measures of clinical outcomes to assess the feasibility, acceptability, and preliminary impact of Orchestra. Outcome measures will include assessments of: (1) enrollment and dropout rates; (2) duration of engagement/sustained use; (3) symptom and patient-reported outcome tracker completion rates; (4) perceived impact on treatment plan, communication with the clinical team, visit preparation, and overall care; (5) changes in disease self-efficacy and engagement in care; and (6) clinical outcomes and health care utilization. Participant recruitment began in mid-2015, with results expected in 2017. Chronic disease management needs a

  3. Compliance to treatment in patients with chronic illness: A concept exploration

    Science.gov (United States)

    Rafii, Forough; Fatemi, Naima Seyed; Danielson, Ella; Johansson, Christina Melin; Modanloo, Mahnaz

    2014-01-01

    Background: Patients’ compliance to treatment is an important indicator for evaluating the successful management in chronic illnesses. Despite the fact an applicable definition of compliance is required to suitable intervention and research, this concept is not clear and there is no consensus concerning its meaning, definition, and measurement. The aim of this study was to explore the concept of compliance and to formulate a working definition. Materials and Methods: Theoretical phase of Schwartz-Barcott and Kim's Hybrid Model of concept analysis was used to analyze the concept of compliance. Data were collected by using literature reviews. Medline, CINAHL, Ovid, Elsevier, Pro Quest and Blackwell databases were searched from 1975 to 2010 using the keywords “Compliance,” “Non-compliance,” “Adherence,” and “Concordance.” Articles published in English were selected if they included adult patients with chronic illnesses and reported attributes of compliance; 23 such relevant articles were chosen. Results: The attributes of compliance included patient obedience, ability to implement medical advice, flexibility, responsibility, collaboration, participation, and persistence in implementing the advices. Antecedents are organized into two interacting categories: Internal factors refer to the patient, disease, and treatment characteristics and external factors refer to the healthcare professionals, healthcare system, and socioeconomic factors. Compliance may lead to desirable and undesirable consequences. A working definition of compliance was formulated by comparing and contrasting the existing definitions with regard to its attributes which are useful in clinical practice and research. Conclusions: This finding will be useful in clinical practice and research. But this working definition has to be tested in a clinical context and a broad view of its applicability has to be obtained. PMID:24834085

  4. Power and resistance within the hospital's hierarchical system: the experiences of chronically ill patients.

    Science.gov (United States)

    Griscti, Odette; Aston, Megan; Warner, Grace; Martin-Misener, Ruth; McLeod, Deborah

    2017-01-01

    To explore experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings. Specifically, we explored how social and institutional discourses shape power relations during the negotiation process. The hospital system is embedded in a hierarchical structure where the voice of the healthcare provider as expert is often given more importance than the patient. This system has been criticised as being oppressive to patients who are perceived to be lower in the hierarchy. In this study, we illustrate how the hospital's hierarchical system is not always oppressing but can also create moments of empowerment for patients. A feminist poststructuralist approach informed by the teaching of Foucault was used to explore power relations between nurses and patients when negotiating patient care in hospital settings. Eight individuals who suffered from chronic illness shared their stories about how they negotiated their care with nurses in hospital settings. The interviews were tape-recorded. Discourse analysis was used to analyse the data. Patients recounted various experiences when their voices were not heard because the current hospital system privileged the healthcare provider experts' advice over the patients' voice. The hierarchical structure of hospital supported these dynamics by privileging nurses as gatekeepers of service, by excluding the patients' input in the nursing notes and through a process of self-regulation. However, patients in this study were not passive recipients of care and used their agency creatively to resist these discourses. Nurses need to be mindful of how the hospital's hierarchical system tends to place nurses in a position of power, and how their authoritative position may positively or adversely affect the negotiation of patient care. © 2016 John Wiley & Sons Ltd.

  5. Evaluating Diabetes Care for Patients With Serious Mental Illness Using the Chronic Care Model

    Directory of Open Access Journals (Sweden)

    Kelly Vaez

    2017-10-01

    Full Text Available People with serious mental illness (SMI have a higher incidence of type 2 diabetes mellitus (T2DM and shorter life span due to medical health problems. The chronic care model (CCM has been used to improve care of patients with T2DM. One clinical organization that provided primary care to patients with SMI had excellent diabetes outcomes but did not have information on how they achieved those outcomes. Thus, we conducted a pilot study chart review for 30 patients with T2DM and SMI to determine how well the clinic’s system aligned with the overall CCM components and which components correlated with diabetes control. We also evaluated use of the CCM using the Assessment of Chronic Illness Care provider survey. Results showed that the clinic had an overall basic implementation level of the CCM, which allows opportunity for improvement. Two elements of the CCM were correlated with hemoglobin A 1C and both were in an unexpected direction: self-management support in the variable of percentage of visits that included patient-specific goal-setting ( r s = .52; P = .004 and delivery system design in the variable of number of nurse practitioner visits per study period ( r s = .43; P = .02. These findings suggest that the clinic may have made more concentrated efforts to manage diabetes for patients who were not in good diabetes control. Providers noted the influence of SMI and social service organization support on these patients’ clinical outcomes. The findings will be reexamined after a fuller implementation of the CCM to further improve management in this population.

  6. Migraine in Gulf War Illness and Chronic Fatigue Syndrome: Prevalence, potential mechanisms, and evaluation

    Directory of Open Access Journals (Sweden)

    Rakib eRayhan

    2013-07-01

    Full Text Available Objective: To assess the prevalence of headache subtypes in Gulf War Illness and Chronic Fatigue Syndrome compared to controls. Background: Migraines are reported in Chronic Fatigue Syndrome (CFS. Approximately, 25% of the military personnel who served in the 1990-1991 Persian Gulf War have developed Gulf War Illness (GWI. Symptoms in GWI share considerable overlap with CFS, including headache complaints. The type and prevalence of headaches in GWI have not been adequately assessed.Methods: 50 GWI, 39 CFS and 45 controls were examined. Participants had structured headache evaluations based on the 2004 International Headache Society criteria. All subjects had history and physical examinations, measurements of systemic hyperalgesia (dolorimetry, assessments for exclusionary indicators, fatigue and symptom related questionnaires. Results: Migraines were detected in 64% of GWI (odds ratio, 11.6, [±95% CI, 4.1 to 32.5] and 82% of CFS subjects (odds ratio, 22.5, [±95% CI, 7.8 to 64.8] compared to only 13% of controls. There was a predominance of females in the CFS compared to GWI and controls. However, gender did not influence migraine status (x2= 2.7; P = 0.101. Measures of fatigue, pain, and other ancillary criteria were comparable between GWI and CFS subjects with and without headache. Conclusion: Results validate previous findings of migraine in CFS and confirms similar increased prevalence in GWI compared to controls. This suggests GWI and CFS subjects share pathophysiological mechanisms that underlie migraine attacks and contribute to the extensive overlap of symptom constructs and disease pathophysiology. The high migraine prevalence warrants the inclusion of a structured headache evaluation that coincides with clinical assessments of GWI and CFS diagnosis.

  7. General illness and psychological factors in patients with chronic nasal symptoms.

    Science.gov (United States)

    Kara, N; Yao, A C; Newton, J; Deary, V; O'Hara, J; Wilson, J A

    2018-04-01

    Only a minority of patients referred to specialists with sinonasal symptoms have clear evidence of chronic rhinosinusitis (CRS). This study aims to estimate the prevalence of and associations between (i) general illness factors (fatigue, autonomic dysfunction) and (ii) psychological factors (anxiety, depression, somatisation, personality traits) in patients presenting with sinonasal symptoms. The following validated questionnaires were administered to patients: the Sino-Nasal Outcome Test-22 (SNOT-22) identifying symptom burden, Composite Autonomic Symptom Score-31 (COMPASS-31) measuring autonomic function, Chalder Fatigue Questionnaire, Patient Health Questionnaire-15 (PHQ-15) addressing somatisation symptoms, Hospital Anxiety and Depression Scale (HADS), and the International Personality Item Pool-50 (IPIP-50). Comparisons were made with normative and general population data, and relationships were analysed using nonparametric correlation. Secondary care ENT outpatients. Adults referred with chronic sinonasal symptoms. SNOT-22, COMPASS-31, Chalder, PHQ-15, HADS, and IPIP-50 questionnaire scores. Sixty-one patients were included. There was a high prevalence of all general and psychological factors assessed compared with controls. Total SNOT-22 scores showed significant correlation with Chalder fatigue scores, total autonomic dysfunction score, anxiety, depression, somatisation tendencies and the emotionally unstable personality trait. Emotional instability and psychological dysfunction correlated significantly with sleep and psychological subscales of SNOT-22 but not the rhinological or ear/facial subscales. Patients with sinonasal symptoms demonstrate high prevalence and complex associations of general illness factors, psychological distress and certain personality traits. The SNOT-22 is a valuable tool, but its utility is limited by correlations with these confounding factors (eg psychological factors) that may exaggerate the total score. The use of the SNOT-22

  8. Independence/dependence--a contradictory relationship? Life with a chronic illness.

    Science.gov (United States)

    Delmar, Charlotte; Bøje, Trine; Dylmer, Dorrit; Forup, Lisbeth; Jakobsen, Christina; Møller, Majbritt; Sønder, Hanne; Pedersen, Birthe D

    2006-09-01

    This study shows that self-responsibility and self-control are meaningful values in the activities and decisions of everyday life. Dignity and being respected as an individual are closely connected to being able to manage on one's own and being independent of others' help. The study also shows that including other people into one's life situation can be an important sign of self-management. However, the critical interpretation shows that it is the view of the human being which determines whether help from others and self-managing on one's own can be combined. With a relational view of the human being, i.e. the basic condition that people always enter into relations of dependence, there is no contradiction between independence and dependence. In contrast, an individualist, liberalist view of the human being promotes an attitude of blaming oneself with the potential for feelings of inadequacy and guilt. The study also shows that seeking out treatment in the alternative medical sector maintain a form of continued self-control and self-responsibility. The study concludes that the nurse must work to qualify her/his sensory-based, situationally determined attentiveness and her/his view of the human being, which will include directing her/his attention towards the patient's view of the human being, values and ways of relating to oneself and to one's choices. The research design is qualitative and takes a phenomenological-hermeneutic approach. The data are based on interviews with 18 chronically ill patients, divided into three groups of six patients diagnosed with 'type I' diabetes, colitis ulcerosa and patients with coronary occlusion in the rehabilitation phase. Regardless of the diagnosis, the objective of the interview study was to highlight themes in the patients' views of health and illness related to their chronic condition and the significance of these views have for their mastery of everyday life. The research method is inspired by Paul Ricoeur.

  9. Psychiatric morbidity and cognitive representations of illness in chronic daily headache.

    Science.gov (United States)

    Page, L A; Howard, L M; Husain, K; Tong, J; Dowson, A J; Weinman, J; Wessely, S C

    2004-12-01

    We studied patients with chronic daily headache (CDH) attending a headache clinic. Our hypothesis was that patients with anxiety or depression would have poorer functional status and differing cognitive representations of illness than would those without psychiatric morbidity. The sample consisted of 144 consecutive new patients. Patients underwent a semistructured interview and completed a prospective headache diary, the Hospital Anxiety and Depression Scale (HADS) and other health-related questionnaires. Sixty patients (42%) were probable cases of anxiety or depression on the basis of their HADS score. These HADS-positive cases had longer, more severe headaches, were more worried about them, were more functionally impaired and believed that their illness would last longer. Principal components analysis revealed that the HADS-positive cases believed that psychological factors play a role in their headaches. Psychological morbidity is high amongst CDH patients who attend specialist clinics. In addition to identifying those with high levels of psychological distress, the HADS can be used to predict those likely to have worse headaches and poorer functional ability.

  10. Latex Allergy, a Special Risk for Patients with Chronic Illness and Health Care Workers

    Directory of Open Access Journals (Sweden)

    A.Zafer Caliskaner

    2008-06-01

    Full Text Available Natural rubber latex allergy is a new illness whose prevalence has reached epidemic proportions in highly exposed populations such as health care workers and who has chronic illness. After anaphylactic type reactions due to latex has been shown as case reports. The major risk factors in latex are intense exposure to latex allergens (surgical gloves, catheters, etc, atopy, hand eczema, female gender, history of multiple operations and dental interventions. An association between latex allergy and allergy to various fruits (banana, kiwi, avocado, pineapple, etc has been reported. Latex allergy is responsible for a wide spectrum of clinical symptoms ranging from a mild dermatitis to severe anaphylaxis. In this report, we present that latex related systemic allergic reactions cases; the first one is 24 years old nurse woman who is working at the blood bank in our hospital and the other one is 32 years old woman patient who has repeatative medical examination, and in vitro fertilisation therapy plan and suffered for systemic allergic reaction due to latex gloves which was used in her last concha operations. [TAF Prev Med Bull 2008; 7(3.000: 265-268

  11. Gratitude uniquely predicts lower depression in chronic illness populations: A longitudinal study of inflammatory bowel disease and arthritis.

    Science.gov (United States)

    Sirois, Fuschia M; Wood, Alex M

    2017-02-01

    Although gratitude has been identified as a key clinically relevant trait for improving well-being, it is understudied within medical populations. The current study addressed this gap and extended previous and limited cross-sectional research by examining the longitudinal associations of gratitude to depression in 2 chronic illness samples, arthritis and inflammatory bowel disease (IBD). Two chronic illness samples, arthritis (N = 423) and IBD (N = 427), completed online surveys at Time 1 (T1). One hundred sixty-three people with arthritis and 144 people with IBD completed the 6-month follow-up survey (T2). Depression, gratitude, illness cognitions, perceived stress, social support, and disease-related variables were assessed at T1 and T2. At T2, 57.2% of the arthritis sample and 53.4% of the IBD sample met the cut off scores for significant depression. T1 gratitude was negatively associated with depressive symptoms at T1 and T2 in both samples (rs from -.43 to -.50). Regression analyses revealed that T1 gratitude remained a significant and unique predictor of lower T2 depression after controlling for T1 depression, relevant demographic variables, illness cognitions, changes in illness-relevant variables, and another positive psychological construct, thriving, in both samples. As the first investigation of the longitudinal associations of gratitude to psychological well-being in the context of chronic illness, the current study provides important evidence for the relevance of gratitude for health-related clinical populations. Further intervention-based research is warranted to more fully understand the potential benefits of gratitude for adjustment to chronic illness. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

  12. Effectiveness of LISTEN on loneliness, neuroimmunological stress response, psychosocial functioning, quality of life, and physical health measures of chronic illness

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    Laurie A. Theeke

    2016-09-01

    Conclusions: LISTEN can effectively diminish loneliness and decrease the systolic blood pressure in community-dwelling, chronically ill, older adults. Results indicate that this population, if left with untreated loneliness, may experience functional impairment over a period as short as 4 months. Further studies on LISTEN are needed with larger samples, in varied populations, and over longer periods of time to assess the long-term effects of diminishing loneliness in multiple chronic conditions.

  13. The Effect of Opioid Use and Mental Illness on Chronic Disease Medication Adherence in Superutilizers.

    Science.gov (United States)

    Surbhi, Satya; Graetz, Ilana; Wan, Jim Y; Gatwood, Justin; Bailey, James E

    2018-03-01

    Nonadherence to essential chronic medications has been identified as a potential driver of high health care costs in superutilizers of inpatient services. Few studies, however, have documented the levels of nonadherence and factors associated with nonadherence in this high-cost, vulnerable population. To examine the factors associated with nonadherence to essential chronic medications, with special emphasis on mental illness and use of opioid medications. This study was a retrospective panel analysis of 2-year baseline data for Medicare Part D beneficiaries eligible for the SafeMed care transitions program in Memphis, Tennessee, from February 2013 to December 2014. The 2-year baseline data for each patient were divided into four, 6-month patient periods. The study included Medicare superutilizers (defined as patients with ≥ 3 hospitalizations or ≥ 2 hospitalizations with ≥ 2 emergency visits in 6 months) with continuous Part D coverage who had filled at least 1 drug class used to treat hypertension, diabetes mellitus, congestive heart failure, coronary artery disease, or chronic lung disease. The outcome included medication nonadherence assessed using proportion of days covered (PDC), with PDC mental illness (defined as a diagnosis of depression or anxiety or ≥ 1 anxiolytic or antidepressant fill) and opioid medication fills assessed in each 6-month period. Pooled observations from the four 6-month periods were used for multivariable analyses using the patient periods as the unit of analysis. A random effects model with robust standard errors and a binary distribution were used to examine associations between independent variables (time invariant and time variant factors) and medication nonadherence. The model included lagged effects of time variant factors measured in each period. Overall nonadherence to essential chronic medications ranged from 39.3% to 58.4%, with the highest for chronic lung disease medications (49.1%-64.4%). Factors associated with

  14. Prescribing Antidepressants and Benzodiazepines in the Netherlands: Is Chronic Physical Illness Involved?

    Directory of Open Access Journals (Sweden)

    Jacques Th. M. van Eijk

    2010-01-01

    Full Text Available In this study we assessed differences in new and repeat prescriptions of psycho-tropics between patients receiving prescriptions for drugs to treat a common chronic disease and people without such prescriptions. The study used the databases of two Dutch health insurance companies (3 million people. We selected all Dutch men and women aged 45 and older who were registered for six consecutive years (1999–2004. Our analyses both found a consistent relation between psycho-tropics on the one hand and physical illness on the other. People with multi-morbidity were prescribed these drugs most often, especially men and those younger than 65. Epidemiological studies showed a prevalence of depression among people with multi-morbidity to be twice as high as among people without such conditions. According to recent guidelines non-drug treatment may be the first therapy option for patients with non severe depression. If prescribed for a long time, benzodiazepine prescriptions are especially known to be addictive. Our data raise the question to what extent patients with a chronic physical disease suffering from co-occurring mental problems are prescribed psycho-tropics in accord with the guidelines that also advise mental support in case of non severe mental problems. Further research can answer this important question.

  15. [Perspectives of chronically ill patients concerning medical care in Guadalajara, Mexico: a qualitative study].

    Science.gov (United States)

    Mercado Martínez, F J; Ramos Herrera, I M; Valdez Curiel, E

    2000-01-01

    This paper reports partial findings from a broader study on the experience of people with chronic diseases. The objective was to explore the perspectives of diabetic patients towards medical care. A qualitative study was conducted in a poor neighborhood of Guadalajara, Mexico. Thirty subjects with diabetes mellitus participated in the study. Data was gathered by open and semi-open interviews in the subjects' homes and over the course of one year. Data were analyzed using a combination of content and conversational analyzing techniques. Three perspectives predominated when participants evaluated medical care: some define it as good, some as ambivalent, and the rest as bad. These perspectives were closely linked to their disease experience and available medical options according to their material resources. These perspectives change with time, are specific to each available service and type of medical care, and are constructed in terms of all the subjects' present chronic illnesses. Those treated through the social security system evaluate the care in negative terms, with the opposite occurring with those treated in public health care centers and private facilities. Implications regarding health care reform are discussed.

  16. Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review.

    Science.gov (United States)

    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.

  17. The impact of experiential avoidance on the relations between illness representations, pain catastrophising and pain interference in chronic pain.

    Science.gov (United States)

    Karademas, Evangelos C; Karekla, Maria; Flouri, Magdalini; Vasiliou, Vasilis S; Kasinopoulos, Orestis; Papacostas, Savvas S

    2017-12-01

    The aim of this study was to examine the effects of experiential avoidance (EA) on the indirect relationship of chronic pain patients' illness representations to pain interference, through pain catastrophising Design and main outcome measure: The sample consisted of 162 patients diagnosed with an arthritis-related or a musculoskeletal disorder. The effects of EA on the pathway between illness representations, pain catastrophising and pain interference were examined with PROCESS, a computational tool for SPSS Results: After controlling for patient and illness-related variables and pain severity, the 'illness representations-pain catastrophising-pain interference' pathway was interrupted at the higher levels of EA. The reason was that, at the high levels of EA, either the relation of illness representations to pain catastrophising or the relation of pain catastrophising to pain interference was not statistically significant. The findings indicate that EA is not a generalised negative response to highly aversive conditions, at least as far as the factors examined in this study are concerned. EA may rather reflect a coping reaction, the impact of which depends on its specific interactions with the other aspects of the self-regulation mechanism. At least in chronic pain, EA should become the focus of potential intervention only when its interaction with the illness-related self-regulation mechanism results in negative outcomes.

  18. Separate and joint effects of physical and mental health on participation of people with somatic chronic illness.

    NARCIS (Netherlands)

    Jansen, D.L.; Rijken, M.

    2011-01-01

    Aim: To examine the extent to which people with a somatic chronic illness participate in paid jobs, volunteer work, informal care and social activities, and to investigate the separate and joint effects of physical and mental health on participation. Background. Compared with healthy people, people

  19. [Effects of a Multi-disciplinary Approached, Empowerment Theory Based Self-management Intervention in Older Adults with Chronic Illness].

    Science.gov (United States)

    Park, Chorong; Song, Misoon; Cho, Belong; Lim, Jaeyoung; Song, Wook; Chang, Heekyung; Park, Yeon-Hwan

    2015-04-01

    The purpose of this study was to develop a multi-disciplinary self-management intervention based on empowerment theory and to evaluate the effectiveness of the intervention for older adults with chronic illness. A randomized controlled trial design was used with 43 Korean older adults with chronic illness (Experimental group=22, Control group=21). The intervention consisted of two phases: (1) 8-week multi-disciplinary, team guided, group-based health education, exercise session, and individual empowerment counseling, (2) 16-week self-help group activities including weekly exercise and group discussion to maintain acquired self-management skills and problem-solving skills. Baseline, 8-week, and 24-week assessments measured health empowerment, exercise self-efficacy, physical activity, and physical function. Health empowerment, physical activity, and physical function in the experimental group increased significantly compared to the control group over time. Exercise self-efficacy significantly increased in experimental group over time but there was no significant difference between the two groups. The self-management program based on empowerment theory improved health empowerment, physical activity, and physical function in older adults. The study finding suggests that a health empowerment strategy may be an effective approach for older adults with multiple chronic illnesses in terms of achieving a sense of control over their chronic illness and actively engaging self-management.

  20. Quality of Life and Psychosocial Adaptation to Chronic Illness and Disability: Preliminary Analysis of a Conceptual and Theoretical Synthesis

    Science.gov (United States)

    Bishop, Malachy

    2005-01-01

    This article describes and presents an initial analysis of a quality-of-life?based model of psychosocial adaptation to chronic illness and disability. This model, termed disability centrality, represents a conceptual and theoretical synthesis of several existing theories and models, drawn from the quality-of life, rehabilitation counseling, and…

  1. Suicide Risk in Adolescents with Chronic Illness: Implications for Primary Care and Specialty Pediatric Practice--A Review

    Science.gov (United States)

    Greydanus, Donald; Patel, Dilip; Pratt, Helen

    2010-01-01

    Suicide in adolescents is a global tragedy. Research-identified correlates of suicide in youth include depression, academic failure, loss of friends, social isolation, and substance abuse, among others. This review focuses on the potential link between chronic illness in adolescents and increased suicide risk. Research suggests that chronic…

  2. Associations Between Neighborhood Social Capital, Health Literacy, and Self-Rated Health Among People With Chronic Illness

    NARCIS (Netherlands)

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

    2016-01-01

    Health literacy skills are important for health and self-management for people with chronic illness. Neighborhood social capital can provide resources, such as access to information and informal social control over unhealthy behavior. The benefit of these resources, and the access people have to

  3. Solving Developmental Tasks in Adolescents with a Chronic Physical Illness or Physical/Sensory Disability: A Meta-Analysis

    Science.gov (United States)

    Pinquart, Martin; Pfeiffer, Jens P.

    2015-01-01

    Chronic illnesses and disabilities may impair the attainment of age-typical developmental tasks, such as forming relationships with peers and gaining autonomy. Based on a systematic search in electronic databases and cross-referencing, 447 quantitative empirical studies were included which compared the attainment of developmental tasks of…

  4. AN ASSESSMENT OF PATIENT NEED FOR A TECHNOLOGY-ENABLED REMOTE EXERCISE REHABILITATION PROGRAMME AMONG A CHRONIC ILLNESS POPULATION

    Directory of Open Access Journals (Sweden)

    Deirdre Walsh

    2015-10-01

    Conclusion: This study provides evidence of patient desire for a technology-enabled remote exercise rehabilitation programme. Further to this, the current study provides promising preliminary evidence for both the high level of technology use and capability among a cohort of people with chronic illness.

  5. Rehabilitation Counselor Preparation to Work with LGBTQ Persons Living with Chronic Illness/Disability: A Qualitative Content Analysis

    Science.gov (United States)

    Dispenza, Franco; Elston, Nikki C.; Huffstead, Mary E.; Suttles, Mackenzie G.; Golubovic, Nedeljko

    2017-01-01

    Purpose: To identify meaningful educative experiences that contributed to the development of rehabilitation counselors' abilities to provide effective rehabilitation counseling services to lesbian, gay, bisexual, transgender, and queer (LGBTQ) persons living with chronic illness/disabilities (CID). Method: This was a secondary analysis of a larger…

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

    Science.gov (United States)

    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 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

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

    Science.gov (United States)

    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.

  8. Telephone-based health coaching for chronically ill patients: study protocol for a randomized controlled trial.

    Science.gov (United States)

    Dwinger, Sarah; Dirmaier, Jörg; Herbarth, Lutz; König, Hans-Helmut; Eckardt, Matthias; Kriston, Levente; Bermejo, Isaac; Härter, Martin

    2013-10-17

    The rising prevalence of chronic conditions constitutes a major burden for patients and healthcare systems and is predicted to increase in the upcoming decades. Improving the self-management skills of patients is a strategy to steer against this burden. This could lead to better outcomes and lower healthcare costs. Health coaching is one method for enhancing the self-management of patients and can be delivered by phone. The effects of telephone-based health coaching are promising, but still inconclusive. Economic evaluations and studies examining the transferability of effects to different healthcare systems are still rare. Aim of this study is to evaluate telephone-based health coaching for chronically ill patients in Germany. The study is a prospective randomized controlled trial comparing the effects of telephone-based health coaching with usual care during a 4-year time period. Data are collected at baseline and after 12, 24 and 36 months. Patients are selected based on one of the following chronic conditions: diabetes, coronary artery disease, asthma, hypertension, heart failure, COPD, chronic depression or schizophrenia. The health coaching intervention is carried out by trained nurses employed by a German statutory health insurance. The frequency and the topics of the health coaching are manual-based but tailored to the patients' needs and medical condition, following the concepts of motivational interviewing, shared decision-making and evidence-based-medicine. Approximately 12,000 insurants will be enrolled and randomized into intervention and control groups. Primary outcome is the time until hospital readmission within two years after enrolling in the health coaching, assessed by routine data. Secondary outcomes are patient-reported outcomes like changes in quality of life, depression and anxiety and clinical values assessed with questionnaires. Additional secondary outcomes are further economic evaluations like health service use as well as costs and

  9. Nutritional Needs of the Child with a Handicap or Chronic Illness. Manual II: Clinical Nutrition. Presentations from a National Interdisciplinary Symposium.

    Science.gov (United States)

    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…

  10. Health-related quality of life and mental health problems after a disaster: are chronically ill survivors more vulnerable to health problems?

    NARCIS (Netherlands)

    Berg, B. van den; Velden, P.G. van der; Yzermans, C.J.; Stellato, R.K.; Grievink, L.

    2006-01-01

    Studies have shown that the chronically ill are at higher risk for reduced health-related quality of life (HRQL) and for mental health problems. A combination with traumatic events might increase this risk. This longitudinal study among 1216 survivors of a disaster examines whether chronically ill

  11. Health-related quality of life and mental health problems after a disaster: Are chronically ill survivors more vulnerable to health problems?

    NARCIS (Netherlands)

    Berg, Bellis van den; Velden, Peter G van der; Yzermans, C Joris; Stellato, Rebecca K; Grievink, Linda

    2006-01-01

    Studies have shown that the chronically ill are at higher risk for reduced health-related quality of life (HRQL) and for mental health problems. A combination with traumatic events might increase this risk. This longitudinal study among 1216 survivors of a disaster examines whether chronically ill

  12. Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study

    Directory of Open Access Journals (Sweden)

    Aspin Clive

    2012-06-01

    Full Text Available Abstract Background Aboriginal and Torres Strait Islander people with chronic illness confront multiple challenges that contribute to their poor health outcomes, and to the health disparities that exist in Australian society. This study aimed to identify barriers and facilitators to care and support for Aboriginal and Torres Strait Islander people with chronic illness. Methods Face-to-face in-depth interviews were conducted with Aboriginal and Torres Strait Islander people with diabetes, chronic heart failure or chronic obstructive pulmonary disease (n-16 and family carers (n = 3. Interviews were transcribed verbatim and the transcripts were analysed using content analysis. Recurrent themes were identified and these were used to inform the key findings of the study. Results Participants reported both negative and positive influences that affected their health and well-being. Among the negative influences, they identified poor access to culturally appropriate health services, dislocation from cultural support systems, exposure to racism, poor communication with health care professionals and economic hardship. As a counter to these, participants pointed to cultural and traditional knowledge as well as insights from their own experiences. Participants said that while they often felt overwhelmed and confused by the burden of chronic illness, they drew strength from being part of an Aboriginal community, having regular and ongoing access to primary health care, and being well-connected to a supportive family network. Within this context, elders played an important role in increasing people’s awareness of the impact of chronic illness on people and communities. Conclusions Our study indicated that non-Indigenous health services struggled to meet the needs of Aboriginal and Torres Strait Islander people with chronic illness. To address their complex needs, health services could gain considerably by recognising that Aboriginal and Torres Strait

  13. Interpretation of Illness in Patients with Chronic Diseases from Poland and Their Associations with Spirituality, Life Satisfaction, and Escape from Illness—Results from a Cross Sectional Study

    OpenAIRE

    Arndt Büssing; Janusz Surzykiewicz

    2015-01-01

    To analyse how patients with chronic diseases would interpret their illness, and how these interpretations were related to spirituality/religiosity, life satisfaction, and escape from illness, we performed a cross-sectional survey among patients with chronic diseases from Poland (n = 275) using standardized questionnaires. Illness was interpreted mostly as an Adverse Interruption of life (61%), Threat/Enemy (50%), Challenge (42%), and rarely as a Punishment (8%). Regression analyses revealed ...

  14. Divorce and Childhood Chronic Illness: A Grounded Theory of Trust, Gender, and Third-Party Care Providers.

    Science.gov (United States)

    Russell, Luke T; Coleman, Marilyn; Ganong, Lawrence H; Gayer, Debra

    2016-05-01

    Divorced parents face distinct challenges in providing care for chronically ill children. Children's residence in two households necessitates the development of family-specific strategies to ensure coparents' supervision of regimen adherence and the management of children's health care. Utilizing a risk and resilience perspective, a grounded theory study was conducted with 14 divorced parents of children with chronic illnesses. The importance of trust, gender, and relationships with third-party care providers emerged as key themes related to the development of effective coparenting relationships for maintaining children's health. Divorced parents were best able to support the management of their children's chronic conditions when care providers operated as neutral third parties and intermediaries. Collaborative family care may require health care practitioners to avoid being drawn into contentious inter-parental conflicts. © The Author(s) 2016.

  15. Tobacco-related chronic illnesses: a public health concern for Jamaica.

    Science.gov (United States)

    Crawford, Tazhmoye V; McGrowder, Donovan A; Barnett, Jasper D; McGaw, Barbara A; McKenzie, Irving F; James, Leslie G

    2012-01-01

    Tobacco use is a leading cause of preventable morbidity and mortality from non-communicable diseases. The objectives of the study were to determine the percentage of annual income used to purchase tobacco-related products and treat tobacco-related illnesses, and assess the characteristics of smokers and their awareness of the health-related risks of smoking. Stratified and snowball sampling methods were used to obtain information (via a 17-item, close-ended questionnaire) from 85 adult respondents (49 males and 36 females). The instrument comprised of demographic characteristics, smoking behavioural/lifestyle, health, and micro socio-economics. There were no significant differences between individuals who were affected by chronic obstructive pulmonary disorder (COPD) (14.1%) and cardiovascular disease (18.8%). It was found that respondents spend 30-39% of their annual income on tobacco-related products. Forty percent (40.0%) and 41.7% of respondents with lung cancer and COPD respectively spend more than 50% of their annual income to treat these diseases. The majority (80%) of those who continues to consume tobacco-related products were uncertain as to why they were doing it. Not all the smokers were aware of the dangers of tobacco consumption despite their level of education. The majority of the respondents who had tobacco-related illnesses such as lung cancer and COPD spend a significant amount of their income on their health care. Not all the smokers were aware of the dangers of tobacco consumption despite their level of education. This suggests the need for increase public awareness where both smokers and non smokers are being fully or adequately informed about the dangers or health risks of tobacco consumption.

  16. Socioeconomic variation in the financial consequences of ill health for older people with chronic diseases: a systematic review.

    Science.gov (United States)

    Valtorta, Nicole K; Hanratty, Barbara

    2013-04-01

    Chronic disease has financial consequences for older adults, but it is unclear how this varies between conditions with different disease trajectories. The aim of this study was to review evidence on the financial burden associated with cancer, heart failure or stroke in older people, to identify those most at risk of financial adversity. We systematically searched nine databases for studies with data on the illness-related financial burden (objective), or on the perception of financial hardship (subjective), of older patients and/or their informal caregivers in high-income countries. We identified thirty-eight papers published in English between 1984 and 2012. Studies fell into three categories: those reporting direct, out of pocket, costs (medical and/or non-medical); studies of the indirect costs associated with illness (such as wage or income loss); and papers reporting general financial or economic burdens secondary to illness. Three out of four studies focused on people with cancer. More affluent people had greater out of pocket costs, but were less financially burdened by illness, compared with older adults from lower socioeconomic backgrounds. Disadvantaged patients and families were more likely to report experiences of financial hardship, and spend a higher proportion of their income on all expenses related to their diagnoses. This review illustrates how little is known about the financial adversity experienced by patients with some common chronic conditions. It raises the possibility that higher expenditure by more affluent older people may be creating inequalities in how chronic illness is experienced. The development of effective strategies for financial protection at older ages will require more information on who is affected and at which point in their illness trajectory. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

  17. The importance of relational coordination and reciprocal learning for chronic illness care within primary care teams.

    Science.gov (United States)

    Noël, Polly Hitchcock; Lanham, Holly J; Palmer, Ray F; Leykum, Luci K; Parchman, Michael L

    2013-01-01

    Recent research from a complexity theory perspective suggests that implementation of complex models of care, such as the Chronic Care Model (CCM), requires strong relationships and learning capacities among primary care teams. Our primary aim was to assess the extent to which practice member perceptions of relational coordination and reciprocal learning were associated with the presence of CCM elements in community-based primary care practices. We used baseline measures from a cluster randomized controlled trial testing a practice facilitation intervention to implement the CCM and improve risk factor control for patients with Type 2 diabetes in small primary care practices. Practice members (i.e., physicians, nonphysician providers, and staff) completed baseline assessments, which included the Relational Coordination Scale, Reciprocal Learning Scale, and the Assessment of Chronic Illness Care (ACIC) survey, along with items assessing individual and clinic characteristics. To assess the association between Relational Coordination, Reciprocal Learning, and ACIC, we used a series of hierarchical linear regression models accounting for clustering of individual practice members within clinics and controlling for individual- and practice-level characteristics and tested for mediation effects. A total of 283 practice members from 39 clinics completed baseline measures. Relational Coordination scores were significantly and positively associated with ACIC scores (Model 1). When Reciprocal Learning was added, Relational Coordination remained a significant yet notably attenuated predictor of ACIC (Model 2). The mediation effect was significant (z = 9.3, p < .01); 24% of the association between Relational Coordination and ACIC scores was explained by Reciprocal Learning. Of the individual- and practice-level covariates included in Model 3, only the presence of an electronic medical record was significant; Relational Coordination and Reciprocal Learning remained significant

  18. Will talking about it make it worse? Facilitating family conversations in the context of chronic and life-shortening illness.

    Science.gov (United States)

    Imber-Black, Evan

    2014-05-01

    This article explores secrecy and openness in the context of chronic and life-shortening illness. Illustrated by clinical work with families at the Center for Families and Health at the Ackerman Institute for the Family, I examine the impact of secrecy on family relationships, including the serious relational price of silence, the danger to physical and emotional well-being, and the formation of triangles. Through the stories of four families, I demonstrate ways to facilitate greater openness when illness pertains. The benefits to families of being able to speak with candor and authenticity are shown. The article concludes with a range of questions to guide the clinician.

  19. Behavioral Effects of Upper Respiratory Tract Illnesses: A Consideration of Possible Underlying Cognitive Mechanisms

    Directory of Open Access Journals (Sweden)

    Andrew P. Smith

    2012-03-01

    Full Text Available Previous research has shown that both experimentally induced upper respiratory tract illnesses (URTIs and naturally occurring URTIs influence mood and performance. The present study investigated possible cognitive mechanisms underlying the URTI-performance changes. Those who developed a cold (N = 47 had significantly faster, but less accurate, performance than those who remained healthy (N = 54. Illness had no effect on manipulations designed to influence encoding, response organisation (stimulus-response compatilibility or response preparation. Similarly, there was no evidence that different components of working memory were impaired. Overall, the present research confirms that URTIs can have an effect on performance efficiency. Further research is required to identify the physiological and behavioral mechanisms underlying these effects.

  20. Educational intervention for parents of adolescents with chronic illness: a pre-post test pilot study.

    Science.gov (United States)

    Akre, Christina; Ramelet, Anne-Sylvie; Berchtold, André; Suris, Joan-Carles

    2015-08-01

    This pilot experimental study tested the feasibility and intended effect of an educational intervention for parents to help them assist their adolescent child with chronic illness (CI) in becoming autonomous. A two-phase pre-post pilot intervention study targeting parents of adolescents with CI was conducted. Parents were allocated to group 1 and 2 and received the four-module intervention consecutively. Intended effect was measured through online questionnaires for parents and adolescents before, at 2 months after, and at 4-6 months after the intervention. Feasibility was assessed through an evaluation questionnaire for parents. The most useful considered modules concerned the future of the adolescent and parents and social life. The most valued aspect was to exchange with other parents going through similar problems and receiving a new outlook on their relationship with their child. For parents, improvement trends appeared for shared management, parent protection, and self-efficacy, and worsening trends appeared for coping skills, parental perception of child vulnerability, and parental stress. For adolescents, improvement trends appeared for self-efficacy and parental bonding and worsening trends appeared for shared management and coping skills. Parents could benefit from peer-to-peer support and education as they support the needed autonomy development of their child. Future studies should test an online platform for parents to find peer support at all times and places.

  1. Protective connections and educational attainment among young adults with childhood-onset chronic illness.

    Science.gov (United States)

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

    2012-08-01

    Youth with childhood-onset chronic illness (COCI) are at risk of poor educational attainment. Specific protective factors that promote college graduation in this population have not been studied previously. In this study, we examine the role protective factors during adolescence play in promoting college graduation among young adults with COCI. Data were collected from 10,925 participants in the National Longitudinal Study of Adolescent Health (Add Health). Protective factors present before 18 years of age included mentoring, parent relationship quality, school connectedness, and religious attendance. College graduation was the outcome of interest assessed when participants had a mean age of 28 years. Analysis was stratified by presence of COCI. About 2% of participants (N = 230) had 1 of 4 COCIs (cancer, diabetes, epilepsy, or heart disease). All 4 protective factors were associated with college graduation for youth without COCI. In the final multivariate model, only school connectedness was associated with college graduation for youth with COCI. School connectedness is of particular importance in promoting educational attainment for youth with COCI. © 2012, American School Health Association.

  2. Hidden decay of impact after education for self-management of chronic illnesses: hypotheses.

    Science.gov (United States)

    Park, M J; Green, Joseph; Ishikawa, Hirono; Kiuchi, Takahiro

    2013-03-01

    People with chronic illnesses can benefit from self-management education. However, those benefits are said to decay over time (there is some evidence that this 'decay of impact' does occur), and the reinforcements used to prevent that decay appear to be ineffective. We hypothesize that the reinforcements appear to be ineffective because decay of impact occurs only in a subgroup of these programs' participants, so any benefits of reinforcements in that subgroup are concealed by whole-group summary statistics. We also hypothesize that reinforcements can benefit those who need them - those who would otherwise have decay. One approach to testing these hypotheses requires analysis of individual-level data, which is uncommon in this field. Some useful data could come from studies that have already been completed, but the strongest evidence will require prospectively designed tests in future trials. If the hypotheses are false, then time and resources spent on reinforcements can be saved or redirected. If the hypotheses are true, then reinforcements can be implemented with less waste and they can be made more effective. These programs can also be improved to better fit their users' needs, and there can be a new basis for evaluating the programs' effectiveness.

  3. Social networks, social capital and chronic illness self-management: a realist review.

    Science.gov (United States)

    Vassilev, Ivaylo; Rogers, Anne; Sanders, Caroline; Kennedy, Anne; Blickem, Christian; Protheroe, Joanne; Bower, Peter; Kirk, Sue; Chew-Graham, Carolyn; Morris, Rebecca

    2011-03-01

    Existing literature on the design of interventions and health policy about self-management have tended to focus on individual-centred definitions of self-care and there is growing recognition of the need to extend consideration beyond individual factors, which determine self-care, to examine wider influences such as the health service, the family and the wider social context. To explore the theoretical and empirical links between social networks, social capital and the self-care practices associated with chronic illness work and management in the context of people's everyday lives. A realist review method was used to search and appraise relevant quantitative and qualitative literature. The review findings indicate that social networks play an important part in the management of long-term conditions. We found that social networks tend to be defined narrowly and are primarily used as a way of acknowledging the significance of context. There is insufficient discussion in the literature of the specific types of networks that support or undermine self-care as well as an understanding of the processes involved. This necessitates shifting the emphasis of self-care towards community and network-centred approaches, which may also prove more appropriate for engaging people in socially and economically deprived contexts.

  4. Continuity of Care for Older Adults with Chronic Illness in China: An Exploratory Study.

    Science.gov (United States)

    Cheng, Shu-Ling; Zhao, Jin-Zhi; Bai, Jinbing; Zang, Xiao-Ying

    2015-01-01

    To explore nurses' understanding of continuity of care and existing problems in implementation of continuity of care for Chinese elders with chronic illnesses. Cross-sectional survey and semi-structured interview were performed on 15 nurses and older patients and 1,902 older patients between July 2010 and February 2011. Semi-structured interview guideline and four-section scale were used. The interviews showed nurses lacked knowledge of continuity of care, and nurses from small towns or rural areas had less understanding of continuity of care and discharge planning than nurses from central cities. Significant differences were found among patients located in referred areas in selection of medical institutions for treatment, suggesting older adults were more likely to choose general hospitals for treatment. Self-reported surveys demonstrated more than 70% of hospitalized elders chose community hospitals for further recovery after discharge from general hospitals. Chinese nurses lack knowledge of continuity of care, and significant discontinuity exists between health care provided by general hospitals, community hospitals and other institutions for elders. A further model for the development of continuity of care should be established that addresses older patients' demands and current barriers in China. © 2014 Wiley Periodicals, Inc.

  5. Self-esteem in adolescents with chronic physical illness vs. controls in Northern Russia.

    Science.gov (United States)

    Zashikhina, Anna; Hagglof, Bruno

    2014-01-01

    This work aims to study self-esteem in adolescents with diabetes, asthma and epilepsy; compare the results with those of the representative sample of healthy adolescents; and evaluate the predictive value of certain demographic, family-related, and disease-related factors on self-esteem. A total of 148 chronically ill adolescents and 301 matched healthy counterparts completed the Rosenberg Self Esteem Scale and the "I think I am" questionnaire. Adolescents' parents answered socio-economic status questions. Disease severity was evaluated by doctors of the outpatient clinic. Comparison analysis of the three disease groups revealed highest self-esteem perception in adolescents with diabetes, and lowest in adolescents with epilepsy. Unexpectedly, adolescents with diabetes scored higher than their healthy counterparts. There were no significant differences between the reports of adolescents with asthma and controls. In the epilepsy group, self-esteem was predicted mostly by disease severity and socio-economic status in diabetes and asthma groups, as well as by age and gender. The maintenance of positive self-esteem in adolescents with diabetes and asthma is a very reassuring finding. The other results of our study provide support for recognizing adolescents with epilepsy as a vulnerable group in the society. A multidisciplinary professional approach targeted on adolescents with epilepsy is needed, with focus on factors connected with maturation and gender issues.

  6. Prohibition of Persons With Mental Illness From Gun Ownership Under Tyler.

    Science.gov (United States)

    Felthous, Alan R; Swanson, Jeffrey

    2017-12-01

    The U.S. Supreme Court's Heller and McDonald decisions are the most important legal affirmations of the right of U.S. citizens to possess and bear firearms under the Second Amendment. Heller and McDonald are also significant in citing persons with mental illness as an exceptional group, whose right may be restricted by the U.S. Government. From 1968 onward, federal and state governments have enacted legislation prohibiting gun ownership by persons with mental illness who have been involuntarily committed to an institution or deemed by a legal authority to be dangerous or mentally incompetent. The U.S. Sixth Circuit Court of Appeals in its first Tyler decision ( Tyler I ) placed limitations on legislation that restricts persons with mental illness from owning firearms. In its second decision ( Tyler II ), the appellate court reversed and remanded the case to the district court with instruction to apply "intermediate scrutiny" to determine whether this statute was constitutionally applied to appellant Charles Tyler, whose right to possess firearms was restricted in 1985 after a singular involuntary commitment during a transitory mental health crisis. Although it applies only to the Sixth Circuit, Tyler could have precedential influence on gun restrictions for persons with mental illness in other jurisdictions. © 2017 American Academy of Psychiatry and the Law.

  7. Direction of the Relationship Between Acceptance of Illness and Health-Related Quality of Life in Chronic Heart Failure Patients.

    Science.gov (United States)

    Obiegło, Monika; Siennicka, Agnieszka; Jankowska, Ewa A; Danel, Dariusz P

    This study provides an in-depth insight into the relationships between illness acceptance and health-related quality of life (HRQoL) of chronic heart failure (CHF) patients. Although HRQoL is a well-established endpoint in CHF, little is known on illness acceptance in this group. The aim of this study is to critically reconsider the direction of a relationship between HRQoL and illness acceptance in CHF patients. The study included 204 patients (160 men and 44 women; mean age, 63 ± 11 years) with at least 6-month clinical evidence of CHF corresponding to New York heart Association (NYHA) classes I to IV. All the patients were examined with the Minnesota Living With Heart Failure Questionnaire (MLHFQ) and Acceptance of Illness Scale (AIS). Univariate analysis showed that the level of illness acceptance correlated inversely with patient age, and the level of HRQoL decreased with the severity of CHF (NYHA class). A relationship between illness acceptance and HRQoL was analyzed by structural equation modeling. Model 1 was based on the assumption that HRQoL is modulated by illness acceptance, and model 2 tested the opposite relationship. Both models included patient age and NYHA class as extrinsic determinants of AIS and MLHFQ scores, respectively. Model 2 proved to be well fitted (χ [df = 2] = 3.22, P = .20, root-mean-square error of approximation = 0.055). Scores on the AIS correlated inversely with age (bage->AIS = -0.15, SE = 0.05, P = .002) and HRQoL (bQoL->AIS = -0.15, SE = 0.02, P QoL = 5.75, SE = 1.97, P = .004). Patients with CHF may not accept their disease due to deteriorated HRQoL. As a result, they may be uninvolved in the therapeutic process, which leads to exacerbation of CHF, further deterioration of HRQoL, and inability to accept the illness.

  8. Affordability, availability and acceptability barriers to health care for the chronically ill: Longitudinal case studies from South Africa

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    Russell Steven

    2009-05-01

    Full Text Available Abstract Background There is an increasing burden of chronic illness in low and middle income countries, driven by TB/HIV, as well as non-communicable diseases. Few health systems are organized to meet the needs of chronically ill patients, and patients' perspectives on the difficulties of accessing care need to be better understood, particularly in poor resourced settings, to achieve this end. This paper describes the experience of poor households attempting to access chronic care in a rural area of South Africa. Methods A household survey (n = 1446 individuals was combined with qualitative longitudinal research that followed 30 case study households over 10 months. Illness narratives and diaries provided descriptive textual data of household interactions with the health system. Results In the survey 74% of reported health problems were 'chronic', 48% of which had no treatment action taken in the previous month. Amongst the case study households, of the 34 cases of chronic illness, only 21 (62% cases had an allopathic diagnosis and only 12 (35% were receiving regular treatment. Livelihoods exhausted from previous illness and death, low income, and limited social networks, prevented consultation with monthly expenditure for repeated consultations as high as 60% of income. Interrupted drug supplies, insufficient clinical services at the clinic level necessitating referral, and a lack of ambulances further hampered access to care. Poor provider-patient interaction led to inadequate understanding of illness, inappropriate treatment action, 'healer shopping', and at times a break down in cooperation, with the patient 'giving up' on the public health system. However, productive patient-provider interactions not only facilitated appropriate treatment action but enabled patients to justify their need for financial assistance to family and neighbours, and so access care. In addition, patients and their families with understanding of a disease became a

  9. Spirituality, Religion, and Health: The Role of Communication, Appraisals, and Coping for Individuals Living with Chronic Illness.

    Science.gov (United States)

    Rafferty, Katherine A; Billig, Ashley K; Mosack, Katie E

    2015-10-01

    Currently, 10% of Americans are living with a chronic illness. One coping mechanism for individuals living with chronic illness is religion and/or spiritual (R/S). To better explicate the relationship among R/S and psychological well-being, we conceptualize R/S as an interpersonal process involving conversations that may facilitate positive reappraisals. We use a mixed-method approach from data collected from 106 participants, involving a content analysis of R/S conversations and test Burleson and Goldsmith's (Handbook of communication and emotion: research, theory, applications, and contexts, Academic Press, San Diego, pp 245-280, 1998) appraisal-based comforting model. Partial support for the model was found. In addition, the majority of R/S conversations were considered positive, helpful, and supportive. Theoretical and practical implications are discussed.

  10. Adiponectin Potentially Contributes to the Antidepressive Effects of Baduanjin Qigong Exercise in Women with Chronic Fatigue Syndrome-Like Illness

    OpenAIRE

    Chan, Jessie S. M.; Li, Ang; Ng, Siu-Man; Ho, Rainbow T. H.; Xu, Aimin; Yao, Tzy-Jyun; Wang, Xiao-Min; So, Kwok-Fai; Chan, Cecilia L. W.

    2017-01-01

    Our recent study demonstrates that adiponectin signaling plays a significant role in mediating physical exercise-exerted effects on hippocampal neurogenesis and antidepression in mice. Whether the findings can be translated to humans remains unknown. This study aimed to investigate the effects of Baduanjin Qigong exercise on adiponectin and to evaluate whether adiponectin is involved in the antidepressive effects of Qigong exercise on chronic fatigue syndrome (CFS)-like illness. This is a ran...

  11. On the conduct of homelessness research: lessons from a qualitative study of women diagnosed with chronic mental illness.

    Science.gov (United States)

    Taylor, C

    1993-01-01

    This article presents a summary of the author's study of the lived experiences of homeless women diagnosed with chronic mental illness. Strategies found to be effective in the conduct of the study are highlighted. Issues and problems related to population access, sampling, data generation, and difficult situations in the field are discussed with proposed solutions. The resolution of nurse helper/nurse researcher role conflicts is addressed.

  12. An exploratory study of the personal health records adoption model in the older adult with chronic illness

    Directory of Open Access Journals (Sweden)

    Melanie D Logue

    2013-05-01

    Full Text Available Background Despite international efforts moving toward integrated care using health information technologies and the potential of electronic PHRs to help us better coordinate patient-centered care, PHR adoption in the United States remains low among patients who have been offered free access to them from private-sector companies. If older adult stand to benefit from the use of PHRs for its usefulness in self-managing chronic illness, why have they not been more readily adopted? Since the chronically ill older adult has unique circumstances that impact their decision to participate in self-directed care, a theoretical framework to help understand factors that influence the adoption of PHRs is important. Here we describe the results of an exploratory study that provided an initial test of such a framework.Methods The study used a descriptive survey methodology with 38 older adults. The survey questionnaire asked about the personal barriers and facilitators associated with personal health record adoption and included items measuring each of the PHRAM’s four interacting factors (environmental factors, personal factors, technology factors, and self-management, and the resulting behavioural outcome.Results Younger seniors had a more positive attitude toward computers, knew what health resources were available on the internet, agreed that they had the resources in place to use PHRs, and would be more influenced by a family member than a healthcare provider to use them. Conversely, older seniors reported less confidence in their ability to use Internet-based PHRs and did not perceive that they had the resources in place to use them.Conclusions The results of this study indicated that personal, environmental, technology, chronic illness, and behavioral factors operated concurrently as personal barriers and/or facilitators to the adoption of PHRs among the older adult with chronic illness. These factors cannot be isolated because the person commonly

  13. Perceived Exercise Self-Efficacy, Benefits and Barriers, and Commitment to a Plan for Exercise among Jordanians with Chronic Illnesses.

    Science.gov (United States)

    Darawad, Muhammad W; Khalil, Amani A; Hamdan-Mansour, Ayman M; Nofal, Basema M

    2016-11-01

    To explore Jordanian chronic illnesses patients' perceived exercise self-efficacy, benefits and barriers, and commitment to exercise planning, and to assess the relationship between those variables. Descriptive cross-sectional design. Data were collected from a convenience sample of 402 outpatient Jordanians with chronic illnesses, using Exercise Self-Efficacy Scale, Exercise Benefits and Barriers Scale, and Commitment to a Plan for Exercise Scale. The average BMI was 28.3, and exercise period 3.2 hours/ week. Participants reported moderate perceived self-efficacy (M= 47.5%, SD= 11.7), commitment to exercise planning (M=2.0/3, SD=0.3), exercise barriers (M=2.4/4, SD=0.3), and benefits (M=2.3/4, SD=0.3). Commitment to exercise planning had a significant correlation with barriers (r=0.11) and benefits (r=0.10). Self-efficacy was not found to correlate with other variables. Even though participants reported higher perceived self-efficacy and commitment to exercise plan than that reported in literature, they were found to be overweight and inactive, which indicates the importance of such study. Exercise education programs are needed taking into considerations patients' individual differences. However, the broad grouping of diseases may not produce a homogenous sample, for which disease categories are recommended in future studies. Patients with chronic illness need more encouragement to engage themselves in exercise practices. Exercise educational program for patients with chronic illnesses should consider patients' reported exercise benefits and barriers. © 2014 Association of Rehabilitation Nurses.

  14. Efficacy of inosine pranobex in frequently ill children with chronic Epstein–Barr virus infection: randomized study

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    E.N. Simovanyan

    2011-01-01

    Full Text Available High incidence of acute respiratory infections (ARI in immunocompromised frequently ill children with chronic Epstein–Barr infection forces the prescription of drugs with complex antivirus and immunocorrecting effect. The objective: to study the efficacy of inosine pranobex (Isoprinosine in treatment of active Epstein–Barr virus infection in frequently ill children. Methods: patients were randomized in group of standard treatment (n = 24 and standard treatment + inosine pranobex 50 mg/kg of body weight divided to 3–4 parts daily (3 courses of 10 days every other 10 days. Primary efficacy criterion was the incidence of ARI episodes during 12 months of observation. Results: the treatment with inosine pranobex resulted in decrease of incidence (4 and 25% and duration of ARI (5.6 ± 1.2 and 8.8 ± 3.3 days compared to standard treatment. Besides, inosine pranobex decreased the frequency of lymphoproliferation, arthralgic and cardiac syndromes, favored to rapid elimination of serologic markers of Epstein–Barr virus replication and normalization of blood concentrations of interferon _ and interleukine 4. Side effects of treatment with inosine pranobex were not registered. Conclusion: inosine pranobex is efficient and safe drug in treatment of active form of chronic Epstein–Barr virus infection in frequently ill children.Key words: frequently ill children, Epstein–Barr virus, inosine pranobex, treatment.

  15. Psychological complications of childhood chronic physical illness in Nigerian children and their mothers: the implication for developing pediatric liaison services

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    Meremikwu Martin M

    2008-11-01

    Full Text Available Abstract Background Pediatric liaison services attending to the psychological health needs of children with chronic physical illness are limited or virtually non-existent in Nigeria and most sub-Saharan African countries, and psychological problems complicate chronic physical illness in these children and their mothers. There exist needs to bring into focus the public health importance of developing liaison services to meet the psychological health needs of children who suffer from chronic physical illness in this environment. Sickle cell disease (SCD and juvenile diabetes mellitus (JDM are among the most common chronic physical health conditions in Nigerian children. This study compared the prevalence and pattern of emotional disorders and suicidal behavior among Nigerian children with SCD, JDM and a group of healthy children. Psychological distress in the mothers of these children that suffer chronic physical illness was also compared with psychological distress in mothers of healthy control children. Methods Forty-five children aged 9 to 17 years were selected for each group of SCD, JDM and controls. The SCD and JDM groups were selected by consecutive clinic attendance and the healthy children who met the inclusion criteria were selected from neighboring schools. The Youth version of the Computerized Diagnostic Interview Schedule for Children, version IV (C- DISC- IV was used to assess for diagnosis of emotional disorders in these children. Twelve-item General Health Questionnaire (GHQ – 12 was used to assess for psychological distress in mothers of these children and healthy control children. Results Children with JDM were significantly more likely to experience DSM – IV emotional disorders than children with SCD and the healthy group (p = 0.005, while children with JDM and SCD were more likely to have 'intermediate diagnoses' of emotional disorders (p = 0.0024. Children with SCD and JDM had higher rates of suicidal ideation when

  16. Burden of chronic illness and associated disabilities in Bangladesh: Evidence from the Household Income and Expenditure Survey

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    Marufa Sultana

    2017-06-01

    Full Text Available Objective: The purpose of this study was to investigate the distribution of chronic illness and associated disability, out-of-pocket payment (OOPP, and other related factors using survey data from Bangladesh. Methods: This study analyzed Bangladesh Household Income and Expenditure Survey data that include socio-economic and demographic data, such as consumption, expenditures, and assets, along with information regarding chronic illness and disability. Multiple linear regression models were used to identify factors significantly associated with OOPP. Furthermore, a binary Logistic regression model was employed to assess the association of the explanatory variables with disability status. Results: A higher prevalence of chronic illness was found for those with chronic gastritis (18.70%, and 41.92% of the population had at least one side disability. The average OOPP healthcare expenditure for chronic illness was estimated to be US$7.59. Higher OOPP was found among the upper 2 wealth quintiles. Overall OOPP health expenditure was significantly higher among individuals with an associated disability (P < 0.001. The likelihood of having an associated disability was higher among those individuals with a lower education level (OR = 2.36, 95% CI: 1.95–4.06, those who not earning an income (OR = 2.85, 95% CI: 2.53–3.21, those who did not seek care (OR = 1.73, 95% CI: 1.57–1.90, those who sought care from a pharmacy (OR = 8.91, 95% CI: 7.38–10.74, and those in the lowest wealth quintile (OR = 7.21, 95% CI: 6.41–8.12. Conclusions: The high OOPP illustrates the necessity of financial risk protection for the population at low socio-economic status. Therefore, we recommend that the government strengthen the healthcare system with appropriate support directed to the rural and elderly populations. Keywords: Chronic illness, Disability, Out-of-pocket payments, Burden, Bangladesh

  17. Report on Honduras: ripples in the pond--the financial crisis and remittances to chronically ill patients in Honduras.

    Science.gov (United States)

    Piette, John D; Mendoza-Avelares, Milton O; Chess, Laura; Milton, Evan C; Matiz Reyes, Armando; Rodriguez-Saldaña, Joel

    2012-01-01

    The U.S. financial crisis has affected employment opportunities for Latino immigrants, and this could affect their ability to send financial assistance, or "remittances", to chronically ill family members in their home country. In a cross-sectional survey of 624 chronically ill adults conducted in Honduras between June and August 2009, respondents reported their receipt of remittances, health service use, and cost-related access barriers. Fifty-four percent of respondents reported relatives living outside the country, and of this group, 66 percent (37% of the overall sample) received remittances. Seventy-four percent of respondents receiving remittances reported a decrease over the prior year, mostly due to job losses among their relatives abroad. Respondents reporting reductions in remittances received significantly less per month, on average, than those without a reduction (US $170 vs. $234; p = 0.01). In multivariate models, respondents experiencing a reduction in remittances used fewer health services and medications due to cost concerns. Remittance payments from relatives resident in the United States are a major source of income for chronically ill individuals in Latin America. Most recipients of remittances reported a reduction during the financial downturn that affected their access to care.

  18. "Because somebody cared about me. That's how it changed things": homeless, chronically ill patients' perspectives on case management.

    Science.gov (United States)

    Davis, Elizabeth; Tamayo, Aracely; Fernandez, Alicia

    2012-01-01

    Case management programs for chronically ill, homeless people improve health and resource utilization by linking patients with case managers focused on improving management of medical and psychosocial problems. Little is known about participants' perspectives on case management interventions. This qualitative study used in-depth, one-on-one interviews to understand the impact of a case management program from the perspective of participants. A standardized interview guide with open-ended questions explored experiences with the case management program and feelings about readiness to leave the program. FOUR RECURRENT THEMES EMERGED: (1) Participants described profound social isolation prior to case management program enrollment; (2) Participants perceived that caring personal relationships with case managers were key to the program; (3) Participants valued assistance with navigating medical and social systems; and (4) Participants perceived that their health improved through both the interpersonal and the practical aspects of case management. Chronically ill, homeless people enrolled in a case management program perceived that social support from case managers resulted in improved health. Programs for this population should consider explicitly including comprehensive social support interventions. Further research on case management should explore the impact of different types of social support on outcomes for homeless chronically ill patients.

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

    Science.gov (United States)

    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.

  20. Quality of Life as Medicine: A Pilot Studyof Patients with Chronic Illness and Pain

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    Soren Ventegodt

    2003-01-01

    Full Text Available An intensive 5-day quality-of-life (QoL session was constructed based on a psychosomatic model. The session was comprised of teaching on philosophy of life, psychotherapy, and body therapy. The three elements were put together in such a way that they mutually supported each other. The synergy attained was considerable. The pilot study demonstrated that in the course of only 1 week, patients had time to revise essential life-denying views and to integrate important, unfinished life events involving negative feelings. Consequently, the patients became more present in the body’s blocked-off areas and subjectively healthier. Nineteen persons with chronic illness and pain (fibromyalgia, chronic tiredness, whiplash, mild depression, and problems involving pain in arms and legs including osteoarthritis, and unemployed for 5–7 years attended the course. In the week before and after the 5-day course, the participants completed the validated SEQOL (Self-Evaluation of Quality of Life Questionnaire including questions on self-evaluated health and the unvalidated “Self-Evaluation of Working-Life Quality Questionnaire” (SEQWL. This pilot study was without a control group or clinical control. As far as diagnoses were concerned, the group was inhomogeneous. Common for the group was a low QoL, poor quality of working life QWL, and numerous health problems. The study showed an 11.2% improvement in QoL (p < 0.05, a 6.3% improvement in QWL (p < 0.05, and a 12.0% improvement in self-perceived physical health (p = 0.08. There was a 17.3% improvement in self-perceived psychological health (p < 0.05 and satisfaction with health in general improved by 21.4% (p < 0.05. Symptoms like pain were almost halved and several of the participants were free of pain for the first time in years. In conclusion it seemed that the combination of training in philosophy of life, psychotherapy, and body therapy can give patients a large, fast, and efficient improvement in QoL, QWL

  1. Prevalence of Chronic Illness and Health Seeking Behaviour in Malaysian Population: Results from the Third National Health Morbidity Survey (NHMS III) 2006.

    Science.gov (United States)

    Amal, N M; Paramesarvathy, R; Tee, G H; Gurpreet, K; Karuthan, C

    2011-03-01

    The third National Health Morbidity Survey was conducted in 2006 on a nationally representative sample of population in Malaysia in order to obtain community-based data and information on the prevalence of chronic illness. Of 57,500 eligible respondents 56710 (98.6%) participated in the study. Estimated overall prevalence of chronic illness in the Malaysian population within a recall period of one year was 15.5% (95% CI 15.1% - 15.9%). Chronic illness was reported significantly higher among the females, 16.8% (16.3 - 17.3). The most common chronic illness was hypertension (7.9%, 7.6 - 8.2), followed by diabetes mellitus (4.0%, 3.8 - 4.2) and highest reported by the Indians (19.7%, 18.4 - 21.0). Among the respondents who had sought treatment for chronic illness from government health facilities, Malays (65.8%) and those with monthly household income of less than RM400 (76.6%) were the highest. Chinese (44.5%) and those with household income of RM5000 and above (54.3%) were the highest groups who sought treatment from the private health facilities. Most of the respondents reported mild illness was the main reason for not seeking treatment for their chronic illness. It is hoped that the results of this survey will help the Ministry of Health Malaysia to enhance health programmes and planning resource allocation in order to improve health status of the population.

  2. Burden of treatment for chronic illness: a concept analysis and review of the literature.

    Science.gov (United States)

    Sav, Adem; King, Michelle A; Whitty, Jennifer A; Kendall, Elizabeth; McMillan, Sara S; Kelly, Fiona; Hunter, Beth; Wheeler, Amanda J

    2015-06-01

    Treatment burden, the burden associated with the treatment and management of chronic illness, has not yet been well articulated. Using Rodgers' (1989, Journal of Advanced Nursing, 14, 330-335) method of concept analysis, this review describes the ways in which treatment burden has been conceptualized to define the concept and to develop a framework for understanding its attributes, antecedents and consequences. Leading databases were searched electronically between the years 2002 and 2011. To ensure the review focused on actual observations of the concept of interest, articles that did not measure treatment burden (either qualitatively or quantitatively) were excluded. An inductive approach was used to identify themes related to the concept of treatment burden. Thirty articles, identified from 1557 abstracts, were included in the review. The attributes of treatment burden include burden as a dynamic process, as a multidimensional concept, and comprising of both subjective and objective elements. Prominent predisposing factors (antecedents) include the person's age and gender, their family circumstances, possible comorbidity, high use of medications, characteristics of treatment and their relationship with their health-care provider. The most dominant consequences are poor health and well-being, non-adherence to treatment, ineffective resource use and burden on significant others. Furthermore, many of these consequences can also become antecedents, reflecting the cyclic and dynamic nature of treatment burden. The findings underscore the need for researchers and health-care professionals to engage in collaborative discussions and make cooperative efforts to help alleviate treatment burden and tailor treatment regimens to the realities of people's daily lives. © 2013 Blackwell Publishing Ltd.

  3. Health Status of Healthcare Professionals Working in an Institute for Chronically Ill Psychiatric Patients

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    Nagyváradi Katalin

    2015-06-01

    Full Text Available Several research works in the related international literature on sociology and health sciences deal with the state of health in one selected population. In these studies, the chosen sample is often connected with special jobs, especially with healthcare professionals and their working conditions. These studies predominantly examine the self-rated subjective health status using questionnaires. There are others that assess the state of health based not only on self-rated subjective indicators, but also using objective data gained by measuring. Considering the international experiences, we chose a special population in our research – healthcare professionals working in an institute for chronically ill psychiatric patients. Our choice was influenced by the fact that we wanted to include their unique working conditions when exploring and assessing their health status. Moreover, our approach was to assess the objective state of health alongside the subjective factors, as our hypothesis was that the majority of the indicators presumably coincided. The data were collected with the help of three questionnaires and some indicators of the objective health statuses were measured. The findings were processed using the SPSS 17.0 mathematical-statistical software package. Following the descriptive statistics, we applied hierarchic cluster-analysis based on results of the WHOQOLD-BREF26 life-quality questionnaire, the WHO WBI-5 Well Being Index, and on the body composition analysis. The results show the objective and subjective health status of population and the factors that influenced it; the working conditions and the interpersonal contacts in the workplace. The conclusion was that in the examined population the subjective and objective health status doesn’t coincide.

  4. Guidelines for the Gamification of Self-Management of Chronic Illnesses: Multimethod Study.

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    AlMarshedi, Alaa; Wills, Gary; Ranchhod, Ashok

    2017-05-12

    Gamification is the use of game elements and techniques in nongaming contexts. The use of gamification in health care is receiving a great deal of attention in both academic research and the industry. However, it can be noticed that many gamification apps in health care do not follow any standardized guidelines. This research aims to (1) present a set of guidelines based on the validated framework the Wheel of Sukr and (2) assess the guidelines through expert interviews and focus group sessions with developers. Expert interviews (N=6) were conducted to assess the content of the guidelines and that they reflect the Wheel of Sukr. In addition, the guidelines were assessed by developers (N=15) in 5 focus group sessions, where each group had an average of 3 developers. The guidelines received support from the experts. By the end of the sixth interview, it was determined that a saturation point was reached. Experts agreed that the guidelines accurately reflect the framework the Wheel of Sukr and that developers can potentially use them to create gamified self-management apps for chronic illnesses. Moreover, the guidelines were welcomed by developers who participated in the focus group sessions. They found the guidelines to be clear, useful, and implementable. Also, they were able to suggest many ways of gamifying a nongamified self-management app when they were presented with one. The findings suggest that the guidelines introduced in this research are clear, useful, and ready to be implemented for the creation of self-management apps that use the notion of gamification as described in the Wheel of Sukr framework. The guidelines are now ready to be practically tested. Further practical studies of the effectiveness of each element in the guidelines are to be carried out. ©Alaa AlMarshedi, Gary Wills, Ashok Ranchhod. Originally published in JMIR Serious Games (http://games.jmir.org), 12.05.2017.

  5. Nursing patients with chronic critical illness and their families: a qualitative study.

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    Leung, Doris; Blastorah, Margaret; Nusdorfer, Linda; Jeffs, Angie; Jung, Judy; Howell, Doris; Fillion, Lise; Rose, Louise

    2017-07-01

    chronic critical illness (CCI) is a complex syndrome with a high risk of dying in hospital. Intensive care unit nurses are well-positioned to lead conversations integrating palliative and end-of-life care, yet have reported limited involvement. To generate further understanding of nurses' experiences of patients with CCI and their families. This qualitative study followed Thorne's interpretive description methods. In 2012, 16 intensive care unit nurses from one academic hospital participated in interviews. Our primary theme was that of internal tension generated through participants' knowledge of patients' anticipated and protracted dying, while wanting to shield families from suffering. This internal tension resulted from responsibilities to preserve hope for patients and families, while at the same time wanting to provide them prognostic information. Participants experienced challenges of: (i) preserving family trust, (ii) determining when and how to engage families in discussions and (iii) providing possibilities of a 'good' death. A secondary theme described constraints to acting on their insights because of interprofessional team dynamics or limited communication, within the team and with the family. Internal tension, as experienced by participants reflects the challenges of transition from acute to palliation and end-of-life care, made more complex in CCI, because of its poorly defined terminal stage. Nurses' ability to manage the complex process of supporting hope while gradually providing information to build family understanding of CCI highlights their central role in facilitating what and how prognostic information is given, while managing the emotional implications and family response. To better support nurses do this, we advocate for formal structures enabling nurses to participate in decision-making regarding timing of transitions using palliation and end-of-life care. © 2015 British Association of Critical Care Nurses.

  6. Hematopoietic tissue repair under chronic low daily dose irradiation

    Science.gov (United States)

    Seed, T. M.

    The capacity of the hematopoietic system to repair constantly accruing cellular damage under chronic, low daily dose gamma irradiation is essential for the maintenance of a functional hematopoietic system, and, in turn, long term survival. In certain individuals, however, such continuous cycles of damage and repair provide an essential inductive environment for selected types of hematopathologies, e.g., myeloid leukemia (ML). In our laboratory we have been studying temporal and causal relationships between hematopoietic capacity, associated repair functions, and propensities for hematologic disease in canines under variable levels of chronic radiation stress (0.3-26.3 cGy d^-1). Results indicate that the maximum exposure rate tolerated by the hematopoietic system is highly individual-specific (three major responding subgroups identified) and is based largely on the degree to which repair capacity, and, in turn, hematopoietic restoration, is augmented under chronic exposure. In low-tolerance individuals (prone to aplastic anemia, subgroup 1), the failure to augment basic repair functions seemingly results in a progressive accumulation of genetic and cellular damage within vital progenitorial marrow compartments (particularly marked within erythroid compartments) that results in loss of reproductive capacity and ultimately in collapse of the hematopoietic system. The high-tolerance individuals (radioaccommodated and either prone- or not prone to ML, subgroup 2 & 3) appear to minimize the accumulating damage effect of daily exposures by extending repair functions, which preserves reproductive integrity and fosters regenerative hematopoietic responses. As the strength of the regenerative response manifests the extent of repair augmentation, the relatively strong response of high-tolerance individuals progressing to patent ML suggests an insufficiency of repair quality rather than repair quantity. The kinetics of these repair-mediated, regenerative hematopoietic

  7. Aerobic and resistance exercise training program intervention for enhancing gait function in elderly and chronically ill Taiwanese patients.

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    Chen, M S; Lin, T C; Jiang, B C

    2015-08-01

    This study aimed to develop an effective exercise training program for enhancing the postural stability and gait function of chronically ill patients to avoid falls. Pre training-post-training. Analyses were limited to those randomized to the exercise intervention. The participants were chronically ill patients over 45 years old (47-89 years), of whom 25 completed the 12-week training regimen and assessment in the exercise group, whereas 29 completed the assessment in the control group, suffering from cardiovascular disease, diabetes mellitus, or osteoporosis. The average age of the participants was 67.56 ± 10.70 years in the intervention group. All patients in this study signed institutional review board (IRB) agreements before participating (IRB approval no: FEMH-IRB-101029-E, v. 02, date: 20120429). The results revealed the beneficial effects of regular aerobic and resistance training, which improved in elderly, chronically ill patients. According to our data, most of the gait function measurements exhibited significant differences between the exercise group and control group. The duration of the 'timed up-and-go' test decreased from 7.67 s to 6.76 s (P = 0.00013), and the 'the base of support area' increased from 392.0 cm(2) to 433.2 cm(2) (P = 0.0088). Women attained more significant differences than men in the exercise and control groups (P = 0.0008), and the participants aged 45-65 years had a more satisfactory outcome than those aged > 65 years (P = 0.0109). Regular exercise regimens, such as aerobic, resistance or combination exercise training, enhance the gait function and sense of postural stability in elderly, chronically ill patients. Younger patients attained more positive results than older patients, and women attained more positive results than men. Regular exercise is a means of preventing falls; thus, the government and hospitals should increase promotional measures in aging communities to encourage regular exercise among elderly, chronically ill

  8. The influence of frailty syndrome on acceptance of illness in elderly patients with chronic obstructive pulmonary disease

    Directory of Open Access Journals (Sweden)

    Uchmanowicz I

    2016-09-01

    Full Text Available Izabella Uchmanowicz,1 Beata Jankowska-Polanska,1 Mariusz Chabowski,2 Bartosz Uchmanowicz,1 Andrzej M Fal3 1Department of Clinical Nursing, Faculty of Health Science, Wroclaw Medical University, 2Division of Nursing in Surgical Procedures, Department of Clinical Nursing, Faculty of Health Science, Wroclaw Medical University, 3Department of Healthcare Organisation and Economics, National Institute of Public Health, National Institute of Hygiene, Warsaw, Poland Abstract: COPD is one of the most debilitating diseases. Frailty syndrome and advanced age may decrease the acceptance of illness, quality of life, and worsen health conditions in these patients, as well as lead to an increase in health care expenses. The aim of the study was to assess how the level of frailty affects the acceptance of illness in elderly patients with COPD. We also aimed to evaluate the associations between sociodemographic and clinical factors and the level of acceptance of illness, anxiety, and frailty in this group of patients. The study included 102 COPD patients with a mean age of 63.2 (standard deviation =6.5 years and grades I (3%, II (37%, III (52%, and IV (8% by Global Initiative for Chronic Obstructive Lung Disease. The Polish versions of the Acceptance of Illness Scale and Tilburg frailty indicator were used. Frailty syndrome was found in 77 (75.5% patients, with an average score of 7.42 (standard deviation =2.24. Coexisting diseases such as hypertension (46.07%, coronary artery disease (32.35%, heart failure (28.43%, diabetes (18.63%, and heart arrhythmia (9.8% were found among the subjects. The overall level of acceptance of illness was 20.6 (standard deviation =7.62. A lower level of acceptance of illness was associated with a higher level of frailty, especially in the physical and social domain. Elderly patients with severe COPD are more prone to frailty and decreased acceptance of their disease in comparison to patients with other chronic diseases

  9. Interpretation of Illness in Patients with Chronic Diseases from Poland and Their Associations with Spirituality, Life Satisfaction, and Escape from Illness—Results from a Cross Sectional Study

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    Arndt Büssing

    2015-06-01

    Full Text Available To analyse how patients with chronic diseases would interpret their illness, and how these interpretations were related to spirituality/religiosity, life satisfaction, and escape from illness, we performed a cross-sectional survey among patients with chronic diseases from Poland (n = 275 using standardized questionnaires. Illness was interpreted mostly as an Adverse Interruption of life (61%, Threat/Enemy (50%, Challenge (42%, and rarely as a Punishment (8%. Regression analyses revealed that escape from illness was the best predictor of negative disease perceptions and also strategy associated disease perceptions, and a negative predictor of illness as something of Value, while Value was predicted best by specific spiritual issues. Patients’ religious Trust and partner status were among the significant contributors to their life satisfaction. Data show that specific dimensions of spirituality are important predictors for patients’ interpretation of illness. Particularly the fatalistic negative perceptions could be indicators that patients may require further psychological assistance to cope with their burden.

  10. Perceptions of Smartphone User-Centered Mobile Health Tracking Apps Across Various Chronic Illness Populations: An Integrative Review.

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    Birkhoff, Susan D; Smeltzer, Suzanne C

    2017-07-01

    This integrative review presents a synthesis of the current qualitative research addressing the motivating factors, usability, and experiences of mobile health tracking applications (apps) across various chronic disease populations. Integrative review of the literature. Databases used to conduct this integrative review included: PubMed Plus, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Google Scholar, Science Direct, and EBSCO megafile. The following search terms were used in all five databases: smartphone apps, apps, mHealth, eHealth, mobile health apps, health tracking apps, user-centered apps, wireless technology, engagement, qualitative, and usability. The initial literature review yielded 689 results. Once inclusion and exclusion criteria were employed, 11 studies met the criteria set forth for this review. The reviewed studies provided insight into users' perceptions, experiences, and motivations to incorporate smartphone mobile health apps into their daily lives when living with chronic illnesses. This review indicates the growing interest in user-centered mobile health tracking apps, but with little understanding of motivating factors that foster sustained app use. Mobile health tracking apps targeted to users with chronic conditions need to have a high level of usability in order to motivate users to sustain engagement with their mobile health tracking app. User-centered mobile health tracking app technology is being used with increasing frequency to potentially provide individualized support to chronic illness populations. © 2017 Sigma Theta Tau International.

  11. Self-Regulatory Fatigue: A Missing Link in Understanding Fibromyalgia and Other Chronic MultiSymptom Illnesses.

    Science.gov (United States)

    Nes, Lise Solberg; Ehlers, Shawna L; Whipple, Mary O; Vincent, Ann

    2017-04-01

    Patients with chronic multisymptom illnesses such as fibromyalgia syndrome (FMS) are experiencing a multitude of physical and mental challenges. Facing such challenges may drain capacity to self-regulate, and research suggests patients with these illnesses may experience self-regulatory fatigue (SRF). This study sought to examine whether SRF can be associated with quality of life (QoL) in patients with FMS. Patients (N = 258) diagnosed with FMS completed self-report measures related to demographics, SRF (Self-Regulatory Fatigue 18 [SRF-18]), anxiety (Generalized Anxiety Disorder questionnaire [GAD-7]), depression (Patient Health Questionnaire [PHQ-9]), physical fatigue (Multidimensional Fatigue Inventory [MFI]), symptoms related to FMS (Fibromyalgia Impact Questionnaire [FIQ]), and QoL (36-Item Short-Form Health Survey [SF-36]). Hierarchical regressions showed higher SRF to be associated with lower QoL in terms of lower overall physical QoL, with subscales related to physical functioning, role limitations-physical, bodily pain, and general health (all P's > 0.001), as well as lower overall mental QoL, with subscales related to vitality, social functioning, role limitations-emotional, and mental health (all P's > 0.001). Including traditional predictors such as anxiety, depression, physical fatigue, and FMS-related symptoms as covariates in the analyses reduced the link between SRF and QoL somewhat, but the associations remained generally strong, particularly for SRF and mental QoL. This is the first study to show higher SRF relating to lower QoL for patients with FMS. Results suggest that SRF is distinct from anxiety, depression, and fatigue, and predicts QoL above and beyond these traditional factors in the area of chronic multisymptom illnesses such as FMS. SRF may be a "missing link" in understanding the complex nature of chronic multisymptom illnesses. © 2016 World Institute of Pain.

  12. Learning to Live with Chronic Illness in Later Life: Empowering Myself

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    Withnall, Alexandra

    2017-01-01

    Type 2 Diabetes is both an incurable illness and a hidden disability that has reached epidemic proportions on a global scale. It has obviously spawned a huge clinical literature, but no scholarly accounts of learning to live with the illness on a daily basis from a feminist perspective. As an older woman, I have made use of a somewhat…

  13. Assessing Chronic Illness Care Education (ACIC-E): a tool for tracking educational re-design for improving chronic care education.

    Science.gov (United States)

    Bowen, Judith L; Provost, Lloyd; Stevens, David P; Johnson, Julie K; Woods, Donna M; Sixta, Connie S; Wagner, Edward H

    2010-09-01

    Recent Breakthrough Series Collaboratives have focused on improving chronic illness care, but few have included academic practices, and none have specifically targeted residency education in parallel with improving clinical care. Tools are available for assessing progress with clinical improvements, but no similar instruments have been developed for monitoring educational improvements for chronic care education. To design a survey to assist teaching practices with identifying curricular gaps in chronic care education and monitor efforts to address those gaps. During a national academic chronic care collaborative, we used an iterative method to develop and pilot test a survey instrument modeled after the Assessing Chronic Illness Care (ACIC). We implemented this instrument, the ACIC-Education, in a second collaborative and assessed the relationship of survey results with reported educational measures. A combined 57 self-selected teams from 37 teaching hospitals enrolled in one of two collaboratives. We used descriptive statistics to report mean ACIC-E scores and educational measurement results, and Pearson's test for correlation between the final ACIC-E score and reported educational measures. A total of 29 teams from the national collaborative and 15 teams from the second collaborative in California completed the final ACIC-E. The instrument measured progress on all sub-scales of the Chronic Care Model. Fourteen California teams (70%) reported using two to six education measures (mean 4.3). The relationship between the final survey results and the number of educational measures reported was weak (R(2) = 0.06, p = 0.376), but improved when a single outlier was removed (R(2) = 0.37, p = 0.022). The ACIC-E instrument proved feasible to complete. Participating teams, on average, recorded modest improvement in all areas measured by the instrument over the duration of the collaboratives. The relationship between the final ACIC-E score and the number of educational

  14. Negotiating health and chronic illness in Filipino-Australians: a qualitative study with implications for health promotion.

    Science.gov (United States)

    Maneze, Della; Ramjan, Lucie; DiGiacomo, Michelle; Everett, Bronwyn; Davidson, Patricia Mary; Salamonson, Yenna

    2017-03-08

    In spite of the healthy immigrant effect, the prevalence of lifestyle-related chronic diseases among migrants is reported to approximate that of the host country with longer duration of stay. For example, higher rates of chronic diseases such as Type 2 diabetes and hypertension have been observed among Filipino migrants and these have been linked to acculturation. The aim of this study was to explore the experiences of Filipino-Australian migrants in managing their chronic health conditions in a Western host country. This paper reports on qualitative findings of a mixed methods study that used an explanatory sequential design. Nine focus group discussions were undertaken with 58 Filipino-Australian migrants with chronic disease. Thematic analysis was undertaken using a five-stage general purpose thematic framework ensuring that themes closely identified key participants' experiences . Findings revealed that health benefits provided by the health system in Australia were considered advantageous. However, a lack of social and instrumental support compounded isolation and disempowerment, limiting self-management strategies for chronic illnesses. Cultural beliefs and practices influenced their knowledge, attitude to and management of chronic disease, which health service providers overlooked because of perceived acculturation and English language skills. Overall this study has clearly identified recognition of cultural beliefs, language needs and support as three core needs of Filipino-Australian migrants with the elderly the most vulnerable. This paper highlights that self-management of chronic disease among elderly Filipino immigrants may be adversely affected by host language difficulties, a lack of social support and cultural issues, impacting on access to services, health-seeking behaviours and participation in health promotion initiatives. Language, culture-specific health interventions and resources and enhancing social support are likely important strategies in

  15. Integrated healthcare for chronically ill. Reflections on the gap between science and practice and how to bridge the gap

    Directory of Open Access Journals (Sweden)

    Wilma van der Vlegel-Brouwer

    2013-05-01

    Full Text Available Integrated care offers an opportunity to address healthcare efficiency and effectiveness concerns and is especially relevant for elderly patients with different chronic illnesses.In current care standards for chronic care focus is often on one disease. The chronic care model (CCM is used as the basis of integrated care programs. It identifies essential components that encourage high-quality chronic disease care, involving the community and health system and including self-management support, delivery system design, decision support, and clinical information systems. Improvements in those interrelated components can produce system reform in which informed, activated patients interact with prepared, proactive practice teams. There is however a lack of research evidence for the impact of the chronic care model as a full model.Integrated care programmes have widely varying definitions and components and failure to recognize these variations leads to inappropriate conclusions about the effectiveness of these programmes and to inappropriate application of research results. It seems important to carefully consider the type and amount of data that are collected within the disease management programmes for several purposes, as well as the methods of data collection.Understanding and changing the behavior of complex dynamic chronic care system requires an appreciation of its key patterns, leverage points and constraints. A different theoretical framework, that embraces complexity, is required. Research should be design-based, context bound and address relationships among agents in order to provide solutions that address locally defined demands and circumstances.

  16. Medication cost problems among chronically ill adults in the US: did the financial crisis make a bad situation even worse?

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    Piette JD

    2011-04-01

    Full Text Available John D Piette1, Ann Marie Rosland1, Maria J Silveira1, Rodney Hayward1, Colleen A McHorney21Ann Arbor VA Healthcare System, Ann Arbor, MI, USA; 2US Outcomes Research, Merck and Co, Inc, North Wales, PA, USAAbstract: A national internet survey was conducted between March and April 2009 among 27,302 US participants in the Harris Interactive Chronic Illness Panel. Respondents reported behaviors related to cost-related medication non-adherence (CRN and the impacts of medication costs on other aspects of their daily lives. Among respondents aged 40–64 and looking for work, 66% reported CRN in 2008, and 41% did not fill a prescription due to cost pressures. More than half of respondents aged 40–64 and nearly two-thirds of those in this group who were looking for work or disabled reported other impacts of medication costs, such as cutting back on basic needs or increasing credit card debt. More than one-third of respondents aged 65+ who were working or looking for work reported CRN. Regardless of age or employment status, roughly half of respondents reporting medication cost hardship said that these problems had become more frequent in 2008 than before the economic recession. These data show that many chronically ill patients, particularly those looking for work or disabled, reported greater medication cost problems since the economic crisis began. Given links between CRN and worse health, the financial downturn may have had significant health consequences for adults with chronic illness.Keywords: medication adherence, cost-of-care, access to care, chronic disease

  17. Social status and living with a chronic illness: an exploration of assessment and meaning attributed to work and employment.

    Science.gov (United States)

    Vassilev, Ivaylo; Rogers, Anne; Sanders, Caroline; Cheraghi-Sohi, Sudeh; Blickem, Christian; Brooks, Helen; Kapadia, Dharmi; Reeves, David; Doran, Tim; Kennedy, Anne

    2014-12-01

    Traditional measures of social status are predicated on position in the labour market. There has been less attention directed to the meanings of social position for people with a long-term condition whose relationship to employment is precarious. Previous research has demonstrated that the MacArthur scale is capable of capturing contextualised aspects of social status, which makes it a useful tool for exploring changes in meaning. The paper explores the meanings and experiences of social status of people living with a long-term condition with particular reference to employment status. A sample of 300 participants was drawn from diabetes and chronic heart disease registers of General Practices in North West England. A cross-sectional survey with nested qualitative interviews was used in collecting and analysing the data. Having financial independence and participating in valued activities are more important for people with chronic illness than power and status mediated through the labour market. Income and the lack and loss of employment were given a central role in respondents' narratives reflecting the absence of acceptable alternative routes through which social status for those with a long-term condition can realistically be rebuilt outside of participation in the labour market. Social participation, where people with chronic illness feel valued and of tangible utility to other people, might offer some opportunities for rebuilding social status outside the labour market. Chronic illness management interventions need to focus on improving people's engagement with such activities. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

  18. Altered Food-Cue Processing in Chronically Ill and Recovered Women with Anorexia Nervosa

    Science.gov (United States)

    Sanders, Nicole; Smeets, Paul A. M.; van Elburg, Annemarie A.; Danner, Unna N.; van Meer, Floor; Hoek, Hans W.; Adan, Roger A. H.

    2015-01-01

    Anorexia nervosa (AN) is a severe mental disorder characterized by food restriction and weight loss. This study aimed to test the model posed by Brooks et al. (2012a,b) that women suffering from chronic AN show decreased food-cue processing activity in brain regions associated with energy balance and food reward (bottom-up; BU) and increased activity in brain regions associated with cognitive control (top-down; TD) when compared with long-term recovered AN (REC) and healthy controls (HC). Three groups of women, 15 AN (mean illness duration 7.8 ± 4.1 years), 14 REC (mean duration of recovery 4.7 ± 2.7 years) and 15 HC viewed alternating blocks of food and non-food images preceded by a short instruction during functional magnetic resonance imaging (fMRI), after fasting overnight. Functional region of interests (fROIs) were defined in BU (e.g., striatum, hippocampus, amygdala, hypothalamus, and cerebellum), TD (e.g., medial and lateral prefrontal cortex, and anterior cingulate), the insula, and visual processing areas (VPA). Food-cue processing activation was extracted from all fROIs and compared between the groups. In addition, functional connectivity between the fROIs was examined by modular partitioning of the correlation matrix of all fROIs. We could not confirm the hypothesis that BU areas are activated to a lesser extent in AN upon visual processing of food images. Among the BU areas the caudate showed higher activation in both patient groups compared to HC. In accordance with Brooks et al.’s model, we did find evidence for increased TD control in AN and REC. The functional connectivity analysis yielded two clusters in HC and REC, but three clusters in AN. In HC, fROIs across BU, TD, and VPA areas clustered; in AN, one cluster span across BU, TD, and insula; one across BU, TD, and VPA areas; and one was confined to the VPA network. In REC, BU, TD, and VPA or VPA and insula clustered. In conclusion, despite weight recovery, neural processing of food

  19. Altered food cue processing in chronically ill and recovered women with Anorexia Nervosa.

    Directory of Open Access Journals (Sweden)

    Nicole eSanders

    2015-02-01

    Full Text Available Anorexia Nervosa (AN is a severe mental disorder characterized by food restriction and weight loss.This study aimed to test the model posed by Brooks et al. (2012, that women suffering from chronic AN show decreased food cue processing activity in brain regions associated with energy balance and food reward (bottom-up; BU and increased activity in brain regions associated with cognitive control (top-down; TD when compared to long term recovered AN (REC and healthy controls (HC. Three groups of women, 15 AN (mean illness duration 7.8 ± 4.1 y, 14 REC (mean duration of recovery 4.7 ± 2.7 yr and 15 HC viewed alternating blocks of food and non-food images preceded by a short instruction during functional magnetic resonance imaging (fMRI, after fasting overnight. Functional ROIs (fROIs were defined in BU (e.g. striatum, hippocampus, amygdala, hypothalamus and cerebellum, TD (e.g. medial and lateral prefrontal cortex, anterior cingulate, the insula and visual processing areas (VPA. Food-cue processing activation was extracted from all fROIs and compared between the groups. In addition, functional connectivity between the fROIs was examined by modular partitioning of the correlation matrix of all fROIs.We could not confirm the hypothesis that BU areas are activated to a lesser extent in AN upon visual processing of food images. Among the BU areas the caudate showed higher activation in both patient groups compared to HC. In accordance with Brooks et al.’s model, we did find evidence for increased TD control in AN and REC. The functional connectivity analysis yielded two clusters in HC and REC, but three clusters in AN. In HC fROIs across BU, TD and VPA areas clustered, in AN one cluster span across BU, TD and insula, one across BU, TD and VPA areas and one was confined to the VPA network. In REC BU, TD and VPA or VPA and insula clustered.In conclusion, despite weight recovery, neural processing of food cues is also altered in recovered AN patient

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

    Science.gov (United States)

    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.

  1. Chronic Illness-Related Shame: Development of a New Scale and Novel Approach for IBD Patients' Depressive Symptomatology.

    Science.gov (United States)

    Trindade, Inês A; Ferreira, Cláudia; Pinto-Gouveia, José

    2017-01-01

    The aims of the present study were to develop and validate a scale specifically focused on shame feelings derived from chronic illness-related experiences, the Chronic Illness-related Shame Scale (CISS) and to fill a gap in literature and analyse the role of this construct in the association between inflammatory bowel disease (IBD) symptomatology and depressed mood. This study comprised two samples: a sample of 161 IBD patients and a mixed sample of 65 chronic patients that reported medical data and completed self-report measures. The CISS's unidimensional seven-item structure was evaluated through confirmatory factor analyses. These analyses revealed good to excellent global and local adjustments in both samples. Results also showed that the CISS presents excellent internal consistencies and convergent, concurrent and divergent validity, being a valid, short and robust scale. Furthermore, the present study explored through path analyses, the role of CISS and self-judgement in the relationship between IBD symptomatology and depressed mood. Results showed that, although the level of IBD symptomatology directly predicted patients' depressive symptoms, the majority of this effect was mediated by CISS and self-judgement. Possible explanations for these findings are discussed in more detail in the succeeding text. The present study seems to highlight the pertinence of developing IBD patients' self-compassionate abilities to adaptively deal with symptomatology and related shame feelings. It thus may represent an avenue for the development of compassionate-based interventions for IBD patients and for the conduction of future studies exploring the shame phenomenon in other chronic illnesses. Copyright © 2016 John Wiley & Sons, Ltd. A new measure, the Chronic Illness-related Shame Scale (CISS), was developed CISS was revealed to be robust instrument in samples of inflammatory bowel disease (IBD) and cancer patients CISS and self-judgement mediate the relationship between

  2. Systematic ethnography of school-age children with bleeding disorders and other chronic illnesses: exploring children's perceptions of partnership roles in family-centred care of their chronic illness.

    Science.gov (United States)

    Pritchard Kennedy, A

    2012-11-01

    In this qualitative study, school-age children between 7 and 11 years, living with a bleeding disorder or other chronic illness, defined how they understand their partnership role in family-centred care (FCC), and recommended FCC strategies. This systematic ethnography had three phases: unstructured interviews explored how children understood FCC partnership roles (phase I); document review provided FCC institutional context (phase II); and validation interviews generated FCC partnership recommendations (phase III). This study took place within the area served by a Western Canadian children's hospital. Interviews were held at the hospital or children's home. In phase I, purposive sampling was used to recruit children receiving outpatient care for a bleeding disorder (n = 4) or another chronic illness (n = 4). In phase II, policies and legislation were compared with how children understand their FCC partnership role. In phase III, validation interviews were conducted with children (n = 3) to confirm domains and generate FCC supporting strategies. Data collection and analysis were based on domain analysis and qualitative ethnographic content analysis. Phase I outcomes included seven domains regarding how children understood their role as partners in FCC: my best interests, virtues, talking and listening, being involved, knowing, making decisions and being connected. Phase II outcomes revealed how these domains were represented in institutional contexts. Phase III outcomes confirmed domains and generated key strategies to support children's role as FCC partners through graphic representation of FCC as a treasure map, interactive workshop and online game. School-age children, living with a bleeding disorder or other chronic illness, similarly want to learn how to be FCC partners by developing competence as healthcare team members, identifying their own best interests, learning how to communicate with 'grown-ups', clarifying roles and goals, and guided opportunities for

  3. Winners and losers in flexible labor markets: the fate of women with chronic illness in contrasting policy environments--Sweden and Britain

    DEFF Research Database (Denmark)

    Burström, Bo; Holland, Paula; Diderichsen, Finn

    2003-01-01

    This study compares employment rates among men and women with and without chronic illness in the contrasting policy environments of Britain and Sweden, through analysis of household surveys for 1979-1995. Professional and managerial groups were winners in both countries, including during recession...... unskilled manual workers in Britain. British women with a chronic illness in the 1990s had less than half the employment rates of healthy women. Such social inequalities were much smaller and less consistent in Sweden, where the impact of illness was softened for all social groups. In Britain, workless men...

  4. Bile lipids in rats under chronic social stress

    Directory of Open Access Journals (Sweden)

    A. M. Liashevych

    2017-08-01

    Full Text Available Our experiments studied changes in lipid compound of bile of non-purebred male rats under the condition of social stress while the preparation “Korvitin” was used against the stress. Using the method of thin-layer chromatography, we determined the concentrations of phospholipids, cholesterol and its esters, free fatty acids and triglycerides in the animals’ bile, which was obtained through vivesection a day and a month after the rats were first subjected to chronic social stress (model of social defeat, and also in the bile of the animals which were treated intragastrically with “Korvitin” against the stress (1 mg/kg, 7 days. In the bile of the male rats which experienced chronic social stress the concentration of free cholesterol decreased and the content of its esters increased both immediately after the initiation of stress and after a month of exposure to stress. The concentration of free fatty acids in the bile decreased after modeling chronic social stress, but increased in liver secretion, taken a month after the animals had first experienced stress. In the bile of male rats immediately after the procedure of exposing the animals to stress, the content of phospholipids decreased. Using “Korvitin” during the modeling of social stress caused decrease in the content of phospholipids in the rats’ bile and caused significant increase in the concentration of free fatty acids, triglycerides and cholesterol esters in the liver secretion. The study found significant changes in the concentration of lipids in the bile and in their distribution in the organism of male rats under the conditions of experimentally induced chronic stress. The effect of stress on the bile of rats requires further study for determining its pathogenic role.

  5. How does social comparison within a self-help group influence adjustment to chronic illness? A longitudinal study.

    Science.gov (United States)

    Dibb, Bridget; Yardley, Lucy

    2006-09-01

    Despite the growing popularity of self-help groups for people with chronic illness, there has been surprisingly little research into how these may support adjustment to illness. This study investigated the role that social comparison, occurring within a self-help group, may play in adjustment to chronic illness. A model of adjustment based on control process theory and response shift theory was tested to determine whether social comparisons predicted adjustment after controlling for the catalyst for adjustment (disease severity) and antecedents (demographic and psychological factors). A sample of 301 people with Ménière's disease who were members of the Ménière's Society UK completed questionnaires at baseline and 10-month follow-up assessing adjustment, defined for this study as functional and goal-oriented quality of life. At baseline, they also completed measures of the predictor variables i.e. the antecedents (age, sex, living circumstances, duration of self-help group membership, self-esteem, optimism and perceived control over illness), the catalyst (severity of vertigo, tinnitus, hearing loss and fullness in the ear) and mechanisms of social comparison within the self-help group. The social comparison variables included the extent to which self-help group resources were used, and whether reading about other members' experiences induced positive or negative feelings. Cross-sectional results showed that positive social comparison was indeed associated with better adjustment after controlling for all the other baseline variables, while negative social comparison was associated with worse adjustment. However, greater levels of social comparison at baseline were associated with a deteriorating quality of life over the 10-month follow-up period. Alternative explanations for these findings are discussed.

  6. "The land of the sick and the land of the healthy": Disability, bureaucracy, and stigma among people living with poverty and chronic illness in the United States.

    Science.gov (United States)

    Whittle, Henry J; Palar, Kartika; Ranadive, Nikhil A; Turan, Janet M; Kushel, Margot; Weiser, Sheri D

    2017-10-01

    institutions, and add to ongoing debate around the future of public social provision for impoverished and chronically ill citizens under neoliberalism. Copyright © 2017 Elsevier Ltd. All rights reserved.

  7. The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children.

    Science.gov (United States)

    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 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.

  8. Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia

    Science.gov (United States)

    Oaklander, Anne Louise; Herzog, Zeva Daniela; Downs, Heather; Klein, Max M.

    2013-01-01

    Fibromyalgia is a common, disabling, syndrome that includes chronic widespread pain plus other diverse symptoms. No specific objective abnormalities have been identified, precluding definitive testing, disease-modifying treatments, and identification of causes. In contrast, small-fiber polyneuropathy (SFPN), despite causing similar symptoms, is definitionally a disease caused by dysfunction and degeneration of peripheral small-fiber neurons. SFPN has established etiologies, some diagnosable and definitively treatable, e.g., diabetes. To evaluate the hypothesis that some patients labeled with “fibromyalgia” have unrecognized SFPN causing their illness symptoms, we analyzed SFPN-associated symptoms, signs, and pathological and physiological markers in 27 fibromyalgia patients and 30 matched normal controls. Fibromyalgia subjects had to satisfy American College of Rheumatology criteria plus present documented evidence of a physician’s actual fibromyalgia diagnosis. Study instruments comprised the Michigan Neuropathy Screening Instrument (MNSI), the Utah Early Neuropathy Scale (UENS), distal-leg neurodiagnostic skin biopsies, plus autonomic-function testing (AFT). 41% of skin biopsies from fibromyalgia subjects vs. 3% of biopsies from control subjects were diagnostic for SFPN, and MNSI and UENS scores were higher among fibromyalgia than control subjects (all P ≤ 0.001). Abnormal AFTs were equally prevalent suggesting that fibromyalgia-associated SFPN is primarily somatic. Blood tests from all 13 fibromyalgia subjects with SFPN-diagnostic skin biopsies provided insights into etiologies. All glucose tolerance tests were normal, but eight subjects had dysimmune markers, 2 had hepatitis C serologies, and one family had apparent genetic causality. These findings suggest that some patients with chronic pain labeled as “fibromyalgia” have unrecognized small-fiber polyneuropathy, a distinct disease that can be objectively tested for and sometimes definitively

  9. Hematopoietic tissue repair under chronic low daily dose irradiation

    Energy Technology Data Exchange (ETDEWEB)

    Seed, T.M.

    1994-12-01

    The capacity of the hematopoietic system to repair constantly accruing cellular damage under chronic, low daily dose gamma irradiation is essential for the maintenance of a functional hematopoietic system, and, in turn, long term survival. In certain individuals, however, such continuous cycles of damage and repair provide an essential inductive environment for selected types of hematopathologies, e.g., myeloid leukemia (ML). We have been studying temporal and causal relationships between hematopoietic capacity, associated repair functions, and propensities for hematologic disease in canines under variable levels of chronic radiation stress (0.3{minus}26.3 cGy d{sup {minus}1}). Results indicate that the maximum exposure rate tolerated by the hematopoietic system is highly individual-specific and is based largely on the degree to which repair capacity, and, in turn, hematopoietic restoration, is augmented under chronic exposure. In low-tolerance individuals (prone to aplastic anemia, subgroup (1), the failure to augment basic m-pair functions seemingly results in a progressive accumulation of genetic and cellular damage within vital progenitorial marrow compartments particularly marked within erythroid compartments. that results in loss of reproductive capacity and ultimately in collapse of the hematopoietic system. The high-tolerance individuals (radioaccomodated and either prone- or not prone to ML, subgroup 2 & 3 appear to minimize the accumulating damage effect of daily exposures by extending repair functions, which preserves reproductive integrity and fosters regenerative hematopoietic responses. As the strength of the regenerative response manifests the extent of repair augmentation, the relatively strong response of high- tolerance individuals progressing to patent ML suggests an insufficiency of repair quality rather than repair quantity.

  10. Hematopoietic tissue repair under chronic low daily dose irradiation

    International Nuclear Information System (INIS)

    Seed, T.M.

    1994-01-01

    The capacity of the hematopoietic system to repair constantly accruing cellular damage under chronic, low daily dose gamma irradiation is essential for the maintenance of a functional hematopoietic system, and, in turn, long term survival. In certain individuals, however, such continuous cycles of damage and repair provide an essential inductive environment for selected types of hematopathologies, e.g., myeloid leukemia (ML). We have been studying temporal and causal relationships between hematopoietic capacity, associated repair functions, and propensities for hematologic disease in canines under variable levels of chronic radiation stress (0.3-26.3 cGy d -1 ). Results indicate that the maximum exposure rate tolerated by the hematopoietic system is highly individual-specific and is based largely on the degree to which repair capacity, and, in turn, hematopoietic restoration, is augmented under chronic exposure. In low-tolerance individuals (prone to aplastic anemia, subgroup (1), the failure to augment basic m-pair functions seemingly results in a progressive accumulation of genetic and cellular damage within vital progenitorial marrow compartments particularly marked within erythroid compartments. that results in loss of reproductive capacity and ultimately in collapse of the hematopoietic system. The high-tolerance individuals (radioaccomodated and either prone- or not prone to ML, subgroup 2 ampersand 3 appear to minimize the accumulating damage effect of daily exposures by extending repair functions, which preserves reproductive integrity and fosters regenerative hematopoietic responses. As the strength of the regenerative response manifests the extent of repair augmentation, the relatively strong response of high- tolerance individuals progressing to patent ML suggests an insufficiency of repair quality rather than repair quantity

  11. Multi-label classification of chronically ill patients with bag of words and supervised dimensionality reduction algorithms.

    Science.gov (United States)

    Bromuri, Stefano; Zufferey, Damien; Hennebert, Jean; Schumacher, Michael

    2014-10-01

    This research is motivated by the issue of classifying illnesses of chronically ill patients for decision support in clinical settings. Our main objective is to propose multi-label classification of multivariate time series contained in medical records of chronically ill patients, by means of quantization methods, such as bag of words (BoW), and multi-label classification algorithms. Our second objective is to compare supervised dimensionality reduction techniques to state-of-the-art multi-label classification algorithms. The hypothesis is that kernel methods and locality preserving projections make such algorithms good candidates to study multi-label medical time series. We combine BoW and supervised dimensionality reduction algorithms to perform multi-label classification on health records of chronically ill patients. The considered algorithms are compared with state-of-the-art multi-label classifiers in two real world datasets. Portavita dataset contains 525 diabetes type 2 (DT2) patients, with co-morbidities of DT2 such as hypertension, dyslipidemia, and microvascular or macrovascular issues. MIMIC II dataset contains 2635 patients affected by thyroid disease, diabetes mellitus, lipoid metabolism disease, fluid electrolyte disease, hypertensive disease, thrombosis, hypotension, chronic obstructive pulmonary disease (COPD), liver disease and kidney disease. The algorithms are evaluated using multi-label evaluation metrics such as hamming loss, one error, coverage, ranking loss, and average precision. Non-linear dimensionality reduction approaches behave well on medical time series quantized using the BoW algorithm, with results comparable to state-of-the-art multi-label classification algorithms. Chaining the projected features has a positive impact on the performance of the algorithm with respect to pure binary relevance approaches. The evaluation highlights the feasibility of representing medical health records using the BoW for multi-label classification

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

    Science.gov (United States)

    Stanhope, Victoria; Henwood, Benjamin F

    2014-08-01

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

  13. Double trouble: does co-morbid chronic somatic illness increase risk for recurrence in depression? A systematic review.

    Directory of Open Access Journals (Sweden)

    Gemma D Kok

    Full Text Available OBJECTIVE: To perform a systematic review, and if possible a meta-analysis, to establish whether depressed patients with co-morbid chronic somatic illnesses are a high risk "double trouble" group for depressive recurrence. METHOD: The databases PubMed, EMbase and PsycINFO were systematically searched until the 4(th of December 2012 by using MeSH and free text terms. Additionally, reference lists of retrieved publications and treatment guidelines were reviewed, and experts were consulted. Inclusion criteria were: depression had to be measured at least twice during the study with qualified instruments and the chronic somatic illness had to be assessed by self-report or by a medical professional. Information on depressive recurrence was extracted and additionally risk ratios of recurrence were calculated. RESULTS: The search generated four articles that fulfilled our inclusion criteria. These studies showed no differences in recurrence over one- two- three- and 6.5 years of follow-up for a total of 2010 depressed patients of which 694 patients with a co-morbid chronic somatic illness versus 1316 patients without (Study 1: RR = 0.49, 95% CI, 0.17-1.41 at one year follow-up and RR = 1.37, 95% CI, 0.78-2.41 at two year follow-up; Study 2: RR = 0.94, 95% CI, 0.65-1.36 at two year follow-up; Study 3: RR = 1.15, 95% CI, 0.40-3.27 at one year follow-up; RR = 1.07, 95% CI, 0.48-2.42 at two year follow-up and RR = 0.99, 95% CI,0.55-1.77 at 6.5 years follow-up; Study 4: RR = 1.16, 95% CI, 0.86-1.57 at three year follow-up. CONCLUSION: We found no association between a heightened risk for depressive recurrence and co-morbid chronic somatic illnesses. There is a need for more longitudinal studies to justify the current specific treatment advice such as long-term pharmacological maintenance treatment for this presumed "double trouble" group.

  14. [Neurophysiologic mechanisms of arterial hypertension under experimental chronic emotional stress].

    Science.gov (United States)

    Baumann, H; Martin, G; Urmantscheeva, T G; Degen, G; Wolter, F; Chasabova, W A; Gurk, C; Hinays, I; Läuter, J

    1976-01-01

    Neurophysiological studies were conducted with subhuman primates (macaca mulatta) in order to obtain an estimate of central nervous effects of socio-emotional stress. This was combined with continuously aggravated conditioning procedures in view of the possible significance of chronic environmental stress escalation for etiology and pathogenesis of an arterial hypertension model. Our conclusions are based on evoked potentials (EP) as integrative characteristics of cerebral information processing. The EPs were recorded by means of electrodes chronically implanted in brain structures of emotional and cardio-vascular relevance. Multivariate mathematico-statistical analyses of average EPs (AEP) provide an objective measure of stress sensibility of the individual, particularly of the effects of acute and chronic environmental stress factors upon the functional organization of the CNS. By means of a quantitative approach to AEP we were able to demonstrate a disjunction between distinct limbic and hypothalamic structures starting under stress conditions of subchronic character. We assume that the constancy of functionally antagonistic hyperactive excitation foci at diencephalic and supradiencephalic levels and their specific interaction with the equally stress related neocortical functional insufficiency constitutes a decisive pathogenetic central mechanism of neurotic behaviour. Long-term changes of amplification of external and internal afferences could be demonstrated on the basis of hypo- and hyperreactive neuroelectric functional patterns. These processes cause cerebro-visceral regulatory diseases as, e. g., a primary arterial hypertension by restriction of neocortical control and the corresponding efferent reactions for re-establishment of the dynamic homeostasis.

  15. Fat-free mass in chronic illness: comparison of bioelectrical impedance and dual-energy x-ray absorptiometry in 480 chronically ill and healthy subjects.

    Science.gov (United States)

    Pichard, C; Kyle, U G; Slosman, D O

    1999-09-01

    Assessment of fat-free mass (FFM) and fat mass in ambulatory and hospitalized patients permits optimal adaptation of nutrition support. Recent methods for the determination of FFM are dual-energy x-ray absorptiometry (DXA) and bioelectrical impedance analysis (BIA). The purpose of this study was to determine if the BIA-determined FFM as estimated by the formula by Kotler et al. and the Geneva formula could be validated when compared to DXA-determined FFM in subjects with various diagnoses. Body composition was measured by BIA and DXA in 480 subjects including healthy young men and women, elite female runners, and patients with various pathologies (including chronic obstructive and restrictive pulmonary disease patients; cystic fibrosis patients; lung, heart, and liver transplantation patients [both pre- and post-], and hemiplegic and AIDS patients). The present results suggest that BIA is relevant in the clinical assessment of body composition, but BIA formulas appropriate to the subject pool must be used for evaluation of FFM and fat mass. The BIA formula by Kotler et al. is appropriate for healthy subjects and patients with AIDS, cystic fibrosis, and pre- or postliver transplantation. The Geneva formula is more appropriate in pulmonary diseases and hemiplegic subjects with normal weight.

  16. Assessment of universal health coverage for adults aged 50 years or older with chronic illness in six middle-income countries

    OpenAIRE

    Goeppel, Christine; Frenz, Patricia; Grabenhenrich, Linus; Keil, Thomas; Tinnemann, Peter

    2016-01-01

    Abstract Objective To assess universal health coverage for adults aged 50 years or older with chronic illness in China, Ghana, India, Mexico, the Russian Federation and South Africa. Methods We obtained data on 16?631 participants aged 50?years or older who had at least one diagnosed chronic condition from the World Health Organization Study on Global Ageing and Adult Health. Access to basic chronic care and financial hardship were assessed and the influence of health insurance and rural or u...

  17. Rural and urban disparities in quality of life and health-related behaviors among chronically ill patients.

    Science.gov (United States)

    Kurpas, D; Mroczek, B; Bielska, D

    2014-01-01

    The purpose of this study was to describe rural and urban disparities in quality of life and health-related behaviors among chronically ill patients. Additionally, effects of health status and health-related behaviors on healthcare utilization were investigated. The study included 1239 chronically ill patients from primary care centers in rural areas (eligible patients; response rate: 62.0%). The analyzed group was compared with the urban group, homogeneous in respect of gender and age (n=1886). Quality of life (QoL) was measured using the World Health Organization Quality of Life Instrument Short Form (WHOQoL-Bref). The authors also used the Health Behavior Inventory (HBI). Only the results in Domain 4 (Environmental) were higher among patients from rural areas (13.6 vs 13.4, p=0.015) within the WHOQoL-Bref. Differences between rural and urban areas in the contributors to lower QoL referred to such variables as gender, height, body mass, BMI and level of healthcare utilization. Results of HBI were higher in patients from urban areas (85.0 vs 83.1, phealth behavior concerned gender, age, height, body mass, BMI, having a partner, number of chronic diseases and level of healthcare utilization. The authors observed among the rural patients fewer visits of district nurses (12.1 vs 15.3, p=0.003). Odds ratio (OR) for QoL in the case of place of residence (rural vs urban) was OR=1.341 (95% CI: 1.067-1.687). Higher quality of life may reduce the level of healthcare utilization among residents of rural and urban areas. Educational programs, promoting health behaviors, should be primarily addressed to rural patients, men, younger individuals, patients with a lower number of chronic diseases, and those using healthcare services less often.

  18. [Medical diagnosis of pain between myth and reality--chronic lower back pain, as an illness of upright walking].

    Science.gov (United States)

    Albrecht, H

    2001-10-01

    Chronic therapy-resistant low back pain is a major problem in medical care. In Germany there are many millions concerned, and the treatment expenses range at the top. Many of these patients underwent non-successful operations at the vertebral column and suffered a long-lasting odyssey of therapies before they are treated psychosomatically for the first time. Chronic low back pain is a disease including social, psychological as well as physiological aspects, and not only a problem of bones, muscles, or intervertebral disks. The problem is similar to that of fibromyalgia. On the basis of 9,000 case reports obtained during psychosomatic orthopedic treatment, character structures, unsolved problems of life and repressed emotional disturbances such as anger, jealousy, fear, and mourning could be identified as major psychosomatic risk factors for chronic low back pain. There is a high coincidence with other psychosomatically influenced diseases such as gastric and duodenal ulcera, asthma bronchiale, migraine with depressions, anxiety disorders, character neuroses, and narcissistic and other structural disturbances of the self. Exclusively somatic treatments without considering the existential situation and psychological methods hold the danger of a symptom shifting. The inpatient treatment from 9 a.m. to 5 p.m. ('Tagesklinik') with a combination of medical, physiotherapeutic and psychotherapeutic methods promotes a social training that counteracts the increasing constrictions in the accustomed life surroundings caused by low back pain. Chronic low back pain is an 'illness of the upright walk' in an anthropological, ethical sense. Considering low back pain as a strictly somatic disease is a modern myth of a medical treatment without existential understanding of human illness. It provokes failure of treatment and an enhancement of treatment cost. Copyright 2001 S. Karger GmbH, Freiburg

  19. Subjective Well-Being Is Associated with Food Behavior and Demographic Factors in Chronically Ill Older Japanese People Living Alone.

    Science.gov (United States)

    Ishikawa, M; Yokoyama, T; Hayashi, F; Takemi, Y; Nakaya, T; Fukuda, Y; Kusama, K; Nozue, M; Yoshiike, N; Murayama, N

    2018-01-01

    This study aimed to examine the relationships among subjective well-being, food and health behaviors, socioeconomic factors, and geography in chronically ill older Japanese adults living alone. The design was a cross-sectional, multilevel survey. A questionnaire was distributed by post and self-completed by participants. The sample was drawn from seven towns and cities across Japan. A geographic information system was used to select a representative sample of older people living alone based on their proximity to a supermarket. Study recruitment was conducted with municipal assistance. To assess subjective well-being and food and health behaviors of respondents with disease, a logistic regression analysis was performed using stepwise variable analyses, adjusted for respondent age, socioeconomic status, and proximity to a supermarket. The dependent variable was good or poor subjective well-being. In total, 2,165 older people (744 men, 1,421 women) completed the questionnaire (63.5% response rate). Data from 737 men and 1,414 women were used in this study. Among people with a chronic disease, individuals with good subjective well-being had significantly higher rates than those with poor subjective well-being for satisfaction with meal quality and chewing ability, food diversity, food intake frequency, perception of shopping ease, having someone to help with food shopping, eating home-produced vegetables, preparing breakfast themselves, eating with other people, and high alcohol consumption. A stepwise logistic analysis showed that the factors strongly related to poor subjective well-being were shopping difficulty (men: odds ratio [OR] = 3.19, 95% confidence interval [CI], 1.94-5.23; P Subjective well-being of people with chronic diseases is associated with food intake and food behavior. The factors that affect poor subjective well-being in chronically ill older Japanese people living alone include food accessibility and social communication.

  20. Reporting of Outbreaks of Foodborne Illness under the International Health Regulations

    Centers for Disease Control (CDC) Podcasts

    2008-08-27

    During the past 20 years, the global food trade has increased and, with it, the potential for the spread of foodborne illnesses caused by imported foods. The World Health Organization in 2007 implemented new International Health Regulations which help guide reporting of foodborne outbreaks. In this podcast, CDC's Dr. Scott McNabb discusses a study in the September 2008 issue of the journal Emerging Infectious Diseases which analyzed foodborne outbreaks in Australia in the early part of this decade and assessed how many would have been reported under the current health regulations.  Created: 8/27/2008 by Emerging Infectious Diseases.   Date Released: 8/27/2008.

  1. Links Between Chronic Illness and Late-Life Cognition: Evidence From Four Latin American Countries.

    Science.gov (United States)

    Socal, Mariana P; Trujillo, Antonio J

    2018-02-01

    We explored the links between chronic diseases and cognitive ability using datasets of community-dwelling older adults from Brazil, Chile, Mexico, and Uruguay from the SABE (Health, Well-Being, and Aging) survey. Ordinary least squares (OLS), Tobit and linear probability models, adjusting for extensive health and socio-demographic factors, were implemented separately for men and women and complemented by a series of robustness checks. We find a negative association between the number of chronic conditions and cognitive decline that has the following characteristics: (a) differs across gender, (b) increases with the number of chronic conditions, (c) is larger among those individuals in the bottom of the cognitive distribution, (d) and is different across types of chronic conditions. These results suggest that returns from preventive policies to reduce cognitive decline would increase if they were targeted to seniors with chronic conditions and implemented before the impact from multiple comorbidities makes the cognitive decline too steep to be reversed.

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

    Science.gov (United States)

    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 optimism predicted a faster decline in depressive symptoms over time (B = -0.61, SE = 0.10, t = -6.30, P 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.

  3. Are children with chronic illnesses requiring dietary therapy at risk for disordered eating or eating disorders? A systematic review.

    Science.gov (United States)

    Conviser, Jenny H; Fisher, Sheehan D; McColley, Susanna A

    2018-03-01

    Pediatric chronic illnesses (CI) can affect a child's mental health. Chronic illnesses with treatment regimens that specify a therapeutic diet may place the child at increased risk for disordered eating and specific eating disorders (ED). The aim of this review is to examine the relation between diet-treated CI and disordered eating and to determine the order of onset to infer directionality. Diet-treated CI is hypothesized to precede and to be associated with disordered eating. A comprehensive search of empirical articles that examine the relation between diet-treated CI (diabetes, cystic fibrosis, celiac disease, gastrointestinal disorders, and inflammatory bowel diseases) and disordered eating was conducted in Medline and PsycINFO using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A table of the sample's characteristics, ED measures, major pertinent findings, and the onset of CI in relation to ED were provided. Diet-treated CI was associated with disordered eating and ED. Diet-treated CI had onset prior to disordered eating in most studies, except for inflammatory bowel diseases. Disordered eating and unhealthy weight management practices put children at risk for poor medical outcomes. Interventions for diet-treated CI require a focus on diet and weight, but may increase the risk for disordered eating. Future research is needed to elucidate the mechanisms that transform standard treatment practices into pathological eating, including characteristics and behaviors of the child, parents/care providers, family, and treatment providers. © 2018 Wiley Periodicals, Inc.

  4. A tool to measure whether business management capacity in general practice impacts on the quality of chronic illness care.

    Science.gov (United States)

    Holton, Christine H; Proudfoot, Judith G; Jayasinghe, Upali W; Grimm, Jane; Bubner, Tanya K; Winstanley, Julie; Harris, Mark F; Beilby, Justin J

    2010-11-01

    Our aim was to develop a tool to identify specific features of the business and financial management of practices that facilitate better quality care for chronic illness in primary care. Domains of management were identified, resulting in the development of a structured interview tool that was administered in 97 primary care practices in Australia. Interview items were screened and subjected to factor analysis, subscales identified and the overall model fit determined. The instrument's validity was assessed against another measure of quality of care. Analysis provided a four-factor solution containing 21 items, which explained 42.5% of the variance in the total scores. The factors related to administrative processes, human resources, marketing analysis and business development. All scores increased significantly with practice size. The business development subscale and total score were higher for rural practices. There was a significant correlation between the business development subscale and quality of care. The indicators of business and financial management in the final tool appear to be useful predictors of the quality of care. The instrument may help inform policy regarding the structure of general practice and implementation of a systems approach to chronic illness care. It can provide information to practices about areas for further development.

  5. Patient- and family-centered performance measures focused on actionable processes of care for persistent and chronic critical illness: protocol for a systematic review.

    Science.gov (United States)

    Rose, Louise; Istanboulian, Laura; Allum, Laura; Burry, Lisa; Dale, Craig; Hart, Nicholas; Kydonaki, Claire; Ramsay, Pam; Pattison, Natalie; Connolly, Bronwen

    2017-04-17

    Approximately 5 to 10% of critically ill patients transition from acute critical illness to a state of persistent and in some cases chronic critical illness. These patients have unique and complex needs that require a change in the clinical management plan and overall goals of care to a focus on rehabilitation, symptom relief, discharge planning, and in some cases, end-of-life care. However, existing indicators and measures of care quality, and tools such as checklists, that foster implementation of best practices, may not be sufficiently inclusive in terms of actionable processes of care relevant to these patients. Therefore, the aim of this systematic review is to identify the processes of care, performance measures, quality indicators, and outcomes including reports of patient/family experience described in the current evidence base relevant to patients with persistent or chronic critical illness and their family members. Two authors will independently search from inception to November 2016: MEDLINE, Embase, CINAHL, Web of Science, the Cochrane Library, PROSPERO, the Joanna Briggs Institute and the International Clinical Trials Registry Platform. We will include all study designs except case series/reports of critical illness, chronic critical illness, and prolonged mechanical ventilation. Two authors will independently perform data extraction and complete risk of bias assessment. Our primary outcome is to determine actionable processes of care and interventions deemed relevant to patients experiencing persistent or chronic critical illness and their family members. Secondary outcomes include (1) performance measures and quality indicators considered relevant to our population of interest and (2) themes related to patient and family experience. We will use our systematic review findings, with data from patient, family member and clinician interviews, and a subsequent consensus building process to inform the development of quality metrics and tools to measure

  6. Chronic Diarrhea

    Science.gov (United States)

    ... infections that cause chronic diarrhea be prevented? Chronic Diarrhea What is chronic diarrhea? Diarrhea that lasts for more than 2-4 ... represent a life-threatening illness. What causes chronic diarrhea? Chronic diarrhea has many different causes; these causes ...

  7. The Burden of Illness in Patients with Moderate to Severe Chronic Obstructive Pulmonary Disease in Canada

    Directory of Open Access Journals (Sweden)

    M Reza Maleki-Yazdi

    2012-01-01

    Full Text Available INTRODUCTION: No recent Canadian studies with physician- and spirometry-confirmed diagnosis of chronic obstructive pulmonary disease (COPD that assessed the burden of COPD have been published.

  8. 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.

    Science.gov (United States)

    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.

  9. Chlorosis and chronic disease in 19th-century Britain: the social constitution of somatic illness in a capitalist society.

    Science.gov (United States)

    Figlio, K

    1978-01-01

    This paper is informed by the recent attempts to construct Marxist views of nature, by the lively historical work on 19th-century British class structure, and by the dedicated work of feminist historians of medicine. Using the common disease of adolescent girls, chlorosis, as an example of a real "physical" illness, I shall argue that disease is, in part, socially constructed. Not only is the social class of both doctor and patient an important determinant in the perception of illness, but so too is the relationship between the disease and the mode of production. Both the "existence" of chlorosis and the way it was understood served ideologically to conceal the growing importance of adolescent labor and the recognition of the social genesis of illness. In doing so, chlorosis was similar to other forms of chronic illness. In a time when the conditions of work were strikingly insalubrious, the etiological emphasis was on individual failure, not on physical or social conditions of work. I argue that notions of health and disease partake of the struggles and social relations of the society that sustains them, but in a way which hides that very social nature. In this sense, they are like Marx's concept of a commodity--and in being a commodity, diseases appear not to embody social relations, but rather to be part of nature. I suggest that we see this "nature" in part as a commodity fetish--something we construct as "other" for a reason--and that we rediscover the social in the natural.

  10. The Association of Health Literacy with Illness and Medication Beliefs among Patients with Chronic Obstructive Pulmonary Disease.

    Science.gov (United States)

    Kale, Minal S; Federman, Alex D; Krauskopf, Katherine; Wolf, Michael; O'Conor, Rachel; Martynenko, Melissa; Leventhal, Howard; Wisnivesky, Juan P

    2015-01-01

    Low health literacy is associated with low adherence to self-management in many chronic diseases. Additionally, health beliefs are thought to be determinants of self-management behaviors. In this study we sought to determine the association, if any, of health literacy and health beliefs among elderly individuals with COPD. We enrolled a cohort of patients with COPD from two academic urban settings in New York, NY and Chicago, IL. Health literacy was measured using the Short Test of Functional Health Literacy in Adults. Using the framework of the Self-Regulation Model, illness and medication beliefs were measured with the Brief Illness Perception Questionnaire (B-IPQ) and Beliefs about Medications Questionnaire (BMQ). Unadjusted analyses, with corresponding Cohen's d effect sizes, and multiple logistic regression were used to assess the relationships between HL and illness and medication beliefs. We enrolled 235 participants, 29% of whom had low health literacy. Patients with low health literacy were more likely to belong to a racial minority group (pliteracy were less likely to believe they will always have COPD (p = 0.003, Cohen's d = 0.42), and were more likely to be concerned about their illness ((p = 0.04, Cohen's d = 0.17). In analyses adjusted for sociodemographic factors and other health beliefs, patients with low health literacy were less likely to believe that they will always have COPD (odds ratio [OR]: 0.78, 95% confidence interval [CI]: 0.65-0.94). In addition, the association of low health literacy with expressed concern about medications remained significant (OR: 1.20, 95% CI: 1.05-1.37) though the association of low health literacy with belief in the necessity of medications was no longer significant (OR: 0.92, 95% CI: 0.82-1.04). In this cohort of urban individuals with COPD, low health literacy was prevalent, and associated with illness beliefs that predict decreased adherence. Our results suggest that targeted strategies to address low health

  11. The Association of Health Literacy with Illness and Medication Beliefs among Patients with Chronic Obstructive Pulmonary Disease.

    Directory of Open Access Journals (Sweden)

    Minal S Kale

    Full Text Available Low health literacy is associated with low adherence to self-management in many chronic diseases. Additionally, health beliefs are thought to be determinants of self-management behaviors. In this study we sought to determine the association, if any, of health literacy and health beliefs among elderly individuals with COPD.We enrolled a cohort of patients with COPD from two academic urban settings in New York, NY and Chicago, IL. Health literacy was measured using the Short Test of Functional Health Literacy in Adults. Using the framework of the Self-Regulation Model, illness and medication beliefs were measured with the Brief Illness Perception Questionnaire (B-IPQ and Beliefs about Medications Questionnaire (BMQ. Unadjusted analyses, with corresponding Cohen's d effect sizes, and multiple logistic regression were used to assess the relationships between HL and illness and medication beliefs.We enrolled 235 participants, 29% of whom had low health literacy. Patients with low health literacy were more likely to belong to a racial minority group (p<0.001, not be married (p = 0.006, and to have lower income (p<0.001 or education (p<0.001. In unadjusted analyses, patients with low health literacy were less likely to believe they will always have COPD (p = 0.003, Cohen's d = 0.42, and were more likely to be concerned about their illness ((p = 0.04, Cohen's d = 0.17. In analyses adjusted for sociodemographic factors and other health beliefs, patients with low health literacy were less likely to believe that they will always have COPD (odds ratio [OR]: 0.78, 95% confidence interval [CI]: 0.65-0.94. In addition, the association of low health literacy with expressed concern about medications remained significant (OR: 1.20, 95% CI: 1.05-1.37 though the association of low health literacy with belief in the necessity of medications was no longer significant (OR: 0.92, 95% CI: 0.82-1.04.In this cohort of urban individuals with COPD, low health literacy was

  12. Managing chronic illness: an immigrant woman's acquisition and use of health care knowledge.

    Science.gov (United States)

    Dyck, I

    1992-08-01

    As occupational therapists increasingly encounter a multicultural clientele, there is growing interest in the influence of a person's culture on his or her interactions with the environment. This paper presents a case study of a Chinese-Canadian immigrant woman with rheumatoid arthritis. The case study illustrates how the subject's family, community networks, and workplace, coupled with the occupational therapy clinical setting, intermingled to shape the daily management of her illness. The case material focuses on the subject's acquisition and use of different types of health care knowledge as she responds to her illness. It shows that the subject's experiences and management decisions about her health are closely linked to the material and social conditions of her life as a working-class immigrant woman. This article suggests that attention needs to be paid to the broader systems of the environment in understanding the responses of immigrant women to occupational therapy, rather than on the cultural distinctiveness of the clients.

  13. Social inequalities in 'sickness': European welfare states and non-employment among the chronically ill.

    Science.gov (United States)

    van der Wel, Kjetil A; Dahl, Espen; Thielen, Karsten

    2011-12-01

    The aim of this paper is to examine educational inequalities in the risk of non-employment among people with illnesses and how they vary between European countries with different welfare state characteristics. In doing so, the paper adds to the growing literature on welfare states and social inequalities in health by studying the often overlooked 'sickness'-dimension of health, namely employment behaviour among people with illnesses. We use European Union Statistics on Income and Living Conditions (EU-SILC) data from 2005 covering 26 European countries linked to country characteristics derived from Eurostat and OECD that include spending on active labour market policies, benefit generosity, income inequality, and employment protection. Using multilevel techniques we find that comprehensive welfare states have lower absolute and relative social inequalities in sickness, as well as more favourable general rates of non-employment. Hence, regarding sickness, welfare resources appear to trump welfare disincentives. Copyright © 2011 Elsevier Ltd. All rights reserved.

  14. Rehabilitation, weaning and physical therapy strategies in chronic critically ill patients.

    Science.gov (United States)

    Ambrosino, N; Venturelli, E; Vagheggini, G; Clini, E

    2012-02-01

    In critically ill patients, a prolonged hospital stay, due to the initial acute insult and adverse side-effects of drug therapy, may cause severe late complications, such as muscle weakness, prolonged symptoms, mood alterations and poor health-related quality of life. The clinical aims of physical rehabilitation in both medical and surgical intensive care units (ICUs) are focussed on the patient to improve their short- and even long-term care. The purpose of this article is to review the currently available evidence on comprehensive rehabilitation programmes in critically ill patients, and describe the key components and techniques used, particularly in specialised ICUs. Despite the literature suggesting that several techniques have led to beneficial effects and that muscle training is associated with weaning success, scientific evidence is limited. Due to limitations in undertaking comparative studies in ICUs, further studies with solid clinical short- and long-term outcome measures are now welcomed.

  15. A Micro-Developmental View of Parental Well-being in Families Coping with Chronic Illness

    OpenAIRE

    Queen, Tara L.; Butner, Jonathan; Wiebe, Deborah J.; Berg, Cynthia A.

    2016-01-01

    Families are co-regulating systems in which the daily experiences of one member affect the well-being of another member of the family. We examined daily, micro-developmental processes by modeling the associations between adolescents’ daily problems and emotional experiences in managing type 1 diabetes and changes in parental negative and positive affect surrounding the illness. Using a daily diary method, 161 mothers (M age=40 years), fathers (M age=42 years), and early adolescents (M age=12....

  16. Antibodies to Squalene in US Navy Persian Gulf War Veterans with Chronic Multisymptom Illness

    Science.gov (United States)

    2009-01-01

    flashbacks Diarrhea Crying spells Rash or skin ulcer Mouth sores Joint pains Fever Joint swelling Night sweats Sore throat Swollen glands /lymph nodes...immunizations or injections, or reported cancer, tumors , lung disease, hepatitis, neurological problems, digestive disease, or psychiatric illness. Additional...ing myelomas were SA13 (IgG to tetanus toxoid) [18], C5 (IgM to lipid A Gram-negative bacteria) [19], and RPMI 1788 (IgM to tumor necrosis factor beta

  17. Rehabilitation of mental illness and chronic pain: The impact on sick leave and health

    OpenAIRE

    Hägglund, Pathric; Johansson, Per-Olov; Laun, Lisa

    2015-01-01

    This paper exploits a government initiative to analyze the effect of cognitive behavioral therapy (CBT) for individuals with mild or moderate mental illness and multidisciplinary treatment (MDT) for individuals with pain in back and shoulders. We employ a propensity score matching approach to study the effects on sick leave, health care consumption and drug prescriptions. We find that CBT improved health and prevented sick leave for individuals who were not on sick leave when treatment was in...

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

    Science.gov (United States)

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

    2018-01-03

    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

  19. Qigong Exercise Alleviates Fatigue, Anxiety, and Depressive Symptoms, Improves Sleep Quality, and Shortens Sleep Latency in Persons with Chronic Fatigue Syndrome-Like Illness

    OpenAIRE

    Chan, Jessie S. M.; Ho, Rainbow T. H.; Chung, Ka-fai; Wang, Chong-wen; Yao, Tzy-jyun; Ng, Siu-man; Chan, Cecilia L. W.

    2014-01-01

    Objectives:. To evaluate the effectiveness of Baduanjin Qigong exercise on sleep, fatigue, anxiety, and depressive symptoms in chronic fatigue syndrome- (CFS-) like illness and to determine the dose-response relationship. Methods:. One hundred fifty participants with CFS-like illness (mean age = 39.0, SD = 7.9) were randomly assigned to Qigong and waitlist. Sixteen 1.5-hour Qigong lessons were arranged over 9 consecutive weeks. Pittsburgh Sleep Quality Index (PSQI), Chalder Fatigue Scale (ChF...

  20. What is competent communication behaviour of patients in physician consultations? - Chronically-ill patients answer in focus groups.

    Science.gov (United States)

    Schmidt, Erika; Schöpf, Andrea C; Farin, Erik

    2017-09-01

    Many desirable outcomes depend on good patient-physician communication. Patient-based perspectives of what constitutes competent communication behavior with physicians are needed for patient-oriented health care. Therefore it was our main aim to identify competent patient communication skills from the patient's perspective. We also wanted to reveal any differences in opinion among various groups (chronic ischemic heart disease, chronic low back pain, breast cancer). This study examined nine guideline-supported focus groups in rehabilitation centers. The criterion for study inclusion was any one of the three diagnoses. Enrolled in the study were N = 49 patients (32 women) aged M = 60.1 (SD = 12.8). The interview recordings were transcribed and subjected to content analysis. We documented 396 commentaries in these interviews that were allocated to 82 different codes; these in turn resulted in the formation of 12 main topics. Examples are: posing questions, being an active and participatory patient, being aware of emotions and communicating them. This study represents stage two ('documentation of patient and clinician views') in the seven-stage model of communication research. Findings reveal that chronically-ill patients name behaviours that contribute to successful discussion with a physician. These enable us to develop communication trainings and design-measuring tools used for patient-based communication skills.

  1. Improving influenza vaccination in chronically ill children using a tertiary-care based vaccination clinic: Is there a role for the live-attenuated influenza vaccine (LAIV)?

    Science.gov (United States)

    Merckx, Joanna; McCormack, Deirdre; Quach, Caroline

    2016-02-03

    Children with underlying medical conditions should receive influenza vaccine (IV) yearly; yet this remains sub-optimal. We aimed to describe our experience with a tertiary-care hospital-based influenza vaccination clinic for this at-risk population. From October to December 2012, 2013, and 2014, we ran an influenza vaccination clinic at the Montreal Children's Hospital, where children with high-risk conditions come for their follow-up. Both injectable IV (IIV) and live-attenuated IV (LAIV) were offered free of charge to patients and their household contacts. Upon vaccination, parents were asked to fill a pre-piloted questionnaire. We vaccinated a total of 2640 high-risk children and 1912 household members during the three influenza vaccination seasons. In 2012 and 2013, 631 and 630 patients with chronic illnesses were vaccinated, compared to 1379 in 2014. Caregivers preferred LAIV primarily because no needle was involved (49.0%) and because it was perceived as less painful (46.9%). LAIV was administered to 69% (2012), 55% (2013) and 47% (2014) of high-risk children. The main reason for not receiving LAIV was because it was contra-indicated. A small fraction of children previously vaccinated with LAIV who did not present any contraindication to LAIV opted for IIV: 12/101 (11.8%) in 2013 and 16/272 (5.9%) in 2014. In 2014, this was mainly due to a previous negative experience with LAIV (11/16). Having an influenza vaccination clinic on site at a tertiary care hospital, where children come for their scheduled visits, facilitates yearly influenza vaccination in children with chronic illnesses. LAIV is preferred by caregivers and patients, when not contraindicated. Copyright © 2016 Elsevier Ltd. All rights reserved.

  2. The factor analytic structure of the Roberts Apperception Test for Children: a comparison of the standardization sample with a sample of chronically ill children.

    Science.gov (United States)

    Palomares, R S; Crowley, S L; Worchel, F F; Olson, T K; Rae, W A

    1991-06-01

    A confirmatory principal component factor analysis of the Roberts Apperception Test for Children was conducted using the standardization sample and a sample of chronically ill children. An interpretation of three- and four-factor solutions identified the three-factor solution as superior to the four-factor solution as measured by chi-square goodness of fit and coefficients of convergence. A cluster analysis using Ward's minimum variance method was calculated to determine the typical profiles that best describe the chronically ill sample. Results of this analysis reveal two distinct profiles that differ primarily on the level of adaptive psychological functioning.

  3. [Social exclusion and discrimination of chronically mentally ill people in the Lodz region].

    Science.gov (United States)

    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

  4. Narcissistic rage: The Achilles’ heel of the patient with chronic physical illness

    Directory of Open Access Journals (Sweden)

    Thomas Hyphantis

    2009-08-01

    Full Text Available Thomas Hyphantis1, Augustina Almyroudi1, Vassiliki Paika1, Panagiota Goulia1, Konstantinos Arvanitakis2,31Department of Psychiatry, Medical School, University of Ioannina, Ioannina, Greece; 2Canadian Institute of Psychoanalysis, Mcgill University, Montreal, Canada; 3Departments of Philosophy and Psychiatry, Mcgill University Health Centre, Montreal, CanadaAbstract: Based on the psychoanalytic reading of Homer’s Iliad whose principal theme is “Achilles’ rage” (the semi-mortal hero invulnerable in all of his body except for his heel, hence “Achilles’ heel” has come to mean a person’s principal weakness, we aimed to assess whether “narcissistic rage” has an impact on several psychosocial variables in patients with severe physical illness across time. In 878 patients with cancer, rheumatological diseases, multiple sclerosis, inflammatory bowel disease, and glaucoma, we assessed psychological distress (SCL-90 and GHQ-28, quality of life (WHOQOL-BREF, interpersonal difficulties (IIP-40, hostility (HDHQ, and defense styles (DSQ. Narcissistic rage comprised DSQ “omnipotence” and HDHQ “extraverted hostility”. Hierarchical multiple regressions analyses were performed. We showed that, in patients with disease duration less than one year, narcissistic rage had a minor impact on psychosocial variables studied, indicating that the rage was rather part of a “normal” mourning process. On the contrary, in patients with longer disease duration, increased rates of narcissistic rage had a great impact on all outcome variables, and the opposite was true for patients with low rates of narcissistic rage, indicating that narcissistic rage constitutes actually an “Achilles’ Heel” for patients with long-term physical illness. These findings may have important clinical implications.Keywords: consultation-liaison psychiatry, psychosomatics, narcissism, physical illness, quality of life, psychological distress, personality

  5. Altered food-cue processing in chronically ill and recovered women with anorexia nervosa

    NARCIS (Netherlands)

    Sanders, Nicole; Smeets, Paul A. M.; van Elburg, Annemarie A.; Danner, Unna N.; van Meer, Floor; Hoek, Hans W.; Adan, Roger A. H.

    2015-01-01

    Anorexia nervosa (AN) is a severe mental disorder characterized by food restriction and weight loss. This study aimed to test the model posed by Brooks et al. (2012a,b) that women suffering from chronic AN show decreased food-cue processing activity in brain regions associated with energy balance

  6. Altered food-cue processing in chronically ill and recovered women with anorexia nervosa

    NARCIS (Netherlands)

    Sanders, Nicole; Smeets, Paul A M; van Elburg, Annemarie A.; Danner, Unna N.; van Meer, Floor; Hoek, Hans W.; Adan, Roger A H

    2015-01-01

    Anorexia nervosa (AN) is a severe mental disorder characterized by food restriction and weight loss.This study aimed to test the model posed by Brooks et al. (2012a,b) that women suffering from chronic AN show decreased food-cue processing activity in brain regions associated with energy balance and

  7. Innovations in the nursing care of the chronically ill: a literature review from an international perspective.

    NARCIS (Netherlands)

    Temmink, D.; Francke, A.; Hutten, J.B.F.; Zee, J. van der; Huijer Abu-Saad, H.

    2000-01-01

    This literature review focuses on substitution-related innovations in the nursing care of chronic patients in six western industrialized countries. Differences between primary and secondary care-orientated countries in the kind of innovations implemented are discussed. Health care systems are

  8. Living with Chronic Kidney Disease : The role of illness perceptions, treatment perceptions and social support

    NARCIS (Netherlands)

    Jansen, D.L.

    2012-01-01

    Chronic Kidney Disease (CKD) patients, particularly patients on dialysis, often experience difficulties with participating in daily activities, including paid work. Restrictions on the quantity or quality of activities, may impede people’ perceived autonomy and self-esteem. This thesis addressed the

  9. Sense of Coherence: Learning to Live with Chronic Illness through Health Education

    Science.gov (United States)

    Førland, Georg; Eriksson, Monica; Silèn, Charlotte; Ringsberg, Karin

    2018-01-01

    Objective: This study examines people's experiences of how to live with a chronic disease, their learning needs and their reasons for participating in a health education programme. The aim of the study was to examine if and how a Sense of Coherence (SOC) might guide an understanding of learning processes in health education. Methods: This study…

  10. Discipline and the Chronically Ill Child: What Are the Management Strategies To Promote Positive Patient Outcomes?

    Science.gov (United States)

    Richardson, Rita C.

    This paper reviews various discipline models and applies them to obtaining cooperation and compliance with medical treatment of children with chronic and acute medical conditions, especially End-Stage Renal Disease (ESRD). The definition of Other Health Impairments in the Individuals with Disabilities Education Act is cited and related to the…

  11. Chronic pain associated with the Chikungunya Fever: long lasting burden of an acute illness

    Directory of Open Access Journals (Sweden)

    Dallel Radhouane

    2010-02-01

    Full Text Available Abstract Background Chikungunya virus (CHIKV is responsible for major epidemics worldwide. Autochthonous cases were recently reported in several European countries. Acute infection is thought to be monophasic. However reports on chronic pain related to CHIKV infection have been made. In particular, the fact that many of these patients do not respond well to usual analgesics suggests that the nature of chronic pain may be not only nociceptive but also neuropathic. Neuropathic pain syndromes require specific treatment and the identification of neuropathic characteristics (NC in a pain syndrome is a major step towards pain control. Methods We carried out a cross-sectional study at the end of the major two-wave outbreak lasting 17 months in Réunion Island. We assessed pain in 106 patients seeking general practitioners with confirmed infection with the CHIK virus, and evaluated its impact on quality of life (QoL. Results The mean intensity of pain on the visual-analogical scale (VAS was 5.8 ± 2.1, and its mean duration was 89 ± 2 days. Fifty-six patients fulfilled the definition of chronic pain. Pain had NC in 18.9% according to the DN4 questionnaire. Conversely, about two thirds (65% of patients with NC had chronic pain. The average pain intensity was similar between patients with or without NC (6.0 ± 1.7 vs 6.1 ± 2.0. However, the total score of the Short Form-McGill Pain Questionnaire (SF-MPQ(15.5 ± 5.2 vs 11.6 ± 5.2; p Conclusions There exists a specific chronic pain condition associated to CHIKV. Pain with NC seems to be associated with more aggressive clinical picture, more intense impact in QoL and more challenging pharmacological treatment.

  12. Impact of health insurance status and a diagnosis of serious mental illness on whether chronically homeless individuals engage in primary care.

    Science.gov (United States)

    Chwastiak, Lydia; Tsai, Jack; Rosenheck, Robert

    2012-12-01

    We evaluated the impact of a diagnosis of serious mental illness on use of a primary care provider (vs the emergency department [ED]) as a source of care by people who were chronically homeless. We used data from 750 chronically homeless adults enrolled in the 11-site Collaborative Initiative to Help End Chronic Homelessness and identified demographic and clinical characteristics independently associated with using a primary care provider rather than an ED. The factor most strongly associated with using the ED as a regular source of medical care was previous-year lack of health insurance. Despite high rates of serious mental illness, neither a diagnosis of serious mental illness nor increased severity of psychiatric symptoms was associated with such use. Findings suggest that people who are chronically homeless and have chronic medical illness would be more likely to access care if they had health insurance. Individual states' deciding not to expand Medicaid coverage will likely have a tremendous impact on the health outcomes and health care costs associated with this and other vulnerable populations.

  13. Mechanism of attenuation of leptin signaling under chronic ligand stimulation

    Directory of Open Access Journals (Sweden)

    Bamberg-Lemper Simone

    2010-01-01

    Full Text Available Abstract Background Leptin is an adipocyte-derived hormone that acts via its hypothalamic receptor (LEPRb to regulate energy balance. A downstream effect essential for the weight-regulatory action of leptin is the phosphorylation and activation of the latent transcription factor STAT3 by LEPRb-associated Janus kinases (JAKs. Obesity is typically associated with chronically elevated leptin levels and a decreased ability of LEPRb to activate intracellular signal transduction pathways (leptin resistance. Here we have studied the roles of the intracellular tyrosine residues in the negative feedback regulation of LEPRb-signaling under chronic leptin stimulation. Results Mutational analysis showed that the presence of either Tyr985 and Tyr1077 in the intracellular domain of LEPRb was sufficient for the attenuation of STAT3 phosphorylation, whereas mutation of both tyrosines rendered LEPRb resistant to feedback regulation. Overexpression and RNA interference-mediated downregulation of suppressor of cytokine signaling 3 (SOCS3 revealed that both Tyr985 and Tyr1077 were capable of supporting the negative modulatory effect of SOCS3 in reporter gene assays. In contrast, the inhibitory effect of SOCS1 was enhanced by the presence of Tyr985 but not Tyr1077. Finally, the reduction of the STAT-phosphorylating activity of the LEPRb complex after 2 h of leptin stimulation was not accompanied by the dephosphorylation or degradation of LEPRb or the receptor-associated JAK molecule, but depended on Tyr985 and/or Tyr1077. Conclusions Both Tyr985 and Tyr1077 contribute to the negative regulation of LEPRb signaling. The inhibitory effects of SOCS1 and SOCS3 differ in the dependence on the tyrosine residues in the intracellular domain of LEPRb.

  14. Passerine birds breeding under chronic noise experience reduced fitness.

    Directory of Open Access Journals (Sweden)

    Julia Schroeder

    Full Text Available BACKGROUND: Fitness in birds has been shown to be negatively associated with anthropogenic noise, but the underlying mechanisms remain obscure. It is however crucial to understand the mechanisms of how urban noise impinges on fitness to obtain a better understanding of the role of chronic noise in urban ecology. Here, we examine three hypotheses on how noise might reduce reproductive output in passerine birds: (H1 by impairing mate choice, (H2 by reducing territory quality and (H3 by impeding chick development. METHODOLOGY/PRINCIPAL FINDINGS: We used long-term data from an island population of house sparrows, Passer domesticus, in which we can precisely estimate fitness. We found that nests in an area affected by the noise from large generators produced fewer young, of lower body mass, and fewer recruits, even when we corrected statistically for parental genetic quality using a cross-fostering set-up, supporting H3. Also, individual females provided their young with food less often when they bred in the noisy area compared to breeding attempts by the same females elsewhere. Furthermore, we show that females reacted flexibly to increased noise levels by adjusting their provisioning rate in the short term, which suggests that noise may be a causal factor that reduces reproductive output. We rejected H1 and H2 because nestbox occupancy, parental body mass, age and reproductive investment did not differ significantly between noisy and quiet areas. CONCLUSIONS/SIGNIFICANCE: OUR RESULTS SUGGEST A PREVIOUSLY UNDESCRIBED MECHANISM TO EXPLAIN HOW ENVIRONMENTAL NOISE CAN REDUCE FITNESS IN PASSERINE BIRDS: by acoustically masking parent-offspring communication. More importantly, using a cross-fostering set-up, our results demonstrate that birds breeding in a noisy environment experience significant fitness costs. Chronic noise is omnipresent around human habitation and may produces similar fitness consequences in a wide range of urban bird species.

  15. A classroom mind/body wellness intervention for older adults with chronic illness: comparing immediate and 1-year benefits.

    Science.gov (United States)

    Rybarczyk, B; DeMarco, G; DeLaCruz, M; Lapidos, S; Fortner, B

    2001-01-01

    The authors tested the efficacy of a mind/body wellness intervention for older adults with chronic illness. They randomly assigned 243 physician-referred patients from an urban HMO to a classroom intervention or a wait-list control group. The intervention provided instruction on mind/body relationships; relaxation training; cognitive restructuring; problem-solving; communication; and behavioral treatment for insomnia, nutrition, and exercise. At posttreatment, the intervention group had significant decreases in self-reported sleep difficulties, pain, anxiety, and depression symptoms compared with controls. The intervention also led to a significant decrease in "chance" and "powerful others" health locus of control beliefs. At 1-year follow-up, the intervention group maintained benefits in sleep and health locus of control and also reported a significant increase in health behaviors compared with controls. Pain, anxiety, and depression benefits were not maintained. This type of classroom intervention appears to have some lasting effects on health behaviors and beliefs.

  16. Supportive and palliative care for patients with chronic mental illness including dementia.

    Science.gov (United States)

    Lloyd-Williams, Mari; Abba, Katharine; Crowther, Jacqueline

    2014-09-01

    People with preexisting mental illness are known to have difficulty accessing healthcare services including palliative care and people with dementia have similar issues accessing palliative care. The review addressed the time period from January 2013 to March 2014. There were few articles addressing issues for palliative and supportive care for patients with preexisting mental health issues. The main factor that would improve care is interdisciplinary working between mental healthcare teams and palliative care teams. In contrast, there were many published articles on the palliative and supportive care needs for people with dementia. These articles included consensus statements, models of care; studies of why models of care, for example Advanced Care Planning were not being implemented; and carer reports of care in the last year of life. Urgent research is required as to how support for people with preexisting mental illness who require palliative care can be improved--excellent liaison between mental health and palliative care teams is essential. There is much research on palliative care needs for people with dementia but an apparent lack of innovative approaches to care including care of people within their family home.

  17. Adiponectin Potentially Contributes to the Antidepressive Effects of Baduanjin Qigong Exercise in Women With Chronic Fatigue Syndrome-Like Illness.

    Science.gov (United States)

    Chan, Jessie S M; Li, Ang; Ng, Siu-Man; Ho, Rainbow T H; Xu, Aimin; Yao, Tzy-Jyun; Wang, Xiao-Min; So, Kwok-Fai; Chan, Cecilia L W

    2017-03-13

    Our recent study demonstrates that adiponectin signaling plays a significant role in mediating physical exercise-exerted effects on hippocampal neurogenesis and antidepression in mice. Whether the findings can be translated to humans remains unknown. This study aimed to investigate the effects of Baduanjin Qigong exercise on adiponectin and to evaluate whether adiponectin is involved in the antidepressive effects of Qigong exercise on chronic fatigue syndrome (CFS)-like illness. This is a randomized, waitlist-controlled trial. One hundred eight female participants were randomly assigned to either Qigong exercise or waitlist groups. Sixteen 1.5-h Qigong lessons were conducted. Outcome measures were taken at three time points. Baseline adiponectin levels were negatively associated with body weight, body mass index, waist circumference, hip circumference, and waist/hip ratio in women with CFS-like illness. Compared with the waitlist control, Qigong exercise significantly reduced anxiety and depression symptoms and significantly raised plasma adiponectin levels (median = 0.8 vs. -0.1, p Qigong exercise were associated with decreases in depression scores for the Qigong group (r = -0.38, p = 0.04). Moreover, adjusted linear regression analysis further identified Qigong exercise and change in adiponectin levels as the significant factors accounting for reduction of depression symptoms. Baduanjin Qigong significantly increased adiponectin levels in females with CFS-like illness. Decreases in depression symptoms were associated with increases in adiponectin levels following Qigong exercise, indicating that the potential contribution of adiponectin to Qigong exercise elicited antidepressive effects in human subjects.

  18. Self-management of chronic illness: the role of 'habit' versus reflective factors in exercise and medication adherence.

    Science.gov (United States)

    Phillips, L Alison; Cohen, Joshua; Burns, Edith; Abrams, Jessica; Renninger, Steffi

    2016-12-01

    Non-adherence to health behaviors required for chronic illness self-management is pervasive. Advancing health-behavior theory to include behavioral initiation and maintenance factors, including reflective (e.g., belief- and feedback-based) and automatic (e.g., habit-based) mechanisms of adherence to different treatment-related behaviors could improve non-adherence prediction and intervention efforts. To test behavioral initiation and maintenance factors from an extended common sense self-regulation theoretical framework for predicting medication adherence and physical activity among patients with Type 2 diabetes. Patients (n = 133) in an in-person (n = 80) or online (n = 53) version of the study reported treatment-related (1) barriers, (2) beliefs and experiential feedback (reflective mechanisms of treatment-initiation and short-term repetition), and (3) habit strength (automatic mechanism of treatment-maintenance) for taking medication and engaging in regular physical activity at baseline. Behaviors were assessed via self-reports (n = 133) and objectively (electronic monitoring pill bottles, accelerometers; n = 80) in the subsequent month. Treatment-specific barriers and habit strength predicted self-reported and objective adherence for both behaviors. Beliefs were inconsistently related to behavior, even when habits were "weak". Experiential feedback from behavior was not related to adherence. Among patients with Type 2 diabetes diagnosis, medication and physical activity adherence were better predicted by their degree of automatic behavioral repetition than their beliefs/experiences with the treatment-actions. Habit strength should be an intervention target for chronic illness self-management; assessing it in practice settings may effectively detect non-adherence to existing treatment-regimens. However, future research and further refining of CS-SRM theory regarding the processes required for such habit development are needed.

  19. Heart transplant centers with multidisciplinary team show a higher level of chronic illness management - Findings from the International BRIGHT Study.

    Science.gov (United States)

    Cajita, Maan Isabella; Baumgartner, Eva; Berben, Lut; Denhaerynck, Kris; Helmy, Remon; Schönfeld, Sandra; Berger, Gabriele; Vetter, Christine; Dobbels, Fabienne; Russell, Cynthia L; De Geest, Sabina

    The objectives of this study were to: (1) explore the proportion of HTx centers that have a multidisciplinary team and (2) assess the relationship between multidisciplinarity and the level of chronic illness management (CIM). The International Society for Heart and Lung Transplantation (ISHLT) recommends a multidisciplinary approach in heart transplant (HTx) follow-up care but little is known regarding the proportion of HTx centers that meet this recommendation and the impact on patient care. HTx centers with a multidisciplinary team may offer higher levels of CIM, a care model that has the potential to improve outcomes after HTx. We conducted a secondary analysis of the BRIGHT study, a cross-sectional study in 11 countries. Multidisciplinarity in the 36 HTx centers was assessed through HTx director reports and was defined as having a team that was composed of physician(s), nurse(s), and another healthcare professional (either a social worker, psychiatrist, psychologist, pharmacist, dietician, physical therapist, or occupational therapist). CIM was assessed with the Patient Assessment of Chronic Illness Care (PACIC). Multiple linear regression assessed the relationship between multidisciplinarity and the level of CIM. Twenty-nine (80.6%) of the HTx centers had a multidisciplinary team. Furthermore, multidisciplinarity was significantly associated with higher levels of CIM (β = 5.2, P = 0.042). Majority of the HTx centers follows the ISHLT recommendation for a multidisciplinary approach. Multidisciplinarity was associated with CIM and point toward a structural factor that needs to be in place for moving toward CIM. Copyright © 2017 Elsevier Inc. All rights reserved.

  20. From Body to Mind and Spirit: Qigong Exercise for Bereaved Persons with Chronic Fatigue Syndrome-Like Illness

    Directory of Open Access Journals (Sweden)

    Jie Li

    2015-01-01

    Full Text Available Bereavement may bring negative impacts on the mind, body, and spiritual well-being of grieving persons. Some bereaved persons with chronic fatigue syndrome- (CFS- illness experience a dual burden of distress. This study investigated the effects of bereavement on CFS-like illness by comparing bereaved and nonbereaved participants. It also adopted a random group design to investigate the effectiveness of Qigong on improving the well-being of bereaved participants. The Qigong intervention comprised 10 group sessions delivered twice a week for 5 weeks and home-practice for at least three times a week lasting 15–30 minutes each. The participants’ fatigue, anxiety, and depression, quality of life (QoL, and spiritual well-being were measured at baseline and 3 months after treatment. The bereaved participants experienced significantly greater mental fatigue (16.09 versus 14.44, p=0.017 and lower physical QoL (34.02 versus 37.17, p=0.011 than their nonbereaved counterparts. After 3 months, the mental fatigue (−8 versus −4, p=0.010 and physical fatigue (−10 versus −5, p=0.007 experienced by intervention group had declined significantly, and improvements on their spirituality (14 versus −2, p=0.013 and psychological QoL (8.91 versus 0.69, p=0.002 scores exceeded those of the control group.

  1. From controlling to letting go: what are the psychosocial needs of parents of adolescents with a chronic illness?

    Science.gov (United States)

    Akre, Christina; Suris, Joan-Carles

    2014-10-01

    While one of the main objectives of adolescence is to achieve autonomy, for the specific population of adolescents with a chronic illness (CI), the struggle for autonomy is accentuated by the limits implied by their illness. However, little is known concerning the way their parents manage and cope with their children's autonomy acquisition. Our aim was to identify the needs and preoccupations of parents of adolescents with CI in coping with their children's autonomy acquisition and to determine whether mothers and fathers coped differently. Using a qualitative approach, 30 parents of adolescents with CI participated in five focus groups. Recruitment took place in five specialized pediatric clinics from our university hospital. Thematic analysis was conducted. Transcript analyses suggested four major categories of preoccupations, those regarding autonomy acquisition, giving or taking on autonomy, shared management of treatment and child's future. Some aspects implied differences between mothers' and fathers' viewpoints and ways of experiencing this period of life. Letting go can be hard for the father, mother, adolescent or all three. Helping one or the other can in turn improve family functioning as a whole. Reported findings may help health professionals better assist parents in managing their child's acquisition of autonomy. © The Author 2014. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.

  2. Religious versus Conventional Psychotherapy for Major Depression in Patients with Chronic Medical Illness: Rationale, Methods, and Preliminary Results

    Directory of Open Access Journals (Sweden)

    Harold G. Koenig

    2012-01-01

    Full Text Available This paper (1 reviews the physical and religious barriers to CBT that disabled medically ill-depressed patients face, (2 discusses research on the relationship between religion and depression-induced physiological changes, (3 describes an ongoing randomized clinical trial of religious versus secular CBT in chronically ill patients with mild-to-moderate major depression designed to (a overcome physical and religious barriers to CBT and (b compare the efficacy of religious versus secular CBT in relieving depression and improving immune and endocrine functions, and (4 presents preliminary results that illustrate the technical difficulties that have been encountered in implementing this trial. CBT is being delivered remotely via instant messaging, telephone, or Skype, and Christian, Jewish, Muslim, Buddhist, and Hindu versions of religious CBT are being developed. The preliminary results described here are particular to the technologies employed in this study and are not results from the CBT clinical trial whose findings will be published in the future after the study ends and data are analyzed. The ultimate goal is to determine if a psychotherapy delivered remotely that integrates patients’ religious resources improves depression more quickly than a therapy that ignores them, and whether religious CBT is more effective than conventional CBT in reversing depression-induced physiological changes.

  3. Setting the stage for chronic health problems: cumulative childhood adversity among homeless adults with mental illness in Vancouver, British Columbia.

    Science.gov (United States)

    Patterson, Michelle L; Moniruzzaman, Akm; Somers, Julian M

    2014-04-12

    It is well documented that childhood abuse, neglect and household dysfunction are disproportionately present in the backgrounds of homeless adults, and that these experiences adversely impact child development and a wide range of adult outcomes. However, few studies have examined the cumulative impact of adverse childhood experiences on homeless adults with mental illness. This study examines adverse events in childhood as predictors of duration of homelessness, psychiatric and substance use disorders, and physical health in a sample of homeless adults with mental illness. This study was conducted using baseline data from a randomized controlled trial in Vancouver, British Columbia for participants who completed the Adverse Childhood Experiences (ACE) scale at 18 months follow-up (n=364). Primary outcomes included current mental disorders; substance use including type, frequency and severity; physical health; duration of homelessness; and vocational functioning. In multivariable regression models, ACE total score independently predicted a range of mental health, physical health, and substance use problems, and marginally predicted duration of homelessness. Adverse childhood experiences are overrepresented among homeless adults with complex comorbidities and chronic homelessness. Our findings are consistent with a growing body of literature indicating that childhood traumas are potent risk factors for a number of adult health and psychiatric problems, particularly substance use problems. Results are discussed in the context of cumulative adversity and self-trauma theory. This trial has been registered with the International Standard Randomized Control Trial Number Register and assigned ISRCTN42520374.

  4. Comparison of joint modeling and landmarking for dynamic prediction under an illness-death model.

    Science.gov (United States)

    Suresh, Krithika; Taylor, Jeremy M G; Spratt, Daniel E; Daignault, Stephanie; Tsodikov, Alexander

    2017-11-01

    Dynamic prediction incorporates time-dependent marker information accrued during follow-up to improve personalized survival prediction probabilities. At any follow-up, or "landmark", time, the residual time distribution for an individual, conditional on their updated marker values, can be used to produce a dynamic prediction. To satisfy a consistency condition that links dynamic predictions at different time points, the residual time distribution must follow from a prediction function that models the joint distribution of the marker process and time to failure, such as a joint model. To circumvent the assumptions and computational burden associated with a joint model, approximate methods for dynamic prediction have been proposed. One such method is landmarking, which fits a Cox model at a sequence of landmark times, and thus is not a comprehensive probability model of the marker process and the event time. Considering an illness-death model, we derive the residual time distribution and demonstrate that the structure of the Cox model baseline hazard and covariate effects under the landmarking approach do not have simple form. We suggest some extensions of the landmark Cox model that should provide a better approximation. We compare the performance of the landmark models with joint models using simulation studies and cognitive aging data from the PAQUID study. We examine the predicted probabilities produced under both methods using data from a prostate cancer study, where metastatic clinical failure is a time-dependent covariate for predicting death following radiation therapy. © 2017 WILEY-VCH Verlag GmbH & Co. KGaA, Weinheim.

  5. How Social Participation Benefits the Chronically Ill: Self-Management as a Mediating Pathway.

    Science.gov (United States)

    Ang, Shannon

    2018-03-01

    Few studies have tested the purported causal mechanisms between social participation and health, especially among those in poor health. This study aimed to determine whether self-management of chronic disease operates as a pathway through which social participation affects health-related quality of life. I utilized causal mediation analysis among 600 low-income older Singaporeans living with chronic conditions, to test whether self-management mediates the association between social participation and health-related quality of life. Results show that self-management fully mediated the positive effect of informal social participation on health-related quality of life. Formal social participation was found to have a negative direct effect on health-related quality of life. These findings reiterate the primacy of family and friends for older adults, but highlight that a better understanding of formal engagement with the low-income population is still needed.

  6. On-line health companion contact among chronically ill in the Netherlands

    OpenAIRE

    Dumaij, Adrie C. M.; Tijssen, E. C. G.

    2011-01-01

    A health companion is a patient who supports another patient or patient group with a similar health condition. Health companions deliver more and more support by the Internet. However, little is known about the characteristics of the users, their motivation, type of technology used and effects on health and the healthcare delivery process. The objective of the paper is to understand motivation, technology and effects of on-line health companion contact in the Netherlands concerning chronic di...

  7. Chronic Illness and Disordered Eating: A Discussion of the Literature12

    OpenAIRE

    Quick, Virginia M.; Byrd-Bredbenner, Carol; Neumark-Sztainer, Dianne

    2013-01-01

    This paper describes the prevalence of eating disorders and disordered eating behaviors, the reasons why these practices are endorsed, and the potential consequences in youths and young adults with selected diet-related chronic health conditions (DRCHCs) and provides recommendations for eating disorder prevention interventions and research efforts. Although it remains unclear whether the prevalence of eating disorders is higher in those with DRCHCs compared with the general population, overal...

  8. Performance of community health workers under integrated community case management of childhood illnesses in eastern Uganda

    Directory of Open Access Journals (Sweden)

    Kalyango Joan N

    2012-08-01

    Full Text Available Abstract Background Curative interventions delivered by community health workers (CHWs were introduced to increase access to health services for children less than five years and have previously targeted single illnesses. However, CHWs in the integrated community case management of childhood illnesses strategy adopted in Uganda in 2010 will manage multiple illnesses. There is little documentation about the performance of CHWs in the management of multiple illnesses. This study compared the performance of CHWs managing malaria and pneumonia with performance of CHWs managing malaria alone in eastern Uganda and the factors influencing performance. Methods A mixed methods study was conducted among 125 CHWs providing either dual malaria and pneumonia management or malaria management alone for children aged four to 59 months. Performance was assessed using knowledge tests, case scenarios of sick children, review of CHWs’ registers, and observation of CHWs in the dual management arm assessing respiratory symptoms. Four focus group discussions with CHWs were also conducted. Results CHWs in the dual- and single-illness management arms had similar performance with respect to: overall knowledge of malaria (dual 72%, single 70%; eliciting malaria signs and symptoms (50% in both groups; prescribing anti-malarials based on case scenarios (82% dual, 80% single; and correct prescription of anti-malarials from record reviews (dual 99%, single 100%. In the dual-illness arm, scores for malaria and pneumonia differed on overall knowledge (72% vs 40%, p vs 96%, p  Conclusion CHWs providing dual-illness management handled malaria cases as well as CHWs providing single-illness management, and also performed reasonably well in the management of pneumonia. With appropriate training that emphasizes pneumonia assessment, adequate supervision, and provision of drugs and necessary supplies, CHWs can provide integrated treatment for malaria and pneumonia.

  9. [Coping with chronic illness and multiple medicines in older age: self-management support as an obligation in nursing].

    Science.gov (United States)

    Müller-Mundt, G; Schaeffer, D

    2011-02-01

    In later stages of chronic disease and especially in older age, chronically ill people are often dependent on multiple medicines. Coming to terms with complex medication regimes in everyday life is a challenging task. To provide the support actually needed, patient-centered interventions are essential, not only taking into account the patients' needs and preferences, but also promoting their ability to self manage their disease(s) and their medication regime. This paper outlines the results of a research project aimed at developing and evaluating an intervention to integrate self-management support into primary care, based on a qualitative exploration of the patients' and professionals' views. The findings stress that home care nurses should take an active part in self-management support but need to be prepared adequately. Therefore, a two-tier intervention was developed and evaluated in a prospective control study, consisting of a qualified training and guidelines for practice. The intervention serves to expand the nurses' professional competence to provide the needed individually tailored self-management support in home care.

  10. Impact of obesity on health-related quality of life in patients with chronic illness.

    Science.gov (United States)

    Katz, D A; McHorney, C A; Atkinson, R L

    2000-11-01

    To determine the association between overweight and obesity and health-related quality of life (HRQOL) in patients with chronic conditions typical of those seen in general medical practice, after accounting for the effects of depression and medical comorbidities. Cross-sectional analysis of data from the Medical Outcomes Study. Offices of physicians practicing family medicine, internal medicine, endocrinology, cardiology, and psychiatry in three U.S. cities. We surveyed 2,931 patients with chronic medical and psychiatric conditions. The patients completed a self-administered questionnaire at enrollment and had complete data on height and weight. Body mass index (BMI), chronic medical conditions, and depression were obtained by structured interview. Health-related quality of life was measured by the SF-36 Health Survey. Patients who were overweight (BMI 25.0-29.9 kg/m2), patients with class I obesity (BMI 30.0-34.9 kg/m2), and patients with class II-III obesity (BMI > or = 35 kg/m2) had significantly lower adjusted physical function scores (by 3.4, 7.8, and 13.8 points, respectively) compared with nonoverweight patients. Patients with class I and class II-III obesity also had significantly lower adjusted general health perceptions scores (by 2.8 and 4.4 points, respectively) and lower adjusted vitality scores (by 4.0 and 7.1 points, respectively), compared with nonoverweight patients. No significant differences between nonoverweight, overweight, and obese patients were observed for the mental health scale. Women with elevated BMI had significantly lower HRQOL scores compared with the scores of obese men in several domains. Additionally, blacks with elevated BMI had significantly lower scores than whites in several domains of HRQOL. Overweight and obesity have the largest association with physical function measures. Recent national standards, which have lowered the threshold for defining overweight, identify patients who are more likely to have clinically significant

  11. Effects of Qigong Exercise on Fatigue, Anxiety, and Depressive Symptoms of Patients with Chronic Fatigue Syndrome-Like Illness: A Randomized Controlled Trial

    Directory of Open Access Journals (Sweden)

    Jessie S. M. Chan

    2013-01-01

    Full Text Available Background. Anxiety/depressive symptoms are common in patients with chronic fatigue syndrome- (CFS- like illness. Qigong as a modality of complementary and alternative therapy has been increasingly applied by patients with chronic illnesses, but little is known about the effect of Qigong on anxiety/depressive symptoms of the patients with CFS-like illness. Purpose. To investigate the effects of Qigong on fatigue, anxiety, and depressive symptoms in patients with CFS-illness. Methods. One hundred and thirty-seven participants who met the diagnostic criteria for CFS-like illness were randomly assigned to either an intervention group or a waitlist control group. Participants in the intervention group received 10 sessions of Qigong training twice a week for 5 consecutive weeks, followed by home-based practice for 12 weeks. Fatigue, anxiety, and depressive symptoms were assessed at baseline and postintervention. Results. Total fatigue score [F1,135=13.888, P<0.001], physical fatigue score [F1,135=20.852, P<0.001] and depression score [F1,135=9.918, P=0.002] were significantly improved and mental fatigue score [F1,135=3.902, P=0.050] was marginally significantly improved in the Qigong group compared to controls. The anxiety score was not significantly improved in the Qigong group. Conclusion. Qigong may not only reduce the fatigue symptoms, but also has antidepressive effect for patients with CFS-like illness. Trial registration HKCTR-1200.

  12. Effects of qigong exercise on fatigue, anxiety, and depressive symptoms of patients with chronic fatigue syndrome-like illness: a randomized controlled trial.

    Science.gov (United States)

    Chan, Jessie S M; Ho, Rainbow T H; Wang, Chong-Wen; Yuen, Lai Ping; Sham, Jonathan S T; Chan, Cecilia L W

    2013-01-01

    Background. Anxiety/depressive symptoms are common in patients with chronic fatigue syndrome- (CFS-) like illness. Qigong as a modality of complementary and alternative therapy has been increasingly applied by patients with chronic illnesses, but little is known about the effect of Qigong on anxiety/depressive symptoms of the patients with CFS-like illness. Purpose. To investigate the effects of Qigong on fatigue, anxiety, and depressive symptoms in patients with CFS-illness. Methods. One hundred and thirty-seven participants who met the diagnostic criteria for CFS-like illness were randomly assigned to either an intervention group or a waitlist control group. Participants in the intervention group received 10 sessions of Qigong training twice a week for 5 consecutive weeks, followed by home-based practice for 12 weeks. Fatigue, anxiety, and depressive symptoms were assessed at baseline and postintervention. Results. Total fatigue score [F(1,135) = 13.888, P Qigong group compared to controls. The anxiety score was not significantly improved in the Qigong group. Conclusion. Qigong may not only reduce the fatigue symptoms, but also has antidepressive effect for patients with CFS-like illness. Trial registration HKCTR-1200.

  13. Modern Models of Psychosocial Adaptation to Chronic Illness and Disability as Viewed through the Prism of Lewin's Field Theory: A Comparative Review

    Science.gov (United States)

    Livneh, Hanoch; Bishop, Malachy; Anctil, Tina M.

    2014-01-01

    Purpose: In this article, we describe how four recent models of psychosocial adaptation to chronic illness and disability (CID) could be fruitfully conceptualized and compared by resorting to the general framework of Lewin's field theory--a theory frequently regarded as a precursor and the primary impetus to the development of the field of…

  14. Distanciation in Ricoeur's theory of interpretation: narrations in a study of life experiences of living with chronic illness and home mechanical ventilation

    DEFF Research Database (Denmark)

    Dreyer, Pia S.; Pedersen, Birthe D

    2009-01-01

    , and this concept of distanciation will be illustrated with reference to narrations from a study of patient's life experiences living with chronic illness and home mechanical ventilation in Denmark. Distanciation in the interpretation objectifies the text, and narration in a poetic language creates a particular...

  15. A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system

    NARCIS (Netherlands)

    Hatzmann, J.; Maurice-Stam, H.; Heymans, H.S.A.; Grootenhuis, M.A.

    2009-01-01

    BACKGROUND: Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and

  16. BEST CANDIDATES FOR COGNITIVE TREATMENT OF ILLNESS PERCEPTIONS IN CHRONIC LOW BACK PAIN : RESULTS OF A THEORY-DRIVEN PREDICTOR STUDY

    NARCIS (Netherlands)

    Siemonsma, Petra C.; Stuive, Ilse; Roorda, Leo D.; Vollebregt, Joke A.; Lankhorst, Gustaaf J.; Lettinga, Ant T.

    Objective: The aim of this study was to identify treatment-specific predictors of the effectiveness of a method of evidence-based treatment: cognitive treatment of illness perceptions. This study focuses on what treatment works for whom, whereas most prognostic studies focusing on chronic

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

    NARCIS (Netherlands)

    Nes, A.A.; Eide, H.; Kristjansdottir, O.B.; Dulmen, S. van

    2013-01-01

    OBJECTIVE: 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

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

    NARCIS (Netherlands)

    Nes, A.A.G.; Eide, H.; Kristjánsdóttir, O.B.; Dulmen, S. van

    2013-01-01

    Objective: 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

  19. Individual care plans for chronically ill patients within primary care in the Netherlands: dissemination and associations with patient characteristics and patients-perceived quality of care.

    NARCIS (Netherlands)

    Jansen, D.L.; Heijmans, M.; Rijken, M.

    2015-01-01

    Objective. 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. Design. Crosssectional study using survey data from a panel of

  20. The social effects in adult life of chronic physical illness since childhood.

    Science.gov (United States)

    Kokkonen, J

    1995-08-01

    An unselected group of 487 (222 females, 265 males) patients with juvenile onset chronic physical disorders was studied at the age of 19-25 years for their social outcome and compared with an age-matched group of 202 physically healthy controls. The interview covered both comprehensive and vocational schooling, data on their employment status, relationship to parents and sexual development in detail. The overall social maturation index showed poor social maturation in patients more often than in the controls. At the time of the study 23% of the patients and 11% of the controls had no vocational education or were not on their way to gaining it. Excluding those with a disability pension (10%), working experience, employment status and unemployment were fairly similar in both groups. Sexual development was delayed more often in the patients than in the controls and the patients were significantly more often unmarried and living in the same household as their parents. However, social and psychological factors accumulating in excess in the patient group were observed more significant than the physical disease to the delayed social maturation. Among patients with chronic physical disorders there is a minor group with delayed social maturation. Those at risk can easily be recognized even before adolescence in order to offer them and their parents support to achieve reasonable social development in early adulthood.

  1. Chronic Illness and Disordered Eating: A Discussion of the Literature12

    Science.gov (United States)

    Quick, Virginia M.; Byrd-Bredbenner, Carol; Neumark-Sztainer, Dianne

    2013-01-01

    This paper describes the prevalence of eating disorders and disordered eating behaviors, the reasons why these practices are endorsed, and the potential consequences in youths and young adults with selected diet-related chronic health conditions (DRCHCs) and provides recommendations for eating disorder prevention interventions and research efforts. Although it remains unclear whether the prevalence of eating disorders is higher in those with DRCHCs compared with the general population, overall findings suggest that young people with DRCHCs may be at risk of endorsing disordered eating behaviors that may lead to diagnosis of an eating disorder and other health problems over the course of their treatment. Thus, health care providers should be aware that young people with DRCHCs may be at risk of eating disorders and carefully monitor psychological changes and the use of unhealthy weight control methods. It is also important to develop and evaluate theory-based interventions and disease-specific eating disorder risk screening tools that are effective in halting the progression of eating disorders and negative health outcomes in young people with chronic health conditions. PMID:23674793

  2. Resident Dyads Providing Transition Care to Adolescents and Young Adults With Chronic Illnesses and Neurodevelopmental Disabilities.

    Science.gov (United States)

    Chung, Richard J; Jasien, Joan; Maslow, Gary R

    2017-04-01

    Youth with special health care needs often experience difficulty transitioning from pediatric to adult care. These difficulties may derive in part from lack of physician training in transition care and the challenges health care providers experience establishing interdisciplinary partnerships to support these patients. This educational innovation sought to improve pediatrics and adult medicine residents' interdisciplinary communication and collaboration. Residents from pediatrics, medicine-pediatrics, and internal medicine training programs participated in a transitions clinic for patients with chronic health conditions aged 16 to 26 years. Residents attended 1 to 4 half-day clinic sessions during 1-month ambulatory rotations. Pediatrics/adult medicine resident dyads collaboratively performed psychosocial and medical transition consultations that addressed health care navigation, self-care, and education and vocation topics. Two to 3 attending physicians supervised each clinic session (4 hours) while concurrently seeing patients. Residents completed a preclinic survey about baseline attitudes and experiences, and a postclinic survey about their transitions clinic experiences, changes in attitudes, and transition care preparedness. A total of 46 residents (100% of those eligible) participated in the clinic and completed the preclinic survey, and 25 (54%) completed the postclinic survey. A majority of respondents to the postclinic survey reported positive experiences. Residents in both pediatrics and internal medicine programs reported improved preparedness for providing transition care to patients with chronic health conditions and communicating effectively with colleagues in other disciplines. A dyadic model of collaborative transition care training was positively received and yielded improvements in immediate self-assessed transition care preparedness.

  3. Guidelines for Psychological Assistance to Chronically Ill Children and Their Parents

    Directory of Open Access Journals (Sweden)

    Buslayeva A.S.,

    2016-04-01

    Full Text Available This study explored psychological features in 33 children aged 8—17 years suffering from rheumatic disorder and in their mothers. 11 children were in the emergency department, 22 in the department of rheumatology. The following methods were used: observation, conversation, the Draw-a-Person and Three Wishes tests, the Dembo-Rubinstein self-esteem scales, and the Parent’s Essay technique. According to the level of their mental activity the children were divided into 4 groups: ‘inactive’, ‘passive’, ‘relatively active’ and ‘active’. Working with the ‘inactive’ children was impossible; the main task was to help their mothers cope with emotional distress. The ‘passive’ children received emotional support and were taught how to understand and express their needs; their parents were taught how to communicate with the child in various ways. Working with the ‘relatively active’ children and their parents had the aim of reestablish- ing productive interactions between them. Working with the ‘active’ children consisted of supporting their self-esteem, self-respect and interests; their parents were taught to better understand age-specific and indi- vidual psychological features of the child and to take into account limitations caused by the illness.

  4. Accuracy of reported service use in a cohort of people who are chronically homeless and seriously mentally ill.

    Science.gov (United States)

    Somers, Julian M; Moniruzzaman, Akm; Currie, Lauren; Rezansoff, Stefanie N; Russolillo, Angela; Parpouchi, Milad

    2016-02-25

    Self-reported service use is an integral feature of interventional research with people who are homeless and mentally ill. The objective of this study was to investigate the accuracy of self-reported involvement with major categories of publicly funded services (health, justice, social welfare) within this sub-population. Measures were administered pre-randomization in two randomized controlled trials, using timeline follow back with calendar aids for Health, Social, and Justice Service Use, compared to linked administrative data. Variables examined were: psychiatric admissions (both extended stays of more than 6 months and two or more stays within 5 years); emergency department visits, general hospitalization and jail in the past 6 months; and income assistance in the past 1 month. Participants (n = 433) met criteria for homelessness and a least one mental illness. Prevalence adjusted and bias adjusted kappa (PABAK) values ranged between moderate and almost perfect for extended psychiatric hospital separations (PABAK: 0.77; 95 % confidence interval (CI) = 0.71, 0.83), multiple psychiatric hospitalizations (PABAK = 0.50, 95 % CI = 0.41, 0.59), emergency department visits (PABAK: 0.77; 95 % CI = 0.71, 0.83), jail (PABAK: 0.74; 95 % CI = 0.68, 0.81), and income assistance (PABAK: 0.82; 95 % CI = 0.76, 0.87). Significant differences in under versus over reporting were also found. People who are homeless and mentally ill reliably reported their overall use of health, justice, and income assistance services. Evidence of under-reporting and over-reporting of certain variables has implications for specific research questions. ISRCTN registry: 57595077 (Vancouver at Home Study: Housing First plus Assertive Community Treatment versus congregate housing plus supports versus treatment as usual); and 66721740 (Vancouver at Home study: Housing First plus Intensive Case management versus treatment as usual).

  5. Social living mitigates the costs of a chronic illness in a cooperative carnivore

    Science.gov (United States)

    Almberg, Emily S.; Cross, Paul C.; Dobson, Andrew P.; Smith, Douglas W.; Metz, Matthew C; Stahler, Daniel R.; Hudson, Peter J.

    2015-01-01

    Infection risk is assumed to increase with social group size, and thus be a cost of group living. We assess infection risk and costs with respect to group size using data from an epidemic of sarcoptic mange (Sarcoptes scabiei) among grey wolves (Canis lupus). We demonstrate that group size does not predict infection risk and that individual costs of infection, in terms of reduced survival, can be entirely offset by having sufficient numbers of pack-mates. Infected individuals experience increased mortality hazards with increasing proportions of infected pack-mates, but healthy individuals remain unaffected. The social support of group hunting and territory defence are two possible mechanisms mediating infection costs. This is likely a common phenomenon among other social species and chronic infections, but difficult to detect in systems where infection status cannot be measured continuously over time.

  6. Cost of illness for chronic stable angina patients enrolled in a self-management education trial

    Science.gov (United States)

    McGillion, Michael; Croxford, Ruth; Watt-Watson, Judy; LeFort, Sandra; Stevens, Bonnie; Coyte, Peter

    2008-01-01

    BACKGROUND: Chronic stable angina (CSA) is a major debilitating health problem in Canada. A paucity of relevant cardiovascular data sets has precluded a detailed examination of the impact of interventions on CSA-related costs and its broader economic burden. OBJECTIVES: As part of a larger clinical trial, the authors sought to determine the short-term impact of a standardized self-management training program on CSA-related costs. A secondary objective was to estimate the total annualized cost of CSA per patient from a societal perspective. METHODS: Pre- and three-month post-test cost data were collected on 117 participants using the Ambulatory Home Care Record. Mean annualized direct, indirect and system-related CSA costs (2003 to 2005) were estimated; total per-patient CSA costs from a societal perspective were calculated as the sum of these costs. RESULTS: The mean (± SD) age of participants was 68±11 years; 80% were male. The program did not impact costs in the short-term. Direct annual out-of-pocket costs, including money paid for health care, travel to appointments, medication, equipment and home support totaled $3,267. Indirect costs, reflecting the value of all unpaid time spent by those engaged in angina-related care, were $12,963. System costs, including costs paid by public and private insurers, were $2,979. Total estimated annual CSA costs from a societal perspective were $19,209 per patient. CONCLUSIONS: These data suggest that CSA imposes a major economic burden, comparable with other prevalent conditions such as chronic noncancer pain. Advancements in self-management training research are needed to help reduce the economic burden of CSA in Canada. PMID:18841254

  7. Childhood illnesses and malnutrition in under five children in drought affected desert area of western Rajasthan, India.

    Science.gov (United States)

    Singh, Madhu B; Lakshminarayana, J; Fotedar, R; Anand, P K

    2006-03-01

    The study was undertaken to asses the impact of drought on childhood illnesses and nutrition in under five children of rural population using three stage sampling design. The study has been carried out in 24 villages belonging to 6 tehsils of Jodhpur district which was a drought affected desert district of Western Rajasthan in 2003. A total of 914 under five children (0-5 years) could be examined for their childhood illnesses, malnutrition, dietary intake and clinical signs of nutritional deficiency. Childhood illnesses observed at the time of drought were respiratory (7.5 %), gastroentrological (7.5%), and 5.6% fever (viral, malaria and jaundice), higher in males than females. Children suffered from recent and long term malnutrition were 39% and 26% respectively as per National Centre for Health Statistics (NCHS) standards. The extent of malnutrition was significantly higher in females than in males (pmalnutrition (PEM) was observed in 44.4%. Overall mean calorie and protein intake deficit was observed to be very high (76.0 & 54.0 %). The comparison of present drought results with earlier studies in normal and drought conditions showed higher prevalence of PEM and deficiencies of calories & proteins in their diet. Respiratory, gastroentrological and fever were main childhood illnesses observed and were higher in males at the time of drought. PEM, vitamin A & B- complex deficiencies, anemia along with deficit in calories and proteins in their diet was observed higher in present study as compared to non desert areas, which may be due to the harsh environmental conditions in desert areas and paucity in the consumption of daily food intake. Due to inadequate consumption of daily food, the children were suffering from PEM resulting in several childhood illnesses. Effective measures making availability of adequate calories and proteins to all age groups especially to under five children through the ongoing nutrition programs needs to be ensured.

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

    Science.gov (United States)

    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

  9. Professional commitment to changing chronic illness care: results from disease management programmes.

    Science.gov (United States)

    Lemmens, Karin; Strating, Mathilde; Huijsman, Robbert; Nieboer, Anna

    2009-08-01

    The aim of this exploratory study was to investigate to what extent primary care professionals are able to change their systems for delivering care to chronic obstructive pulmonary disease (COPD) patients and what professional and organizational factors are associated with the degree of process implementation. Quasi-experimental design with 1 year follow-up after intervention. Three regional COPD management programmes in the Netherlands, in which general practices cooperated with regional hospitals. All participating primary care professionals (n = 52). COPD management programme. Professional commitment, organizational context and degree of process implementation. Professionals significantly changed their systems for delivering care to COPD patients, namely self-management support, decision support, delivery system design and clinical information systems. Associations were found between organizational factors, professional commitment and changes in processes of care. Group culture and professional commitment appeared to be, to a moderate degree, predictors of process implementation. COPD management was effective; all processes improved significantly. Moreover, theoretically expected associations between organizational context and professional factors with the implementation of COPD management were indeed confirmed to some extent. Group culture and professional commitment are important facilitators.

  10. Treating Chronically Ill Diabetic Patients with Limited Life Expectancy: Implications for Performance Measurement

    Science.gov (United States)

    Woodard, LeChauncy D.; Landrum, Cassie R.; Urech, Tracy H.; Profit, Jochen; Virani, Salim S.; Petersen, Laura A.

    2012-01-01

    Background/Objectives To validly assess quality-of-care differences among providers, performance measurement programs must reliably identify and exclude patients for whom the quality indicator may not be desirable, including those with limited life expectancy. We developed an algorithm to identify patients with limited life expectancy and examined the impact of limited life expectancy on glycemic control and treatment intensification among diabetic patients. Design We identified diabetic patients with coexisting congestive heart failure, chronic obstructive pulmonary disease, dementia, end-stage liver disease, and/or primary/metastatic cancers with limited life expectancy. To validate our algorithm, we assessed 5-year mortality among patients identified as having limited life expectancy. We compared rates of meeting performance measures for glycemic control between patients with and without limited life expectancy. Among uncontrolled patients, we examined the impact of limited life expectancy on treatment intensification within 90 days. Setting 110 Veterans Administration facilities; October 2006 – September 2007 Participants 888,628 diabetic patients Measurements Hemoglobin A1c (HbA1c) Quality measurement and performance-based reimbursement systems should acknowledge the different needs of this population. PMID:22260627

  11. Medical adherence and childhood chronic illness: family daily management skills and emotional climate as emerging contributors.

    Science.gov (United States)

    Fiese, Barbara H; Everhart, Robin S

    2006-10-01

    To describe recent research that examines family factors that promote or derail adherence to medical regimens for children with chronic health conditions, primarily asthma, diabetes, and cystic fibrosis. From the past 2 years, eight correlational studies were identified which specifically examined the links between family management strategies, family climate and medical adherence. Findings from the studies suggest that team-based management strategies and cohesive family climate promote adherence to medical treatments over time. Family interactions that are characterized by conflict and disengagement tend to disrupt adherence and inevitably cause a decline in child health. Moreover, these findings seem to be moderated by child age in that poorer adherence often occurs when a child reaches adolescence and is searching for greater autonomy. Future research should consider the challenges in measuring medical adherence in the family context as well as incorporating more naturalistic studies of family interactions. Randomized controlled trials using family-based interventions may consider focusing on medical adherence as an important mediator between family process and child health outcomes.

  12. [Transferable skills of healthcare professionals in providing homecare in chronically ill patients].

    Science.gov (United States)

    Escarrabill, Joan; Clèries, Xavier; Sarrado, Joan Josep

    2015-02-01

    To determine the relevance level of non-technical skills of those professionals dedicated to the healthcare of patients with chronic diseases, from an analysis of home care professionals. Quantitative and qualitative research conducted in 2 phases: 1.st from November 2010 to March 2011 and 2.nd from December 2012 to August 2013. Health Region of Barcelona city. During the 1.st phase, 30 professionals from homecare teams (3 from Primary Care and 3 from Hospitals). In 2.nd phase, 218 professionals from 50 Primary Healthcare Centres and 7 home care programmes. Purposive sampling in was used in the1st phase, and randomized sampling in the 2.nd phase. Likert scales and focus group were used. A total of 19 skill categories were identified in the 1.st phase. In the 2.nd phase 3 metacategories were established: comprehensive patient-centered care, interprofessional organization, and inter-health care fields and interpersonal skills. It is necessary to improve and secure the professionals relationships between levels of healthcare, continuity of healthcare, biopsychosocial model and holistic attention to patients and relatives, looking at emotions, expectations, feelings, beliefs and values. It is essential to design and implement continuing training in transferable skills in every healthcare centre, through active methodologies. Copyright © 2013 Elsevier España, S.L.U. All rights reserved.

  13. HIV as chronic illness: caregiving and social networks in a vulnerable population.

    Science.gov (United States)

    Mignone, Javier; Migliardi, Paula; Harvey, Carol; Davis, Jennifer; Madariaga-Vignudo, Lucia; Pindera, Carla

    2015-01-01

    We sought to understand the support networks of people living with HIV (PLWH) in the Canadian cities of Winnipeg and Regina, particularly of their network of caregivers and with a focus on people from disadvantaged and/or stigmatized communities. Using a variation of the Photovoice method, 31 study participants took photographs of their everyday realities and were then interviewed. Among the findings was the heavy reliance on institutional caregivers and on nonhuman sources of support. There was evidence of peer-to-peer networks of care, but the strongest connections were with their formal caregivers. HIV as a chronic condition among disadvantaged and/or stigmatized groups requires paying special attention to informal and formal care dynamics and to where social or family networks cannot meet the basic needs. Honing in on and enhancing these features through programs and services can only improve the situation of stigmatized yet hopeful and resilient PLWH. Copyright © 2015 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.

  14. Microtubule Abnormalities Underlying Gulf War Illness in Neurons from Human Induced Pluripotent Cells

    Science.gov (United States)

    2017-11-01

    and culture of rat embryonic neural cells: a quick protocol. J Vis Exp. 2012;63:e3965. 43. Pruszak J, Just L, Isacson O, Nikkhah G. Isolation and...COMPLETION SECTION Ill - CERTIFICATION 7, CERTIFICATION OF REPORT BY CONTRACTOR/SUBCONTRACTOR !Not required if: IX as appropriate

  15. Social provision and loneliness among older people suffering from chronic physical illness. A mixed-methods approach.

    Science.gov (United States)

    Kvaal, Kari; Halding, Anne-Grethe; Kvigne, Kari

    2014-03-01

    To describe and compare the perceived social provision for a group reporting never feeling lonely with that of a group reporting feeling lonely and to explore the meaning of loneliness. Participants (N = 101) were recruited from geriatric wards. Inclusion criteria were as follows: aged 65 years or more, the absence of dementia, one or more chronic physical disorders and plans to be discharged from the hospital to their home. The mean age was 81.3 years (range: 65-96 years), 68% were women, and 66% lived alone. Assessments of social provisions and loneliness were collected by a subjective report using the Social Provision Scale (SPS), and the Montgomery-Aasberg Depression Rating Scale (MADRS) was used to assess depression. The participants were also asked whether they felt lonely and were then asked to describe the meaning of loneliness if they had indicated feeling lonely. Narratives were then condensed by the participants into short sentences. Seventy-five per cent of the participants reported feeling lonely, of these 54% were living alone, and 18% identified with depression. Three subscales of SPS scores were significantly lower in the lonely group: attachment (p loneliness was dominated by emptiness and negative emotions. The following themes were identified: Emotions were dominated by sadness, anxiety and restlessness, anger and guilt. Relationships were dominated by being left alone, being confined and feeling useless. Existential dimensions were characterised by emptiness, endless boredom, isolation and the potential for change. The study shows that loneliness is prevalent among older people suffering from chronic physical illness and confirms the complexity of the concept. A mixed-methods design contributed to nuanced and detailed information about the meaning of loneliness. © 2013 Nordic College of Caring Science. Published by Blackwell Publishing Ltd.

  16. The relationship between spirituality, psychosocial adjustment to illness, and health-related quality of life in patients with advanced chronic kidney disease.

    Science.gov (United States)

    Davison, Sara N; Jhangri, Gian S

    2013-02-01

    Spirituality may promote psychosocial adjustment to illness, and this may be a mechanism by which patients with greater existential well-being (EWB) experience better health-related quality of life (HRQL) in the context of life-limiting illness. This study explored the relationship between psychosocial adjustment to illness, EWB, and HRQL in patients with advanced chronic kidney disease and sought to determine whether adjustment to illness mediates the relationship between EWB and HRQL. This was a cohort study of 253 prevalent Stage 4 or 5 chronic kidney disease and dialysis patients. Participants completed the Spiritual Well-Being Scale, the Psychological Adjustment to Illness Scale (PAIS)-Self-Report, and the Kidney Dialysis Quality of Life Short Form. Psychosocial adjustment to illness was highly correlated with HRQL, accounting for 29% and 27% of the variance in physical and mental HRQL scores, respectively. Although PAIS domains were associated with EWB, EWB remained a significant predictor of HRQL after all PAIS domains were considered. Adjustment in the domains of psychological distress and extended family relationships did appear to mediate some of the relationship between EWB and HRQL. Adjustment in the domains of psychological distress and extended family relationships appears to mediate some of the beneficial effect of EWB on HRQL. Spirituality, however, provides unique variance in patients' HRQL, independent of their psychosocial adjustment. This study testifies to the importance of targeting both psychosocial adjustment to illness and spirituality as ways to preserve or enhance HRQL of predialysis and dialysis patients. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  17. Self-help/mutual aid as active citizenship associations: a case-study of the chronically ill in Italy.

    Science.gov (United States)

    Giarelli, Guido; Spina, Elena

    2014-12-01

    Contrary to the most widespread conception that considers self-help/mutual aid as a component of the 'third sector', an approach is proposed which assumes, on the basis of the specific nature of the social bond and of the social action that characterizes it, it can be more properly considered as part of the 'new civil society' as it has been configured during the time in Western societies. This implies its location in the public non-state and non-systemic space that it has been created in the specific form of associations of citizenship. An interuniversity research project is then presented which, using this approach, studied the case of self-help/mutual aid associations for the chronically ill in Italy, offering some of the findings regarding the origin, structural characteristics, geographical distribution and activities of these associations in order to at least partially verify the heuristic value of this approach and its implications for the processes of reform of the health systems. Copyright © 2014 Elsevier Ltd. All rights reserved.