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Sample records for chronic terminal illnesses

  1. When should managed care firms terminate private benefits for chronically mentally ill patients?

    PubMed

    Gerson, S N

    1994-01-01

    Corporate America's healthcare cost crisis and the country's budget deficit are forcing limits on the resources used to finance healthcare, including mental healthcare. At the same time, the 1990 Americans with Disabilities Act bars discrimination against patients with chronic illnesses, including chronic mental illness. Therefore, corporate benefits managers need guidance on how to ethically and rationally allocate scarce clinical resources to those high-morbidity insureds who utilize disproportionate amounts of these resources. In particular, how should we define the public/private interface: When do patients who repeatedly fail to respond to treatment fall out of the private sector's responsibility? The author, medical director for a leading behavioral healthcare utilization management company, offers the following guidelines recommending reasonable and practical limitations on trials of treatment for seven common categories of difficult psychiatric patients. PMID:10141406

  2. Nicole: Suicide and Terminal Illness.

    ERIC Educational Resources Information Center

    Saunders, Judith M.; And Others

    1993-01-01

    Presents case summary of 58-year-old woman, terminally ill with cancer, who is contemplating suicide. Includes comments from Kjell Rudestam from the Fielding Institute and from Margaret Battin from the University of Utah who debate appropriate responses to people who contemplate suicide because of terminal illness. (NB)

  3. National Respite Guidelines: Respite Services for Families of Children with Disabilities, Chronic and Terminal Illnesses, and Children at Risk of Abuse or Neglect.

    ERIC Educational Resources Information Center

    Edgar, Maggie; Uhl, Monica

    These guidelines are intended to assist states and local communities in developing quality respite services that meet the diverse needs of families and children with disabilities, with chronic and terminal illnesses, or at risk of abuse or neglect. The guidelines support the philosophy that all families can benefit from temporary intervals of rest…

  4. Sexuality and chronic illness.

    PubMed

    Steinke, Elaine E

    2013-11-01

    Sexual function is often affected in individuals living with chronic illness and their partners, and multiple comorbidities increase the likelihood of sexual dysfunction. This review focuses on the areas of cardiovascular disease, respiratory conditions, and cancer, all areas for which there are practical, evidence-based strategies to guide sexual counseling. Although nurses have been reluctant to address the topic of sexuality in practice, a growing number of studies suggest that patients want nurses to address their concerns and provide resources to them. Thus, nurses must be proactive in initiating conversations on sexual issues to fill this gap in practice. PMID:24066783

  5. Responding to Students' Chronic Illnesses

    ERIC Educational Resources Information Center

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

    2010-01-01

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

  6. Children Coping with Chronic Illness.

    ERIC Educational Resources Information Center

    Perez, Lissette M.

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

  7. Program for the Chronically Ill.

    ERIC Educational Resources Information Center

    Schoenherr, Arline; Schnarr, Barbara

    The program for chronically ill students in the Detroit public schools is described. Forms are presented listing needed information and implications for teachers of the following conditions: diabetes, sickle cell anemia, chronic renal failure, congenital heart disease, hemophilia, rheumatoid arthritis, asthma, leukemia, and cystic fibrosis. The…

  8. 'Chronic' identities in mental illness.

    PubMed

    von Peter, Sebastian

    2013-04-01

    The term 'chronicity' is still widely used in psychiatric discourse and practice. A category employed in political, administrative and therapeutic contexts, it guides practitioners' beliefs and actions. This paper attempts a review of the attitudes and procedures that result as a consequence of identifying 'chronically' disturbed identities in clinical practice. An essentially social, relational and materialist understanding of mental illness is used to highlight the kind of thinking underlying the notion of 'chronic' identities in day-to-day psychiatric routines. Problematising the notions of singularity and expressiveness, as well as mind/body- and self/other-distinctions, it claims the category itself is responsible for creating a 'chronic' kind of being. A spatial metaphor is presented in the conclusion, illustrating a mental strategy by which we can re-shape our thinking about 'chronic' identities. It attempts to describe how the shift from an epistemological to a praxeographic approach could build a more complete understanding of mental illness. PMID:23528064

  9. Chronic illness and smoking cessation

    PubMed Central

    Schlundt, David; Larson, Celia; Wang, Hong; Brown, Anne; Hargreaves, Margaret

    2009-01-01

    Introduction Smoking is among the leading causes of premature mortality and preventable death in the United States. Although smoking contributes to the probability of developing chronic illness, little is known about the relationship between quitting smoking and the presence of chronic illness. The present study investigated the association between diagnoses of one or more chronic diseases (diabetes, hypertension, or high cholesterol) and smoking status (former or current smoker). Methods The data analyzed were a subset of questions from a 155-item telephone-administered community survey that assessed smoking status, demographic characteristics, and presence of chronic disease. The study sample consisted of 3,802 randomly selected participants. Results Participants with diabetes were more likely to report being former smokers, after adjusting for sociodemographic characteristics, whereas having hypertension or high cholesterol was not associated significantly with smoking status. The likelihood of being a former smoker did not increase as number of diagnosed chronic diseases increased. Participants who were women, older (aged 65+), or single were significantly less likely to be former smokers. Participants with at least a college degree, those with incomes of US$50,000+, and those who were underweight or obese were more likely to be former smokers. Discussion These findings were inconsistent with research that has suggested that having a chronic illness or experiencing a serious medical event increases the odds of smoking cessation. Supporting prior research, we found that being male, having a higher income, and being obese were associated with greater likelihood of being a former smoker. PMID:19516050

  10. Multiculturalism, chronic illness, and disability.

    PubMed

    Groce, N E; Zola, I K

    1993-05-01

    To gain at least an initial understanding of the underlying beliefs and attitudes in a cross-cultural situation, we believe that the three key points discussed in this paper should prove a significant point of departure: 1. Traditional beliefs about the cause of chronic illness or disability will play a significant role in determining family and community attitudes toward individuals with a disability and will influence when, how, and why medical input is sought. 2. The expectation of survival on the part of parents and community will have an effect on the amount of time, energy, and cooperation shown by family and community for the individual who has an impairment. 3. The expectations by family and community for the social role(s) and individual with a chronic illness or disability will hold will affect a broad range of issues, including education, social integration, and independence. Furthermore, although chronic illness and disability are often considered as issues distinct from the full range of problems encountered in society for immigrant and minority groups, in fact, these issues could not be more closely tied. The frequently discussed concerns within the ethnic and minority community about the role of the family, integration and acculturation, social articulation with the greater American society, stress, cross-cultural misunderstanding, and outright prejudice can all compound the problems encountered for the chronically ill or disabled individual in a multicultural society. PMID:8479830

  11. Personal perception of chronic illness.

    PubMed

    Dean, P R

    1999-04-01

    Nurses caring for patients in the home must see them as a complex collection of many parts that require a holistic approach. With the plethora of therapies blending the relationship between mind and body, patients are seeking to be treated as a whole person rather than a physical illness. A diagnosis of cancer or other serious illness affects the physical, psychologic, spiritual, and economic aspects of the person's life, and patients with these diagnoses know the illness and its treatment will decrease many of their normal activities and limit their effectiveness. Because of this disruption, chronic illness causes stress and anxiety in both patient and the family. Therefore nurses must be ready to assess, intervene, and monitor the ongoing progress of both patient and family. PMID:10418394

  12. Helping a Child Manage a Chronic Illness

    MedlinePlus

    ... https://medlineplus.gov/news/fullstory_160011.html Helping a Child Manage a Chronic Illness Feeling they have control over their ... News) -- Children and teens who feel confident handling a chronic illness on their own appear better able ...

  13. [Chronic illness and contraception].

    PubMed

    Saarikoski, S

    1987-01-01

    In recent years sterilization that can cause problems of the psyche and marital life has been recommended much less frequently with respect to chronic diseases. As regards heart and hypertensive diseases pregnancy is always contraindicated in case of 3rd and 4th disease categories and sterilization is recommended according to the New York Heart Association. As far as 1st and 2nd category patients are concerned if the load carrying capacity is normal pregnancy could be undertaken. Combination pills are not recommended for contraception because they can cause fluid retention or increase the risk of thrombosis. If the patient has a higher-than-normal risk of developing thrombosis or infection, for instance, those who wear pacemakers only tablets containing progesterone or subdermal capsule implants can be used. In those with blood pressure problems the additional use of the IUD is also advised. Among diseases of neurological and psychic origin the effect of hormonal contraceptives is weakened by antiepileptics, but even in such cases older combination pills of larger doses of active ingredients can be employed. Migraine is exacerbated in 1/3 of patients; here IUDs can be used. Even the contraceptive tablets themselves can induce depression. In psychosis methods requiring regular attention can be easily forgotten, therefore the IUD is the most suitable device. In diabetes progesterone and other progestogens reduce insulin response, harm carbohydrate metabolism; therefore in young people the IUD is preferred an in older women with children even sterilization can be employed. Hormonal tablets must not be used in hyperlipidemia and liver diseases. Caution must be exercised in hyperthyroidism and in endocrine disorders (e.g., Cushing's syndrome); if it is accompanied by blood pressure disorders appropriate treatment is required. In kidney diseases pregnancy is contraindicated if it is accompanied by blood pressure increase or a higher level of creatine. On the other hand

  14. Meditation's impact on chronic illness.

    PubMed

    Bonadonna, Ramita

    2003-01-01

    Meditation is becoming widely popular as an adjunct to conventional medical therapies. This article reviews the literature regarding the experience of chronic illness, theories about meditation, and clinical effects of this self-care practice. Eastern theories of meditation include Buddhist psychology. The word Buddha means the awakened one, and Buddhist meditators have been called the first scientists, alluding to more than 2500 years of precise, detailed observation of inner experience. The knowledge that comprises Buddhist psychology was derived inductively from the historical figure's (Prince Siddhartha Gautama) diligent self-inquiry. Western theories of meditation include Jungian, Benson's relaxation response, and transpersonal psychology. Clinical effects of meditation impact a broad spectrum of physical and psychological symptoms and syndromes, including reduced anxiety, pain, and depression, enhanced mood and self-esteem, and decreased stress. Meditation has been studied in populations with fibromyalgia, cancer, hypertension, and psoriasis. While earlier studies were small and lacked experimental controls, the quality and quantity of valid research is growing. Meditation practice can positively influence the experience of chronic illness and can serve as a primary, secondary, and/or tertiary prevention strategy. Health professionals demonstrate commitment to holistic practice by asking patients about use of meditation, and can encourage this self-care activity. Simple techniques for mindfulness can be taught in the clinical setting. Living mindfully with chronic illness is a fruitful area for research, and it can be predicted that evidence will grow to support the role of consciousness in the human experience of disease. PMID:14650573

  15. Coping with Loneliness among the Terminally Ill

    ERIC Educational Resources Information Center

    Rokach, Ami

    2007-01-01

    Loneliness is a universal phenomenon, and its pain is intensified by a diagnosis of a terminal illness. The present study is an investigation of the strategies used by patients with Multiple sclerosis (MS), by individuals diagnosed with cancer, and by the general population to cope with loneliness. Three hundred and twenty nine MS patients, 315…

  16. Pain Control Research in the Terminally Ill.

    ERIC Educational Resources Information Center

    Levy, Michael H.

    1988-01-01

    Two main goals in the care of the terminally ill are to optimize the quality of their remaining life and to alleviate the distress of their survivors. Pain control research has contributed significantly to meeting those goals, but continued progress is needed in both basic studies and expanded applications of new techniques. (Author/NB)

  17. 42 CFR 418.22 - Certification of terminal illness.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 42 Public Health 3 2014-10-01 2014-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single...

  18. 42 CFR 418.22 - Certification of terminal illness.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 42 Public Health 3 2011-10-01 2011-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single...

  19. 42 CFR 418.22 - Certification of terminal illness.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 42 Public Health 3 2012-10-01 2012-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single...

  20. 42 CFR 418.22 - Certification of terminal illness.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 42 Public Health 3 2013-10-01 2013-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single...

  1. Chronic Illness and the Academic Career

    ERIC Educational Resources Information Center

    Goodwin, Stephanie A.; Morgan, Susanne

    2012-01-01

    In this article, the authors discuss the hidden epidemic in higher education. They describe the stigma of chronic illness and argue that the invisibility of chronic illness may elicit particularly problematic responses from others, especially when faculty work in a context where people are expected to be highly productive and have unlimited…

  2. Death Education and Attitudes toward Euthanasia and Terminal Illness.

    ERIC Educational Resources Information Center

    Nagi, Mostafa H.; Lazerine, Neil G.

    1982-01-01

    Analyzed attitudes of 614 Protestant and Catholic Cleveland clergy toward terminal illness and euthanasia. Clergy responses revealed that, although eager to prolong life, terminally ill patients feared prolonged illness more than death. The controversial nature of euthanasia became more apparent with clergy who had more training in death…

  3. Consumer Informatics in Chronic Illness

    PubMed Central

    Tetzlaff, Linda

    1997-01-01

    Abstract Objective: To explore the informatic requirements in the home care of chronically ill patients. Design: A number of strategies were deployed to help evoke a picture of home care informatics needs: A detailed questionnaire evaluating informational needs and assessing programmable technologies was distributed to a clinic population of parents of children with cancer. Open ended questionnaires were distributed to medical staff and parents soliciting a list of questions asked of medical staff. Parent procedure training was observed to evaluate the training dialog, and parents were observed interacting with a prototype information and education computer offering. Results: Parents' concerns ranged from the details of managing day to day, to conceptual information about disease and treatment, to management of psychosocial problems. They sought information to solve problems and to provide emotional support, which may create conflicts of interest when the material is threatening. Whether they preferred to be informed by a doctor, nurse, or another parent depended on the nature of the information. Live interaction was preferred to video, which was preferred to text for all topics. Respondents used existing technologies in a straightforward way but were enthusiastic about the proposed use of computer technology to support home care. Multimedia solutions appear to complement user needs and preferences. Conclusion: Consumers appear positively disposed toward on-line solutions. On-line systems can offer breadth, depth and timeliness currently unattainable. Patients should be involved in the formation and development process in much the same way that users are involved in usercentered computer interface design. A generic framework for patient content is presented that could be applied across multiple disorders. PMID:9223035

  4. Talking with a child about a parent's terminal illness

    MedlinePlus

    ... htm Talking with a child about a parent's terminal illness To use the sharing features on this ... soon after you find out your cancer is terminal. Being included in this difficult transition can help ...

  5. Resilience in the Chronic Illness Experience

    ERIC Educational Resources Information Center

    Kralik, Debbie; van Loon, Antonia; Visentin, Kate

    2006-01-01

    This article advances the consideration of resilience as an important concept in the transitional process of learning to adapt to life with chronic illness, by utilising interactional processes inherent in participatory action research (PAR) that may strengthen a person's capacity to live well with long-term illness. Sharing experiences and…

  6. Ultimate journey of the terminally ill

    PubMed Central

    Daneault, Serge; Lussier, Véronique; Mongeau, Suzanne; Yelle, Louise; Côté, Andréanne; Sicotte, Claude; Paillé, Pierre; Dion, Dominique; Coulombe, Manon

    2016-01-01

    Objective To better understand the role of hope among terminally ill cancer patients. Design Qualitative analysis. Setting A tertiary specialized cancer centre in Canada. Participants Cancer patients in palliative care with an estimated remaining life expectancy of 12 months or less (N = 12) and their loved ones (N = 12) and treating physicians (N = 12). Methods Each patient underwent up to 3 interviews and identified a loved one who participated in 1 interview. Treating physicians were also interviewed. All interviews were fully transcribed and analyzed by at least 2 investigators. Interviews were collected until saturation occurred. Main findings Seven attributes describe the experiences of palliative cancer patients and their caregivers: hope as an irrational phenomenon that is a deeply rooted, affect-based response to adversity; initial hope for miraculous healing; hope as a phenomenon that changes over time, evolving in different ways depending on circumstances; hope for prolonged life when there is no further hope for cure; hope for a good quality of life when the possibility of prolonging life becomes limited; a lack of hope for some when treatments are no longer effective in curbing illness progression; and for others hope as enjoying the present moment and preparing for the end of life. Conclusion Approaches aimed at sustaining hope need to reflect that patients’ reactions might fluctuate between despair and a form of acceptance that leads to a certain serenity. Clinicians need to maintain some degree of hope while remaining as realistic as possible. The findings also raise questions about how hope influences patients’ perceptions and acceptance of their treatments. PMID:27521394

  7. Chronic illness: the process of integration

    PubMed Central

    Whittemore, Robin; Dixon, Jane

    2013-01-01

    Aim The aim of this study was to explore how adults with a chronic illness integrate the illness experience into their life context. Background Adults with chronic illnesses are challenged to learn self-management strategies to prevent complications and achieve an acceptable quality of life. Integration represents the process undertaken by an individual to achieve a sense of balance in self-managing a chronic illness and living a personally meaningful life. Design A mixed-method descriptive design was employed to recruit English-speaking adults with a chronic illness. A semi-structured interview was completed, transcribed verbatim and content analysed. Descriptive data were collected on demographics, co-morbidity and depressive symptoms. The research was undertaken in Connecticut, USA. Results The sample (n = 26) was diverse with respect to age (25–80 years), education (8–24 years), duration of illness (1–39 years), gender (63% female) and ethnicity (63% white). Participants reported a mean of four chronic illnesses and 31% of the sample had increased depressive symptoms. The process of integration was complex and multifactorial. Themes of integration included: shifting sands, staying afloat, weathering the storms, rescuing oneself and navigating life. Numerous factors including treatment side effects, a progressive or uncertain illness trajectory, co-morbidity, bad days, financial hardships and interpersonal/environmental challenges contributed to a disruption or difficulty in the integration process. Conclusion All participants made considerable effort to integrate the illness into their life context and participate in a personally meaningful life. However, it was easy to be consumed with ‘living an illness’ as the daily tasks, the changing symptoms and the fluctuating emotions could be overwhelming. There was a complex co-existence between ‘living a life’ and ‘living an illness’. Relevance to clinical practice There were numerous challenges to

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

    ERIC Educational Resources Information Center

    Royster, Lynn; Marshall, Olena

    2008-01-01

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

  9. Chronic physical illness: a psychophysiological approach for chronic physical illness.

    PubMed

    Purdy, Jana

    2013-03-01

    Growing evidence demonstrates that psychological risk variables can contribute to physical disease. In an effort to thoroughly investigate potential etiological origins and optimal interventions, this broad review is divided into five sections: the stress response, chronic diseases, mind-body theoretical models, psychophysiological interventions, and integrated health care solutions. The stress response and its correlation to chronic disorders such as cardiovascular, gastrointestinal, autoimmune, metabolic syndrome, and chronic pain are comprehensively explored. Current mind-body theoretical models, including peripheral nerve pathway, neurophysiological, and integrative theories, are reviewed to elucidate the biological mechanisms behind psychophysiological interventions. Specific interventions included are psychotherapy, mindfulness meditation, yoga, and psychopharmacology. Finally, the author advocates for an integrated care approach as a means by which to blur the sharp distinction between physical and psychological health. Integrated care approaches can utilize psychiatric nurse practitioners for behavioral assessment, intervention, research, advocacy, consultation, and education to optimize health outcomes. PMID:23483831

  10. Chronic Physical Illness: A Psychophysiological Approach for Chronic Physical Illness

    PubMed Central

    Purdy, Jana

    2013-01-01

    Growing evidence demonstrates that psychological risk variables can contribute to physical disease. In an effort to thoroughly investigate potential etiological origins and optimal interventions, this broad review is divided into five sections: the stress response, chronic diseases, mind-body theoretical models, psychophysiological interventions, and integrated health care solutions. The stress response and its correlation to chronic disorders such as cardiovascular, gastrointestinal, autoimmune, metabolic syndrome, and chronic pain are comprehensively explored. Current mind-body theoretical models, including peripheral nerve pathway, neurophysiological, and integrative theories, are reviewed to elucidate the biological mechanisms behind psychophysiological interventions. Specific interventions included are psychotherapy, mindfulness meditation, yoga, and psychopharmacology. Finally, the author advocates for an integrated care approach as a means by which to blur the sharp distinction between physical and psychological health. Integrated care approaches can utilize psychiatric nurse practitioners for behavioral assessment, intervention, research, advocacy, consultation, and education to optimize health outcomes. PMID:23483831

  11. Adaptive Leadership Framework for Chronic Illness

    PubMed Central

    Anderson, Ruth A.; Bailey, Donald E.; Wu, Bei; Corazzini, Kirsten; McConnell, Eleanor S.; Thygeson, N. Marcus; Docherty, Sharron L.

    2015-01-01

    We propose the Adaptive Leadership Framework for Chronic Illness as a novel framework for conceptualizing, studying, and providing care. This framework is an application of the Adaptive Leadership Framework developed by Heifetz and colleagues for business. Our framework views health care as a complex adaptive system and addresses the intersection at which people with chronic illness interface with the care system. We shift focus from symptoms to symptoms and the challenges they pose for patients/families. We describe how providers and patients/families might collaborate to create shared meaning of symptoms and challenges to coproduce appropriate approaches to care. PMID:25647829

  12. TERMINAL ILLNESS IN AN INDIAN SETTING: PROBLEMS OF COMMUNICATION

    PubMed Central

    Khanna, R.; Singh, R.P.N.

    1988-01-01

    SUMMARY A study of 50 terminally ill cancer patients revealed that 52% were uninformed regarding their diagnosis and prognosis. In almost all cases the relatives had been adequately informed. No less than 82% of the terminally ill patients showed an awareness of the fatal prognosis. Most of the patients found the communication with the doctor and the relatives as unsatisfactory. Comparing this group with another group of non-terminal medically ill patients showed striking differences between the two groups. The findings are compared with those reported from the West and the implications of the above observations discussed. PMID:21927320

  13. The Family physician and the Terminally Ill Elderly

    PubMed Central

    Eaton, Bill

    1989-01-01

    Palliative care rests on the three pillars of symptom control, communication, and family support. As our patient population ages, we family doctors will be increasingly involved in the care of the terminally ill elderly at home. Terminal illnesses are much more common in the elderly, and often death can be predicted. Family doctors have a most important role in co-ordinating the home-support services, in providing comfort care, and in supporting the family members who are caring for the terminally ill elderly at home. PMID:21248995

  14. Health within illness: experiences of chronically ill/disabled people.

    PubMed

    Lindsey, E

    1996-09-01

    The concept of health within illness is beginning to gain recognition in nursing. However, there has been little research to explore and describe this phenomenon. The results of a recent study investigating the meaning of the experience of feeling healthy for people living with a chronic illness and/or disability are presented. An interpretive phenomenological study was undertaken with eight participants living with a variety of different chronic conditions. The results provide a rich mosaic of themes describing the participants' health experiences. These themes include: (a) honouring the self; (b) seeking and connecting with others; (c) creating opportunities; (d) celebrating life; (e) transcending the self; and (f) acquiring a state of grace. The significance of these results is that they provide for a reconceptualization of health and illness. Such a reconceptualization calls for a transformation in nursing care, from a problem focus and a deficit perspective, to one which focuses on the client's capacity and the promotion of health and healing. PMID:8876405

  15. Chronic Illness and School to Work Transition.

    ERIC Educational Resources Information Center

    Yazak, Daniel L.

    Chronic illness life management skills and school-to-work transition are separate but interrelated issues which are necessary for students, families, and caregivers to understand. The interconnection of these concerns is examined . Career choice is a process that involves the student, family, and appropriate professionals. Definitions of work…

  16. Managing Chronic Illness in the Classroom.

    ERIC Educational Resources Information Center

    Wishnietsky, Dorothy Botsch; Wishnietsky, Dan H.

    An important but often overlooked member of a student's health care team is the teacher. This text covers ways to help teachers and administrators understand the special needs of students suffering from a chronic illness, how to recognize health events that may interfere with learning, and suggestions for appropriate interventions. The book opens…

  17. Peer Relationships Among Chronically Ill Children.

    ERIC Educational Resources Information Center

    Johnson, Suzanne Bennett

    As new treatments allow chronically ill children to live longer, the relationship between the child's psychological state and his physical condition becomes paramount. Diabetics (N=42) between the ages of 10 and 21 answered questions about their disease. While most respondents did not feel that diabetes had affected relationships with peers,…

  18. Psychological and Spiritual Factors in Chronic Illness.

    ERIC Educational Resources Information Center

    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)

  19. Chronic Illness in Adolescents: A Sociological Perspective.

    ERIC Educational Resources Information Center

    Silber, Tomas J.

    1983-01-01

    Relates chronic illness in adolescents to a sociological model of deviance. Four situations are discussed in which the issues of prognosis, responsibility, and stigma elicit societal response. The usefulness of a sociological model consists in making vague societal perceptions and rules explicit. (JAC)

  20. Chronically Ill Children in America: Background and Recommendations.

    ERIC Educational Resources Information Center

    Hobbs, Nicholas; And Others

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

  1. On the Agenda: Oregon's Chronically Ill Children and Their Families.

    ERIC Educational Resources Information Center

    Oregon State Dept. of Education, Salem.

    This report describes the current status and needs of chronically ill children and their families in Oregon. An introductory chapter outlines the history of educational services for children with severe health needs, defines the term "chronically ill," reports on prevalence, and outlines trends. a survey of 49 parents of chronically ill children…

  2. The chronic illness problem inventory: problem-oriented psychosocial assessment of patients with chronic illness.

    PubMed

    Kames, L D; Naliboff, B D; Heinrich, R L; Schag, C C

    1984-01-01

    Two studies are presented which describe the development of a problem-oriented psychosocial screening instrument for use in health care settings. Reliability and validity data are presented on the Chronic Illness Problem Inventory (CIPI) which demonstrate its ability to document accurately patient's specific problems in areas of physical limitations, psychosocial functioning, health care behaviors and marital adjustment. A study is also presented which compares the problems of patients with three distinct chronic illnesses: pain, obesity, and respiratory ailments. Results indicate a significantly greater severity of problems for pain patients and especially patients with multiple pain complaints. Problem areas common to all three illness groups are discussed in the context of providing better comprehensive treatment for chronically ill patients. PMID:6735596

  3. FGF23 in Acute and Chronic Illness

    PubMed Central

    Schnedl, Christian; Fahrleitner-Pammer, Astrid; Pietschmann, Peter; Amrein, Karin

    2015-01-01

    FGF23 is a bone-derived phosphaturic hormone that may become a useful biomarker for the identification of high-risk patients in chronic but also acute disease. It rises early in chronic kidney disease and is strongly and independently associated with excess morbidity and mortality. Emerging data suggest that FGF23 is also elevated in different scenarios of acute illness. In this review, we give an overview on the role of this interesting disease marker and potential and proven interventional strategies and discuss a blueprint for future research. PMID:26491212

  4. Self-Concepts of Chronically Ill Children.

    ERIC Educational Resources Information Center

    Burns, William J.; Zweig, April R.

    1980-01-01

    The performance on the Draw-A-Face Test of fifty-four 3 1/2- to 12-year-old girls and boys, chronically ill with blood disease, were compared with the performance of 115 healthy girls and boys. While sex and age differences were obtained for both groups, few differences were found between the groups. Results were interpreted in terms of coping…

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

    PubMed

    del Pilar Camargo Plazas, Maria

    2009-01-01

    Until recently, infectious diseases were the main cause of death worldwide. New medical discoveries and the evolution of public health improved life expectancy and the ability to survive acute threats, thus changing the course of diseases from acute to chronic. Today, chronic illness is the most important health concern worldwide. Chronic illness increases existing poverty and pushes other people into it. As nurses, members of the healthcare system and members of this world, we cannot forget that our response toward globalization and chronic disease has to be centered in leadership through reorienting local and national healthcare systems. All actions must be grounded in the ethical treatment of the ill; we cannot close our eyes in hospitals or communities to what is happening now worldwide because our responsibility is to promote health, prevent disease, and care for human beings. PMID:19461220

  6. Life skills programmes for chronic mental illnesses

    PubMed Central

    Tungpunkom, Patraporn; Maayan, Nicola; Soares-Weiser, Karla

    2014-01-01

    Background Most people with schizophrenia have a cyclical pattern of illness characterised by remission and relapses. The illness can reduce the ability of self-care and functioning and can lead to the illness becoming disabling. Life skills programmes, emphasising the needs associated with independent functioning, are often a part of the rehabilitation process. These programmes have been developed to enhance independent living and quality of life for people with schizophrenia. Objectives To review the effects of life skills programmes compared with standard care or other comparable therapies for people with chronic mental health problems. Search methods We searched the Cochrane Schizophrenia Group Trials Register (June 2010). We supplemented this process with handsearching and scrutiny of references. We inspected references of all included studies for further trials. Selection criteria We included all relevant randomised or quasi-randomised controlled trials for life skills programmes versus other comparable therapies or standard care involving people with serious mental illnesses. Data collection and analysis We extracted data independently. For dichotomous data we calculated relative risks (RR) and their 95% confidence intervals (CI) on an intention-to-treat basis, based on a random-effects model. For continuous data, we calculated mean differences (MD), again based on a random-effects model. Main results We included seven randomised controlled trials with a total of 483 participants. These evaluated life skills programmes versus standard care, or support group. We found no significant difference in life skills performance between people given life skills training and standard care (1 RCT, n = 32, MD −1.10; 95% CI −7.82 to 5.62). Life skills training did not improve or worsen study retention (5 RCTs, n = 345, RR 1.16; 95% CI 0.40 to 3.36). We found no significant difference in PANSS positive, negative or total scores between life skills intervention and

  7. Ways of working: CCNs and chronic illness.

    PubMed

    Carter, B

    2000-01-01

    The study explored the role/skills used by CCNs caring for children with chronic illness. A participant inquiry paradigm was used and data were generated using semi-structured interviews supported by extensive field notes. All the CCNs described the special relationship with the children and their families which was characterised by deep understanding of current and future needs. The CCNs emphasised 'ways of working' which involved high degrees of trust, flexibility, support, reflexivity and empowerment. CCNs help families regain, maintain and develop control over their lives. PMID:11855402

  8. The chronically mentally ill: planning a future.

    PubMed

    Draper, R J

    1989-09-01

    The plight of the chronically mentally ill in contemporary society is explored. Appropriate treatment strategies identified require organizational changes at both local and provincial levels, and altered management philosophies. The criteria used in major studies to define the study population are identified and epidemiological data provided to illustrate the numbers and disposition of sufferers of "Prolonged Functional Disabilities caused by or aggravated by Severe Mental Disorder." Operational and research data from a regional psychiatric research service confirm that many patients formerly considered chronically institutionalized can be successfully discharged when goal-oriented multidisciplinary methods are introduced. External inhibiting factors are identified which society must address. Psychiatry must embrace and develop the new philosophies. Rational planning based upon patient need will require changes in the present vertical hierarchical structure of health care organization. Some elements of a strategic planning model are identified. PMID:2678188

  9. The Terminally Ill Patient's Right to Be in Denial.

    ERIC Educational Resources Information Center

    Smith, Douglas C.

    1993-01-01

    Presents argument in favor of being supportive of terminally-ill person's choice to deny death's inevitability. Presents illustrative case study on choice of denial and draws upon supportive work of some of foremost experts in the field of death and dying. Addresses implications for dying person's counselor and consequences for dying person's…

  10. The Creative Use of Psychotherapy with Terminally Ill with AIDS.

    ERIC Educational Resources Information Center

    Fraenkel, William A.

    One clinical psychologist worked with terminally ill, end-stage Acquired Immune Deficiency Syndrome (AIDS) patients in a hospice type setting for an 18-month time period. Interventions included individual psychotherapy, mental status assessments, staff group sessions, and supportive services for families and significant others. During that time,…

  11. Contract for Living--The Terminally Ill Student.

    ERIC Educational Resources Information Center

    Gerritt, Keith S.

    1986-01-01

    Describes how a Connecticut school learned to work with a ninth-grade student who was terminally ill. The school developed a plan of action through the help of a private counselor paid from special funds approved by the superintendent. (MD)

  12. Gerontology & Policies for Not Treating Terminally Ill Patients.

    ERIC Educational Resources Information Center

    Jarrett, William H.

    Proposals have been developed to clarify physician responsibility in withholding treatment to terminally ill patients. These proposals seek to provide a legal shield against malpractice proceedings and to reduce confusion over how to resolve high medical costs through standardizing procedures for withholding treatment. When first published,…

  13. Teachers' Knowledge and Support Systems Regarding Students with Terminal Illness

    ERIC Educational Resources Information Center

    Heller, Kathryn Wolff; Coleman, Mari Beth; Best, Sherwood J.; Emerson, Judith

    2013-01-01

    This study examined teachers' knowledge and support when working with students with terminal illness or having experienced a student death. One hundred and ninety teachers of students with physical or multiple disabilities responded to a 40 item questionnaire that was distributed nationally. Results indicated that teachers have greater knowledge…

  14. The Creative Use of Psychotherapy with Terminally Ill AIDS Patients.

    ERIC Educational Resources Information Center

    Fraenkel, William A.

    One clinical psychologist who worked with terminally ill, end-stage Acquired Immune Deficiency Syndrome (AIDS) patients in a hospice type setting experienced more than 150 deaths over an 18-month time period. Many of the patients denied that they had AIDS; some distinguished between having AIDS and testing positive for Human Immunodeficiency Virus…

  15. Communicating with Terminally Ill Cancer Patients and Their Families.

    ERIC Educational Resources Information Center

    Hjorleifsdottir, Elisabet; Carter, Diana E.

    2000-01-01

    Interviews with 12 fourth-year student nurses in Scotland indicated that they found communicating with terminally ill and dying patients and their families difficult. Although lectures on death and dying were helpful, support and guidance for dealing with these issues in clinical practice were needed. (SK)

  16. Self-management interventions for chronic illness.

    PubMed

    Newman, Stanton; Steed, Liz; Mulligan, Kathleen

    An increasing number of interventions have been developed for patients to better manage their chronic illnesses. They are characterised by substantial responsibility taken by patients, and are commonly referred to as self-management interventions. We examine the background, content, and efficacy of such interventions for type 2 diabetes, arthritis, and asthma. Although the content and intensity of the programmes were affected by the objectives of management of the illness, the interventions differed substantially even within the three illnesses. When comparing across conditions, it is important to recognise the different objectives of the interventions and the complexity of the issues that they are attempting to tackle. For both diabetes and asthma, the objectives are concerned with the underlying control of the condition with clear strategies to achieve the desired outcome. By contrast, strategies to deal with symptoms of pain and the consequences of disability in arthritis can be more complex. The interventions that were efficacious provide some guidance as to the components needed in future programmes to achieve the best results. But to ensure that these results endure over time remains an important issue for self-management interventions. PMID:15500899

  17. Trajectories of illness perceptions in persons with chronic illness: An explorative longitudinal study.

    PubMed

    Bonsaksen, Tore; Lerdal, Anners; Fagermoen, May Solveig

    2015-07-01

    Accurate illness perceptions are essential to the self-management of chronic illness. This study explored trajectories of illness perceptions in persons with morbid obesity (n = 53) and persons with chronic obstructive pulmonary disease (n = 52) following a patient education course. Participants completed the Brief Illness Perception Questionnaire five times over a 1-year period. Repeated measures analysis of variance was employed. Over time, obese participants perceived shorter illness duration, fewer consequences, less emotional stress, and more personal control. Chronic obstructive pulmonary disease participants had initial increases in personal control and understanding, but these changes were not maintained throughout the follow-up period. PMID:24140616

  18. [Palliative care needs in advanced chronic illness].

    PubMed

    Tripodoro, Vilma A; Rynkiewicz, María C; Llanos, Victoria; Padova, Susana; De Lellis, Silvina; De Simone, Gustavo

    2016-01-01

    About 75% of population will die from one or more chronic progressive diseases. From this projection WHO urged countries to devise strategies for strengthening palliative treatment as part of comprehensive care. In Catalonia, Spain, direct measurement of the prevalence of these patients with NECPAL CCOMS-ICO© tool was 1.5% of the population. This tool is an indicative, not dichotomous, quali-quantitative multifactorial evaluation to be completed by the treating physician. In Argentina there is no information on these patients. Our goal was to explore and characterize the proportion of chronically ill patients in palliative care needs, by NECPAL CCOMS-ICO© tool, in an accessible population of the City of Buenos Aires. General hospitals of the Health Region 2 (Piñero, álvarez and Santojanni) and its program areas were surveyed. In Health Region 1, we surveyed the Udaondo gastroenterology hospital. A total of 53 physicians (704 patients) were interviewed. It was identified that 29.5% of these patients were affected by advanced chronic diseases; 72.1% of them were NECPAL positive, younger (median 64) than in others studies, and more than 98% presented high levels of comorbidity. Palliative care demand (31.4%) and needs (52.7%) were recorded. Specific indicators of fragility, progression, severity and kind of chronic disease were described. The main finding was to identify, with an instrument not based on mortality that, in Buenos Aires City, 1 in 3 patients with chronic diseases could die in the next year and had palliative care needs. PMID:27295702

  19. "Abnormal" illness behaviour in chronic fatigue syndrome and multiple sclerosis.

    PubMed Central

    Trigwell, P.; Hatcher, S.; Johnson, M.; Stanley, P.; House, A.

    1995-01-01

    OBJECTIVE--To investigate the presence of abnormal illness behaviour in patients with a diagnosis of chronic fatigue syndrome. DESIGN--A cross sectional descriptive study using the illness behaviour questionnaire to compare illness behaviour scores and illness behaviour profiles of patients with chronic fatigue syndrome and patients with multiple sclerosis. SETTING--A multidisciplinary fatigue clinic and a teaching hospital neurology outpatient clinic. SUBJECTS--98 patients satisfying the Oxford criteria for chronic fatigue syndrome and 78 patients with a diagnosis of multiple sclerosis. MAIN OUTCOME MEASURE--Responses to the 62 item illness behaviour questionnaire. RESULTS--90 (92%) patients in the chronic fatigue syndrome group and 70 (90%) in the multiple sclerosis group completed the illness behaviour questionnaire. Both groups had significantly high scores on the general hypochondriasis and disease conviction subscales and significantly low scores on the psychological versus somatic concern subscale, as measured in relation to normative data. There were, however, no significant differences in the subscale scores between the two groups and the two groups had identical illness behaviour profiles. CONCLUSION--Scores on the illness behaviour questionnaire cannot be taken as evidence that chronic fatigue syndrome is a variety of abnormal illness behaviour, because the same profile occurs in multiple sclerosis. Neither can they be taken as evidence that chronic fatigue and multiple sclerosis share an aetiology. More needs to be known about the origins of illness beliefs in chronic fatigue syndrome, especially as they are important in determining outcome. PMID:7613314

  20. Assessing Hopelessness in Terminally Ill Cancer Patients: Development of the Hopelessness Assessment in Illness Questionnaire

    PubMed Central

    Rosenfeld, Barry; Pessin, Hayley; Lewis, Charles; Abbey, Jennifer; Olden, Megan; Sachs, Emily; Amakawa, Lia; Kolva, Elissa; Brescia, Robert; Breitbart, William

    2013-01-01

    Hopelessness has become an increasingly important construct in palliative care research, yet concerns exist regarding the utility of existing measures when applied to patients with a terminal illness. This article describes a series of studies focused on the exploration, development, and analysis of a measure of hopelessness specifically intended for use with terminally ill cancer patients. The 1st stage of measure development involved interviews with 13 palliative care experts and 30 terminally ill patients. Qualitative analysis of the patient interviews culminated in the development of a set of potential questionnaire items. In the 2nd study phase, we evaluated these preliminary items with a sample of 314 participants, using item response theory and classical test theory to identify optimal items and response format. These analyses generated an 8-item measure that we tested in a final study phase, using a 3rd sample (n = 228) to assess reliability and concurrent validity. These analyses demonstrated strong support for the Hopelessness Assessment in Illness Questionnaire providing greater explanatory power than existing measures of hopelessness and found little evidence that this assessment was confounded by illness-related variables (e.g., prognosis). In summary, these 3 studies suggest that this brief measure of hopelessness is particularly useful for palliative care settings. Further research is needed to assess the applicability of the measure to other populations and contexts. PMID:21443366

  1. Assessing Hopelessness in Terminally Ill Cancer Patients: Development of the Hopelessness Assessment in Illness Questionnaire

    ERIC Educational Resources Information Center

    Rosenfeld, Barry; Pessin, Hayley; Lewis, Charles; Abbey, Jennifer; Olden, Megan; Sachs, Emily; Amakawa, Lia; Kolva, Elissa; Brescia, Robert; Breitbart, William

    2011-01-01

    Hopelessness has become an increasingly important construct in palliative care research, yet concerns exist regarding the utility of existing measures when applied to patients with a terminal illness. This article describes a series of studies focused on the exploration, development, and analysis of a measure of hopelessness specifically intended…

  2. Attributional analysis of chronic illness outcomes.

    PubMed

    Lowery, B J; Jacobsen, B S

    1985-01-01

    The Weiner et al. attribution model has generated a great deal of research on attributions for success and failure in academic achievement situations. Studies of success and failure attributions in real-life situations of high personal concern are limited. If the attribution model is to lead to a general theory of motivation, such tests in real-life situations are critical. In this study, causal attributions for success and failure outcomes of chronically ill patients were examined. Results indicated at least partial support for the model. Patients tended to attribute success internally and failure externally, but stability and expectations were not linked in this sample. Moreover, a tendency to respond with no cause to an open-ended measure and to hold little commitment to any causes on a closed-ended measure was characteristic of failure subjects. PMID:3844736

  3. How music-inspired weeping can help terminally ill patients.

    PubMed

    Norton, Kay

    2011-09-01

    Music's power to improve the 'human condition' has been acknowledged since ancient times. Something as counter-intuitive as weeping in response to music can ameliorate suffering for a time even for terminally ill patients. Several benefits-including catharsis, communication, and experiencing vitality-can be associated with grieving in response to "sad" music. In addressing the potential rewards of such an activity for terminally ill patients, this author combines concepts from philosopher Jerrold R. Levinson's article, entitled "Music and Negative Emotion," an illustration from a major motion picture, and supporting research from medical reports and aesthetic writings. Carefully offering this experience is recommended for patients who retain the capacity to express preference. PMID:21626088

  4. Comforts of Home: Home Care of the Terminally Ill

    PubMed Central

    Fraser, Jacqueline

    1990-01-01

    When a terminal illness is diagnosed, it is appropriate for the family physician to take a primary role in future management. Care goals change from being disease-focused and cure-directed to being person-focused and comfort-targeted. The patient and family comprise the unit of care. Care of the terminally ill in the home requires good planning, teamwork, excellent symptom management, and a commitment by the family physician to be available or provide alternate coverage. Death in the home should be an option for the patient and family whenever feasible. Caring for patients until death and supporting their families and friends are rewarding and positive parts of family practice. PMID:21233972

  5. The MMPI-2 in chronic psychiatric illness.

    PubMed

    Bosch, Peggy; Van Luijtelaar, Gilles; Van Den Noort, Maurits; Schenkwald, Julia; Kueppenbender, Nicole; Lim, Sabina; Egger, Jos; Coenen, Anton

    2014-10-01

    While previous studies on the MMPI-2 in patients with schizophrenia and depression have used mixed samples of both early stage and chronic psychiatric patients. Here, it is investigated whether chronicity itself might have a differential effect on the MMPI-2 profiles of these patients and whether demoralization 'associated with long-term illness' affects the scales of the MMPI-2. Thirty long-term patients with schizophrenia, 30 long-term patients with depression, and 30 healthy participants completed the MMPI-2. Groups were compared on Clinical Scales and on the Restructured Clinical (RC) Scales. Patients with schizophrenia differed from patients with depression on 14 MMPI-2 scales and from healthy controls on 10 scales, generally showing mean UT-scores < 65, indicating a subjective experience of (near) normal functioning. Patients with depression differed from healthy controls on 17 scales mostly with UT-scores > 65, indicating impaired functioning. Demoralization was higher in patients with depression than in patients with schizophrenia and both psychiatric groups differed from the healthy control group. It is concluded that long-term patients with depression show impaired functioning and high demoralization, while long-term patients with schizophrenia surprisingly show near normal functioning and less demoralization. PMID:25059636

  6. Symptom Burden in Chronically Ill Homebound Individuals

    PubMed Central

    Wajnberg, Ania; Ornstein, Katherine; Zhang, Meng; Smith, Kristofer L; Soriano, Theresa

    2016-01-01

    Objectives To document the degree of symptom burden in an urban homebound population. Design Cross-sectional survey. Setting The Mount Sinai Visiting Doctors Program (MSVD). Participants All individuals newly enrolled in the MSVD. Measurements Edmonton Symptom Assessment Scale (ESAS), which consists of 10 visual analogue scales scored from 0 to 10; symptoms include pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, shortness of breath, and other. Results ESAS scores were completed for 318 participants. Most participants were aged 80 and older (68%) and female (75%); 36% were white, 22% black, and 32% Hispanic. Forty-three percent had Medicaid, and 32% lived alone. Ninety-one percent required assistance with one or more activities of daily living, 45% had a Karnofsky Performance Scale score between 0 and 40 (unable to care for self), and 43% reported severe burden on one or more symptoms. The most commonly reported symptoms were loss of appetite, lack of well-being, tiredness, and pain; the symptoms with the highest scores were depression, pain, appetite, and shortness of breath. Participants were more likely to have severe symptom burden if they self-reported their ESAS, had chronic obstructive pulmonary disease or diabetes mellitus with end organ damage, or had a Charlson Comorbidity Index greater than 3 and less likely to have severe burden if they had dementia. Conclusion In chronically ill homebound adults, symptom burden is a serious problem that needs to be addressed alongside primary and specialty care needs. PMID:23205716

  7. Neurodevelopment and chronic illness: Mechanisms of disease and treatment.

    PubMed

    Armstrong, F Daniel

    2006-01-01

    Successful treatment of many childhood diseases once considered terminal has resulted in the emergence of long-term effects of the disease or consequences of treatment that were previously unrecognized. Many of these long-term effects involve the central nervous system (CNS) and are developmental in the way that they emerge over time. Because we are now able to observe the natural history of childhood diseases such as sickle cell anemia or HIV, or the consequences of treatment of disease such as leukemia, brain tumors, or kidney disease, we are also able to study a number of biological mechanisms that result in long-term neurocognitive impairment. While some of the neurodevelopmental outcomes can be directly linked to structural damage of the CNS, other systems (e.g., hematologic, immunologic, pulmonary) appear to play crucial indirect roles in the development of the CNS and neurocognitive abilities because of the way that they affect the course of brain development and activity of the brain across time. Important interactions between acute disease factors, biological mechanisms, age at the time of disease or treatment effect, and disruptions in patterns of development after successful treatment or management all provide support for a neurodevelopmental model of childhood chronic illness. Testing this model may make it possible to more accurately predict the timing and degree of severity of long-term neurodevelopmental consequences, provide guidance for improved treatment and prevention, and offer better understanding of neurodevelopmental disruptions that occur in other non-chronic illness related disabilities. PMID:17061286

  8. AIDS and the Chronic Mentally Ill: Legal and Ethical Issues.

    ERIC Educational Resources Information Center

    Satriano, James; Karp, Mitchell

    The chronic mentally ill experience substantially higher rates of HIV infection than the general population. This paper examines the problems which confront the chronic mentally ill and society at large. Discussed are the questions of whether or not psychiatric patients should be excepted, due to their cognitive and behavioral impairments, from…

  9. Health Care Hassles of Caregivers to the Chronically Ill

    ERIC Educational Resources Information Center

    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…

  10. Psychosocial Aspects of Chronic Illness in Adolescents with Thalassaemia Major.

    ERIC Educational Resources Information Center

    Zani, B.; And Others

    1995-01-01

    Evaluated the impact of chronic illness on the psychological functioning and social behavior of adolescent patients. A questionnaire was given to thalassaemics (n=90) and a control group (n=100) investigating coping strategies in stressful situations. Study supports hypothesis that chronic illness does not necessarily imply psychopathologies, but…

  11. Effects of Sudden vs. Chronic Illness Death on Bereavement Outcome.

    ERIC Educational Resources Information Center

    Sanders, Catherine M.

    1982-01-01

    Interviewed bereaved persons shortly after the death of a close family member and 18 months later. Respondents were grouped according to mode of death. The short-term chronic illness group made the most favorable adjustment. Sudden death and long-term chronic illness death groups sustained higher intensities of bereavement. (Author/RC)

  12. Reclaiming a Positive Identity in Chronic Illness through Artistic Occupation.

    ERIC Educational Resources Information Center

    Reynolds, Frances

    2003-01-01

    A study of 10 chronically ill women showed how they positively reconstructed self and identity through engaging in textile artwork. Findings suggest that meaningful artistic occupation may provide a source of positive identity for people with chronic illness. (Contains 24 references.) (JOW)

  13. Bishops' response to Act on Rights of Terminally Ill.

    PubMed

    Brodeur, D

    1987-01-01

    In August 1985 the National Conference of Commissioners on Uniform State Laws drafted a document entitled The Uniform Rights of the Terminally Ill Act, which it recommended for enactment by all U.S. states. The act attempts to set uniform, clear guidelines for advance directives, or living wills--written declarations made by a patient that are used to guide treatment decisions should the patient become incompetent and terminally ill. The act limits the scope of an advance directive to the withdrawal or withholding of "life-sustaining treatment," which is "any medical procedure or intervention that when administered to a qualified patient will serve only to prolong the process of dying." Qualified patients are those with a terminal condition, which is "an incurable or irreversible condition that without the administration of life-sustaining treatment will, in the opinion of the attending physician, result in death within a relatively short time." The National Conference of Catholic Bishops (NCCB) Committee for Pro-Life Activities responded to the act in July 1986. The NCCB wishes to narrow the act's scope to apply only to patients in the "final stage of a terminal condition." Other specific concerns are the withdrawal of artificial nutrition and hydration, the need for communication with the family in making decisions, and the protection of an unborn child's life when the mother fulfills the conditions of the act and her living will stipulates a desire for withdrawal of life-sustaining treatment.(ABSTRACT TRUNCATED AT 250 WORDS) PMID:10280352

  14. Nutritional demands in acute and chronic illness.

    PubMed

    Richardson, Rosemary A; Davidson, H Isobel M

    2003-11-01

    Common to both acute and chronic disease are disturbances in energy homeostasis, which are evidenced by quantitative and qualitative changes in dietary intake and increased energy expenditure. Negative energy balance results in loss of fat and lean tissue. The management of patients with metabolically-active disease appears to be simple; it would involve the provision of sufficient energy to promote tissue accretion. However, two fundamental issues serve to prevent nutritional demands in disease being met. The determination of appropriate energy requirements relies on predictive formulae. While equations have been developed for critically-ill populations, accurate energy prescribing in the acute setting is uncommon. Only 25-32% of the patients have energy intakes within 10% of their requirements. Clearly, the variation in energy expenditure has led to difficulties in accurately defining the energy needs of the individual. Second, the acute inflammatory response initiated by the host can have profound effects on ingestive behaviour, but this area is poorly understood by practising clinicians. For example, nutritional targets have been set for specific disease states, i.e. pancreatitis 105-147 kJ (25-35 kcal)/kg; chronic liver disease 147-168 kJ (35-40 kcal)/kg, but given the alterations in gut physiology that accompany the acute-phase response, targets are unlikely to be met. In cancer cachexia attenuation of the inflammatory response using eicosapentaenoic acid results in improved nutritional intake and status. This strategy poses an attractive proposition in the quest to define nutritional support as a clinically-effective treatment modality in other disorders. PMID:15018475

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

    PubMed

    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. PMID:23955842

  16. The family, crisis and chronic illness: an evolutionary model.

    PubMed

    Shaw, M C; Halliday, P H

    1992-05-01

    While chronic illness has a profound impact upon the individual, an immense burden is imposed upon the family. When the competing demands of an illness and the family escalate exponentially, there may be a crisis. Traditionally, crisis theory has been applied to acute care contexts such as emergency, intensive care and mental health nursing. Yet, clinical experience with families and chronic illness supports the notion of periodic crises from the prediagnostic phase to the long-haul of the illness. Moreover, the authors hypothesize that the family's perception of the event determines whether the crisis is perceived as a threat or a challenge. This paper thus addresses the perception of crisis within the framework of chronic illness from a biological and family systems nursing perspective. First, the theory of Humberto Maturana, a Chilean biologist, is explored and applied to clinical observations regarding family, crisis and chronic illness. Second, an evolutionary model for conceptualizing crisis and chronic illness is presented. Third, the role of beliefs in the family perceptions of crisis and chronic illness is discussed. PMID:1602067

  17. Cultural Expressions of Bodily Awareness Among Chronically Ill Filipino Americans

    PubMed Central

    Becker, Gay

    2003-01-01

    PURPOSE 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. METHODS 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. RESULTS 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. CONCLUSIONS 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. PMID:15040441

  18. Chronically Ill Children. A Psychologically and Emotionally Deviant Population?

    ERIC Educational Resources Information Center

    Tavormina, J. B.; And Others

    1976-01-01

    Evaluated were the psychosocial functioning levels of a group of 144 chronically ill (diabetic, asthmatic, cystic fibrotic, and hearing-impaired) children (5 to 19 years old) across a battery of standardized personality instruments. (Author)

  19. [Chronic critically ill patients from a gastroenterological perspective].

    PubMed

    Bittinger, M; Messmann, H

    2013-05-01

    From a gastroenterological point of view, for chronic critically ill patients a differentiation has to be made between general gastroenterological problems, which are important in many or all chronic critically ill patients and patients with gastroenterological diseases which are the reason for the chronic critically ill status. General gastroenterological problems are, for example the nutrition of these patients and also considerations about ulcer prophylaxis or gastroenterological complications, such as antibiotic-associated colitis. Gastroenterological diseases as the reason for a chronic critically ill status are more in the minority. Diseases which should be taken into consideration are advanced liver cirrhosis and short bowel syndrome. This manuscript is intended to discuss gastroenterological problems in this selected group of patients and to show possible solutions and treatment options. PMID:23423578

  20. Living with a chronic illness - dealing with feelings

    MedlinePlus

    ... a chronic illness can bring up many different feelings. Learn about common emotions you might have when you are diagnosed and ... and how to take care of yourself, your feelings may change. Fear or shock may give way ...

  1. Are We Leaving Children with Chronic Illness Behind?

    ERIC Educational Resources Information Center

    Irwin, Mary Kay; Elam, Megan

    2011-01-01

    Novel treatments are improving the prognosis for many illnesses, making it possible to survive diseases that were once considered fatal. With these advancements comes great responsibility to ensure quality of life for those living with chronic illness. Educators are among the group of professionals accountable for ensuring quality of life…

  2. Mothers' Attributions Regarding the Behavior of Chronically Ill Children.

    ERIC Educational Resources Information Center

    Walker, Lynn S.

    Parents of chronically ill children are faced with the difficult task of being vigilant and yet not overprotective of their children. The literature suggests that parents hold a positive bias toward their ill children. Attribution theory gives a framework in which to study parents' ideas about their children's behavior. A study was conducted to…

  3. Feasibility of Mobile Phone-Based Management of Chronic Illness

    PubMed Central

    Smith, Joshua C.; Schatz, Bruce R.

    2010-01-01

    According to the CDC, chronic conditions such as heart disease, cancer, and diabetes cause 75% of healthcare spending in the United States and contribute to nearly seven in ten American deaths. However, despite the prevalence and high-cost of chronic disease, they are also among the most preventable of health problems1. How can we use technology to improve self-care, reduce costs, and lessen the burden on medical professionals? Devices to help manage chronic illness have been marketed for years, but are these specialized devices really necessary? In this paper, the authors identify the aspects of the major chronic illnesses that most need to be controlled and monitored in the US today and explore the feasibility of using current mobile phone technology to improve the management of chronic illness. Here we show that even the average mobile phone is capable of improving the management of all relevant health features in some way. PMID:21347080

  4. Health-related quality of life for chronically ill children.

    PubMed

    Cantrell, Mary Ann; Kelly, Michelle M

    2015-01-01

    Approximately 43% of children in the United States (32 million) are currently living with at least 1 of 20 common chronic childhood illnesses. The most common chronic childhood illnesses are asthma, cystic fibrosis, diabetes, obesity, malnutrition, developmental disabilities, cerebral palsy, consequences of low birthweight, and mental illness. For all chronically ill pediatric populations, the outcome of health-related quality of life (HRQOL) is particularly important because many of these children have not and will not be cured, and will continue to manage their chronic illness into adulthood. Advances in biomedical science and technology continue to improve efficacy of treatments and care for chronically ill children, adolescents, and their families, which highlight the importance measurement of HRQOL as a treatment and health status outcome. The construct of HRQOL is subjective, multidimensional, dynamic, and unique to each individual. It includes aspects of physical, psychological, social function, and goal attainment. Outcomes of HRQOL now include the financial implications for these children and their families, as well as financial and organizational consequences for healthcare planning and delivery of services.This article reviews the importance of HRQOL as a health outcome for chronically ill children. A historical overview and synthesis of the conceptualization and measurement of HRQOL for the chronically ill pediatric population is provided. Current research investigations that have measured health outcomes using individual scales tailored to children's specific symptoms health outcomes, such as PROMIS®-Patient Reported Outcomes Measurement Information System-are reviewed. The clinical applications of HRQOL outcomes research include facilitation of patient-healthcare provider communication, improved patient satisfaction, identification of hidden morbidities, a positive impact on clinical decision making, and improvement of patient outcomes over time

  5. Concept analysis of good death in terminally ill patients.

    PubMed

    Granda-Cameron, Clara; Houldin, Arlene

    2012-12-01

    The purpose of this concept analysis of good death was to examine the attributes of a good death and explore the changes of the concept over time and its impact on terminally ill patients. The method used for this analysis was the Rodgers' evolutionary method. A literature search was completed using Medline Ovid and Journal Storage (JSTOR).The findings describe the evolution of the good death concept over time from the prehistoric era followed by premodern, modern, and postmodern times. In addition, information is presented about surrogate terms, attributes, antecedents, and consequences associated with good death followed by analysis and discussion of the findings. General attributes of a good death include pain and symptom management, awareness of death, patient's dignity, family presence, family support, and communication among patient, family, and health care providers. PMID:22363039

  6. Terminally ill cancer patients' wish to hasten death.

    PubMed

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

    2002-07-01

    This exploratory study investigated factors associated with the wish to hasten death among a sample of terminally ill cancer patients. Semi-structured interviews conducted on a total of 72 hospice and home palliative care patients were subjected to qualitative analysis using QSR-NUDIST. The main themes to emerge suggested that patients with a high wish to hasten death had greater concerns with physical symptoms and psychological suffering, perceived themselves to be more of a burden to others, and experienced higher levels of demoralization, while also reporting less confidence in symptom control, fewer social supports, less satisfaction with life experiences and fewer religious beliefs when compared with patients who had a moderate or no wish to hasten death. The implications of these findings will be discussed. PMID:12132547

  7. Music therapy with persons who are indigent and terminally ill.

    PubMed

    Mramor, K M

    2001-01-01

    This paper addresses the music therapy process specific to one subgroup of the general population identified as having terminal illness. This subgroup includes individuals who are impoverished, homeless, and do not have someone to provide them with care at the end of life. Based upon her clinical work at Malachi House, the author identified three distinct phases of the music therapy process with these individuals: engagement, relationship building, and actively dying. The progress of 50 residents through the therapy process was documented over a three-year period, as was the musical and nonmusical content of music therapy sessions. This paper reviews the results of the documentation recorded and offers case examples to represent each phase. PMID:11816760

  8. Death--whose decision? Euthanasia and the terminally ill.

    PubMed

    Fraser, S I; Walters, J W

    2000-04-01

    In Australia and Oregon, USA, legislation to permit statutory sanctioned physician-assisted dying was enacted. However, opponents, many of whom held strong religious views, were successful with repeal in Australia. Similar opposition in Oregon was formidable, but ultimately lost in a 60-40% vote reaffirming physician-assisted dying. This paper examines the human dilemma which arises when technological advances in end-of-life medicine conflict with traditional and religious sanctity-of-life values. Society places high value on personal autonomy, particularly in the United States. We compare the potential for inherent contradictions and arbitrary decisions where patient autonomy is either permitted or forbidden. The broader implications for human experience resulting from new legislation in both Australia and Oregon are discussed. We conclude that allowing autonomy for the terminally ill, within circumscribed options, results in fewer ethical contradictions and greater preservation of dignity. PMID:10786323

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

    ERIC Educational Resources Information Center

    Riccio, Cynthia A.; Pliego, Jessica; Rae, William A.

    2016-01-01

    An increasing number of children experience chronic health issues that affect their academic and behavioral functioning, as well as psychological well-being. At the same time, psychological stress can exacerbate the chronic illness. The first line of treatment most often is medical (e.g., pharmacology, surgery, radiation). Even when the medical…

  10. Differential Outcomes of Adolescents with Chronically Ill and Healthy Parents

    ERIC Educational Resources Information Center

    Sieh, Dominik Sebastian; Visser-Meily, Johanna Maria Augusta; Meijer, Anne Marie

    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 ill parent and 112 adolescents from 68 families…

  11. Examining the Education Gradient in Chronic Illness

    ERIC Educational Resources Information Center

    Chatterji, Pinka; Joo, Heesoo; Lahiri, Kajal

    2015-01-01

    We examine the education gradient in diabetes, hypertension, and high cholesterol. We take into account diagnosed as well as undiagnosed cases and use methods accounting for the possibility of unmeasured factors that are correlated with education and drive both the likelihood of having illness and the propensity to be diagnosed. Data come from the…

  12. Living with a Chronic Illness or Disability

    MedlinePlus

    ... Health Issues Conditions Abdominal ADHD Allergies & Asthma Autism Cancer Chest & Lungs Chronic Conditions Cleft & Craniofacial Developmental Disabilities Ear Nose & Throat Emotional Problems Eyes Fever From Insects or Animals Genitals and Urinary Tract Glands & Growth ...

  13. Information Technology to Support Improved Care For Chronic Illness

    PubMed Central

    Chaney, Edmund; Shoai, Rebecca; Bonner, Laura; Cohen, Amy N.; Doebbeling, Brad; Dorr, David; Goldstein, Mary K.; Kerr, Eve; Nichol, Paul; Perrin, Ruth

    2007-01-01

    Background In populations with chronic illness, outcomes improve with the use of care models that integrate clinical information, evidence-based treatments, and proactive management of care. Health information technology is believed to be critical for efficient implementation of these chronic care models. Health care organizations have implemented information technologies, such as electronic medical records, to varying degrees. However, considerable uncertainty remains regarding the relative impact of specific informatics technologies on chronic illness care. Objective To summarize knowledge and increase expert consensus regarding informatics components that support improvement in chronic illness care. Design: A systematic review of the literature was performed. “Use case” models were then developed, based on the literature review, and guidance from clinicians and national quality improvement projects. A national expert panel process was conducted to increase consensus regarding information system components that can be used to improve chronic illness care. Results The expert panel agreed that informatics should be patient-centered, focused on improving outcomes, and provide support for illness self-management. They concurred that outcomes should be routinely assessed, provided to clinicians during the clinical encounter, and used for population-based care management. It was recommended that interactive, sequential, disorder-specific treatment pathways be implemented to quickly provide clinicians with patient clinical status, treatment history, and decision support. Conclusions Specific informatics strategies have the potential to improve care for chronic illness. Software to implement these strategies should be developed, and rigorously evaluated within the context of organizational efforts to improve care. Electronic supplementary material Supplementary material is available for this article at doi: 10.1007/s11606-007-0303-4. PMID:18026812

  14. Caregiver Grief in Terminal Illness and Bereavement: A Mixed-Methods Study

    ERIC Educational Resources Information Center

    Waldrop, Deborah P.

    2007-01-01

    Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death. Caregiver grief was a state of heightened responsiveness during end-stage care: anxiety, hostility, depression,…

  15. Preparation for Counseling Adults with Terminal Illness: Personal and Professional Parallels

    ERIC Educational Resources Information Center

    Manis, Amie A.; Bodenhorn, Nancy

    2006-01-01

    This article presents a review of the literature on counseling adults with terminal illness, particularly the literature on the nature of preparation that counselors and other professionals who attend to the needs of adults with a terminal illness require. The authors review information and findings from philosophical, psychological, practical,…

  16. Finding Boundaries Inside Prison Walls: Case Study of a Terminally Ill Inmate

    ERIC Educational Resources Information Center

    O'Connor, Mary-Frances

    2004-01-01

    The number of terminally ill prison inmates rises each year. Mental health professionals are uniquely prepared to provide therapy during the end-of-life process with their assessment, training, empathy, and communication skills. This case study examines the six-month therapy of one terminally ill inmate, using a client-centered approach. Drawing…

  17. Self care for chronic illness: older African Americans and whites.

    PubMed

    Silverman, M; Musa, D; Kirsch, B; Siminoff, L A

    1999-06-01

    In-person interviews with two hundred and twenty-one older African Americans and whites in Allegheny County, Pennsylvania on their use of self care activities in the care of one of four chronic illnesses (chronic obstructive pulmonary disease (COPD), heart disease, diabetes mellitus, and arthritis, addressed which types of self care they used for each of these illnesses) the similarities and differences between African Americans and whites in their use of self care and how self care is initiated, modified and integrated into a context that includes help from others. The most common response in each of the illnesses was the use of medications or medical treatments by both African Americans and whites. However, there were some differences in the self care practices used by these two groups by illness type. Whites reported monitoring their illness significantly more than African Americans for diabetes and using assistive devices in the management of COPD significantly more than African Americans. While both African Americans and whites practice self care similarly in the management of heart disease, African Americans reported greater use of exercise in their management of arthritis. The amount of assistance provided by others in support of self care varied by illness and by African American and white. The differences in self care usage may be attributed to many factors, among them, differences in cultural experiences with the illness, health beliefs regarding its efficacy and the amount of assistance received from informal supports. PMID:14617891

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

    PubMed

    Wolf, Ruth

    2014-10-01

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

  19. Community Care for the Chronically Mentally Ill: Removing Barriers and Building Supports. Human Resources Series.

    ERIC Educational Resources Information Center

    Craig, Rebecca T.

    1986-01-01

    The plight of the chronically mentally ill is discussed in this document. Chronic mental illness is defined as producing major impairments in functioning for an extended period of time. It is noted the chronically mentally ill are expected to negotiate a bureaucratic maze to receive help. The history of treatment of the mentally ill is traced from…

  20. [Compliance among adolescents with a chronic illness: review].

    PubMed

    Bouteyre, E; Loue, B

    2012-07-01

    The continual progress in medicine has increased patient life expectation. However, treatments for chronic diseases are often consequential. This leads to problems of patient compliance, most particularly in teenage patients. Depression is frequently observed in persons affected by a chronic illness. These diseases can cause despair, which contributes to the risk of suicide. This article investigates the various notional and explanatory approaches to compliance. The literature review was based on the CAIRN, Medline, and EBSCOhost databases. The period investigated extended from 1999 to 2009. The keywords used were "adhésion thérapeutique", "observance", "compliance", "adolescence", "chronic illness", and "depression". Three axes stand out from this review: (1) the theoretical definition of compliance, (2) the frequency of depressive disorders among adolescents affected by a chronic illness, (3) the different ways to interpret compliance. We introduce and discuss the contents of each of these axes and discuss how they could orient research on the compliance of adolescents with a chronic illness. PMID:22658866

  1. Smoking Cessation in Chronically Ill Medical Patients.

    ERIC Educational Resources Information Center

    Sirota, Alan D.; And Others

    1985-01-01

    Followed eight male smokers with chronic pulmonary or cardiac disease through a smoking cessation program of gradual nicotine withdrawal, self-management, and relapse prevention. At one year, half remained abstinent, while relapsers smoked substantially less than before treatment. Reductions in carbon monoxide and thiocyanate levels were…

  2. How do terminally ill patients at home take their medication?

    PubMed

    Zeppetella, G

    1999-11-01

    Compliance with prescribed medication was assessed in 111 terminally ill patients referred to a community palliative care team using semistructured interviews and pill counting. One-hundred-and-six patients were prescribed a total of 597 drugs; of these patients, 64 (60%) were noncompliant. Thirty-five patients (33%) took less medication than prescribed, usually due to experiencing, or anxieties about, adverse events; the commonest drugs involved were analgesics. Seventeen patients (16%) took additional medication, usually purchased over the counter in response to inadequate symptom control or to adverse events from other drugs; the most common preparations were vitamins and analgesics. Twelve patients (11%) both took less medication than prescribed and also purchased medication over the counter. Most patients (90%) had two or more prescribers; patients who saw their general practitioners as their main prescriber were more likely to adhere to their prescribed medication. Patients who omitted and/or reduced their medication were more likely to see the hospital as their main prescriber. Drugs prescribed four times daily were most likely to be omitted and/or reduced. PMID:10715753

  3. Teicoplanin in home therapy of the terminally ill child.

    PubMed

    Ball, L M; Siddal, S; van Saenen, H

    1993-01-01

    Children discharged in the terminal phase of illness were offered the possibility of having central venous line infections treated with teicoplanin at home by their parents after suitable instruction. The decision to begin antibiotic treatment was subjective, based on a history of rigors and/or raised temperature in an otherwise "well" child. No difficulties were encountered in instructing the chosen parents. In all, five treatment periods of 7 days were required in the five children selected. The review time was 31 weeks (mean duration, 6.2 weeks/patient; range, 4-12 weeks), ended in all cases by death. Infection occurred a mean of 3.2 weeks after discharge (range, 1-8 weeks), and all episodes were successfully treated at home without hospital admission or ward-based support. No deaths occurred as a result of antibiotic therapy failure, and there were no clinically relevant side-effects. Autopsy confirmed the absence of central venous line infection in one patient, but blood culture was positive for Staphylococcus aureus in another. This study shows that home treatment of line infections with teicoplanin is effective and well tolerated, and offers advantages in terms of quality of life and parent-child relationships. PMID:8365460

  4. Variation in the spillover effects of illness on parents, spouses and children of the chronically ill

    PubMed Central

    Lavelle, Tara A.; Wittenberg, Eve; Lamarand, Kara; Prosser, Lisa A.

    2015-01-01

    Background Given the broad scope of the spillover effects of illness, it is important to characterize the variability in these outcomes in order to identify relationship types in which secondary impacts of illness are particularly important to include in health economic evaluations. Purpose To examine heterogeneity in spillover effects of chronic conditions on family members by type of familial relationship with patient. Methods Adults (≥18 years) and adolescents (13-17 years) who had a parent, spouse or child in their household with a chronic condition (including Alzheimer's disease/dementia, arthritis, cancer and depression) were recruited from a U.S. national panel to participate in an on-line survey. Respondents were asked to rate the spillover effect of their family member's illness on their own health on a 0-100 scale, with lower scores indicating greater spillover. Regression analysis was used to evaluate the association between rating scale scores and relationship with ill family member (ill parent, child, or spouse) for each illness separately, controlling for caregiving responsibility and the health status of the ill family member. Results 1267 adults and 102 adolescents met inclusion criteria. In adjusted analyses, having a sick child was significantly (p<0.05) associated with lower rating scale scores compared to having a spouse with the same condition (cancer: -24.2; depression -9.7). Having a non-elderly or elderly adult parent with a condition, compared to a spouse, was significantly associated with lower rating scale scores for arthritis (-3.8) and depression (-5.3), but not for Alzheimer's disease/dementia or cancer. Conclusions The impact of illness on family members, measured with a rating scale, varies by relationship type for certain illnesses. Having a child with cancer, a parent with arthritis, or either with depression, is significantly associated with greater spillover, compared to having a spouse with one of these conditions. PMID

  5. The use of mixed methods in studying a chronic illness

    PubMed Central

    Jason, Leonard A.; Reed, Jordan

    2016-01-01

    This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations. PMID:27088060

  6. What's Eating Gilbert Grape?: A Case Study of Chronic Illness

    ERIC Educational Resources Information Center

    Alexander, Matthew; Waxman, Dael; White, Patricia

    2006-01-01

    Cinemeducation refers to the use of movies or movie clips to educate learners about the psychosocial aspects of health care. This paper describes the use of a clip from the movie, "What's Eating Gilbert Grape?" to teach medical students about chronic illness. The clip is used to set up a case study based on the lead character, Gilbert…

  7. Smoking cessation and reduction in people with chronic mental illness

    PubMed Central

    Miller, Mollie E

    2015-01-01

    The high prevalence of cigarette smoking and tobacco related morbidity and mortality in people with chronic mental illness is well documented. This review summarizes results from studies of smoking cessation treatments in people with schizophrenia, depression, anxiety disorders, and post-traumatic stress disorder. It also summarizes experimental studies aimed at identifying biopsychosocial mechanisms that underlie the high smoking rates seen in people with these disorders. Research indicates that smokers with chronic mental illness can quit with standard cessation approaches with minimal effects on psychiatric symptoms. Although some studies have noted high relapse rates, longer maintenance on pharmacotherapy reduces rates of relapse without untoward effects on psychiatric symptoms. Similar biopsychosocial mechanisms are thought to be involved in the initiation and persistence of smoking in patients with different disorders. An appreciation of these common factors may aid the development of novel tobacco treatments for people with chronic mental illness. Novel nicotine and tobacco products such as electronic cigarettes and very low nicotine content cigarettes may also be used to improve smoking cessation rates in people with chronic mental illness. PMID:26391240

  8. MAPP: A Multimedia Instructional Program for Youths with Chronic Illness.

    ERIC Educational Resources Information Center

    Murdock, Peggy O'Hara; McClure, Christopher; Lage, Onelia G.; Sarkar, Dilip; Shaw, Kimberly

    The Multimedia Approach to Pregnancy Prevention (MAPP) is an expert intelligence multimedia program administered in outpatient and inpatient clinics in the University of Miami/Jackson Children's Hospital (Florida). The target population for the MAPP program is youths aged 9-14 years, diagnosed with chronic illnesses (asthma, diabetes, and sickle…

  9. School Psychologists' Role Concerning Children with Chronic Illnesses in Schools

    ERIC Educational Resources Information Center

    Barraclough, Camille; Machek, Greg

    2010-01-01

    The authors examined the role of school psychologists in working with children with chronic illnesses in the schools. A total of 300 practicing school psychologists in public schools, drawn from the National Association of School Psychologists membership directory, completed a standard mail survey. The survey solicited information on (a) graduate…

  10. Supporting the Learning of Children with Chronic Illness

    ERIC Educational Resources Information Center

    A'Bear, David

    2014-01-01

    This qualitative study explores the challenges that chronically ill students face in their learning as a result of prolonged and intermittent absences from school. It shows how the use of iPod technology as a communicative link minimized the impact of absences and allowed the student to experience true inclusion in their classroom, enabling the…

  11. Chronically Ill Children: A Psychologically and Emotionally Deviant Population?

    ERIC Educational Resources Information Center

    Tavormina, J. B.; And Others

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

  12. Discontinuing treatment in children with chronic, critical illnesses.

    PubMed

    Mahon, M M; Deatrick, J A; McKnight, H J; Mohr, W K

    2000-03-01

    Decisions about optimal treatment for critically ill children are qualitatively different from those related to adults. Technological advances over the past several decades have resulted in myriad treatment options that leave many children chronically, critically ill. These children are often technology dependent. With new technologies and new patient populations comes the responsibility to understand how, when, and why these technologies are applied and when technology should not be used or should be withdrawn. Much has been written about ethical decision making in the care of chronically, critically ill adults and newborns. In this article, relevant factors about the care of children older than neonates are described: standards, decision makers, age of the child, and pain management. A case study is used as a mechanism to explore these issues. Dimensions of futility, discontinuing aggressive treatment, and a consideration of benefits and burdens are integrated throughout the discussion to inform nurse practitioner practice. PMID:11219897

  13. Imaginal Coping and Childhood Illness: How Children Relate to Treatments for Chronic Illness.

    ERIC Educational Resources Information Center

    Clark, Cindy Dell

    This ethnographic study used multiple approaches to try to determine the emotional experience of young children (ages 5 to 8) with chronic illnesses. Forty-six children with severe asthma and diabetes were interviewed on two separate occasions using child-centered in-depth interviews that included play-based interviewing. The study also employed…

  14. The essence of spirituality of terminally ill patients.

    PubMed

    Chao, Co-Shi Chantal; Chen, Ching-Huey; Yen, Miaofen

    2002-12-01

    The purpose of this hermeneutic study was to investigate the essence of spirituality of terminally ill patients. In-depth unstructured interviews were used as the method for data collection. In the six-month period of data collection, the researcher was in the role of a hospice palliative care consultant who directly took care of the subject patients in a hospice ward of a teaching hospital. The six subjects were selected purposively according to various demographic backgrounds. Interview transcripts provided the data for analysis. The results were composed of four constitutive patterns and ten themes. The first constitutive pattern was "Communion with Self" which included three themes: (1) Self-identity--spirituality is the discovery of the authentic self. (2) Wholeness--a human being is full of contradictions but still in wholeness. (3) Inner peace--spirituality is negotiating conflicts for self-reconciliation. The second constitutive pattern was "Communion with others" which included two themes: (1) Love--spirituality is a caring relationship but not an over-attachment to others. (2) Reconciliation--spirituality is to forgive and to be forgiven. The third constitutive pattern was "Communion with Nature" which included two themes: (1) Inspiration from the nature--spirituality is the resonance of the marvelous beauty of nature. (2) Creativity--spirituality is conceiving imaginatively. The fourth constitutive pattern was "Communion with Higher Being" which included three themes: (1) Faithfulness--spirituality is keeping the trust dependably. (2) Hope--spirituality is claiming possibilities. (3) Gratitude--spirituality is giving thanks and embracing grace. The scientific rigor of this qualitative research as well as the strength and limitations of the study are reported. Implications for hospice palliative care and future research are recommended. PMID:12522736

  15. Communicating the Experience of Chronic Pain and Illness Through Blogging

    PubMed Central

    2012-01-01

    Background 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. Objective 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. Methods 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. Results 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. Conclusions Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment

  16. The challenge of providing palliative care to terminally ill prison inmates in the UK.

    PubMed

    Wood, Felicity Juliette

    2007-03-01

    Terminally ill prison inmates have a right to all aspects of health care including palliative care provision. However, there are numerous difficulties in providing palliative care to high-security prisoners in the UK. Local community hospices may be reluctant to admit terminally ill prisoners and therefore initiatives must be established to provide appropriate palliative care within the prison itself. Dying prisoners need companionship and to be shown respect and compassion to avoid feelings of loneliness and hopelessness. Inmate volunteers can provide an invaluable source of support and friendship for the terminally ill prisoner, helping to improve quality of life. PMID:17505406

  17. Improving Communication About Serious Illness

    ClinicalTrials.gov

    2016-07-12

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

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

    PubMed Central

    Kang, Minah; Kim, Jaiyong; Bae, Sang-Soo; Choi, Yong-Jun; Shin, Dong-Soo

    2014-01-01

    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. PMID:25139170

  19. Care Coordination for the Chronically Ill: Understanding the Patient's Perspective

    PubMed Central

    Maeng, Daniel D; Martsolf, Grant R; Scanlon, Dennis P; Christianson, Jon B

    2012-01-01

    Objective To identify factors associated with perception of care coordination problems among chronically ill patients. Methods Patient-level data were obtained from a random-digit dial telephone survey of adults with chronic conditions. The survey measured respondents' self-report of care coordination problems and level of patient activation, using the Patient Activation Measure (PAM-13). Logistic regression was used to assess association between respondents' self-report of care coordination problems and a set of patient characteristics. Results Respondents in the highest activation stage had roughly 30–40 percent lower odds of reporting care coordination problems compared to those in the lowest stage (p < .01). Respondents with multiple chronic conditions were significantly more likely to report coordination problems than those with hypertension only. Respondents' race/ethnicity, employment, insurance status, income, and length of illness were not significantly associated with self-reported care coordination problems. Conclusion We conclude that patient activation and complexity of chronic illness are strongly associated with patients' self-report of care coordination problems. Developing targeted strategies to improve care coordination around these patient characteristics may be an effective way to address the issue. PMID:22985032

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

    ERIC Educational Resources Information Center

    Jackson, Megan

    2013-01-01

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

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

    ERIC Educational Resources Information Center

    Katzman, Lauren

    2013-01-01

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

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

    ERIC Educational Resources Information Center

    Revenson, Tracey A.; Felton, Barbara J.

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

  3. Rural women with chronic illness: computer use and skill acquisition.

    PubMed

    Weinert, Clarann; Hill, Wade G

    2005-01-01

    Chronically ill rural women must manage complex illness without easy access to health care resources including support and health information. The Women to Women project is a technology-based program with an overarching aim to assist rural women in the day-to-day management of their illnesses. An important aspect of the Women to Women program is teaching the women how to use the Internet to meet their support and informational needs. The purposes of this article are to examine changes in 1) the level of computer skills, 2) degree of comfort in using the computer, and 3) knowledge of Internet functions for the participants in the Women to Women computer-based intervention. Results of the initial analysis of data from 63 women (intervention group n = 29, control group n = 34) indicate that women participating in the intervention reported greater computer skills and computer comfort and greater knowledge of specific aspects of Internet use than women in the control group. These findings were further strengthened considering that intervention and control group differentials were sustained 8 months after the end of the women's participation in the computer intervention. With the attainment of computer and Internet skills, it is expected that these rural women will have a sustained ability to access quality Internet information that will allow them to better manage and adapt to their chronic illnesses. PMID:16165009

  4. [Care and chronic illness: family caregiver's viewpoint in northeast Brazil].

    PubMed

    Pinto, Juliana Maria de Sousa; Nations, Marilyn Kay

    2012-02-01

    The provision of care causes stress in everyday family dynamics leading to physical, mental and emotional complications in caregivers and spouses' loss of liberty and/or overwork. Between March and November 2006, this anthropological research examined family caregiving in the context of Chronic Obstructive Pulmonary Disease (COPD). By means of ethnographic interviews, illness narratives and participant observation, the scope was to describe family reorganization and coexistence with the disease and its evolution, caregiver perceptions about patient difficulties and limitations experienced and strategies employed to tackle their illness. Six low-income family caregivers, living in poor, urban areas in the outskirts of the capital city, Fortaleza, Ceará, Brazil, participated in the study. From the Content Analysis, two categories arose: "sharing suffering" and "attitudes and behavior perceived and experienced by caregivers." In-depth narratives revealed marked affection between patients and their family caregivers. Despite poverty, structural violence, unemployment, social prejudice and low salaries endemic in the Northeast of Brazil, the caregivers find effective ways to cope with chronic illness besides creating strategies to diminish suffering caused by the illness. PMID:22267046

  5. Children with chronic illnesses: factors influencing family hardiness.

    PubMed

    Woodson, Kenneth D; Thakkar, Sunny; Burbage, Michelle; Kichler, Jessica; Nabors, Laura

    2015-03-01

    The current study assessed factors related to family hardiness in families of children coping with medical procedures related to a chronic illness. Participants were 68 parents of children with chronic illnesses, who were receiving complex medical treatment at a local hospital. Parents completed a scale assessing family hardiness and a semi-structured interview assessing their positive and negative coping strategies and those of their child. A linear regression analysis was used to examine the relationship between several predictors, including child age, number of medical conditions for the child, family income, number of positive and negative parent and child coping strategies, and family hardiness (outcome variable). Results indicated that parents of older children and children who exhibited negative coping strategies reported lower family hardiness. Older children may have had their chronic illness for a longer period of time, which could be wearing for the children and their families. Results of this study suggested that negative child coping may have deleterious effects on the family, and nurses and other health professionals should provide ideas for positive child coping and consider collaboration with mental health providers when they identify children facing emotional problems. PMID:25555039

  6. Systematic review of character development and childhood chronic illness

    PubMed Central

    Maslow, Gary R; Hill, Sherika N

    2016-01-01

    AIM: To review empirical evidence on character development among youth with chronic illnesses. METHODS: 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). RESULTS: 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, 2nd 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. CONCLUSION: Future empirical studies should learn from the strengths and weaknesses of the existing literature on character development among youth with chronic medical conditions

  7. Loving your child to death: Considerations of the care of chronically ill children and euthanasia in Emil Sher’s Mourning Dove

    PubMed Central

    Mukhida, Karim

    2007-01-01

    How do parents cope when their child is ill or dying, and when he or she is experiencing constant pain or suffering? What do parents think of the contributions that medical professionals make to the care of their chronically or terminally ill child? Is it possible for a parent to love a child so much that they wish their child to be dead? The purpose of the present paper is to explore these questions and aspects of the care of chronically or terminally ill children using Mourning Dove’s portrayal of one family’s attempt to care for their ill daughter. Mourning Dove, a play written by Canadian playwright Emil Sher, was inspired by the case of Saskatchewan wheat farmer Robert Latimer who killed his 12-year-old daughter, Tracy, who suffered with cerebral palsy and had begun to experience tremendous pain. Rather than focusing on the medical or legal aspects of the care of a chronically ill child, the play offers a glimpse into how a family copes with the care of such a child and the effect the child’s illness has on the family. The reading and examination of nonmedical literature, such as Mourning Dove, serves as a useful means for medical professionals to better understand how illness affects and is responded to by patients and their families. This understanding is a prerequisite for them to be able to provide complete care of children with chronic or terminal illnesses and their families. PMID:19043501

  8. Psychosocial correlates of illness burden in chronic fatigue syndrome.

    PubMed

    Antoni, M H; Brickman, A; Lutgendorf, S; Klimas, N; Imia-Fins, A; Ironson, G; Quillian, R; Miguez, M J; van Riel, F; Morgan, R

    1994-01-01

    We related reported physical symptoms, cognitive appraisals (e.g., negative style of thinking), and coping strategies (e.g., denial/disengagement strategies) with illness burden across several functional domains separately in subsets of chronic fatigue syndrome (CFS) patients with (n = 26) and without (n = 39) concurrently diagnosed major depressive disorder (MDD). In regard to cognitive appraisal measures, automatic thoughts and dysfunctional attitudes were strongly associated with a higher illness burden, as indicated in sickness impact profile (SIP) scores. Active-involvement coping strategies measured on COPE scales (active coping, planning, and positive reinterpretation and growth) were not associated with SIP scores, while other coping strategies (mental disengagement, behavioral disengagement, and denial) were positively correlated with psychosocial and physical SIP scales, especially those pertaining to interpersonal life-style arenas. After we accounted for the number of different CFS-specific physical complaints reported and DSM-III-R depression diagnosis status, cognitive appraisals and coping strategies predicted a substantial proportion of the variance in the severity of illness burden. For the most part, the magnitude of these relationships between our predictor model variables and illness burden severity was similar in the MDD and non-MDD subgroups. PMID:8148457

  9. The injustice of it all: caring for the chronically ill.

    PubMed

    Zaner, Richard M; Bliton, Mark J

    1991-01-01

    ... While Spiegelberg emphasizes these "cosmic" -- perhaps more accurately, ontological -- features of birth and undeserved inequalities, it seems to us not inappropriate to suggest that what Douard terms "outrage" and Annas "instinct" go in the same direction. When impairment occurs without desert, something should be done to help. This is all the more true when, as in cases of chronic affliction that concern Douard or the case of the Siamese twins that fascinates Annas, something helpful can be done. Then, in Spiegelberg's words, what is "undeserved" demands redress. In these terms, each of these authors points to a deeply rooted sense of our common human lot. Or, in Albert Schweitzer's apt phrase, to witness such undeserved misfortune is to awaken "a moral sense that is usually dormant but that on special occasions can be brought to the surface." Chronic illnesses, we suggest -- no less than the "accidents of birth" that concern Spiegelberg -- are just such "special occasions" for awakening that "moral sense" suggested by Douard in his appeal to the "outrage" of doing nothing for, or refusing to help, the chronically ill. PMID:11642945

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

    ERIC Educational Resources Information Center

    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…

  11. Positive Interventions for Children with Chronic Illness: Parents' and Teachers' Concerns and Recommendations

    ERIC Educational Resources Information Center

    Shiu, Shiona

    2004-01-01

    Schools today are faced with increasing numbers of students with chronic illness. Medical advances, which improve health and prolong life, and increased incidence levels among some illnesses have led to this increase. Children with a chronic illness are more likely to encounter academic, social and emotional difficulties. The challenge facing…

  12. Quality of life for chronic psychiatric illnesses and home care

    PubMed Central

    Molu, Nesibe Gunay; Ozkan, Birgul; Icel, Sema

    2016-01-01

    Nowadays, mental illnesses are gradually increasing and so does chronic psychiatric patients. As a result of this increase, chronic psychiatric disorders lead the burden of patients and their families. To reduce the burden of mental illnesses on individuals and their families, treatment and care are given including psychosocial, physiological and medical support and social services. To begin with, home care enables both the patient and his or her family to stay at their own houses and not to be bothered with residents or long-term, institutional-based nursing homes. In addition, the home care providers deliver services to the patient’s at their own house. The other advantages of taking care at home is that it eases financial issues in terms of reducing the cost, reduces the patient’s symptoms and improve the individual’s quality of life (QoL). In addition to these, home care also minimizes the burden on outpatient services and provides help for the patient and the family in order to solve their problems and give support. Home care services help patients to get their freedom back and enhance the quality of their lives. Thus, it is necessary to procure and implement these services and supply both the patient and his or her family a high-quality life. Sources of data/ study selection: Literature review was done by using the keywords “home care, patient with chronic mental illness, quality of life, home care nursing” from the sources including PsychINFO, PsychARTICLES, MEDLINE, PubMED, EBSCOHOST and The COCHRANE LIBRARY in the time period of 2005- 2015. PMID:27182272

  13. Health Vlogger-Viewer Interaction in Chronic Illness Management

    PubMed Central

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

    2014-01-01

    Health video blogs (vlogs) allow individuals with chronic illnesses to share their stories, experiences, and knowledge with the general public. Furthermore, health vlogs help in creating a connection between the vlogger and the viewers. In this work, we present a qualitative study examining the various methods that health vloggers use to establish a connection with their viewers. We found that vloggers used genres to express specific messages to their viewers while using the uniqueness of video to establish a deeper connection with their viewers. Health vloggers also explicitly sought interaction with their viewers. Based on these results, we present design implications to help facilitate and build sustainable communities for vloggers. PMID:24634895

  14. Immunological reason for chronic ill health after infectious mononucleosis.

    PubMed Central

    Hamblin, T J; Hussain, J; Akbar, A N; Tang, Y C; Smith, J L; Jones, D B

    1983-01-01

    In a group of patients who suffered from chronic ill health after an attack of acute infectious mononucleosis a disorder of T cell regulation was found. By means of cytochemical reactions the staining pattern associated with T suppressor cells was found in a greater percentage and that associated with T helper cells in a smaller percentage than in normal subjects. In a few patients this finding was confirmed in a functional suppressor assay. The patients were unwell for at least a year but most later made a complete recovery, which was associated with return to normal of the lymphocyte subsets. PMID:6222781

  15. Physical Illness, Psychiatric Illness, and the Acceptability of Suicide.

    ERIC Educational Resources Information Center

    Deluty, Robert H.

    1989-01-01

    Assessed whether attitudes toward suicide vary as function of type of illness that precipitates suicide. College students (N=455) responded to scenarios of suicide victim. Evaluations of suicide were most favorable when it occurred in response to terminal physical illness; less favorable in response to chronic, non-terminal physical illness; and…

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

    PubMed

    Kowacs, Pedro André; Martins, Rodrigo Tomazini; Piovesan, Elcio Juliato; Pinto, Maria Cristina Araujo; Yoshinari, Natalino Hagime

    2013-07-01

    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. PMID:23857618

  17. Relationship between pain and chronic illness among seriously ill older adults: expanding role for palliative social work.

    PubMed

    Morrissey, Mary Beth; Viola, Deborah; Shi, Qiuhu

    2014-01-01

    Confronting the issue of pain among chronically ill older adults merits serious attention in light of mounting evidence that pain in this population is often undertreated or not treated at all (Institute of Medicine, 2011 ). The relationship between pain and chronic illness among adults age 50 and over was examined in this study through the use of longitudinal data from the University of Michigan Health and Retirement Study, sponsored by the National Institute on Aging and the Social Security Administration. Findings suggested positive associations between pain and chronic disease, pain and multimorbidity, as well as an inverse association between pain and education. Policy implications for workforce development and public health are many, and amplification of palliative social work roles to relieve pain and suffering among seriously ill older adults at all stages of the chronic illness trajectory is needed. PMID:24628140

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

    ERIC Educational Resources Information Center

    Chen, Yung-Chi; Fish, Marian C.

    2013-01-01

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

  19. Anatomical Brain Images Alone Can Accurately Diagnose Chronic Neuropsychiatric Illnesses

    PubMed Central

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

    2012-01-01

    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. Extensions of these

  20. High dose of buprenorphine in terminally ill patient with liver failure: efficacy and tolerability.

    PubMed

    Ciccozzi, Alessandra; Angeletti, Chiara; Baldascino, Giada; Petrucci, Emiliano; Bonetti, Cristina; De Santis, Stefania; Paladini, Antonella; Varrassi, Giustino; Marinangeli, Franco

    2012-01-01

    Pain in terminally ill patients with cancer can be often hard to manage, due to the unpredictable kinetics of drugs caused by progressive kidney and liver dysfunction. Plasma concentrations of active metabolites-also a cause of dangerous side effects--could be difficult to estimate. This case report holds the idea that buprenorphine, a partial agonist of m-receptors, even at high dosage, may be effective and safe to use in terminally ill patients with significant liver and kidney impairment. PMID:22941853

  1. Reflections of medical students on visiting chronically ill older patients in the home.

    PubMed

    Yuen, Jacqueline K; Breckman, Risa; Adelman, Ronald D; Capello, Carol F; LoFaso, Veronica; Reid, M Carrington

    2006-11-01

    The expanding number of Americans living with chronic illness necessitates educating future physicians about chronic illness care. Weill Cornell Medical College's Chronic Illness Care in the Home Setting Program (CIC-HSP), a mandatory part of the primary care clerkship, exposes medical students to persons with chronic illness via a half day of house calls with a geriatrics team. The investigators sought to qualitatively assess the effect of the CIC-HSP on medical students and recent medical graduates. Fifty-two prospective participants were approached, and 50 (96%) with varying training levels and time since completing the program were interviewed. Most respondents (63%) found that the home visits taught them important approaches to caring for the chronically ill, such as individualizing care to meet patients' individual needs and improving quality of life as a goal of care. Students remarked that the experience enhanced their empathy (18%) and sensitivity (20%) toward chronically ill patients and increased their appreciation for chronic illness care (35%). Many participants reported that patients were more empowered in the home (55%) and perceived greater rapport and warmth between the doctor and patient (57%) in the home (vs office) setting. The vast majority of recent medical graduates (84%) related that this educational exposure continued to positively influence their approach to patient care. A home visit experience with a geriatrics team can help foster medical students' understanding of the psychosocial and medical aspects of chronic illness, teach relevant approaches to patient care, and improve students' attitudes toward caring for the chronically ill. PMID:17087708

  2. Methamphetamine exposure and chronic illness in police officers

    PubMed Central

    Ross, Gerald H; Sternquist, Marie C

    2012-01-01

    Background: The medical literature reports health hazards for law enforcement personnel from repeated exposure to methamphetamine and related chemical compounds. Most effects appear transitory, but some Utah police officers with employment-related methamphetamine exposures developed chronic symptoms, some leading to disability. This report is of an uncontrolled retrospective medical chart evaluation of symptomatic officers treated with a sauna detoxification protocol designed to reduce the chronic symptoms and improve the quality of life. Methods: Sixty-nine officers consecutively entering the Utah Meth Cops Project were assessed before and after a treatment program involving gradual exercise, comprehensive nutritional support and physical sauna therapy. Evaluations included pre- and post-treatment scores of the Research and Development Corporation (RAND) 36-item Short Form Health Survey (SF-36) in comparison with RAND population norms, pre- and post-treatment symptom score intensities, neurotoxicity scores, Mini-Mental Status Examination, presenting symptom frequencies and a structured evaluation of treatment program safety. Results: Statistically significant health improvements were seen in the SF-36 evaluations, symptom scores and neurotoxicity scores. The detoxification protocol was well tolerated, with a 92.8% completion rate. Conclusions: This investigation strongly suggests that utilizing sauna and nutritional therapy may alleviate chronic symptoms appearing after chemical exposures associated with methamphetamine-related law enforcement activities. This report also has relevance to addressing the apparent ill effects of other complex chemical exposures. In view of the positive clinical outcomes in this group, broader investigation of this sauna-based treatment regimen appears warranted. PMID:22089658

  3. Economic Impact of Terminal Illness and the Willingness to Change It

    PubMed Central

    Emanuel, Natalia; Simon, Melissa Andrea; Burt, Michael; Joseph, Aneeja; Sreekumar, Nirmala; Kundu, Tapas; Khemka, Vivek; Biswas, Basudeb; Rajagopal, M.R.

    2010-01-01

    Abstract Objective To gather pilot data on the economic impact of terminal illness on families and on the feasibility of training caregivers as a method of stemming illness-related poverty. Design Exploratory, descriptive study involving semistructured interviews with patient and caregiver dyads. Setting Pallium India Palliative Care Clinic in Trivandrum, Kerala, India. Participants Eleven patient–caregiver dyads (22 individual participants) visiting Pallium India in 2008. Methods Trained interviewers conducted face-to-face interviews consisting of 114 questions with the patient and caregiver separately. Questions covered topics of economic impact of illness on household, family, and individual. Questions included if the illness had so impacted families that they needed to sell assets or significantly reduce work and/or schooling. Results All families reported that patients were obliged to give up work as a result of illness. In seven families, the caregiver also had to change work habits. All respondents stated illness had forced them to sell assets. Ten households reported that their children were obliged to miss school due to the illness. All respondents indicated they would use trained caregivers to help with the care burden if available. Nine respondents thought that use of trained caregivers would have reduced or prevented some of the household's illness-related change. Nine caregivers said they would be interested in becoming a trained caregiver. Conclusion These data indicate that a definitive study would be feasible and would reveal how much assistance caregiver training could lend to household socio-economic resilience. PMID:20712463

  4. Attitudes of Terminally Ill Patients toward Death and Dying in Nigeria

    ERIC Educational Resources Information Center

    Olokor, Christiana O.

    2011-01-01

    The purpose of this study was to analyze the attitudes of terminally ill patients toward death and dying. Four hospitals in Nigeria were randomly selected: University College Hospital, Ibadan; University of Benin Teaching Hospital, Benin City; the Lagos University Teaching Hospital, Lagos; and Igbinedion Specialist Hospital, Okada, Benin City.…

  5. Preparing Classroom Teachers for the Impending Death of a Student with Terminal Illness.

    ERIC Educational Resources Information Center

    Rice, Craig J.; Gourley, Junean Krajewski

    2003-01-01

    This article discusses students with terminal illnesses and the challenges teachers face in dealing with the issue of death. Classroom strategies for dealing with death are described and include using children's literature that explores death, using deaths of pets as teachable moments, and using children's films. (Contains references.) (CR)

  6. Storytelling by Adults Diagnosed with Terminal Illness: Narrative Identifying through Dialogical Research

    ERIC Educational Resources Information Center

    Sauer, Michael Paul

    2012-01-01

    The purpose of this dialogical qualitative research study was to gain insight into the process of storytelling with adults diagnosed with terminal illness as a way of making meaning of their experiences and lives. The study was informed by the conceptual frameworks of story, storytelling, and story listening which are grounded in the theory of…

  7. Ethical Guidelines for Counselors when Working with Clients with Terminal Illness Requesting Physician Aid in Dying

    ERIC Educational Resources Information Center

    Kurt, Layla J.; Piazza, Nick J.

    2012-01-01

    In 2005, the American Counseling Association (ACA) introduced a new ethical standard for counselors working with clients with terminal illness who are considering hastened death options. The authors' purpose is to inform counselors of the Death With Dignity Act and explore relevant ethical guidelines in the "ACA Code of Ethics" (ACA, 2005).

  8. A Comparison of Terminally Ill Persons at Various Time Periods to Death.

    ERIC Educational Resources Information Center

    Baugher, Robert J.; And Others

    1990-01-01

    Examined responses of 1,110 terminally ill persons with cancer at varying time periods prior to death. Disengagement and Objective Self-Awareness theories, which suggest that people nearing death would increase desire to separate from others, were not supported. Found few differences in responses of persons further from, or closer to, death.…

  9. Family Support, Age, and Emotional States of Terminally Ill Cancer Patients.

    ERIC Educational Resources Information Center

    Wu, Kitty K. Y.

    1991-01-01

    Explored emotional states of dying patients, age, and family support. Findings from 26 terminally ill female cancer patients revealed that younger patients expressed more bargaining and complaints than older patients who revealed more depression and acceptance. Patients with immediate family support expressed less depression and more fears than…

  10. [Opinions on the prevention and treatment of chronic critical illness].

    PubMed

    An, Youzhong

    2016-07-01

    Chronic critical illness (CCI) is an inevitable result of overpopulation and aging, as well as the development of medicine. The number of CCI patients will constantly increase and become an unaffordable economic burden for families, societies and countries. CCI could be prevented by multiple measures. Firstly, doctors must know about the pathophysiology and etiology of the disease. When providing organ function support for CCI patient, we have to know and treat the cause of the disease as early as possible. Secondly, we need to precisely monitor the insults caused by the disease and/or improper host response to the disease, evaluate the organ reserve function, and predict the outcomes and life quality after discharging from hospital. In addition, it is necessary to strengthen the humanity training of health care workers, publicize the correct thanatopsis in the whole society that every life is "born to die", and define the core role of medicine as "to comfort always". PMID:27452750

  11. Health Vlogs as Social Support for Chronic Illness Management

    PubMed Central

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

    2015-01-01

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

  12. Chronic hemodialysis for terminal renal failure.

    PubMed

    Shimizu, A G; Kaye, M; Innes, B J

    1966-02-12

    Ten terminal uremic patients seen over the period of one and one-half years have been kept alive by repeated hemodialysis using a modification of the Seattle system, carried out for the most part by nurses and technicians. All the patients had creatinine clearance values below 5 ml./min., and blood urea nitrogen values which ranged between 156 and 453 mg. % before beginning the first dialysis.Selection was based on their ability to co-operate with and to tolerate the regimen. Nine patients were fully rehabilitated.The major complications were those related to shunt-site infections, including septicemia, bacterial endocarditis, septic arthritis, septic pulmonary embolism and mycotic aneurysm.Nevertheless, all patients except one were rehabilitated and resumed their full-time occupations and have continued to lead happy and useful lives. PMID:5903168

  13. [Function and structure of families with chronically ill children].

    PubMed

    Hauser, E; Freilinger, M; Skyllouriotis, M; Zacherl, S; Wimmer, M; Balzar, E; Schubert, M T

    1996-11-01

    In modern medicine especially the sick child often points out the limits of the psychosocial potentialities. This project investigates the function, structure, coping mechanisms, power and weakness of families with chronically ill children. We investigated 28 children from the nephrological ward and 55 patients from the cardiological department and also their families with the FAM III and compared the obtained T-scores with the results of the control-group (76 families, t-test, analysis of variance). Families with patients after renal transplantation (NTX) pointed out significant worse T-scores than the group with patients on CAPD or with preterminal renal insufficiency and CG (p < 0.05). Within the cardiological groups the differences were not statistically significant, on the other hand the group with patients before heart-operation and the group with patients after palliative heart-operation had better T-scores than the CT (p < 0.05). These results demonstrate that families with children suffering from a chronic renal or heart disease mobilize substantial resources to cope with these problems. By contrast the results of the families with patients after NTX or successful heart surgery are significant worse than the control-group and the other investigated patients groups. Our results come to the conclusion that especially after successful NTX or heart-surgery a psychosocial care of these families is necessary. PMID:9036411

  14. Emotionally Focused Interventions for Couples with Chronically Ill Children: A 2-Year Follow-Up

    ERIC Educational Resources Information Center

    Cloutier, Paula F.; Manion, Ian G.; Walker, Jan Gordon; Johnson, Susan M.

    2002-01-01

    Couples with chronically ill children are particularly at risk for experiencing marital distress. The study presented here is a 2-year follow-up of a randomized control trial that assessed the efficacy of Emotionally Focused Therapy (EFT) in decreasing marital distress in a sample of couples with a chronically ill child. Thirteen couples with…

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

    ERIC Educational Resources Information Center

    Ashton, Jean

    2004-01-01

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

  16. Identifying the Links between Chronic Illness and Depression: Cognitive-Behavioral Mediators.

    ERIC Educational Resources Information Center

    Turk, Dennis C.; And Others

    All chronic illnesses represent assaults on multiple areas of functioning, not just the body. To examine the association between painful chronic illnesses and depression from a cognitive-behavioral perspective, 100 patients of the Pain Management Program at the West Haven, Connecticut Veterans Administration Hospital (78% males) completed a…

  17. Outcomes of On-Line Financial Education for Chronically Ill Rural Women

    ERIC Educational Resources Information Center

    Haynes, Deborah C.; Haynes, George W.; Weinert, Clarann

    2011-01-01

    This research was part of a larger longitudinal study of chronically ill rural women to determine if computer technology could be effective in allowing the women to take control of their own well-being, including finances. The current study examined whether chronically ill rural women can effectively use on-line personal finance educational…

  18. Chronic illness and wellbeing: using nursing practice to foster resillence as resistance.

    PubMed

    Edward, Karen-leigh

    Chronic non-communicable diseases such as heart disease, cancer and diabetes are the biggest killers worldwide. Chronic conditions include heart disease, stroke, diabetes, cancer, chronic respiratory disease and are often comorbid with mental illness. Over 60 years ago, the British Medical Journal reported an association between mental illness and poor physical health (Philips, 1934). Comorbid mental illness and physical illness incrementally worsens health compared with mental illness alone or any of the chronic non-communicable diseases such as cardiovascular diseases, cancers, chronic respiratory diseases and diabetes alone. This paper aims to open the dialogue related to optimising, through nursing intervention, a patient's self-righting and self-management factors in the context of comorbid chronic conditions such as heart disease, stroke, diabetes, cancer, chronic respiratory disease, with mental illness. Self-management and self-righting capabilities are now being considered integral to reducing the negative impact of chronic conditions such as mental illness. Personal characteristics associated with resilience comprise optimism, an active or adaptable coping style and the ability to elicit social support. Existing resilience factors can be assessed for by nurses and optimised through interventions when patients with chronic conditions are in care. Representing over 70% of the global health workforce, nurses are well positioned to enact such practice enhancements to facilitate better outcomes for patients. PMID:24261088

  19. Multimorbidity in a Mexican Community: Secondary Analysis of Chronic Illness and Depression Outcomes

    PubMed Central

    O'Connor, Kathleen; Vizcaino, Maricarmen; Ibarra, Jorge M.; Balcazar, Hector; Perez, Eduardo; Flores, Luis; Anders, Robert L.

    2015-01-01

    The aims of this article are: 1) to examine the associations between health provider-diagnosed depression and multimorbidity, the condition of suffering from more than two chronic illnesses; 2) to assess the unique contribution of chronic illness in the prediction of depression; and 3) to suggest practice changes that would address risk of depression among individuals with chronic illnesses. Data collected in a cross-sectional community health study among adult Mexicans (n= 274) living in a low income neighborhood (colonia) in Ciudad Juárez, Chihuahua, Mexico, were examined. We tested the hypotheses that individuals who reported suffering chronic illnesses would also report higher rates of depression than healthy individuals; and having that two or more chronic illnesses further increased the risk of depression. PMID:26640817

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

    PubMed Central

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

    2015-01-01

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

  1. Intermittent Hemodialysis in Terminal Chronic Renal Failure

    PubMed Central

    McLeod, L. E.; Mandin, H.; Davidman, M.; Ulan, R.; Lakey, W. H.

    1966-01-01

    Seven patients with chronic renal failure underwent intermittent hemodialysis for five to 37 months (111 patient-months on a twice-weekly basis) employing arteriovenous Teflon-Silastic cannulas and the modified two-layer Kiil hemodialyzer. A single-pass 37° C. dialysate system has been used. One patient died of an indirectly related cause. All other patients have been successfully rehabilitated and now carry on normal activity of moderate sedentary type. Complications included recurring infection and clotting of arteriovenous cannulas. Hypertension and anemia were common complications requiring careful control. Peripheral neuropathy was noted in five of the seven patients but was of clinical significance in only one patient. Metastatic calcification, osteoporosis and urolithiasis also occurred in this patient. Peptic ulcers with hemorrhage developed in two patients. The degree of rehabilitation and psychological adjustment achieved by this group of patients strongly indicates the need for expansion of dialysis facilities and further research into the medical and economic aspects of dialysis. ImagesFig. 1Fig. 2Fig. 3Fig. 4 PMID:5903169

  2. A Role for Homeostatic Drive in the Perpetuation of Complex Chronic Illness: Gulf War Illness and Chronic Fatigue Syndrome

    PubMed Central

    Craddock, Travis J. A.; Fritsch, Paul; Rice, Mark A.; del Rosario, Ryan M.; Miller, Diane B.; Fletcher, Mary Ann; Klimas, Nancy G.; Broderick, Gordon

    2014-01-01

    A key component in the body's stress response, the hypothalamic-pituitary-adrenal (HPA) axis orchestrates changes across a broad range of major biological systems. Its dysfunction has been associated with numerous chronic diseases including Gulf War Illness (GWI) and chronic fatigue syndrome (CFS). Though tightly coupled with other components of endocrine and immune function, few models of HPA function account for these interactions. Here we extend conventional models of HPA function by including feed-forward and feedback interaction with sex hormone regulation and immune response. We use this multi-axis model to explore the role of homeostatic regulation in perpetuating chronic conditions, specifically GWI and CFS. An important obstacle in building these models across regulatory systems remains the scarcity of detailed human in vivo kinetic data as its collection can present significant health risks to subjects. We circumvented this using a discrete logic representation based solely on literature of physiological and biochemical connectivity to provide a qualitative description of system behavior. This connectivity model linked molecular variables across the HPA axis, hypothalamic-pituitary-gonadal (HPG) axis in men and women, as well as a simple immune network. Inclusion of these interactions produced multiple alternate homeostatic states and sexually dimorphic responses. Experimental data for endocrine-immune markers measured in male GWI subjects showed the greatest alignment with predictions of a naturally occurring alternate steady state presenting with hypercortisolism, low testosterone and a shift towards a Th1 immune response. In female CFS subjects, expression of these markers aligned with an alternate homeostatic state displaying hypocortisolism, high estradiol, and a shift towards an anti-inflammatory Th2 activation. These results support a role for homeostatic drive in perpetuating dysfunctional cortisol levels through persistent interaction with the

  3. The pre-travel medical evaluation: the traveler with chronic illness and the geriatric traveler.

    PubMed Central

    Patterson, J. E.

    1992-01-01

    The pre-travel medical evaluation of elderly patients and patients with chronic illness requires special assessment and advice. Screening and special precautions are reviewed for traveling patients with respiratory disease, cardiac disease, sinusitis, diabetes mellitus, HIV infection, and other chronic medical conditions. Current guidelines for empiric therapy and prophylaxis of travelers' diarrhea are reviewed, with emphasis on concerns in geriatric or chronically ill travelers. Special considerations such as potential drug-drug interactions and insurance coverage are also discussed. PMID:1290273

  4. Intentions to work during terminal illness: an exploratory study of antecedent conditions.

    PubMed

    Westaby, James D; Versenyi, Andrea; Hausmann, Robert C

    2005-11-01

    Facing a terminal illness is an unimaginably difficult experience, yet many individuals intend to work despite their prognosis. However, research has not systematically examined the potential antecedents underlying such intentions. Using behavioral intention theory as an underlying framework, this study hypothesized that reasons for working (intrinsic and extrinsic), the will to live, disability severity, accessibility of travel, and age would predict intentions to work during terminal illness. A representative sample of medically diagnosed amyotrophic lateral sclerosis (a.k.a. Lou Gehrig's disease) patients with a mean life expectancy of approximately 3 years participated (mean age=57.8 years). Controlling for length of diagnosis, employment status, and demographic variables, results indicated that intrinsic reasons were particularly strong predictors of intentions, followed by age, disability severity, and accessibility of travel. Exploratory findings also indicated that behavioral intentions were positively related to future employment status, consistent with past theory. ((c) 2005 APA, all rights reserved). PMID:16316283

  5. [Cancer Notification by Hospital Doctors for Terminally-Ill Cancer Patients Referred to Visiting Physician].

    PubMed

    Ichiba, Tamotsu

    2015-12-01

    Notification of cancer is essential for medical treatment based on patient preference. I studied 45 terminally-ill cancer patients referred to my clinic from January 2012 to December 2013. The data of each patient was retrospectively collected from their medical record. Cancer notification was not done in 4 cases(9%). Notification of cancer metastasis or terminally ill status was not done in 9 cases(20%). The reasons for no announcement of cancer included the family's concern regarding depriving the patient or hope or hospital doctor policy. In home-care situations, cancer notification might be difficult because home-care physicians take over patient care from hospital doctors who may not always inform the patient regarding their cancer status. PMID:26809411

  6. Ethical considerations in the management of analgesia in terminally ill pediatric patients.

    PubMed

    Weidner, Norbert J; Plantz, Diane M

    2014-11-01

    Research has demonstrated the significant symptom burden present at the end of life of terminally ill children. Medicine has always viewed the relief of pain and suffering as a fundamental human right and a moral and ethical obligation. At the end of life, pain and dyspnea are symptoms commonly experienced by both adults and children. Opioids are the mainstay in treating the suffering associated with pain and dyspnea; however, there exist several barriers to the use of opioids. We describe a case in which parents prevent a young patient from receiving adequate pain management during the course of a terminal illness. We discuss the importance of recognizing the barriers to opioid use and the ethical ramifications of failing to find common ground with the family. We highlight parental responsibilities and limitations of parental authority in decision making for their child. PMID:24681109

  7. Abandonment of terminally ill patients in the Byzantine era. An ancient tradition?

    PubMed Central

    Lascaratos, J; Poulakou-Rebelakou, E; Marketos, S

    1999-01-01

    Our research on the texts of the Byzantine historians and chroniclers revealed an apparently curious phenomenon, namely, the abandonment of terminally ill emperors by their physicians when the latter realised that they could not offer any further treatment. This attitude tallies with the mentality of the ancient Greek physicians, who even in Hippocratic times thought the treatment and care of the terminally ill to be a challenge to nature and hubris to the gods. Nevertheless, it is a very curious attitude in the light of the concepts of the Christian Byzantine physicians who, according to the doctrines of the Christian religion, should have been imbued with the spirit of philanthropy and love for their fellowmen. The meticulous analysis of three examples of abandonment of Byzantine emperors, and especially that of Alexius I Comnenus, by their physicians reveals that this custom, following ancient pagan ethics, in those times took on a ritualised form without any significant or real content. PMID:10390682

  8. [Handicapped and chronically ill patients: special effect on the affected].

    PubMed

    Rinn, F

    1997-05-01

    The Bonn coalition government's determination to reduce incidental wage costs, to be realized by way of benefit cutbacks in the social insurance systems and social assistance domain as well as increasing the burdens on insurers through higher retention and cost sharing levels, has particularly serious implications for people with disabilities and chronic illness. Apart from facing numerous direct changes for the worse, they in addition are affected by restrictive regulations applicable generally, inter alia in the labour market or the health and pension insurance schemes; adverse effects, hence, accumulate and heighten out of proportion. The implications of the Bonn austerity legislation are dealt with in the present contribution on the examples of the health-care reform acts as well as the changes to the federal social assistance act, in as far as they affect the provision and care of disabled individuals in residential or community settings. Also dealt with are various problems arising due to the integration assistance/long-term care insurance overlap. PMID:9324712

  9. The Relationship Between Chronic Illness and Depression in a Community of Urban Black Elderly Persons

    PubMed Central

    Bazargan, Mohsen; Hamm-Baugh, Verneda P.

    2016-01-01

    The relationship between depression and chronic illness among the elderly population has often been investigated. However, the impact of individual chronic illnesses while controlling for the impact of various psychosocial factors is still not well understood. This is particularly true among Black elderly persons. In a cross-sectional study, the impact of selected chronic illnesses and psychosocial variables on depression was investigated among 1,022 Black urban elderly persons who reside in New Orleans, Louisiana. Depression was greatest among those with more financial difficulties, more stressful life events, lower self-perceptions, less support from friends, and less instrumental support. Multiple regression analysis determined that depression was greatest among elderly persons who reported kidney, vision, and/or circulation problems. These findings suggest that elderly persons may perceive these three illnesses as more debilitating than other chronic illnesses. PMID:7757840

  10. On withholding nutrition and hydration in the terminally ill: has palliative medicine gone too far?

    PubMed Central

    Craig, G M

    1994-01-01

    This paper explores ethical issues relating to the management of patients who are terminally ill and unable to maintain their own nutrition and hydration. A policy of sedation without hydration or nutrition is used in palliative medicine under certain circumstances. The author argues that this policy is dangerous, medically, ethically and legally, and can be disturbing for relatives. The role of the family in management is discussed. This issue requires wide debate by the public and the profession. PMID:7527863

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

    PubMed Central

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

    2012-01-01

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

  12. The Use of Self-Care Agency To Meet the Need for Solitude and Social Interaction by Chronically Ill Individuals.

    ERIC Educational Resources Information Center

    Burns, Margaret A.

    This study examined the effect of chronic illness on the individual's ability to meet his or her need for solitude and for social interaction by exploring how chronically ill individuals used their own ability (self-care agency) to meet these needs. Subjects were 90 chronically ill older persons, 30 of whom were living at home, 30 who lived in a…

  13. Sexual dysfunction and chronic illness: the role of flexibility in coping.

    PubMed

    Barsky, Jennifer L; Friedman, Michael A; Rosen, Raymond C

    2006-01-01

    Sexual dysfunction is common among individuals with chronic illnesses and is associated with distress and reduced quality of life. Because of the long-term, often irreversible nature of sexual dysfunction in chronic illness and limitations of pharmacological treatments, there is a need to understand cognitive and behavioral coping processes in this population. We present a model of coping with sexual dysfunction that focuses on the construct of flexibility, including the definition of sexual functioning and its centrality to overall self-concept. We describe how this model can be applied in a comprehensive approach to treating sexual dysfunction in individuals with chronic illnesses. PMID:16809251

  14. Integrative Review on the Use of Newman Praxis Relationship in Chronic Illness.

    PubMed

    Rosa, Katherine C

    2016-07-01

    Over the past 20 years, many Newman scholars across the globe have investigated health as expanding consciousness with persons living with chronic illness. This integrative review examines the use of the concept, relationship, and its seven dimensions-health, caring, consciousness, mutual process, patterning, presence, and meaning with persons with chronic illness when engaged in health as expanding consciousness praxis. A regular and sustained pattern of publication of studies that included the seven dimensions was found. Relationships among the dimensions of a Newman praxis relationship, chronic illness, and health as expanding consciousness are discussed. PMID:27271134

  15. Actions of acute and chronic ethanol on presynaptic terminals.

    PubMed

    Roberto, Marisa; Treistman, Steven N; Pietrzykowski, Andrzej Z; Weiner, Jeff; Galindo, Rafael; Mameli, Manuel; Valenzuela, Fernando; Zhu, Ping Jun; Lovinger, David; Zhang, Tao A; Hendricson, Adam H; Morrisett, Richard; Siggins, George Robert

    2006-02-01

    This article presents the proceedings of a symposium entitled "The Tipsy Terminal: Presynaptic Effects of Ethanol" (held at the annual meeting of the Research Society on Alcoholism, in Santa Barbara, CA, June 27, 2005). The objective of this symposium was to focus on a cellular site of ethanol action underrepresented in the alcohol literature, but quickly becoming a "hot" topic. The chairs of the session were Marisa Roberto and George Robert Siggins. Our speakers were chosen on the basis of the diverse electrophysiological and other methods used to discern the effects of acute and chronic ethanol on presynaptic terminals and on the basis of significant insights that their data provide for understanding ethanol actions on neurons in general, as mechanisms underlying problematic behavioral effects of alcohol. The 5 presenters drew from their recent studies examining the effects of acute and chronic ethanol using a range of sophisticated methods from electrophysiological analysis of paired-pulse facilitation and spontaneous and miniature synaptic currents (Drs. Weiner, Valenzuela, Zhu, and Morrisett), to direct recording of ion channel activity and peptide release from acutely isolated synaptic terminals (Dr. Treistman), to direct microscopic observation of vesicular release (Dr. Morrisett). They showed that ethanol administration could both increase and decrease the probability of release of different transmitters from synaptic terminals. The effects of ethanol on synaptic terminals could often be correlated with important behavioral or developmental actions of alcohol. These and other novel findings suggest that future analyses of synaptic effects of ethanol should attempt to ascertain, in multiple brain regions, the role of presynaptic terminals, relevant presynaptic receptors and signal transduction linkages, exocytotic mechanisms, and their involvement in alcohol's behavioral actions. Such studies could lead to new treatment strategies for alcohol intoxication

  16. Blood Biomarkers of Chronic Inflammation in Gulf War Illness

    PubMed Central

    Johnson, Gerhard J.; Slater, Billie C. S.; Leis, Linda A.; Rector, Thomas S.; Bach, Ronald R.

    2016-01-01

    Background 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. Objective This study was designed to determine if blood biomarkers could provide objective criteria to assist diagnosis of GWI. Design 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. Results 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%. Significance 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. PMID:27352030

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

    PubMed

    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. PMID:1487812

  18. Fathers struggling for relevance in the care of their terminally ill child.

    PubMed

    Laws, Tom

    Children with terminal illness receive substantial amounts of care from their parents within their home, a palliative care facility or general hospital. Whilst there is a long history of research exploring child and family experiences and coping styles within these settings, the focus has not been on fathers' participation in care-giving. This phenomenon can be explained by traditional sex-role socialisations whereby men are ostensibly conditioned as breadwinners and mothers remain embedded as the primary carers for children, particularly when illness arises. Nevertheless, nurses report that men do provide direct care-giving or seek to be more involved in caring for their child. This literature review offers opportunities for health professionals to reflect on the significance of gender in parenting the terminally ill child and to develop empathy for men experiencing difficulties in their role as care-givers. As there is little literature available on this topic, this paper portrays men's experiences and importantly the barriers they encounter in meeting their desire to care. The approach provides a suitable basis for developing a research agenda to promote competencies and relevance for fathers in their role as care-giver. PMID:15729796

  19. Including Young Children With "New" Chronic Illnesses in an Early Childhood Education Setting.

    ERIC Educational Resources Information Center

    Fauvre, Mary

    1988-01-01

    Presents suggestions for successfully including young children with "new" life-threatening, chronic illnesses -- various types of cancer, heart, liver, and kidney diseases -- in early childhood education classes. (BB)

  20. The Constant Shadow: Reflections on the Life of the Chronically Ill Child.

    ERIC Educational Resources Information Center

    Massie, Robert K., Jr.

    1984-01-01

    This article provides insight, through the author's personal experience, into the life of the chronically ill child. Problems encountered by these children and their families due to inadequacies in the educational system, medical profession, and insurance companies are discussed. (DF)

  1. 77 FR 64597 - Proposed Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-10-22

    ... gastrointestinal illness in Persian Gulf Veterans was caused by the presence of bacteria in the intestines and whether eradication of these bacteria reduces symptoms of chronic diarrhea. Affected Public:...

  2. 78 FR 6404 - Agency Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-01-30

    ... gastrointestinal illness in Persian Gulf Veterans was caused by ] the presence of bacteria in the intestines and whether eradication of these bacteria reduces symptoms of chronic diarrhea. An agency may not conduct...

  3. Families of Chronically Mentally Ill Patients: Their Structure, Coping Resources, and Tolerance for Deviant Behavior.

    ERIC Educational Resources Information Center

    Axelrod, Joan; And Others

    1994-01-01

    Interviewed 105 families of chronically ill psychiatric patients to explore their attitudes toward caring for mentally ill member at home. Found significant relationship between respondent's belief in his/her ability to manage patient behavior and willingness to accept patient in home. Found no significant relationships between family resources,…

  4. Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases

    ERIC Educational Resources Information Center

    Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris

    2016-01-01

    Introduction: This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies used by patients, and some health information behaviour practices may be associated with better coping and more positive perception of…

  5. The College Experience for Students with Chronic Illness: Implications for Academic Advising

    ERIC Educational Resources Information Center

    Houman, Katie M.; Stapley, Janice C.

    2013-01-01

    A purposive sample (2 males, 3 females) of students (aged 18-29 years) with chronic illness completed standardized measures and a semi-structured interview. Content analysis of the interview data revealed two themes: stress exacerbating symptoms of illness and a desire for a support group on campus. Viewed through the theory of emerging adulthood,…

  6. A Therapeutic Approach for Treating Chronic Illness and Disability among College Students

    ERIC Educational Resources Information Center

    Haemmelmann, Katie L.; McClain, Mary-Catherine

    2013-01-01

    Research in chronic illness and disability (CID) in college students has demonstrated that students with disabilities encounter more difficulties psychosocially than their nondisabled counterparts. Subsequently, these difficulties impact the ability of these students to successfully adapt. Using the illness intrusiveness model in combination with…

  7. A Dyadic Approach: Applying a Developmental-Conceptual Model to Couples Coping with Chronic Illness

    ERIC Educational Resources Information Center

    Checton, Maria G.; Magsamen-Conrad, Kate; Venetis, Maria K.; Greene, Kathryn

    2015-01-01

    The purpose of the present study was to apply Berg and Upchurch's developmental-conceptual model toward a better understanding of how couples cope with chronic illness. Specifically, a model was hypothesized in which proximal factors (relational quality), dyadic appraisal (illness interference), and dyadic coping (partner support) influence…

  8. Profiles of Chronic Illness Knowledge in a Community Sample of American Adults

    ERIC Educational Resources Information Center

    Jackson, Todd

    2009-01-01

    The author identified profiles of chronic illness knowledge (i.e., heart disease, cancer, diabetes) in a community sample of American adults and examined the effect of sociodemographic influences on relations of illness knowledge to health practices and well-being. Participants were 181 women and 120 men who completed measures of illness…

  9. [Biography-oriented diagnostics in counselling of patients with chronic illness].

    PubMed

    Darmann-Finck, Ingrid; Sahm, Martina

    2006-10-01

    The article examines two concepts of counselling of patients by nurses that are popular in the German-speaking area with regard to their underlying scientific standpoint and ideals and their implications on counselling-process and -result. The authors determine that both concepts disregard the biographic construction processes which are so important for coping with and tackling chronic illness. The article concludes with a discussion of prospective use of biographic diagnostics in counselling of patients with chronic illness. PMID:17051514

  10. Palliative care for the management of chronic illness: a systematic review study protocol

    PubMed Central

    Effiong, Andem I

    2012-01-01

    Introduction Chronic illnesses are marked by fluctuations and variations over time. Individuals with chronic illness experience pain and other symptoms that are not always adequately managed. Their caregivers often have to deal with enormous burden as the illness progresses. Palliative care can serve as an intervention to manage chronic illness, not just at the end of life but also in the early phases of illness. Methods and analysis Randomised and non-randomised studies will be included in the systematic review. The focus will be on non-cancer chronic illness. Sources of data will be from PubMed and other databases and will include the reference list of studies included in the systematic review. The primary outcome will be to assess the efficacy of palliative care on chronic illness. Secondary outcomes will include health-related quality of life, care giver burden, quality of care and cost-effectiveness of interventions. The study population will consist of patients aged 18 years or over. Ethics and dissemination For purposes of privacy and confidentiality, the systematic review will be limited to studies with de-identified data. The systematic review will be published in a peer-reviewed journal. It will also be disseminated electronically and in print. Brief reports of review findings will be disseminated directly to appropriate audiences via email and other modes of communication. Updates of the review will be conducted to inform and guide healthcare practice and policy. Trial registration number PROSPEROCRD42011001794. PMID:22614173

  11. Meaninglessness in terminally ill cancer patients: a validation study and nurse education intervention trial.

    PubMed

    Morita, Tatsuya; Murata, Hisayuki; Hirai, Kei; Tamura, Keiko; Kataoka, Jun; Ohnishi, Hideki; Akizuki, Nobuya; Kurihara, Yukie; Akechi, Tatsuo; Uchitomi, Yosuke

    2007-08-01

    Recent empirical studies revealed that fostering patients' perception of meaning in their life is an essential task for palliative care clinicians. However, few studies have reported the effects of training programs for nurses specifically aimed at improving skills to relieve the meaninglessness of terminally ill cancer patients, and we have had no specific measurement instruments. The primary aims of this study were 1) to validate measurement tools to quantify nurses' self-reported practice and attitudes toward caring for terminally ill cancer patients feeling meaninglessness and 2) to explore the effects of the five-hour educational workshop focusing on meaninglessness on nurses' self-reported practice, attitudes toward caring for such patients, confidence, burnout, death anxiety, and meaning of life. A quasi-experimental pre-post questionnaire survey was performed on 147 nurses. The questionnaire was distributed before the intervention workshop and one and six months after. The workshop consisted of lecture, role-play, and the exercise of assessment and care planning based on two vignette verbatim records. First, using the first questionnaire sample and an additional sample of 20 nurses for the test-retest examination, we validated a six-item Self-Reported Practice scale, and an eight-item Attitudes Toward Caring for Patients Feeling Meaninglessness scale with three subscales (Willingness to Help, Positive Appraisal, and Helplessness). The nurses also completed a scale to assess confidence in caring for terminally ill patients with meaninglessness, the Maslach Burnout Inventory, the Death Attitude Inventory, the Frommelt Attitudes Toward Care of the Dying scale, the Self-Reported Practice Score in General Communication, and the three pain-related items from the Palliative Care Quiz for Nursing. For the Self-Reported Practice scale and the subscales of the Attitudes Toward Caring for Patients Feeling Meaninglessness scale, the Cronbach's alpha coefficients were 0

  12. Preference for place-of-death among terminally ill cancer patients in Denmark.

    PubMed

    Neergaard, Mette Asbjoern; Jensen, Anders Bonde; Sondergaard, Jens; Sokolowski, Ineta; Olesen, Frede; Vedsted, Peter

    2011-12-01

    Achieving home death is often seen as an important endpoint in palliative care, but no studies of the preferred place-of-death have yet been conducted in Scandinavia. Furthermore, we do not know if professionals' report on deceased patients' preference of place-of-death is a valid information. The aim of this study was to describe where terminally ill Danish cancer patients prefer to die and to determine if their preference changed during the palliative period, as reported retrospectively by bereaved relatives, general practitioners (GPs) and community nurses (CNs) and to assess the agreement of their accounts. The study was a population-based, cross-sectional combined register and questionnaire study in Aarhus County, Denmark. The population comprised 599 deceased adult cancer patients who had died from 1 March to 30 November 2006 and were identified through merging of health registers. Relatives returned 198 questionnaires about patients' preferred place-of-death, GPs 333 and CNs 201. The study showed that most terminally ill cancer patients preferred home death (up to 80.7%). The reported preference for home death weakened as death approached (down to 64.4%). A better congruence was seen between relatives' and GPs' accounts of preference for place of death at the end of the palliative period (κ 0.71) than between relatives' and CNs' accounts (κ 0.37). In conclusion, bereaved relatives (and GPs and CNs) report retrospectively that most terminally ill cancer patients wish to die at home. The preference weakened significantly as death approached. The agreement between relatives' and GPs' accounts on patients' preferences at the end of the palliative period was 'substantial', whereas the agreement between relatives' and CNs' accounts at the same time was significantly less outspoken. This indicates that CNs may be facing a problem in assessing their patients' wishes retrospectively. PMID:21362004

  13. Should Health Care Providers Uphold the DNR of a Terminally Ill Patient Who Attempts Suicide?

    PubMed

    Campo-Engelstein, Lisa; Jankowski, Jane; Mullen, Marcy

    2016-06-01

    An individual's right to refuse life-sustaining treatment is a fundamental expression of patient autonomy; however, supporting this right poses ethical dilemmas for healthcare providers when the patient has attempted suicide. Emergency physicians encounter patients who have attempted suicide and are likely among the first medical providers to face the dilemma of honoring the patient's DNR or intervening to reverse the effects of potentially fatal actions. We illustrate this issue by introducing a case example in which the DNR of a terminally ill woman was not honored because the cause of her cardiac arrest was suicide. We argue that although a terminal diagnosis should change the way health care providers respond to a suicide attempt, many of the theoretical underpinnings for how one should treat suicide attempts-especially the criterion of external reasonability, that is the action to withhold or withdraw life-sustaining measures is reasonable independent of the precipitating event-are common to all situations (Brown et al. in Am J Bioeth 13(3):3-12, 2013). The presumption that patients who attempt suicide lack capacity due to acute mental illness is flawed because it fails to account for a competent individual's reasonable preference to not be forced to live in an unbearable, terminal condition. In states without legislation allowing physician aid in dying, patients and providers must grapple with these limitations on a case-by-case basis. In cases where the patient has a limited life expectancy and there is not concern for psychiatric illness as the primary cause of the suicidal action, we argue that the negative right to refuse life-sustaining treatment should prevail. PMID:26223360

  14. The Relationship between Age and Illness Duration in Chronic Fatigue Syndrome.

    PubMed

    Kidd, Elizabeth; Brown, Abigail; McManimen, Stephanie; Jason, Leonard A; Newton, Julia L; Strand, Elin Bolle

    2016-01-01

    Chronic fatigue syndrome (CFS) is a debilitating illness, but it is unclear if patient age and illness duration might affect symptoms and functioning of patients. In the current study, participants were categorized into four groups based upon age (under or over age 55) and illness duration (more or less than 10 years). The groups were compared on functioning and symptoms. Findings indicated that those who were older with a longer illness duration had significantly higher levels of mental health functioning than those who were younger with a shorter or longer illness duration and the older group with a shorter illness duration. The results suggest that older patients with an illness duration of over 10 years have significantly higher levels of mental health functioning than the three other groups. For symptoms, the younger/longer illness duration group had significantly worse immune and autonomic domains than the older/longer illness group. In addition, the younger patients with a longer illness duration displayed greater autonomic and immune symptoms in comparison to the older group with a longer illness duration. These findings suggest that both age and illness duration need to be considered when trying to understand the influence of these factors on patients. PMID:27110826

  15. The Relationship between Age and Illness Duration in Chronic Fatigue Syndrome

    PubMed Central

    Kidd, Elizabeth; Brown, Abigail; McManimen, Stephanie; Jason, Leonard A.; Newton, Julia L.; Strand, Elin Bolle

    2016-01-01

    Chronic fatigue syndrome (CFS) is a debilitating illness, but it is unclear if patient age and illness duration might affect symptoms and functioning of patients. In the current study, participants were categorized into four groups based upon age (under or over age 55) and illness duration (more or less than 10 years). The groups were compared on functioning and symptoms. Findings indicated that those who were older with a longer illness duration had significantly higher levels of mental health functioning than those who were younger with a shorter or longer illness duration and the older group with a shorter illness duration. The results suggest that older patients with an illness duration of over 10 years have significantly higher levels of mental health functioning than the three other groups. For symptoms, the younger/longer illness duration group had significantly worse immune and autonomic domains than the older/longer illness group. In addition, the younger patients with a longer illness duration displayed greater autonomic and immune symptoms in comparison to the older group with a longer illness duration. These findings suggest that both age and illness duration need to be considered when trying to understand the influence of these factors on patients. PMID:27110826

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

    ERIC Educational Resources Information Center

    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 one hundred…

  17. Intimacy needs and chronic illness: strategies for sexual counseling and self-management.

    PubMed

    Steinke, Elaine E

    2005-05-01

    Individuals experiencing a chronic illness have many needs and concerns. One area frequently overlooked is that of intimacy. Those experiencing cardiovascular illnesses have concerns about the strain of sexual activity on their heart. Individuals with lung diseases may perceive that sexual activity is no longer possible because of breathing difficulties. Accurate information and strategies for self-management are needed to address the intimacy needs and concerns of these individuals. The purpose of this article is to identify intimacy needs and strategies for sexual counseling for individuals with cardiovascular illnesses such as myocardial infarction, heart failure, implantable defibrillators, hypertension, and for chronic lung problems. PMID:15916202

  18. A review of factors associated with mental health in siblings of children with chronic illness.

    PubMed

    Incledon, Emily; Williams, Lauren; Hazell, Trevor; Heard, Todd R; Flowers, Alexandra; Hiscock, Harriet

    2015-06-01

    This article reviews the literature on modifiable factors associated with mental health in siblings of children with chronic illness. Three clinical databases were searched. A total of 17 studies met the inclusion criteria. Several key themes emerged from the review. Better sibling mental health was associated with camp attendance, perceived parent/peer support, illness education and enhancing control through cognitive coping strategies and routine. Parental and sibling psychoeducation interventions and social support may enhance children's mental health when their sibling has a chronic illness. PMID:24270987

  19. Living with a chronic illness - reaching out to others

    MedlinePlus

    ... on volunteers. For example, if you have cancer, you may be able to volunteer at the American Cancer Society. Find out if there are talks or classes about your illness in your area. Some hospitals ...

  20. Comorbidity Factors and Brain Mechanisms Linking Chronic Stress and Systemic Illness

    PubMed Central

    Duric, Vanja; Clayton, Sarah; Leong, Mai Lan; Yuan, Li-Lian

    2016-01-01

    Neuropsychiatric symptoms and mental illness are commonly present in patients with chronic systemic diseases. Mood disorders, such as depression, are present in up to 50% of these patients, resulting in impaired physical recovery and more intricate treatment regimen. Stress associated with both physical and emotional aspects of systemic illness is thought to elicit detrimental effects to initiate comorbid mental disorders. However, clinical reports also indicate that the relationship between systemic and psychiatric illnesses is bidirectional, further increasing the complexity of the underlying pathophysiological processes. In this review, we discuss the recent evidence linking chronic stress and systemic illness, such as activation of the immune response system and release of common proinflammatory mediators. Altogether, discovery of new targets is needed for development of better treatments for stress-related psychiatric illnesses as well as improvement of mental health aspects of different systemic diseases. PMID:26977323

  1. Creating the final conversations scale: a measure of end-of-life relational communication with terminally ill individuals.

    PubMed

    Generous, Mark Alan; Keeley, Maureen P

    2014-01-01

    Final conversations (FCs) are defined as the communicative interactions, both verbal and nonverbal, that occur between terminally ill patients and relational partners. In this study, the "Final Conversations Scale" was developed and tested. A total of 152 participants that had engaged in final conversations with individuals that were terminally ill completed the newly developed instrument. Factor analysis produced a five-factor structure, including: messages of spirituality/religion; expressions of love; proactive difficult relationship talk; everyday communication; and talk about illness/death. Participants' perceptions of the relational closeness and difficulty with the deceased significantly influenced the individuals' recalled frequency of FCs messages. Practical and scholarly implications focus on the needs of the family members regarding their communication with terminally ill individuals, as well as directions for future research with the FCs Scale. PMID:25148453

  2. Long-term Outcomes After In-Hospital CPR in Older Adults With Chronic Illness

    PubMed Central

    Ehlenbach, William J.; Deyo, Richard A.; Curtis, J. Randall

    2014-01-01

    BACKGROUND: Outcomes after in-hospital CPR in older adults with chronic illness are unclear. METHODS: We examined inpatient Medicare data from 1994 through 2005 to identify CPR recipients. We grouped beneficiaries aged ≥ 67 years by severity of six chronic diseases—COPD, congestive heart failure (CHF), chronic kidney disease (CKD), malignancy, diabetes, and cirrhosis—and investigated survival to discharge, discharge destination, rehospitalizations, and long-term survival. RESULTS: We identified 358,682 CPR recipients. Most patients with chronic disease were less likely to survive to discharge (eg, 14.8% in the advanced COPD group [P < .001] and 11.3% in the advanced malignancy group [P < .001]) than patients without chronic illness (17.3%). Among discharge survivors, the median long-term survival was shorter in patients with chronic illness (eg, 5.0, 3.5, and 2.8 months in the advanced COPD, malignancy, and cirrhosis groups, respectively; P < .001 for all) than without (26.7 months). Although 7.2% of CPR recipients without chronic disease were discharged home and survived at least 6 months without readmission, ≤ 2.0% of recipients with advanced COPD, CHF, malignancy, and cirrhosis (P < .001 for all) met these criteria. Adjusted analyses confirmed that most subgroups with chronic illness had lower hospital discharge survival, and among discharge survivors, most were discharged home less often, experienced more hospital readmissions, and had worse long-term survival. CONCLUSIONS: Older CPR recipients with any of the six underlying chronic diseases investigated generally have much worse outcomes than CPR recipients without chronic disease. These findings may substantially affect decisions about CPR in patients with chronic illness. PMID:25086252

  3. College Freshmen with Chronic Illness: A Comparison with Healthy First-Year Students

    ERIC Educational Resources Information Center

    Herts, Kate L.; Wallis, Elizabeth; Maslow, Gary

    2014-01-01

    Over the past four decades, advances in medicine have decreased the mortality rates of many previously fatal chronic diseases. Children who would have died early in life are now living well into adulthood, and many are matriculating as college students. Data regarding the prevalence of chronic illness among college students, the college experience…

  4. An Evaluation of Collaborative Interventions to Improve Chronic Illness Care: Framework and Study Design

    ERIC Educational Resources Information Center

    Cretin, Shan; Shortell, Stephen M.; Keeler, Emmett B.

    2004-01-01

    The authors' dual-purpose evaluation assesses the effectiveness of formal collaboratives in stimulating organizational changes to improve chronic illness care (the chronic care model or CCM). Intervention and comparison sites are compared before and after introduction of the CCM. Multiple data sources are used to measure the degree of…

  5. Effects of being uninsured on ethnic minorities' management of chronic illness

    PubMed Central

    Becker, Gay

    2001-01-01

    Objective To compare the effectiveness with which insured and uninsured persons with chronic illnesses managed their health care. Design Recruited volunteers diagnosed with a variety of chronic illnesses who underwent 3 semistructured interviews in a 1-year period. Setting Volunteers were recruited through referrals, flyers, and face-to-face contacts from community health clinics, senior centers, acute care hospitals, and home care services in 2 urban counties in California between December 1997 and December 2000. Participants A total of 297 persons between the ages of 23 and 97 years (35% African American, 33% Latino, and 32% Filipino American), of whom 42 (14%) had no health insurance. Main outcome measures Qualitative analysis of interview data compared insured and uninsured respondents on a series of components of chronic illness management, including control over illness, frequency of health crises, procuring medication, use of medication, understanding of the illness, knowledge of self-care measures, and awareness of risk factors. Whether respondents were under the care of a regular physician was also assessed. Results Compared with insured respondents, uninsured respondents were much less effective at managing their illnesses. The uninsured had poorly controlled illnesses, frequent health crises, difficulty procuring medication, used medication incorrectly, demonstrated poor understanding of their illness, and displayed little knowledge of self-care measures or risk awareness. They rarely had a regular physician or attended a specific health clinic. Conclusions The findings suggest that not only did uninsured persons with chronic health conditions lack adequate health care, their illnesses were also poorly controlled. Inadequately educated about their health, uninsured persons lacked the information, insight, and tools that would have allowed them to manage their illnesses more effectively. PMID:11431394

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

    PubMed Central

    2012-01-01

    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 understand the time demands

  7. Palliative care for the terminally ill in America: the consideration of QALYs, costs, and ethical issues.

    PubMed

    Yang, Y Tony; Mahon, Margaret M

    2012-11-01

    The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, it fares poorly under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially. PMID:22071573

  8. The support needs of terminally ill people living alone at home: a narrative review

    PubMed Central

    Aoun, Samar M.; Breen, Lauren J.; Howting, Denise

    2014-01-01

    Context: The number of terminally ill people who live alone at home and without a caregiver is growing and exerting pressure on the stretched resources of home-based palliative care services. Objectives: We aimed to highlight the unmet support needs of terminally ill people who live alone at home and have no primary caregiver and identify specific models of care that have been used to address these gaps. Methods: We conducted a narrative review of empirical research published in peer-reviewed journals in English using a systematic approach, searching databases 2002–2013. This review identified 547 abstracts as being potentially relevant. Of these, 95 were retrieved and assessed, with 37 studies finally reviewed. Results: Majority of the studies highlighted the reduced likelihood of this group to be cared for and die at home and the experiences of more psychosocial distress and more hospital admissions than people with a primary caregiver. Few studies reported on the development of models of care but showed that the challenges faced by this group may be mitigated by interventions tailored to meet their specific needs. Conclusion: This is the first review to highlight the growing challenges facing community palliative care services in supporting the increasing number of people living alone who require care. There is a need for more studies to examine the effectiveness of informal support networks and suitable models of care and to provide directions that will inform service planning for this growing and challenging group. PMID:25750828

  9. Ethics of physiotherapy practice in terminally ill patients in a developing country, Nigeria.

    PubMed

    Chigbo, N N; Ezeome, E R; Onyeka, T C; Amah, C C

    2015-12-01

    Physiotherapy has been widely defined as a healthcare profession that assesses, diagnoses, treats, and works to prevent disease and disability through physical means. The World Confederation for Physical Therapy describes physiotherapy as providing services to people and populations to develop, maintain, and restore maximum movement and functional ability throughout the lifespan. Physiotherapists working with terminally ill patients face a myriad of ethical issues which have not been substantially discussed in bioethics especially in the African perspective. In the face of resource limitation in developing countries, physiotherapy seems to be a cost-effective means of alleviating pain and distressing symptoms at the end-of-life, ensuring a more dignified passage from life to death, yet referrals to physiotherapy are not timely. Following extensive literature search using appropriate keywords, six core ethical themes related to physiotherapy in terminally ill patients were identified and using the four principles of bioethics (patient's autonomy, beneficence, nonmaleficence, and justice), an ethical analysis of these themes was done to highlight the ethical challenges of physiotherapists working in a typical African setting such as Nigeria. PMID:26620621

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

    PubMed

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

    2016-06-01

    A high level of social support can improve long-term diabetes self-management. Support from a single source has been evaluated. This study aims to analyze support from multiple and multilevel sources for diabetic patients by using the Chronic Illness Resources Survey (CIRS). Factors influencing the utilization of the CIRS were also evaluated. A total of 297 patients with diabetes were investigated using the CIRS and Perceived Diabetes Self-management Scale in Shihezi City, China. Descriptive statistics were used to explain demographic variables and scores of the scales. Factors affecting the utilization of chronic illness resources were determined through univariate analysis and then examined by multivariate logistic regression analysis. Of the 297 diabetic patients surveyed, 67% failed to reach the standard (more than 3 points) of utilizing chronic illness resources. Moreover, utilization of chronic illness resources was positively moderately correlated with self-management of diabetes (r = 0.75, P < 0.05). According to the multivariate logistic regression analysis, age (OR, 3.42; 95%CI, 1.19-9.84) and monthly income (OR, 5.27; 95%CI, 1.86-14.90) were significantly positively associated with the CIRS score. Individuals with high school (OR, 2.61; 95%CI, 1.13-6.05) and college (OR, 3.02; 95%CI, 1.13-8.04) degrees obtained higher scores in the survey than those with elementary school education. Results indicated that utilization of resources and support for chronic illness self-management, particularly personal adjustment and organization, were not ideal among diabetics in the communities of north-western China. Improved utilization of chronic illness resources was conducive for proper diabetes self-management. Furthermore, the level of utilization of chronic illness resources increased with age, literacy level, and monthly income. PMID:27075460

  11. Counseling Families with Chronic Illness. Family Psychology and Counseling Series.

    ERIC Educational Resources Information Center

    McDaniel, Susan H., Ed.

    Regardless of whether a patient's health-care provider works from a traditional biomedical or a new biopsychosocial model, therapists and counselors need to work with patients and their families challenged by the onset of a serious illness. This book addresses this need and outlines the five goals of medical family therapy: (1) help the family…

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

    PubMed Central

    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

  13. Integration of biosensors and drug delivery technologies for early detection and chronic management of illness.

    PubMed

    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

  14. Chronic illness: the importance of support for families caring for a child with cystic fibrosis.

    PubMed

    Coyne, I T

    1997-03-01

    The effect of chronic life-threatening illness on the family is one of the major problems confronting the health-care system today. Increasingly, parents have the major responsibility for the daily management of their child's condition. There is evidence that many parents lack the professional help and support which could ameliorate some of their problems. It is important that nurses have an understanding of how families cope with the burden of caring for a chronically ill child. Health professionals need clear guidelines on how to support these families in their role as primary care-givers. This paper examines how families of children with cystic fibrosis adapt to the illness in order to provide indicators for nursing practice and to enhance the care and support provided for these families. Effective coping strategies include: assigning meaning to the illness, sharing the burden, denial of diagnosis and incorporating therapy in a schedule. PMID:9188350

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

    PubMed

    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). PMID:24329410

  16. The role of the psychologist in determining competence for assisted suicide/euthanasia in the terminally ill.

    PubMed

    Galbraith, K M; Dobson, K S

    2000-08-01

    This paper discusses the history of assisted suicide/euthanasia and public attitudes in Canada; discusses depression in the terminally ill and the potential role of the psychologist in the assisted suicide/euthanasia process; and specifically addresses the importance of determining competence in terminally ill patients. One area in which the services of psychologists have not been used to their fullest potential is in the care of the terminally ill, particularly in helping them make end-of-life decisions. It is very important that individuals making end-of-life decisions be used to assessed for mental disorders in order to ensure that they are able to make competent decisions. If assisted suicide and euthanasia were to become legalized, psychologists should be involved in the assessment process in order to determine competency. PMID:12484401

  17. Self-Care Among Chronically Ill African Americans: Culture, Health Disparities, and Health Insurance Status

    PubMed Central

    Becker, Gay; Gates, Rahima Jan; Newsom, Edwina

    2004-01-01

    Little is known about the self-care practices of chronically ill African Americans or how lack of access to health care affects self-care. Results from a qualitative interview study of 167 African Americans who had one or more chronic illnesses found that self-care practices were culturally based, and the insured reported more extensive programs of self-care. Those who had some form of health insurance much more frequently reported the influence of physicians and health education programs in self-care regimens than did those who were uninsured. It is concluded that the cultural components of self-care have been underemphasized, and further, that the potential to maximize chronic illness management through self-care strategies is not realized for those who lack access to health care. PMID:15569953

  18. Suicidal ideation and suicide attempts in older adults: Influences of chronic illness, functional limitations, and pain.

    PubMed

    Kim, Su Hyun

    2016-01-01

    This study aimed to examine the associations between suicidal behavior in older Korean adults and chronic illnesses, functional limitations, and pain. Data were obtained and analyzed for 8500 adults over 65 years of age from the 2007-2012 Korea National Health and Nutrition Examination Survey IV and V. Multivariate logistic regression analyses were conducted to examine the associations between suicidal behavior, chronic illness, functional limitations, and pain. The presence of arthritis and renal failure were significantly associated with a higher risk of suicidal ideation and suicide attempts. Moderate limitation in usual activities and extreme pain significantly increased the risk of both suicidal ideation and suicide attempts, over and above the existence of chronic illnesses and depression status. PMID:26318163

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

    PubMed Central

    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. Analyses were performed with structural equation modelling techniques. Results 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). Discussion 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. Conclusions 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. PMID:25056975

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

    PubMed Central

    Aji, Budi; Yamamoto, Shelby Suzanne; Sauerborn, Rainer

    2014-01-01

    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 extended family members

  1. Neurodevelopment and Chronic Illness: Mechanisms of Disease and Treatment

    ERIC Educational Resources Information Center

    Armstrong, F. Daniel

    2006-01-01

    Successful treatment of many childhood diseases once considered terminal has resulted in the emergence of long-term effects of the disease or consequences of treatment that were previously unrecognized. Many of these long-term effects involve the central nervous system (CNS) and are developmental in the way that they emerge over time. Because we…

  2. Medication Needs Vary for Terminally Ill Vietnam Era Veterans With and Without a Diagnosis of PTSD.

    PubMed

    Kelley-Cook, Esther; Nguyen, George; Lee, Shuko; Edwards, Tressia M; Sanchez-Reilly, Sandra

    2016-08-01

    This retrospective pilot study aims to evaluate the clinical impact of palliative care in the treatment of terminally ill Vietnam Veterans with a history of posttraumatic stress disorder (PTSD) versus those without PTSD, as it pertains to medications for symptom control at the end of life (EOL). Active prescriptions for benzodiazepines, hypnotics, antidepressants, and antipsychotic medications at the EOL were recorded. During EOL care, 28 (72%) participants with PTSD used these medications versus 55 (40%) of the non-PTSD participants (P = .0005). There was significant correlation between a lifetime diagnosis of PTSD with antidepressant use (P = .0002) and hypnotics (P = .0085) during EOL care but not with benzodiazepines or antipsychotics. The higher utilization of certain medication classes among participants with PTSD may indicate that PTSD treatment should continue at the EOL to improve care. PMID:25991568

  3. Bereaved parents' experiences of music therapy with their terminally ill child.

    PubMed

    Lindenfelser, Kathryn J; Grocke, Denise; McFerran, Katrina

    2008-01-01

    The purpose of this study was to investigate bereaved parents' experiences of music therapy with their terminally ill child. In-depth interviews were conducted with 7 bereaved parents who were recruited through a community-based palliative care program. The parent participants' experiences varied as their children who received music therapy ranged in ages from 5 months to 12 years old. The interview transcripts were analyzed using phenomenological strategies. Five global themes emerged from the analysis. These included (a) music therapy was valued as a means of altering the child's and family's perception of their situation in the midst of adversity, (b) music therapy was a significant component of remembrance, (c) music therapy was a multifaceted experience for the child and family, (d) music therapy enhanced communication and expression, and (e) parents shared perceptions of and recommendations for improving music therapy services. These emergent themes yield knowledge into the relevance of music therapy within pediatric palliative care. PMID:18959454

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

    PubMed

    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. PMID:23729764

  5. [Home care for the chronically ill: a self-care health system].

    PubMed

    Silva, Leticia Robles

    2004-01-01

    This article focuses on home care for chronically ill adults and seniors. According to our thesis, home care should be understood as a self-care system, and its aim is to guarantee the individual's social and bodily survival. Home care consists of three areas, related to illness, the home, and to life history. Caregiving, usually under women's responsibility, is present throughout the history of the illness and the health-seeking process. The article analyzes these issues in light of the ageing process, the epidemiological changes occurring worldwide, and the urgency to incorporate this analysis into the heath care research agenda. PMID:15073644

  6. Adaptive leadership framework for chronic illness: framing a research agenda for transforming care delivery.

    PubMed

    Anderson, Ruth A; Bailey, Donald E; Wu, Bei; Corazzini, Kirsten; McConnell, Eleanor S; Thygeson, N Marcus; Docherty, Sharron L

    2015-01-01

    We propose the Adaptive Leadership Framework for Chronic Illness as a novel framework for conceptualizing, studying, and providing care. This framework is an application of the Adaptive Leadership Framework developed by Heifetz and colleagues for business. Our framework views health care as a complex adaptive system and addresses the intersection at which people with chronic illness interface with the care system. We shift focus from symptoms to symptoms and the challenges they pose for patients/families. We describe how providers and patients/families might collaborate to create shared meaning of symptoms and challenges to coproduce appropriate approaches to care. PMID:25647829

  7. Chronic Illness Associated with Mold and Mycotoxins: Is Naso-Sinus Fungal Biofilm the Culprit?

    PubMed Central

    Brewer, Joseph H.; Thrasher, Jack D.; Hooper, Dennis

    2013-01-01

    It has recently been demonstrated that patients who develop chronic illness after prior exposure to water damaged buildings (WDB) and mold have the presence of mycotoxins, which can be detected in the urine. We hypothesized that the mold may be harbored internally and continue to release and/or produce mycotoxins which contribute to ongoing chronic illness. The sinuses are the most likely candidate as a site for the internal mold and mycotoxin production. In this paper, we review the literature supporting this concept. PMID:24368325

  8. Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients.

    PubMed

    Hebert, Randy S; Schulz, Richard; Copeland, Valire C; Arnold, Robert M

    2009-01-01

    Many family caregivers are unprepared for the death of their loved one and may suffer from worse mental health as a result. We therefore sought to determine the factors that family caregivers believe are important to preparing for death and bereavement. Focus groups and ethnographic interviews were conducted with 33 family caregivers (bereaved or current) of terminally ill patients. The interviews were audiotaped, transcribed, and analyzed using the constant comparative method. Life experiences such as the duration of caregiving/illness, advance care planning, previous experiences with caregiving or death, and medical sophistication all impacted preparedness, or the degree to which a caregiver is ready for the death and bereavement. Regardless of life experiences, however, all caregivers reported medical, practical, psychosocial, and religious/spiritual uncertainty. Because uncertainty was multidimensional, caregivers often needed more than prognostic information in order to prepare. Communication was the primary mechanism used to manage uncertainty. Good communication included clear, reliable information, combined with relationship-centered care from health care providers. Finally, preparedness had cognitive, affective, and behavioral dimensions. To prepare, some caregivers needed information tailored to their uncertainty (cognitive), others needed to "mentally" or "emotionally" prepare (affective), and still others had important tasks to complete (behavioral). In order to better prepare family caregivers for the death of a loved one, health care providers must develop a trusting relationship with caregivers, provide them with reliable information tailored to their uncertainty, and allow time for caregivers to process the information and complete important tasks. PMID:18538977

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

    PubMed Central

    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

  10. The chronically mentally ill group treatment for individuals with schizophrenia.

    PubMed

    Wilson, W H; Diamond, R J; Factor, R M

    1990-08-01

    Comprehensive treatment programs for individuals with schizophrenia usually include a variety of groups, many of which have concrete tasks as a focus: medication management, social skills training, meal preparation, etc. These groups can simultaneously serve more general rehabilitative purposes if leaders apply principles of group leadership which recognize the neuropathological substrate of schizophrenia and which take into account the specific interpersonal characteristics and needs of individuals who have the illness. This paper presents a framework for leading task-oriented groups for individuals with schizophrenia and give examples from a medication group in a psychosocial rehabilitation program. PMID:2208966

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

    ERIC Educational Resources Information Center

    Naliboff, Bruce D.; And Others

    1983-01-01

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

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

    PubMed Central

    Tomio, Jun; Sato, Hajime

    2014-01-01

    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. PMID:27147882

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

    PubMed

    Tomio, Jun; Sato, Hajime

    2014-01-01

    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. PMID:27147882

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

    PubMed Central

    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

  15. Child and Parent Perceptions of Monitoring in Chronic Illness Management: A Qualitative Study

    PubMed Central

    Hafetz, Jessica; Miller, Victoria A.

    2010-01-01

    Background The management of a childhood chronic illness can be challenging because it can involve frequent and complex treatment tasks that must be carried out on a daily basis. Parental monitoring of the treatment regimen and child disclosure of health-related information may impact effective illness management but are not well understood. Methods The present study utilized qualitative methods to examine parental monitoring-related behaviors, youth disclosure of health-related information, and both perceptions about, and reactions to, these behaviors in a sample of youth diagnosed with a chronic illness (e.g. asthma, diabetes and cystic fibrosis) and parents of youth with one of these illnesses. Results Parents solicited information from youth verbally, observed symptoms, reminded youth about treatments, and tracked indicators of treatment adherence (e.g., dose counters; glucose meters). Youth reactions varied from acceptance to irritation. Youth behaviors included withholding information and freely disclosing spontaneously and in response to requests. Conclusions Findings derived from this qualitative methodology demonstrate convergence with findings from quantitative studies on this topic, add to the literature related to parental monitoring of chronic illness management, and suggest several avenues for future research. PMID:20533917

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

    PubMed Central

    Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

    2015-01-01

    Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO’s definition of health, health was indeed one of the most important factors when the decision to return was made. PMID:26473899

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

    PubMed

    Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

    2015-10-01

    Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO's definition of health, health was indeed one of the most important factors when the decision to return was made. PMID:26473899

  18. Home Care for Children with Chronic Illnesses and Severe Disabilities: A Bibliography and Resource Guide.

    ERIC Educational Resources Information Center

    Wells, Alice; And Others

    The bibliography and resource guide summarizes relevant research and information on home care for children with disabilities and chronic illnesses, including those with such diagnoses as spina bifida, cerebral palsy, severe mental retardation, acquired immune deficiency syndrome (AIDS), hemophilia, sickle cell anemia, autism, or failure-to-thrive…

  19. Protective Connections and Educational Attainment among Young Adults with Childhood-Onset Chronic Illness

    ERIC Educational Resources Information Center

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

    2012-01-01

    Background: 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…

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

    ERIC Educational Resources Information Center

    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…

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

    PubMed Central

    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

  2. Sports and Athletics: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

    ERIC Educational Resources Information Center

    Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

    This annotated bibliography focuses on issues in sports and athletics for adolescents and young adults with chronic illnesses and disabilities. The listings are drawn from the National Resource Library of the National Center for Youth with Disabilities, which includes journals, books, and non-published materials. The section on bibliographic…

  3. Issues in Nutrition for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

    ERIC Educational Resources Information Center

    Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

    This annotated bibliography lists print materials, training and educational materials, and programs concerned with nutrition for youth with chronic illnesses and disabilities. Basic bibliographic information and a brief abstract are provided for each of the 87 bibliographic citations which date from 1980 through 1991. Citations are organized into…

  4. School Nurse Case Management for Children with Chronic Illness: Health, Academic, and Quality of Life Outcomes

    ERIC Educational Resources Information Center

    Engelke, Martha Keehner; Guttu, Martha; Warren, Michelle B.; Swanson, Melvin

    2008-01-01

    More children with chronic illnesses are attending school, and some of them struggle academically because of issues related to their health. School-based case management has been suggested as one strategy to improve the academic success of these children. This study tracked the academic, health, and quality of life outcomes for 114 children with…

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

    ERIC Educational Resources Information Center

    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…

  6. Race and Ethnicity: Issues for Adolescents with Chronic Illnesses and Disabilities. Cydline Reviews.

    ERIC Educational Resources Information Center

    Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

    This abstract bibliography lists selected resources for addressing race and ethnicity issues with adolescents who have chronic illnesses and disabilities. References are dated from 1980 to 1991. First, 18 references provide general information about the issues of cultural competence and cultural diversity for health care professionals, educators,…

  7. Developing Social Skills: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

    ERIC Educational Resources Information Center

    Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

    This collection of annotated bibliographies focuses on the social skills of adolescents, and is drawn from a national database of current programs and literature regarding adolescents with chronic illnesses and other disabilities. Bibliographic materials listed include documents and articles selected from the database of the National Center for…

  8. Creativity and Solution-Focused Counseling for a Child with Chronic Illness

    ERIC Educational Resources Information Center

    Frels, Rebecca K.; Leggett, Elsa Soto; Larocca, Patricia S.

    2009-01-01

    Children living with chronic illnesses deal with a unique set of challenges, specifically when living in a hospital setting. This counseling experience illustrates how a counselor intern used creativity and solution-focused counseling for goal-setting and exceptional outcomes with a 7-year-old client restricted to a hospital room. The authors…

  9. Concerned about Their Learning: Mathematics Students with Chronic Illness and Their Teachers at School

    ERIC Educational Resources Information Center

    Wilkie, Karina J.

    2014-01-01

    Chronic illness often goes hand-in-hand with absence from school, and students miss out on learning opportunities at school for extended or accumulative periods of time. Many young people seek to continue their school studies nonetheless. The need to consider viable ways to support them academically arose in the context of a project called…

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

    ERIC Educational Resources Information Center

    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,…

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

    ERIC Educational Resources Information Center

    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…

  12. "Getting on with Life": Resilience and Normalcy in Adolescents Living with Chronic Illness

    ERIC Educational Resources Information Center

    Ferguson, Peter; Walker, Hannah

    2014-01-01

    This paper shows the ways in which "resilience" operates with adolescents whose lives have been marked by a significant health condition. It is based on a qualitative study that followed 31 adolescents, dealing with chronic illness, across 3 years of their lives. The study placed the adolescents at the centre of the research process,…

  13. Chronic Illness and Depressive Symptoms among Chinese Older Adults: A Longitudinal Study

    ERIC Educational Resources Information Center

    Chou, Kee-Lee; Chi, Iris

    2002-01-01

    Depression is quite common among the elderly members of Hong Kong Chinese society. This study examined the impact of a series of chronic illnesses on change in depressive symptoms among the older people. The respondents were 260 people aged 70 years or older from a longitudinal study of a representative community sample of the elderly population…

  14. The impact of family behaviors and communication patterns on chronic illness outcomes: a systematic review.

    PubMed

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

    2012-04-01

    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

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

    ERIC Educational Resources Information Center

    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…

  16. Substance Use by Youth with Disabilities and Chronic Illnesses (Second Edition).

    ERIC Educational Resources Information Center

    Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

    This annotated bibliography on substance use by youth with disabilities and chronic illnesses lists references published since 1980 that directly address the special developmental needs of adolescents and young adults. The bibliography's scope includes all disabilities and the use or abuse of a wide range of drugs--alcohol, illicit drugs,…

  17. Legal Issues for Adolescents with Chronic Illnesses and Disabilities and Their Families. CYDLINE Reviews.

    ERIC Educational Resources Information Center

    Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

    This collection of annotated bibliographies focuses on a broad spectrum of legal issues, and is drawn from a national database of current programs and literature regarding adolescents with chronic illnesses and other disabilities. Bibliographic materials listed include documents and articles concerning the following: consent and confidentiality…

  18. Validation of the Development Work Personality Scale for Use with Persons with Disabilities and Chronic Illness

    ERIC Educational Resources Information Center

    O'Sullivan, Deirdre Elizabeth Mary

    2009-01-01

    The current demands of the global economy has led to an increased focus on personality and behaviors as they relate to employment outcomes for the rising number of people living with disabilities and chronic illness. There are a number of well-established and validated theories, models, and instruments that have been implemented to improve work…

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

    PubMed Central

    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

  20. Self-Esteem: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

    ERIC Educational Resources Information Center

    Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

    This annotated bibliography focuses on issues of self-esteem in adolescents with disabilities, which is seen as closely related to development of critical social skills. References have been drawn from the National Center for Youth with Disabilities' National Resource Library, a database about youth with chronic illnesses and disabilities. The…

  1. Recreation and Leisure: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

    ERIC Educational Resources Information Center

    Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

    This bibliography presents 162 annotated references (including bibliographic materials, training and educational materials, and programs) about issues of recreation and leisure for adolescents and young adults with chronic illnesses and disabilities. Each reference usually contains a full bibliographic citation, a brief descriptive abstract, and…

  2. Role-governed behaviors of stepfathers in families with a child with chronic illness.

    PubMed

    Zarelli, Delonna Ann

    2009-04-01

    This article reviews the roles of stepfathers caring for children with a chronic illness and identifies systematic cultural and institutional factors that may interfere with family processes and the stepfather's ability to cope with the situation. There has been no previous systematic research on this participant. The intersection of the role theory and the uncertainty in illness theory provides insights on the stepfather's role in caring for children with a chronic illness. Such an examination is required so that effective supportive interventions can be developed for the whole family. The conclusion calls for further research into the experiences of stepfathers and interventions for stepfathers to fulfill the promise of family-centered care. PMID:19268231

  3. School nurse case management for children with chronic illness: health, academic, and quality of life outcomes.

    PubMed

    Keehner Engelke, Martha; Guttu, Martha; Warren, Michelle B; Swanson, Melvin

    2008-08-01

    More children with chronic illnesses are attending school, and some of them struggle academically because of issues related to their health. School-based case management has been suggested as one strategy to improve the academic success of these children. This study tracked the academic, health, and quality of life outcomes for 114 children with asthma, diabetes, severe allergies, seizures, or sickle-cell anemia in 5 different school districts who were provided case management by school nurses. The children ranged in age from 5 to 19 years. At the end of the school year, children experienced an improvement in quality of life and gained skills and knowledge to manage their illness more effectively. Classroom participation, grades, and participation in extracurricular activities also increased for many children. The study provides evidence of the positive impact school nurses have on children with chronic illness and suggests ways they can measure the outcomes of their interventions. PMID:18757353

  4. End-of-Life Decision Making: A Preliminary Outline for Preparing Counselors to Work with Terminally Ill Individuals

    ERIC Educational Resources Information Center

    Duba, Jill D.; Magenta, Mary

    2008-01-01

    End-of-life care is continuously becoming an issue of paramount importance given an increase in medical advances, the aging of the population, and the movement toward contributing toward a quality of life among terminally ill patients. However, there is a dearth in literature related to this topic specifically in terms of preparing counselors to…

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

    ERIC Educational Resources Information Center

    Ekvall, Shirley M., Ed.; And Others

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

  6. Just regionalisation: rehabilitating care for people with disabilities and chronic illnesses

    PubMed Central

    Secker, Barbara; Goldenberg, Maya J; Gibson, Barbara E; Wagner, Frank; Parke, Bob; Breslin, Jonathan; Thompson, Alison; Lear, Jonathan R; Singer, Peter A

    2006-01-01

    Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an

  7. Mindfulness-based stress reduction: a non-pharmacological approach for chronic illnesses

    PubMed Central

    Niazi, Asfandyar Khan; Niazi, Shaharyar Khan

    2011-01-01

    Background: Mindfulness Based Stress Reduction (MBSR) therapy is a meditation therapy, though originally designed for stress management, it is being used for treating a variety of illnesses such as depression, anxiety, chronic pain, cancer, diabetes mellitus, hypertension, skin and immune disorders. Aim: The aim of this systematic review is to determine the efficacy of MBSR in the treatment of chronic illnesses; it's mechanism of action and adverse effects. It describes an alternative method of treatment for physicians and patients that may help patients cope with their diseases in a more effective way. Materials and Methods: COCHRANE, EMBASE and MEDLINE were systematically searched for data on outcome of treatment with MBSR used alone or in conjunction with other treatments. The data available on prevention of diseases through MBSR was also analyzed. Results: All the 18 studies included in this systematic review showed improvement in the condition of patients after MBSR therapy. These studies were focused on patients with chronic diseases like cancer, hypertension, diabetes, HIV/AIDS, chronic pain and skin disorders, before and after MBSR therapy. Conclusions: Although the research on MBSR is sparse, the results of these researches indicate that MBSR improves the condition of patients suffering from chronic illnesses and helps them cope with a wide variety of clinical problems. PMID:22540058

  8. Reconciling Quinlan and Saikewicz: decision making for the terminally ill incompetent.

    PubMed

    Annas, G J

    1979-01-01

    One of the most perplexing problems in the medicolegal field concerns the criteria on which decisions not to treat terminally ill incompetent patients should be made. These decisions traditionally have been made by physicians in hospitals--sometimes with the assistance of the patient's family--on the basis of their perceptions of the patient's "best interests." Recently, two state supreme courts have ruled on this question. The New Jersey Supreme Court, in the Quinlan case, developed a medical prognosis criterion, and permitted the patient's guardian, family, and physicians to apply it with the concurrence of a hospital "ethics committee." The Massachusetts Supreme Judicial Court, in the Saikewicz case, adopted, on different facts, the test of "substituted judgment" to be applied by a probate court after an adjudicatory hearing. The two cases have been interpreted by many in the medical profession as representing conflicting viewpoints--one supportive of traditional medical decision making and the other distrustful of it. It is the thesis of this Article that Quinlan and Saikewicz are in fundamental agreement and can be reconciled by the next state supreme court that rules on this question. Both courts enunciate a constitutional right to refuse life-sustaining treatment, based on the right to privacy. They agree that incompetents should be afforded the opportunity to exercise this right, and that certain state interests can overcome it. They agree also that physicians should be permitted to make medical judgments, and that societal judgments belong in the courts. The differences in how the opinions are perceived result from the interplay of several factors: the differences in the facts of the cases; the inarticulate use of the term "ethics committee" by the Quinlan court; the literal interpretation of the role of such a committee by the Saikewicz court; a desire for 100 percent immunity on the part of physicians and hospital administrators in Massachusetts; and

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

    PubMed Central

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

    2009-01-01

    Background Chronic disease is a major global challenge. However, chronic illness and its care, when intruding into everyday life, has received less attention in Asia Pacific countries, including Australia, who are in the process of transitioning to chronic disease orientated health systems. Aim The study aims to examine experiences of chronic illness before and after the introduction of Australian Medicare incentives for longer consultations and structured health assessments in general practice. Methods Self-help groups around the conditions of diabetes, epilepsy, asthma and cancer identified key informants to participate in 4 disease specific focus groups. Audio taped transcripts of the focus groups were coded using grounded theory methodology. Key themes and lesser themes identified using a process of saturation until the study questions on needs and experiences of care were addressed. Thematic comparisons were made across the 2002/3 and 1992/3 focus groups. Findings At times of chronic illness, there was need to find and then ensure access to 'the right GP'. The 'right GP or specialist' committed to an in-depth relationship of trust, personal rapport and understanding together with clinical and therapeutic competence. The 'right GP', the main specialist, the community nurse and the pharmacist were key providers, whose success depended on interprofessional communication. The need to trust and rely on care providers was balanced by the need for self-efficacy 'to be in control of disease and treatment' and 'to be your own case manager'. Changes in Medicare appeared to have little penetration into everyday perceptions of chronic illness burden or time and quality of GP care. Inequity of health system support for different disease groupings emerged. Diabetes, asthma and certain cancers, like breast cancer, had greater support, despite common experiences of disease burden, and a need for research and support programs. Conclusion Core themes around chronic illness

  10. Treatment compliance in chronic illness: Current situation and future perspectives.

    PubMed

    Conthe, P; Márquez Contreras, E; Aliaga Pérez, A; Barragán García, B; Fernández de Cano Martín, M N; González Jurado, M; Ollero Baturone, M; Pinto, J L

    2014-01-01

    Long-term chronic diseases have a high mortality rate around the world, affecting both genders equally. Despite improvements in the diagnosis and treatment of various health problems, lack of treatment compliance remains an obstacle to improving health and patient quality of life, and it carries a high associated socio-healthcare cost. The objectives of this study were to develop the concept of «therapeutic adherence», which includes both pharmacological compliance as well as non-pharmacological (level of agreement and patient involvement, lifestyle changes, etc.) treatments. The study also aimed to establish the clinical and socio-health impact of non-compliance, the reasons for non-compliance, and methods and strategies to improve compliance. The results of this study support therapeutic adherence as an essential goal of the healthcare system that encompasses all stakeholders involved in patient health. PMID:24816042

  11. Palliative Care Services for Indian Migrants in Australia: Experiences of the Family of Terminally Ill Patients

    PubMed Central

    Shanmugasundaram, Sujatha; O'Connor, Margaret

    2009-01-01

    Background: The way that health care systems in developing countries like India care for dying patients, has an impact on the expectations of such care for those who migrate to other countries faces. At the end of life, cultural issues may impact on the quality of life remaining and for that reason, it is important that particular cultural practices are understood. This paper describes a study that investigated the cultural issues of access to palliative care services for Indian migrants in Australia. Purpose of the Study: To investigate the experiences of the family members of terminally ill Indian migrants in Victoria, Australia. Objective of the Study: To explore the issues related to accessing palliative care services for Indian migrants; to identify the effectiveness of palliative care in supporting the patient and family and to recommend strategies for improving this care. Materials and Methods: A qualitative descriptive design was utilized. Up to 6 family members were selected for in-depth interviews in understanding cultural issues related to the palliative care services for a family member. Results: Analysis of the interviews revealed that families of Indian patients experience difficulties whilst receiving palliative care services, which fell into three main categories: Indian support systems, cultural issues, and caring experiences. Although each of these issues had a direct influence on the experience of terminal care that their family member received, cultural issues and support systems also influenced the caring experiences. Conclusion: Despite the successful implementation of palliative care services across Australia, there are still problems in accessing and receiving the services among minority and disadvantaged groups like various cultural groups. PMID:20606861

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

    PubMed

    Koley, Munmun; Saha, Subhranil; Ghosh, Shubhamoy; Nag, Goutam; Kundu, Monojit; Mondal, Ramkumar; Purkait, Rajib; Patra, Supratim; Ali, Seikh Swaif

    2016-01-01

    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; p < 0.0001] for all domains and the total score, strong internal consistency (Cronbach's α = 0.86 overall and 0.65-0.82 for individual subscales), and large responsiveness (1.11). The overall mean score percentage seemed to be moderate at 69.5 ± 8.8%. Gender and presence of chronic conditions did not seem to vary significantly with PACIC-20 subscale scores (p > 0.05); 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. PMID:26933640

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

    PubMed Central

    Koley, Munmun; Saha, Subhranil; Ghosh, Shubhamoy; Nag, Goutam; Kundu, Monojit; Mondal, Ramkumar; Purkait, Rajib; Patra, Supratim; Ali, Seikh Swaif

    2015-01-01

    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; p < 0.0001] for all domains and the total score, strong internal consistency (Cronbach’s α = 0.86 overall and 0.65–0.82 for individual subscales), and large responsiveness (1.11). The overall mean score percentage seemed to be moderate at 69.5 ± 8.8%. Gender and presence of chronic conditions did not seem to vary significantly with PACIC-20 subscale scores (p > 0.05); 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. PMID:26933640

  14. Assessment of Chronic Illness Care (ACIC): A Practical Tool to Measure Quality Improvement

    PubMed Central

    Bonomi, Amy E; Wagner, Edward H; Glasgow, Russell E; VonKorff, Michael

    2002-01-01

    Objective To describe initial testing of the Assessment of Chronic Illness Care (ACIC), a practical quality-improvement tool to help organizations 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. Data Sources (1) Pre-post, self-report ACIC data from organizational teams enrolled in 13-month quality-improvement collaboratives focused on care for chronic illness; (2) independent faculty ratings of team progress at the end of collaborative. Study design Teams completed the ACIC at the beginning and end of the collaborative using a consensus format that produced average ratings of their system's approach to delivering care for the targeted chronic condition. Average ACIC subscale scores (ranging from 0 to 11, with 11 representing optimal care) for teams across all four collaboratives were obtained to indicate how teams rated their care for chronic illness before beginning improvement work. Paired t-tests were used to evaluate the sensitivity of the ACIC to detect system improvements for teams in two (of four) collaboratives focused on care for diabetes and congestive heart failure (CHF). Pearson correlations between the ACIC subscale scores and a faculty rating of team performance were also obtained. Results Average baseline scores across all teams enrolled at the beginning of the collaboratives ranged from 4.36 (information systems) to 6.42 (organization of care), indicating basic to good care for chronic illness. All six ACIC subscale scores were responsive to system improvements diabetes and CHF teams made over the course of the collaboratives. The most substantial improvements were seen in decision support, delivery system design, and information systems. CHF teams had particularly high scores in self-management support at the completion of the collaborative. Pearson correlations

  15. Review and Meta-analysis of Couple-Oriented Interventions for Chronic Illness

    PubMed Central

    Schulz, Richard; Helgeson, Vicki S.; Small, Brent J.; Saghafi, Ester M.

    2014-01-01

    Background Evidence continues to build for the impact of the marital relationship on health as well as the negative impact of illness on the partner. Targeting both patient and partner may enhance the efficacy of psychosocial or behavioral interventions for chronic illness. Purpose The purpose of this report is to present a cross-disease review of the characteristics and findings of studies evaluating couple-oriented interventions for chronic physical illness. Methods We conducted a qualitative review of 33 studies and meta-analyses for a subset of 25 studies. Results Identified studies focused on cancer, arthritis, cardiovascular disease, chronic pain, HIV, and Type 2 diabetes. Couple interventions had significant effects on patient depressive symptoms (d=0.18, p<0.01, k=20), marital functioning (d=0.17, p<0.01, k=18), and pain (d=0.19, p<0.01, k=14) and were more efficacious than either patient psychosocial intervention or usual care. Conclusions Couple-oriented interventions have small effects that may be strengthened by targeting partners’ influence on patient health behaviors and focusing on couples with high illness-related conflict, low partner support, or low overall marital quality. Directions for future research include assessment of outcomes for both patient and partner, comparison of couple interventions to evidence-based patient interventions, and evaluation of mechanisms of change. PMID:20697859

  16. Generic data modeling for home telemonitoring of chronically ill patients.

    PubMed Central

    Cai, J.; Johnson, S.; Hripcsak, G.

    2000-01-01

    Management of many types of chronic diseases such as diabetes and asthma relies heavily on patients' self-monitoring of their disease conditions. In recent years, internet-based home telemonitoring systems that allow transmission of patient data to a central database and offer immediate access to the data by the care providers have become available. However, these systems often work with only one or a few types of medical devices and thus are limited in the types of diseases they can monitor. For example, a system designed to collect spirometry data from asthmatic patients cannot be easily adapted to collect blood glucose data from diabetic patients. This is because different medical devices produce different types of data and the existing telemonitoring systems are generally built around a proprietary data schema specific for the device used. In this paper, we describe a generic data schema for a telemonitoring system that is applicable to different types of medical devices and different diseases, and show an implementation of the schema in a relational database suitable for a variety of telemonitoring activities. PMID:11079856

  17. [Four important subjects of successful care at home for patients of terminally ill].

    PubMed

    Ashino, Y; Mutou, A; Kanno, A; Moriyama, A; Kudou, S; Itou, K

    1995-12-01

    From April 1987 to May 1995, we have had care at home for 103 patients of terminally ill, and at this through our experience, we pointed out four important subjects for successful care at home. The first is prompt consultation at anytime when the patient or its family need. It is especially important when the patient's end time is near and previously we must fully instruct to patient's family how to consult and how to care. The second is effective palliative care. In these palliative care pain control with morphine is most important and we must master how to use morphine. The third is truth telling and informed consent. At treatment we have to communicate true information to patient. Home care must be started under patient's will. The fourth is organization of medical care, health care and welfare care. We have to make up network system of these office at first, and finally we have to make up community for supporting patients and these family. PMID:8849276

  18. Being friendly and informal: reflected in nurses', terminally ill patients' and relatives' conversations at home.

    PubMed

    Hunt, M

    1991-08-01

    The aspect of the study discussed is part of the analysis of audio-recorded, naturally occurring conversations between symptom control team (SCT) nurses, terminally ill cancer patients and their relatives in their own homes over a 3-month period. Using an ethnographic, extended case-study approach, four 'role formats' were identified as consistently used by the SCT nurses to carry out their work through conversation, one of them being 'friendly and informal'. The SCT nurses explicitly made it known to patients and their relatives that they intended to be 'friendly and informal'. How such a claim was translated into practice, both non-conversationally and through conversation, is the focus of this paper. Being 'friends' and being 'friendly and informal' with patients and clients is frequently advocated in medical and nursing literature, but how this is achieved in practice and the responses of patients seems unstudied. Therefore, the analysis discussed in this paper opens up for critical reflection an unquestioned, taken-for-granted aspect of practice where it is demonstrated how 'friendliness and informality' are conveyed through chatting and how it differs from 'formal' conversations. PMID:1779081

  19. Enzymatic changes in myosin regulatory proteins may explain vasoplegia in terminally ill patients with sepsis

    PubMed Central

    Zheng, Wentao; Kou, Yong; Gao, Feng-lan; Ouyang, Xiu-he

    2016-01-01

    The current study was conducted with the hypothesis that failure of maintenance of the vascular tone may be central to failure of the peripheral circulation and spiralling down of blood pressure in sepsis. Namely, we examined the balance between expression of myosin light chain (MLC) phosphatase and kinase, enzymes that regulate MLCs dephosphorylation and phosphorylation with a direct effect on pharmacomechanical coupling for smooth muscle relaxation and contraction respectively. Mechanical recordings and enzyme immunoassays of vascular smooth muscle lysates were used as the major methods to examine arterial biopsy samples from terminally ill sepsis patients. The results of the present study provide evidence that genomic alteration of expression of key regulatory proteins in vascular smooth muscles may be responsible for the relentless downhill course in sepsis. Down-regulation of myosin light chain kinase (MLCK) and up-regulation of MLCK may explain the loss of tone and failure to mount contractile response in vivo during circulation. The mechanical studies demonstrated the inability of the arteries to develop tone when stimulated by phenylephrine in vitro. The results of our study provide indirect hint that control of inflammation is a major therapeutic approach in sepsis, and may facilitate to ameliorate the progressive cardiovascular collapse. PMID:26772992

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

    PubMed

    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. PMID:26355053

  1. Self-Management: Enabling and empowering patients living with cancer as a chronic illness

    PubMed Central

    McCorkle, Ruth; Ercolano, Elizabeth; Lazenby, Mark; Schulman-Green, Dena; Schilling, Lynne S.; Lorig, Kate; Wagner, Edward H.

    2010-01-01

    With recent improvements in early detection, diagnosis and treatment of cancer, people with cancer are living longer, and their cancer may be managed as a chronic illness. Cancer as a chronic illness places new demands on patients and families to manage their own care, and it challenges old paradigms that oncology's work is done after treatment. As a chronic illness, however, cancer care occurs on a continuum that stretches from prevention to the end of life, with early detection, diagnosis, treatment, and survivorship in between. In this paper, we review self-management interventions that enable patients and families to participate in managing their care along this continuum. We review randomized controlled trials of self-management interventions with cancer patients and families in the treatment, survivorship, and end-of-life phases of the cancer-care continuum. We also present the Chronic Care Model as a model of care that oncology practices can use to enable and empower patients and families to engage in self-management. We conclude that, the need for a common language by which to speak about self-management and a common set of self-management actions for cancer care notwithstanding, oncology practices can now build strong relationships with their patients and formulate mutually-agreed upon care plans that enable and empower patients to care for themselves in the way they prefer. PMID:21205833

  2. Collaborative Care for Patients with Depression and Chronic Illnesses

    PubMed Central

    Katon, Wayne J.; Lin, Elizabeth H.B.; Von Korff, Michael; Ciechanowski, Paul; Ludman, Evette J.; Young, Bessie; Peterson, Do; Rutter, Carolyn M.; McGregor, Mary; McCulloch, David

    2012-01-01

    provided guideline-based, patient-centered management of depression and chronic disease significantly improved control of medical disease and depression. (Funded by the National Institute of Mental Health; ClinicalTrials.gov number, NCT00468676.) PMID:21190455

  3. Prevalence, Severity, and Co-occurrence of Chronic Physical Health Problems of Persons With Serious Mental Illness

    PubMed Central

    Jones, Danson R.; Macias, Cathaleene; Barreira, Paul J.; Fisher, William H.; Hargreaves, William A.; Harding, Courtenay M.

    2009-01-01

    Objectives: This study examined Medicaid claims forms to determine the prevalence, severity, and co-occurrence of physical illness within a representative sample of persons with serious mental illness (N=147). Methods: Representativeness of health problems in the study sample was established through comparison with a larger sample of persons with serious mental illness enrolled in Medicaid within the same state. Standardized annual costs were then assigned to Medicaid claims diagnoses, and individual health problem severity was measured as the sum of estimated treatment costs for diagnosed conditions. Results: Seventy-four percent of the study sample (N=109) had been given a diagnosis of at least one chronic health problem, and 50 percent (N=73) had been given a diagnosis of two or more chronic health problems. Of the 14 chronic health conditions surveyed, chronic pulmonary illness was the most prevalent (31 percent incidence) and the most comorbid. Persons with chronic pulmonary illness were second only to those with infectious diseases in average annual cost of treatment ($8,277). Also, 50 percent or more of participants in eight other diagnostic categories had chronic pulmonary illness. A regression analysis identified age, obesity, and substance use disorders as significant predictors of individual health problem severity. Conclusions: Risk adjustment for physical health is essential when setting performance standards or cost expectations for mental health treatment. Excluding persons with chronic health problems from mental health service evaluations restricts generalizability of research findings and may promote interventions that are inappropriate for many persons with serious mental illness. PMID:15534013

  4. Integrating paid work and chronic illness in daily life: A space-time approach to understanding the challenges.

    PubMed

    McQuoid, Julia; Welsh, Jennifer; Strazdins, Lyndall; Griffin, Amy L; Banwell, Cathy

    2015-07-01

    The upward trend of chronic illness in working age populations calls for better understanding of the difficulties chronically ill people face with workforce participation. Existing research focuses primarily on physical limitations and employer attitudes about chronic illness. Here we use a space-time approach to illuminate the importance of negotiating logistical challenges and embodied rhythms when balancing work and chronic illness. We draw from time geography and rhythmanalysis in analysing interviews from a qualitative case study of 26 individuals living with chronic kidney disease in Australia. Difficulties with paid work arise from: (1) competition for space-time resources by employers and health services; (2) arrhythmias between the body, work and health services; and (3) the absence of workplace rhythms on which to 'hook' health activities. Implications for workplaces and health services design are discussed. PMID:25968586

  5. A COST–BENEFIT ANALYSIS OF A FAMILY SYSTEMS INTERVENTION FOR MANAGING PEDIATRIC CHRONIC ILLNESS

    PubMed Central

    Distelberg, Brian J.; Emerson, Natacha D.; Gavaza, Paul; Tapanes, Daniel; Brown, Whitney N.; Shah, Huma; Williams-Reade, Jacqueline; Montgomery, Susanne

    2016-01-01

    Despite recent increases of psychosocial programs for pediatric chronic illness, few studies have explored their economic benefits. This study investigated the costs–benefits of a family systems-based, psychosocial intervention for pediatric chronic illness (MEND: Mastering Each New Direction). A quasi-prospective study compared the 12-month pre–post direct and indirect costs of 20 families. The total cost for program was estimated to $5,320. Families incurred $15,249 less in direct and $15,627 less in indirect costs after MEND. On average, medical expenses reduced by 86% in direct and indirect costs, for a cost–benefit ratio of 0.17. Therefore, for every dollar spent on the program, families and their third payers saved approximately $5.74. Implications for healthcare policy and reimbursements are discussed. PMID:27282311

  6. Revisionist or simply wrong? A response to Armstrong's article on chronic illness

    PubMed Central

    Gilleard, Chris; Higgs, Paul

    2014-01-01

    This article is a response to David Armstrong's recent, revisionist account of the epidemiological transition which he claims replaced earlier discourses of ageing with new discourses of chronic disease. We argue (i) that he misrepresents a key element in Omran's account of the epidemiological transition, namely the decline in infant, child and maternal mortality; (ii) that he fails to acknowledge debates going back centuries in Western medicine over the distinctions between natural and accidental death and between endogenous and extrinsic causes of ageing and (iii) that he misrepresents the growth of medical interest in the everyday illnesses of old age over the course of the 20th century as a discourse of suppression rather than a process of inclusion. While we would acknowledge that the chronic illnesses of today are different from those of the past, this amounts to something more than the changing semantics of senility. PMID:25155775

  7. A Cost-Benefit Analysis of a Family Systems Intervention for Managing Pediatric Chronic Illness.

    PubMed

    Distelberg, Brian J; Emerson, Natacha D; Gavaza, Paul; Tapanes, Daniel; Brown, Whitney N; Shah, Huma; Williams-Reade, Jacqueline; Montgomery, Susanne

    2016-07-01

    Despite recent increases of psychosocial programs for pediatric chronic illness, few studies have explored their economic benefits. This study investigated the costs-benefits of a family systems-based, psychosocial intervention for pediatric chronic illness (MEND: Mastering Each New Direction). A quasi-prospective study compared the 12-month pre-post direct and indirect costs of 20 families. The total cost for program was estimated to $5,320. Families incurred $15,249 less in direct and $15,627 less in indirect costs after MEND. On average, medical expenses reduced by 86% in direct and indirect costs, for a cost-benefit ratio of 0.17. Therefore, for every dollar spent on the program, families and their third payers saved approximately $5.74. Implications for healthcare policy and reimbursements are discussed. PMID:27282311

  8. Hospitalized children with chronic illness: parental caregiving needs and valuing parental expertise.

    PubMed

    Balling, K; McCubbin, M

    2001-04-01

    Parents who care for a child with a chronic illness are forced to relinquish much of the control of the child's care when the child is hospitalized. By using the family systems theory as the underlying framework, the amount of control that parents of children with chronic illness wanted over their hospitalized child's care, and the degree to which parents felt health care professionals valued their expertise, was examined in a national sample of 50 parent caregivers. Participation in information sharing and technical care were areas over which parents wanted the most control. Nurses and attending physicians were rated highest in valuing parental expertise. Content analysis of an open-ended question on parental control revealed that parents felt a higher quality care was given at home than in the hospital; nurses were too busy or understaffed to provide optimal care in the hospital; and the child's control of care and decision making should increase as the child grew older. PMID:11326399

  9. Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis.

    PubMed

    Jason, Leonard A; Sunnquist, Madison; Brown, Abigail; Evans, Meredyth; Newton, Julia L

    2016-01-01

    Considerable discussion has transpired regarding whether chronic fatigue syndrome is a distinct illness from Myalgic Encephalomyelitis. A prior study contrasted the Myalgic Encephalomyelitis International Consensus Criteria with the Fukuda and colleagues' chronic fatigue syndrome criteria and found that the Myalgic Encephalomyelitis International Consensus Criteria identified a subset of patients with greater functional impairment and physical, mental, and cognitive problems than the larger group who met Fukuda and colleagues' criteria. The current study analyzed two discrete data sets and found that the Myalgic Encephalomyelitis International Consensus Criteria identified more impaired individuals with more severe symptomatology. PMID:24510231

  10. Drug dependence, a chronic medical illness: implications for treatment, insurance, and outcomes evaluation.

    PubMed

    McLellan, A T; Lewis, D C; O'Brien, C P; Kleber, H D

    2000-10-01

    The effects of drug dependence on social systems has helped shape the generally held view that drug dependence is primarily a social problem, not a health problem. In turn, medical approaches to prevention and treatment are lacking. We examined evidence that drug (including alcohol) dependence is a chronic medical illness. A literature review compared the diagnoses, heritability, etiology (genetic and environmental factors), pathophysiology, and response to treatments (adherence and relapse) of drug dependence vs type 2 diabetes mellitus, hypertension, and asthma. Genetic heritability, personal choice, and environmental factors are comparably involved in the etiology and course of all of these disorders. Drug dependence produces significant and lasting changes in brain chemistry and function. Effective medications are available for treating nicotine, alcohol, and opiate dependence but not stimulant or marijuana dependence. Medication adherence and relapse rates are similar across these illnesses. Drug dependence generally has been treated as if it were an acute illness. Review results suggest that long-term care strategies of medication management and continued monitoring produce lasting benefits. Drug dependence should be insured, treated, and evaluated like other chronic illnesses. JAMA. 2000;284:1689-1695. PMID:11015800

  11. Adaptation of children to a chronically ill or mentally handicapped sibling.

    PubMed Central

    Seligman, M

    1987-01-01

    The presence of a chronically ill or mentally handicapped child in a family can be a stress for the child's siblings, who often are ill informed about the nature and prognosis of the illness, may be uncertain what is expected of them in the caregiving role, may feel their own identities threatened, and may experience ostracism by their friends and misunderstanding at school. Although individual reactions vary widely, feelings of anger, guilt, resentment and shame are commonly reported. Excessive responsibility and concern about one's identity may add to these feelings and culminate in psychologic problems in the sibling. The physician caring for the family must be alert for symptoms of emotional disturbance or social maladjustment among the siblings of chronically ill or mentally handicapped children and should be prepared to counsel the family or refer them to a counsellor experienced in this area. In general, the first step is to be sure that the sibling is fully informed about the condition and to encourage frank discussion between the parents and the handicapped child's siblings. PMID:3555760

  12. The Family Challenge of Caring for the Chronically Mentally Ill: A Phenomenological Study

    PubMed Central

    Shamsaei, Farshid; Cheraghi, Fatemeh; Esmaeilli, Ravanbakhsh

    2015-01-01

    Background: Family caregiving for patients with chronic mental illness is influenced by various factors such as political, socioeconomic, and cultural contexts as well as related policies and health services. Objectives: The purpose of this study was to explore the challenges with which the family caregivers of patients with chronic mental illness have to contend. Materials and Methods: The research design was qualitative with a phenomenological approach. The research population consisted of 16 long-term carers expressing interest in participating in the project. The carers were the family members of mentally ill relatives who collected their monthly medications at Farshchian Psychiatry Hospital in Hamadan in 2012. Purposive sampling was used to draw the sample. Data were collected by individual in-depth semi-structured interviews, which were tape-recorded and analyzed via Colaizzi’s phenomenological method. Rigor was assessed regarding credibility, dependability, conformability, and transferability. Results: Our findings highlighted 4 main themes, namely stress and emotional distress, need for education and information, socioeconomic effects and support, and physical strain. Conclusions: Families experience frustrations when providing support and care to their mentally ill relatives. They, therefore, need appropriate support and intervention by mental health services. PMID:26576169

  13. Co-construction of chronic illness narratives by older stroke survivors and their spouses.

    PubMed

    Radcliffe, Eloise; Lowton, Karen; Morgan, Myfanwy

    2013-09-01

    Illness narratives have mainly focused on individual patients' accounts, and particularly those of people experiencing the onset of chronic illness in mid-life. However, a growing number of older people are spending their later life with their partner, with both experiencing complex morbidities. We examine the shared creation of meanings among older stroke survivors and their spouses and the implications for individual and couple identity. Joint biographical narrative interviews were held with 13 stroke survivors aged 75-85 and their spouses. The analysis examined both narrative content and narrative style. Three main types of co-presentation of identity were identified. The 'united couple' described couples who pulled together and emphasised their accommodation of the stroke and normality as a couple, despite often considerable disability, and was strongly underpinned by collaborative interaction in interviews. Caring relationships were distinguished as 'positive', involving self-reliant couples who took pride in how they managed and 'frustrated' in couples who emphasised the difficulties of caring and hardships experienced and were characterised by a conflictual style of narrative. We argue that joint interviews provide new forms of data that extend notions of how illness is lived and demonstrates how the marital relationship can mediate the experience of chronic illness and disability and its impact on identity. PMID:23397892

  14. Adults with terminal illness: a literature review of their needs and wishes for food.

    PubMed

    Hughes, N; Neal, R D

    2000-11-01

    Food refusal can be a source of conflict between dying people and their caregivers. This review examines: the nature and purpose of food; some reasons for and implications of anorexia in terminal illness; ethical principles underpinning responses to declining appetite and food refusal; social transactions between dying people and their caregivers in relation to needs and wishes for food; and the need for further empirical research. The nature and purpose of food in human societies has been studied extensively by anthropologists but the knowledge gained is not often imported into health care practice, where eating is seen from a medical rather than an anthropological perspective. Food refusal may be a consequence of anorexia which is the result of physiological or psychological changes or it may be a deliberate choice in acceptance of impending death. Ethical principles underpinning responses to declining appetite and food refusal have been studied extensively and clear guidance obtained about what would be appropriate behaviour in given circumstances. There is little published empirical work on social transactions between dying people and their caregivers in relation to needs and wishes for food. As the contribution made to effective care-giving by high-quality interpersonal relationships is widely recognized, further knowledge about how best to sustain such relationships in these important circumstances would be useful. Moreover, as such interpersonal relationships often occur in an institutional context, it may be that more can be learnt from close examination of social transactions about how best to structure organizational processes to maximize autonomy and comfort for patients at the end of life. Further research is indicated. PMID:11114994

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

    PubMed

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

    2014-01-01

    The Chinese community, a heterogeneous, highly visible non-English speaking ethnic group in Australia, remains mostly hidden and underrepresented in palliative care service delivery along with participation in health research despite being the fastest growing such group in the country. There is a lack of Australian research information concerning the impact of migration on the caregiving experience of women carers within the Chinese cultural framework and the Australian palliative care context. This paper aims to explore the influence of Chinese cultural norms and immigration on the experience of immigrant women of Chinese ancestry caring for a terminally ill family member at home in Sydney. This study also seeks to identify factors that may present access barriers to palliative care support services. A qualitative approach was used in this study. Data were collected from semi-structured interviews with five home-based Chinese women carers and were analysed using thematic analysis. Findings identified that the participants found being a carer is a lonely and isolating experience. Sources of isolation and loneliness included social isolation experienced as a solitary carer without meaningful family and social relationships; loss of familiar cultural understandings and family values; and emotional isolators expressed in response to the physical and emotional role commitment and other constraints. The study results suggest the need for palliative care educational programmes designed to help nurses to understand the impact of cultural background within the palliative care context. Results also indicate that health care professionals should provide culturally appropriate and competent palliative care services, sensitive to the diverse socio-cultural influences and individual needs of Chinese migrants. PMID:25632724

  16. Influence of Intensity and Duration of Yoga on Anxiety and Depression Scores Associated with Chronic Illness

    PubMed Central

    Telles, S; Pathak, S; Kumar, A; Mishra, P; Balkrishna, A

    2015-01-01

    Background: Chronic illness is commonly associated with anxiety and depression. Both anxiety and depression respond to yoga. However, there is no report on the association between the intensity and duration of yoga practice with the benefits seen. Aim: The present study was intended to determine whether the daily duration of yoga practice and the duration of experience in months would predict anxiety and depression, associated with chronic illness. Subjects and Methods: Seven hundred and sixty-three volunteers with ages between 14 and 86 years (group mean age standard deviation, 50.2 [14.2]) who attended a 7 day residential yoga camp in the north of India were included in this cross-sectional study. All participants had chronic illnesses, which were under control with treatment, and which were categorized and are detailed. Participants were assessed for state anxiety scores using State-Trait Anxiety Inventory and for anxiety with hospital anxiety and depression scale (HADS-A), and depression was assessed using HADS-D scores of the HADS. Linear multiple regression analyses were performed using PASW SPSS version 18.0 (Armonk, New York, U.S.) to determine how the daily and monthly duration of yoga practice could influence state anxiety, hospital anxiety and depression of the participants. Results: Yoga practice in months and the time spent practicing yoga each day significantly predict the level of state anxiety (P < 0.001, P = 0.03) and HAD-A (P < 0.01, P < 0.01). The duration of yoga practice in months alone was a significant predictor of the HAD-D (P < 0.01). Conclusions: The results suggest that the duration of yoga practice in months and daily practice in minutes predict anxiety associated with chronic illness. In contrast the duration of yoga practice in months alone, predicted depression scores. PMID:26229714

  17. The over time development of chronic illness self-management patterns: a longitudinal qualitative study

    PubMed Central

    2013-01-01

    Background There currently exists a vast amount of literature concerning chronic illness self-management, however the developmental patterns and sustainability of self-management over time remain largely unknown. This paper aims to describe the patterns by which different chronic illness self-management behaviors develop and are maintained over time. Method Twenty-one individuals newly diagnosed with chronic illnesses (e.g., diabetes, rheumatism, ischemic heart disease, multiple sclerosis, chronic renal disease, inflammatory bowel disease) were repeatedly interviewed over two-and-a-half years. The interviews were conducted in Sweden from 2006 to 2008. A total of 81 narrative interviews were analyzed with an interpretive description approach. Results The participants’ self-management behaviors could be described in four different developmental patterns: consistent, episodic, on demand, and transitional. The developmental patterns were related to specific self-management behaviors. Most participants took long-term medications in a consistent pattern, whereas exercise was often performed according to an episodic pattern. Participants managed health crises (e.g., angina, pain episodes) according to an on demand pattern and everyday changes due to illness (e.g., adaptation of work and household activities) according to a transitional pattern. All of the participants used more than one self-management pattern. Conclusion The findings show that self-management does not develop as one uniform pattern. Instead different self-management behaviors are enacted in different patterns. Therefore, it is likely that self-management activities require support strategies tailored to each behavior’s developmental pattern. PMID:23647658

  18. Chronic illness in the director's office: a pragmatic approach to decision making.

    PubMed

    Tucker, F

    1991-01-01

    This management article is based upon a real life experience and suggests various steps that need to be taken to deal with a chronic illness in the leadership of the professional social work program in a hospital. The organizational support of upper management; the departmental structure; personnel decisions and employee benefits; the program history and current dynamics; and the expertise of the restructured directorship each play a crucial role in shaping the outcome. PMID:2063253

  19. The psychological and social impact of camp for children with chronic illnesses: a systematic review update.

    PubMed

    Moola, F J; Faulkner, G E J; White, L; Kirsh, J A

    2014-09-01

    Advances in medicine have reduced mortality among children with complex medical conditions, resulting in a growing number of young patients living with chronic illnesses. Despite an improved prognosis, these children experience significant psychosocial morbidity, such as depression and anxiety. Therapeutic summer recreation camps have been proposed as an intervention to enhance quality of life among these children. The purpose of this systematic review was to assess the psychosocial impact of camp for children with chronic illnesses. A systematic review of central databases was undertaken using key words, and a rating tool – the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool for Quantitative Studies – was employed to rate methodological quality. 21 studies were included in this systematic review. Although overall methodological quality was weak, camp participation appeared to offer short-term psychosocial benefits on some parameters in children with a variety of chronic illnesses. There was some consistency in improved social outcomes, such as social interaction and acceptance. Based on the available evidence, it is premature to make robust claims regarding the psychosocial impact of camp as a therapeutic intervention. Theoretically informed camp programs, long-term follow-up, and incorporating camp-based messaging into routine hospital care,may enhance the utility of camp as a potential psychosocial intervention in paediatrics. PMID:25250399

  20. Influenza immunization of chronically ill children in pediatric tertiary care hospitals.

    PubMed

    Dubé, Eve; Gagnon, Dominique; Huot, Caroline; Paré, Renée; Jacques, Solange; Kossowski, Alexandra; Quach, Caroline; Landry, Monique

    2014-01-01

    Despite a publicly funded immunization program and continuous promotional efforts, vaccine uptake for seasonal influenza in Quebec (Canada) remains under its goal of 80%. Missed opportunities can explain the low influenza vaccine rates among chronically ill children. To address that, demonstration projects using the live attenuated influenza vaccine (LAIV) were implemented in 3 pediatric tertiary care hospitals to evaluate the feasibility and acceptability of implementing influenza immunization of chronically ill children in hospitals' outpatient clinics. A diary was used to document barriers and enabling factors regarding the implementation, and a questionnaire was distributed to healthcare professionals involved in the project in each hospital. Parent's knowledge, attitudes and behaviors (KAB) about influenza immunization and acceptability of immunization in outpatient clinics were also measured with a questionnaire. As part of the project, 2,478 children were immunized. Enabling factors included the financial support received from Quebec ministry of Health, the nasal mode of administration of the LAIV and the presence of a leader specifically dedicated to influenza immunization. Barriers to influenza immunization in outpatient clinics included difficulties of hiring extra staff to work in immunization clinics and additional tasks added to regular activities of the clinics. Results from both questionnaires illustrated a high level of acceptability of seasonal influenza immunization in hospitals' outpatient clinics by parents and healthcare professionals. Influenza immunization in pediatric tertiary care hospital is an effective way to reach chronically ill children and does not involve major feasibility or acceptability issues. PMID:25483460

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

    PubMed Central

    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

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

    PubMed

    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. PMID:12412147

  3. Reducing Workplace Barriers to Enhance Job Satisfaction: An Important Post-Employment Service for Employees with Chronic Illnesses.

    ERIC Educational Resources Information Center

    Roessler, Richard T.; Rumrill, Phillip D., Jr.

    1998-01-01

    A study of 41 employed people with chronic illness found that job satisfaction was related to accessibility, performance of essential functions, and job mastery. Reduction of workplace barriers to productivity through job accommodation and career counseling is needed. (SK)

  4. The Influence of Chronic Illness and Lifestyle Behaviors on Quality of Life among Older Thais

    PubMed Central

    Wongtongkam, Nualnong

    2016-01-01

    Chronic conditions and lifestyle behaviors have a detrimental influence on the quality of life for seniors because of physical disability and emotional concerns. This study aimed to assess the influence of chronic illness, smoking, and alcohol use on quality of life among Thai seniors. A cross-sectional study was conducted in three communities, selected purposively from the North, Northeast, and Central regions, and 1278 senior participants were recruited. Binary logistic regression was used to predict the influence of factors on quality of life with adjusted covariates. Most participants were aged 60–70 years and married, earned 500–1,000 Baht/month (US $17–$35), had one chronic illness, and were nonsmokers and nondrinkers. Surprisingly, there appeared to be no link between chronic conditions and quality of life. Current drinkers were more likely to have a high quality of life, with Odds Ratios of 2.16 for men and 2.73 for women. Seniors of both genders who were current drinkers were more likely to accept death and dying and this improved their quality of life. Social participation in alcohol consumption may encourage seniors to share their concerns about death and dying and eventually accept this as a foundation of life. PMID:27022604

  5. The Influence of Chronic Illness and Lifestyle Behaviors on Quality of Life among Older Thais.

    PubMed

    Somrongthong, Ratana; Hongthong, Donnapa; Wongchalee, Sunanta; Wongtongkam, Nualnong

    2016-01-01

    Chronic conditions and lifestyle behaviors have a detrimental influence on the quality of life for seniors because of physical disability and emotional concerns. This study aimed to assess the influence of chronic illness, smoking, and alcohol use on quality of life among Thai seniors. A cross-sectional study was conducted in three communities, selected purposively from the North, Northeast, and Central regions, and 1278 senior participants were recruited. Binary logistic regression was used to predict the influence of factors on quality of life with adjusted covariates. Most participants were aged 60-70 years and married, earned 500-1,000 Baht/month (US $17-$35), had one chronic illness, and were nonsmokers and nondrinkers. Surprisingly, there appeared to be no link between chronic conditions and quality of life. Current drinkers were more likely to have a high quality of life, with Odds Ratios of 2.16 for men and 2.73 for women. Seniors of both genders who were current drinkers were more likely to accept death and dying and this improved their quality of life. Social participation in alcohol consumption may encourage seniors to share their concerns about death and dying and eventually accept this as a foundation of life. PMID:27022604

  6. Anxiety and depression in mothers and fathers of a chronically ill child.

    PubMed

    van Oers, H A; Haverman, L; Limperg, P F; van Dijk-Lokkart, E M; Maurice-Stam, H; Grootenhuis, M A

    2014-10-01

    We aimed to determine the levels of anxiety and depression in mothers and fathers of a chronically ill child (0-18 years) and to study which parental and child variables are associated with anxiety and depression. In a cross-sectional design, anxiety and depression were assessed with the Hospital Anxiety and Depression Scale. Scores were compared to a Dutch reference group by analysis of variance and logistic regression analysis. Linear regression analyses were performed to examine which variables were associated with anxiety and depression. Mothers of a chronically ill child (n = 566) scored significantly higher than the reference group (p < .001) on anxiety (Mean 5.9 vs 4.8) and depression (Mean 4.5 vs 3.1). Fathers (n = 123) had higher depression scores (Mean 4.5 vs 3.6; p < .05), but fathers' anxiety scores were comparable to the reference group. The percentages of mothers in the clinical range of anxiety (31.8 vs 20.7 %, OR 2.03, 95 % CI 1.46-2.83) and depression (23.0 vs 12.0 %, OR 2.76, 95 % CI 1.84-4.13) were higher (p < .001) than in the reference group. No differences were found for fathers in the clinical range for anxiety and depression. Practical problems in daily life (a: β = .33, d: β = .25) and parenting stress (a: β = .30, d: β = .32) showed the strongest association with anxiety and depression for parents as a group. Illness-related characteristics of the child were not related. Parents of a chronically ill child, especially mothers, reported high levels of anxiety and depression. Awareness about parental anxiety and depression in pediatrics is important as well as targeted interventions. PMID:24791971

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

    PubMed Central

    2010-01-01

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

  8. From Controlling to Letting Go: What Are the Psychosocial Needs of Parents of Adolescents with a Chronic Illness?

    ERIC Educational Resources Information Center

    Akre, Christina; Suris, Joan-Carles

    2014-01-01

    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.…

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

    PubMed Central

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

    2012-01-01

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

  10. Physicians’ Decision Making Roles for an Acutely Unstable Critically and Terminally Ill Patient

    PubMed Central

    Uy, Jamie; White, Douglas B.; Mohan, Deepika; Arnold, Robert M.; Barnato, Amber E.

    2013-01-01

    Background There is substantial variation in use of life sustaining technologies in patients near the end of life but little is known about variation in physicians’ initial ICU admission and intubation decision making processes. Objective To describe variation in hospital-based physicians’ communication behaviors and decision making roles for ICU admission and intubation decisions for an acutely unstable critically and terminally ill patient. Methods We conducted a secondary analysis of transcribed simulation encounters from a multi-center observational study of physician decision making. The simulation depicted a 78 year-old man with metastatic gastric cancer and life threatening hypoxia. He has stable underlying preferences against ICU admission and intubation that he or his wife will report if asked. We coded encounters for communication behaviors (providing medical information, eliciting preferences/values, engaging the patient/surrogate in deliberation, and providing treatment recommendations) and used a previously-developed framework to classify subject physicians into four mutually-exclusive decision-making roles: informative (providing medical information only), facilitative (information + eliciting preferences/values + guiding surrogate to apply preferences/values), collaborative (information + eliciting + guiding + making a recommendation) and directive (making an independent treatment decision). Subjects 24 emergency physicians, 37 hospitalists, and 37 intensivists from 3 US academic medical centers. Results Subject physicians average 12.4 (SD 9.0) years since graduation from medical school. 38/98(39%) physicians sent the patient to the ICU, and 9/98(9%) ultimately decided to intubate. Most (93/98 (95%)) provided at least some medical information, but few explained the short-term prognosis with (26/98 (27%)) or without intubation (37/98 (38%)). Many (80/98 (82%)) elicited the patient's intubation preferences, but few (35/98 (36%)) explored the

  11. Recruiting Terminally Ill Patients into Non-Therapeutic Oncology Studies: views of Health Professionals

    PubMed Central

    2012-01-01

    Background Non-therapeutic trials in which terminally ill cancer patients are asked to undergo procedures such as biopsies or venipunctures for research purposes, have become increasingly important to learn more about how cancer cells work and to realize the full potential of clinical research. Considering that implementing non-therapeutic studies is not likely to result in direct benefits for the patient, some authors are concerned that involving patients in such research may be exploitive of vulnerable patients and should not occur at all, or should be greatly restricted, while some proponents doubt whether such restrictions are appropriate. Our objective was to explore clinician-researcher attitudes and concerns when recruiting patients who are in advanced stages of cancer into non-therapeutic research. Methods We conducted a qualitative exploratory study by carrying out open-ended interviews with health professionals, including physicians, research nurses, and study coordinators. Interviews were audio-recorded and transcribed. Analysis was carried out using grounded theory. Results The analysis of the interviews unveiled three prominent themes: 1) ethical considerations; 2) patient-centered issues; 3) health professional issues. Respondents identified ethical issues surrounding autonomy, respect for persons, beneficence, non-maleficence, discrimination, and confidentiality; bringing to light that patients contribute to science because of a sense of altruism and that they want reassurance before consenting. Several patient-centered and health professional issues are having an impact on the recruitment of patients for non-therapeutic research. Facilitators were most commonly associated with patient-centered issues enhancing communication, whereas barriers in non-therapeutic research were most often professionally based, including the doctor-patient relationship, time constraints, and a lack of education and training in research. Conclusions This paper aims to

  12. Comparing and improving chronic illness primary care in Sweden and the USA.

    PubMed

    Øvretveit, John; Ramsay, Patricia; Shortell, Stephen M; Brommels, Mats

    2016-06-13

    Purpose - The purpose of this paper is to identify opportunities for improving primary care services for people with chronic illnesses by comparing how Sweden and US services use evidence-based practices (EBPs), including digital health technologies (DHTs). Design/methodology/approach - A national primary healthcare center (PHCC) heads surveys in 2012-2013 carried out in both countries in 2006. Findings - There are large variations between the two countries. The largest, regarding effective DHT use in primary care centers, were that few Swedish primary healthcare compared to US heads reported having reminders or prompts at the point of care (38 percent Sweden vs 84 percent USA), despite Sweden's established electronic medical records (EMR). Swedish heads also reported 30 percent fewer centers receiving laboratory results (67 percent Sweden vs 97 percent USA). Regarding following other EBPs, 70 percent of Swedish center heads reported their physicians had easy access to diabetic patient lists compared to 14 percent in the USA. Most Swedish PHCC heads (96 percent) said they offered same day appointment compared to 36 percent in equivalent US practices. Practical implications - There are opportunities for improvement based on significant differences in effective practices between the countries, which demonstrates to primary care leaders that their peers elsewhere potentially provide better care for people with chronic illnesses. Some improvements are under primary care center control and can be made quickly. There is evidence that people with chronic illnesses in these two countries are suffering unnecessarily owing to primary care staff failing to provide proven EBP, which would better meet patient needs. Public finance has been invested in DHT, which are not being used to their full potential. Originality/value - The study shows the gaps between current and potential proven effective EBPs for services to patients with chronic conditions. Findings suggest possible

  13. Parent-Child Collaborative Decision Making for the Management of Chronic Illness: A Qualitative Analysis

    PubMed Central

    Miller, Victoria A.

    2010-01-01

    Parent-child collaborative decision making (CDM) is a potentially important precursor to full decision making independence and may be particularly significant for the management of childhood chronic illnesses. The primary aim of this qualitative study was to explore the concept of CDM from the perspective of children and parents. Children (ages 8-19 years) with asthma, type 1 diabetes, or cystic fibrosis and parents of children with these illnesses participated in focus groups and individual interviews. Participants described various ways they collaborate with one another (e.g., asking for the other's opinion; providing information). Participants viewed collaboration as beneficial, regardless of who ultimately makes the decision. Several factors emerged as potential predictors of CDM, including parent/family factors (e.g., parental time; parent-child conflict), child factors (e.g., maturity; emotional/behavioral functioning), and decision/situation factors (e.g., seriousness of the decision; extent to which the child is experiencing symptoms). These data suggest ways to enhance collaborative decision making interactions between children with a chronic illness and their parents, as well as several areas for future quantitative research. PMID:19803619

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

    PubMed Central

    Jors, Karin; Baumann, Klaus

    2015-01-01

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

  15. An 81-year-old woman with chronic illnesses and a strong faith.

    PubMed

    Harris, Susie T; Koenig, Harold G

    2016-03-01

    Mrs. Smith is an 81-year-old woman who has several medical problems. Despite these problems, however, her faith and spirituality strength give her the strength and determination to move forward in life. She stresses that, "My faith helps me cope with my illnesses." This article describes Mrs. Smith's roller coaster life and how faith, prayer, and hope have allowed her to continue to press forward. She interprets pain and illnesses as challenges, not obstacles. Her physician who has been treating her for about 20 years indicates that she has continued to have multiple chronic health issues and has maintained an incredibly positive spirit, particularly when traditional medicine has failed to make a difference. Spiritual care is being increasingly documented as an important component of whole person medicine. For some, religiosity and spirituality are important aspects of patient-provider relationship. God, faith, and hope are essential factors to Mrs. Smith who uses spirituality and religion daily to cope with her chronic illnesses. PMID:26461846

  16. Parent-child collaborative decision making for the management of chronic illness: a qualitative analysis.

    PubMed

    Miller, Victoria A

    2009-09-01

    Parent-child collaborative decision making (CDM) is a potentially important precursor to full decision-making independence and may be particularly significant for the management of childhood chronic illnesses. The primary aim of this qualitative study was to explore the concept of CDM from the perspective of children and parents. Children (ages 8-19 years) with asthma, type 1 diabetes, or cystic fibrosis and parents of children with these illnesses participated in focus groups and individual interviews. Participants described various ways they collaborate with one another (e.g., asking for the other's opinion; providing information). Participants viewed collaboration as beneficial, regardless of who ultimately makes the decision. Several factors emerged as potential predictors of CDM, including parent/family factors (e.g., parental time; parent-child conflict), child factors (e.g., maturity; emotional/behavioral functioning), and decision/situation factors (e.g., seriousness of the decision; extent to which the child is experiencing symptoms). These data suggest ways to enhance collaborative decision-making interactions between children with a chronic illness and their parents, as well as several areas for future quantitative research. PMID:19803619

  17. Problem behavior in children of chronically ill parents: a meta-analysis.

    PubMed

    Sieh, D S; Meijer, A M; Oort, F J; Visser-Meily, J M A; Van der Leij, D A V

    2010-12-01

    The aim of this meta-analysis is to examine whether children of chronically ill parents differ from norm groups in problem behavior. We report moderator effects and overall effect sizes for internalizing, externalizing and total problem behavior assessed by children and parents. In fixed effect models, we found a significant overall effect size for internalizing problem behavior (number of studies k = 19, total sample size N = 1,858, Cohen's d = .23, p < .01) and externalizing problem behavior (k = 13, N = 1,525, d = .09, p < .01) but not for total problem behavior (k = 7; N = 896). Effects for internalizing and externalizing problem behavior were larger in non-cancer studies, in samples including younger children and younger ill parents, in samples defined by low average SES and in studies including parents with longer illness duration. In addition, effects for externalizing problem behavior were larger in studies characterized by a higher percentage of ill mothers and single parents. With exclusive self-report, effect sizes were significant for all problem behaviors. Based on these results, a family-centered approach in health care is recommended. PMID:20640510

  18. [Is vocational integration in the competitive labor market a realistic goal for the chronically mentally ill?].

    PubMed

    Hoffmann, H

    1999-09-01

    A wide range of sheltered jobs has been created in the second or special labour market with the aim of enabling the chronically mentally ill to participate in working life. However, having a job in the special labour market often precludes the chance of obtain-ing employment in the competitive labour market. To date, vocational integration programs enable only a small number of persons with psychiatric disabilities to attain reintegration into competitive employment. The predictors of successful vocational integration are subsequently discussed. A substantial increase in both sheltered and competitive jobs on the common labour market could be achieved for mentally ill and disabled people by adapting the "supported employment" model, as widely practised in the USA, to European labour market standards and appropriately funding its implementation. The utilisation of this model could serve to reduce the necessity of further expansion in the special labour market. PMID:10535087

  19. Use of Social Comparisons in Interviews About Young Adults’ Experiences of Chronic Illness

    PubMed Central

    2015-01-01

    In this article I examine how young adults used social comparisons in research interviews about their experiences of chronic illness. The interviews were originally conducted not only to provide data for academic analysis but also to generate experiential accounts for publication online as part of an Internet-based health information resource for patients, professionals, and the public wanting to learn about people’s real-life experiences of illness in the United Kingdom. Through secondary analysis of these data, I show how the young adults used various social comparisons to represent themselves and their experiences to the target audience. Two new concepts—analogues and foils—are introduced to describe how the young adults likened themselves to, and contrasted themselves with, different reference groups in their accounts. Through these and related strategies, they created positive renditions of their experiences for the audience, helping to inform and support others in the process. PMID:25281241

  20. Neurobehavioral deficits associated with chronic fatigue syndrome in veterans with Gulf War unexplained illnesses.

    PubMed

    Binder, L M; Storzbach, D; Campbell, K A; Rohlman, D S; Anger, W K

    2001-11-01

    Gulf War unexplained illnesses (GWUI) are a heterogeneous collection of symptoms of unknown origin known to be more common among veterans of the Gulf War than among nonveterans. In the present study we focused on one of these unexplained illnesses. We tested the hypothesis that in a sample of Persian Gulf War veterans chronic fatigue syndrome (CFS) was associated with cognitive deficits on computerized cognitive testing after controlling for the effects of premorbid cognitive differences. We obtained Armed Forces Qualification Test (AFQT) data acquired around the date of induction into the military on 94 veterans of the Gulf War, 32 with CFS and 62 healthy controls. Controls performed better than participants diagnosed with CFS on the AFQT. Cognitive deficits were associated with CFS on 3 of 8 variables after the effect of premorbid AFQT scores was removed with ANCOVA. PMID:11771626

  1. Health-Related Financial Catastrophe, Inequality and Chronic Illness in Bangladesh

    PubMed Central

    Rahman, Md. Mizanur; Gilmour, Stuart; Saito, Eiko; Sultana, Papia; Shibuya, Kenji

    2013-01-01

    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 reducing the health

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

    PubMed Central

    Webster, Kimberly; Cella, David; Yost, Kathleen

    2003-01-01

    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. PMID:14678568

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

    ERIC Educational Resources Information Center

    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. The Pursuit of Preventive Care for Chronic Illness: Turning Healthy People into Chronic Patients

    PubMed Central

    Kreiner, Meta J.; Hunt, Linda M.

    2013-01-01

    Preventive health care has become prominent in clinical medicine in the United States, emphasizing risk assessment and control, rather than addressing the signs and symptoms of pathology. Current clinical guidelines, reinforced by evidence-based decision aids and quality of care assessment, encourage clinicians to focus on maintaining rigid test thresholds which are based on population norms. While achieving these goals may benefit the total population, this may be of no benefit or even harmful to individual patients. In order to explore how this phenomenon is manifest in clinical care, and consider some factors that promote and sustain this trend, we analyze observations of over 100 clinical consultations, and open-ended interviews with 58 primary care clinicians and 70 of their patients. Both clinicians and patients equated at-risk states with illness, and viewed the associated interventions not as prevention, but as treatment. This conflation of risk and disease redefines clinical success such that reducing the threat of anticipated future illness requires acceptance of aggressive treatments and any associated adverse effects in the present. While the expanding emphasis on preventive medicine may improve the health profile of the total population, the implications of these innovations for the well-being of individual patients merits careful reconsideration. PMID:24372285

  5. The pursuit of preventive care for chronic illness: turning healthy people into chronic patients.

    PubMed

    Kreiner, Meta J; Hunt, Linda M

    2014-07-01

    Preventive health care has become prominent in clinical medicine in the US, emphasising risk assessment and control, rather than addressing the signs and symptoms of pathology. Current clinical guidelines, reinforced by evidence-based decision aids and quality of care assessment, encourage clinicians to focus on maintaining rigid test thresholds that are based on population norms. While achieving these goals may benefit the total population, this may be of no benefit or even harmful to individual patients. In order to explore how this phenomenon is manifested in clinical care and consider some factors that promote and sustain this trend, we analysed observations of over 100 clinical consultations, and open-ended interviews with 58 primary care clinicians and 70 of their patients. Both clinicians and patients equated at-risk states with illness and viewed the associated interventions not as prevention, but as treatment. This conflation of risk and disease redefines clinical success such that reducing the threat of anticipated future illness requires the acceptance of aggressive treatments and any associated adverse effects in the present. While the expanding emphasis on preventive medicine may improve the health profile of the total population, the implications of these innovations for the wellbeing of individual patients merits careful reconsideration. PMID:24372285

  6. "Is it half full or half empty?" Affective responses to chronic illness.

    PubMed

    Silverman, Myrna; Nutini, Jean; Musa, Donald; Schoenberg, Nancy E; Albert, Steven M

    2009-09-01

    Using a combined qualitative/quantitative approach, we interviewed 132 older African-Americans and whites with either osteoarthritis of the hip or knee (OAK/OAH) or ischemic heart disease (IHD) to address two questions: 1) What types of reactions to illness are expressed by this group of older adults who have OA or IHD? 2)? Are there differences in the characteristics of the respondents who respond more positively than those who respond more negatively? The responses were coded to illustrate those that reflected positive, negative, or combined (positive/negative) statements. The majority of the respondents, who were categorized as positive or combined, approached the illness experience with statements illustrating their ability to cope with their illness and adapt their lifestyles to the limitations imposed by the disease such as acceptance, feeling that others were worse off, or changing their lifestyles to adapt to their limitations. Those expressing negative reactions to their illness were fewer in number and responded with terms reflecting loss of identity, physical limitations, and other disease symptoms. The differences were more pronounced between the positive and negative groups where the latter were somewhat more likely to be African-American and female and significantly more likely to have less income, greater perceived disease severity, and more disability. We should look to the larger group in both the positive only and combined responses to explore how culture may play a role in perceptions of subjective well-being and the importance of "the local worlds of experience" experienced by both men and women, and African-Americans and whites. This study illustrates that using a simple, open-ended question that stimulates older people to narrate their reactions to having a chronic illness may allow clinicians to identify the persons most at-risk and intervene appropriately. PMID:19340567

  7. “Is it Half Full or Half Empty?” Affective Responses to Chronic Illness

    PubMed Central

    Silverman, Myrna; Nutini, Jean; Musa, Donald; Schoenberg, Nancy E.; Albert, Steven M.

    2009-01-01

    Using a combined qualitative/quantitative approach, we interviewed 132 older African–Americans and whites with either osteoarthritis of the hip or knee (OAK/OAH) or ischemic heart disease (IHD) to address two questions: 1) What types of reactions to illness are expressed by this group of older adults who have OA or IHD? 2)? Are there differences in the characteristics of the respondents who respond more positively than those who respond more negatively? The responses were coded to illustrate those that reflected positive, negative, or combined (positive/negative) statements. The majority of the respondents, who were categorized as positive or combined, approached the illness experience with statements illustrating their ability to cope with their illness and adapt their lifestyles to the limitations imposed by the disease such as acceptance, feeling that others were worse off, or changing their lifestyles to adapt to their limitations. Those expressing negative reactions to their illness were fewer in number and responded with terms reflecting loss of identity, physical limitations, and other disease symptoms. The differences were more pronounced between the positive and negative groups where the latter were somewhat more likely to be African–American and female and significantly more likely to have less income, greater perceived disease severity, and more disability. We should look to the larger group in both the positive only and combined responses to explore how culture may play a role in perceptions of subjective well-being and the importance of “the local worlds of experience” experienced by both men and women, and African–Americans and whites. This study illustrates that using a simple, open-ended question that stimulates older people to narrate their reactions to having a chronic illness may allow clinicians to identify the persons most at-risk and intervene appropriately. PMID:19340567

  8. [Effect of exercise training on rehabilitation of the chronic critical illness patients].

    PubMed

    Gu, Guosheng; Ren, Jianan

    2016-07-01

    Over the past decades, the evolution of the techniques used in the intensive care has led on one side to better survival rates in ICU patients. On the other side, it has resulted in a growing number of patients who survive an acute event to chronic condition, and who then become dependent on one or more life support treatments. Such patients are called chronic critical illness(CCI) patients. Even these patients can dismiss from intensive care unit (ICU) or transfer to specialized rehabilitation care settings, the mortality of these patients is still very high. Therefore, how to promote the rehabilitation of CCI patients is one of the most important research points of epidemiology, public health and social economics. Exercise training can promote rehabilitation, improve quality of life and independent functional status in these patients, which should be used as one of the standard treatment protocols for CCI patients. PMID:27452749

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

    PubMed

    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. PMID:15465395

  10. Chronic Illness with Complexity: Implications for Performance Measurement of Optimal Glycemic Control

    PubMed Central

    Helmer, Drew; Rajan, Mangala; Tseng, Chin-Lin; Pogach, Leonard; Sambamoorthi, Usha

    2007-01-01

    OBJECTIVE To evaluate the association between chronic illness with complexity (CIC) and optimal glycemic control. PARTICIPANTS Cross-sectional and longitudinal analyses of Diabetes Epidemiologic Cohort database of Veterans Health Administration (VHA) users with diabetes, less than 75 years old, with HbA1c tests in fiscal year (FY) 1999 and 2000, alive at FY2000 end (N = 95,423). DESIGN/MEASUREMENTS Outcomes were HbA1c < 7% in each FY. CIC included three domains: nondiabetes physical illness, diabetes-related, and mental illness/substance abuse conditions. Other independent variables included age, gender, race, marital status, VHA priority status, and diabetes severity. Longitudinal analyses were restricted to patients with HbA1c ≥ 7% in FY1999 and included hospitalizations between final HbA1c’s in FY1999 and FY2000. Multiple logistic regressions examined associations between CIC categories and HbA1c. RESULTS In FY1999, 33% had HbA1c <7%. In multivariate analyses, patients with nondiabetes physical illness and mental illness/substance abuse were more likely to have HbA1c <7% in FY1999 [adjusted odds ratios for cancer (AOR), 1.31; 95% CI (1.25–1.37); mental illness only, 1.18; 95% CI (1.14–1.22)]. Those with diabetes-related complications were less likely to have HbA1c <7% in FY1999. Associations generally held in FY2000. However, conditions in the mental illness/substance abuse complexity domain were less strongly associated with HbA1c <7%. Macrovascular-related hospitalizations were positively associated with HbA1c <7% [AOR, 1.41; 95% CI (1.34–1.49)]. CONCLUSIONS The association between CIC and HbA1c <7% is heterogeneous and depends on the domain of complexity. The varying associations of CIC categories with optimal glycemic control suggest the need for appropriate risk adjustment when using HbA1c <7% as a valid performance measure for diabetes quality of care. PMID:18026810

  11. In search of attachment: a qualitative study of chronically ill women transitioning between family physicians in rural Ontario, Canada

    PubMed Central

    2012-01-01

    Background Most Canadians receive basic health services from a family physician and these physicians are particularly critical in the management of chronic disease. Canada, however, has an endemic shortage of family physicians. Physician shortages and turnover are particularly acute in rural regions, leaving their residents at risk of needing to transition between family physicians. The knowledge base about how patients manage transitioning in a climate of scarcity remains nascent. The purpose of this study is to explore the experience of transitioning for chronically ill, rurally situated Canadian women to provide insight into if and how the system supports transitioning patients and to identify opportunities for enhancing that support. Methods Chronically ill women managing rheumatic diseases residing in two rural counties in the province of Ontario were recruited to participate in face-to-face, semi-structured interviews. Interview transcripts were analysed thematically to identify emergent themes associated with the transitioning experience. Results Seventeen women participated in this study. Ten had experienced transitioning and four with long-standing family physicians anticipated doing so soon. The remaining three expressed concerns about transitioning. Thematic analysis revealed the presence of a transitioning trajectory with three phases. The detachment phase focused on activities related to the termination of a physician-patient relationship, including haphazard notification tactics and the absence of referrals to replacement physicians. For those unable to immediately find a new doctor, there was a phase of unattachment during which patients had to improvise ways to receive care from alternative providers or walk-in clinics. The final phase, attachment, was characterized by acceptance into the practice of a new family physician. Conclusions Participants often found transitioning challenging, largely due to perceived gaps in support from the health care

  12. A patient-centred approach to health service delivery: improving health outcomes for people with chronic illness

    PubMed Central

    2013-01-01

    Background The Wagner Model provides a framework that can help to facilitate health system transition towards a chronic care oriented model. Drawing on elements of this framework as well as health policy related to patient centred care, we describe the health needs of patients with chronic illness and compare these with services which should ideally be provided by a patient-centred health system. This paper aims to increase understanding of the challenges faced by chronically ill patients and family carers in relation to their experiences with the health care system and health service providers. Method We interviewed patients, carers and health care professionals (HCPs) about the challenges faced by people living with complicated diabetes, chronic heart failure or chronic obstructive pulmonary disease. Results Patients indicated that they had a range of concerns related to the quality of health care encounters with health care professionals (HCPs), with these concerns being expressed as needs or wants. These included: 1) the need for improved communication and information delivery on the part of HCPs; 2) well organised health services and reduced waiting times to see HCPs; 3) help with self care; 4) greater recognition among professionals of the need for holistic and continuing care; and 5) inclusion of patients and carers in the decision making processes. Conclusions In order to address the challenges faced by people with chronic illness, health policy must be more closely aligned with the identified needs and wants of people affected by chronic illness than is currently the case. PMID:23819721

  13. Impact of Palliative Care Consultation Service on Terminally Ill Cancer Patients: A 9-Year Observational Cohort Study in Taiwan.

    PubMed

    Lu, Ching-Yi; Shen, Wen-Chi; Kao, Chen-Yi; Wang, Hung-Ming; Tang, Shu-Chuan; Chin, Tsu-Ling; Chi, Chuan-Chuan; Yang, Jin-Mei; Chang, Chih-Wen; Lai, Ying-Fen; Yeh, Ya-Chi; Hung, Yu-Shin; Chou, Wen-Chi

    2016-03-01

    The palliative care consultation service (PCCS) that has been enthusiastically promoted in Taiwan since 2005 was designed to provide comprehensive end-of-life care for terminally ill patients with qualified interdisciplinary specialists in acute care ward setting. This study aims to evaluate the impact of PCCS on terminally ill cancer patients.A total of 10,594 terminal cancer patients who were referred to PCCS from a single medical center in Taiwan between 2006 and 2014 were enrolled. The percentages of patients' and their families' disease awareness, do-not-resuscitate (DNR) designation, refusal and acceptance of palliative care among terminally ill cancer patients were analyzed retrospectively.At the beginning of PCCS, the percentages of disease awareness among patients and their family were increased from 25.4% to 37.9% (P = 0.007) and from 61.2% to 84.7% between 2006 and 2014 (P = 0.001), respectively. Patients' disease awareness after PCCS referral between 2006 and 2014 was increased from 47.1% to 64.5% (P = 0.016). Family's awareness of diagnosis and prognosis after PCCS referral researched to a steady plateau, 94.1% to 97.8% in different year cohort (P = 0.34). The percentage of DNR designation rate at the beginning of PCCS (in 2006) was 15.5%, and the designation rate was increased annually and finally reached to 42.0% in 2014 (P = 0.004). The percentage of DNR consents after PCCS was also improved from 44.0% in 2006 up to 80.0% in 2014 (P = 0.005). PCCS refusal rate decreased gradually and dropped to 1.6% in 2014 (P = 0.005). The percentage of PCCS utilization was increased 5-fold during the 9-year period after the promotion of PCCSIn the program of PCCS promotion, an increasing trend of PCCS utilization, better patients' and their families' awareness of diagnosis and prognosis, more consent to DNR, more patients were discharged with stable condition at the end of PCCS and a decrease refusal rate of end-of-life palliative care

  14. Diverticular disease as a chronic illness: evolving epidemiologic and clinical insights.

    PubMed

    Strate, Lisa L; Modi, Rusha; Cohen, Erica; Spiegel, Brennan M R

    2012-10-01

    Diverticular disease imposes a significant burden on Western and industrialized societies. The traditional pathogenesis model posits that low dietary fiber predisposes to diverticulosis, and fecalith obstruction prompts acute diverticulitis that is managed with broad-spectrum antibiotics or surgery. However, a growing body of knowledge is shifting the paradigm of diverticular disease from an acute surgical illness to a chronic bowel disorder composed of recurrent abdominal symptoms and considerable psychosocial impact. New research implicates a role for low-grade inflammation, sensory-motor nerve damage, and dysbiosis in a clinical picture that mimics irritable bowel syndrome (IBS) and even inflammatory bowel disease (IBD). Far from being an isolated event, acute diverticulitis may be the catalyst for chronic symptoms including abdominal pain, cramping, bloating, diarrhea, constipation, and "post-diverticulitis IBS." In addition, studies reveal lower health-related quality of life in patients with chronic diverticular disease vs. controls. Health-care providers should maintain a high index of suspicion for the multifaceted presentations of diverticular disease, and remain aware that it might contribute to long-term emotional distress beyond traditional diverticulitis attacks. These developments are prompting a shift in therapeutic approaches from widespread antimicrobials and supportive care to the use of probiotics, mesalamine, and gut-directed antibiotics. This review addresses the emerging literature regarding epidemiology, pathophysiology, and management of chronic, symptomatic diverticular disease, and provides current answers to common clinical questions. PMID:22777341

  15. To Trach or not to Trach: Uncertainty in the Care of the Chronically Critically Ill

    PubMed Central

    Bice, Thomas; Nelson, Judith E.; Carson, Shannon S.

    2016-01-01

    The number of chronically critically ill patients requiring prolonged mechanical ventilation and receiving a tracheostomy is steadily increasing. Early tracheostomy in patients requiring prolonged mechanical ventilation has been proposed to decrease duration of mechanical ventilation and ICU stay, reduce mortality, and improve patient comfort. However, these benefits have been difficult to demonstrate in clinical trials. So how does one determine the appropriate timing for tracheostomy placement in your patient? Here we review the potential benefits and consequences of tracheostomy, the available evidence for tracheostomy timing, communication surrounding the tracheostomy decision, and a patient-centered approach to tracheostomy. Patients requiring >10 days of mechanical ventilation who are expected to survive their hospitalization likely benefit from tracheostomy, but protocols involving routine early tracheostomy placement do not improve patient outcomes. However patients with neurologic injury, provided they have a good prognosis for meaningful recovery, may benefit from early tracheostomy. In chronically critically ill patients with poor prognosis, tracheostomy is unlikely to provide benefit and should only be pursued if it is consistent with the patient's values, goals and preferences. In this setting, communication with patients and surrogates regarding tracheostomy and prognosis becomes paramount. For the foreseeable future, decisions surrounding tracheostomy will remain relevant and challenging. PMID:26595045

  16. Meta-Analysis of Patient Education Interventions to Increase Physical Activity among Chronically Ill Adults

    PubMed Central

    Conn, Vicki S.; Hafdahl, Adam R.; Brown, Sharon A.; Brown, Lori M.

    2008-01-01

    Objective This meta-analysis integrates primary research testing the effect of patient education to increase physical activity (PA) on behavior outcomes among adults with diverse chronic illnesses. Methods Extensive literature searching strategies located published and unpublished intervention studies that measured PA behavior outcomes. Primary study results were coded. Fixed- and random-effects meta-analytic procedures included moderator analyses. Results Data were synthesized across 22,527 subjects from 213 samples in 163 reports. The overall mean weighted effect size for two-group comparisons was 0.45 (higher mean for treatment than control). This effect size is consistent with a difference of 48 minutes of PA per week or 945 steps per day. Preliminary moderator analyses suggest interventions were most effective when they targeted only PA behavior, used behavioral strategies (vs. cognitive strategies), and encouraged PA self-monitoring. Differences among chronic illnesses were documented. Individual strategies unrelated to PA outcomes included supervised exercise sessions, exercise prescription, fitness testing, goal setting, contracting, problem solving, barriers management, and stimulus/cues. PA outcomes were unrelated to gender, age, ethnicity, or socioeconomic distribution among samples. Conclusion These findings suggest that some patient education interventions to increase PA are effective, despite considerable heterogeneity in the magnitude of intervention effect. Practice Implications Moderator analyses are preliminary and provide suggestive evidence for further testing of interventions to inform practice. PMID:18023128

  17. [Prevention and management of refeeding syndrome in patients with chronic critical illness].

    PubMed

    Chen, Jun; Fan, Chaogang

    2016-07-01

    Nutritional support is an important means to treat the patients with chronic critical illness for commonly associated malnutrition. Refeeding syndrome is a serious complication during the process, mainly manifested as severe electrolyte with hypophosphataemia being the most common. Refeeding syndrome is not uncommon but it is often ignored. In our future clinical work, we need to recognize this chinical situation and use preventative and treatment measures. According to NICE clinical nutrition guideline, we discussed the risk factors, treatment methods and preventive measures of refeeding syndrome in patients with chronic critical illness. We argued that for patients with high risk refeeding syndrome, nutritional support treatment should be initially low calorie and slowly increased to complete requirement. Circulation capacity should be recovered, fluid balance must be closely monitored and supplement of vitamins, microelement, electrolytes should be noted. After the emergence of refeeding syndrome, we should reduce or even stop the calorie intake, give an active treatment for electrolyte disorder, provide vitamin B, and maintain the functions of multiple organs. PMID:27452747

  18. Adaptation and validation of the patient assessment of chronic illness care in the French context

    PubMed Central

    2014-01-01

    Background Chronic diseases are major causes of disability worldwide with rising prevalence. Most patients suffering from chronic conditions do not always receive optimal care. The Chronic Care Model (CCM) has been developed to help general practitioners making quality improvements. The Patient Assessment of Chronic Illness Care (PACIC) questionnaire was increasingly used in several countries to appraise the implementation of the CCM from the patients’ perspective. The objective of this study was to adapt the PACIC questionnaire in the French context and to test the validity of this adaptation in a sample of patients with multiple chronic conditions. Methods The PACIC was translated into French language using a forward/backward procedure. The French version was validated using a sample of 150 patients treated for obstructive sleep apnea syndrome (OSAS) and having multiple chronic co-morbidities. Several forms of validity were analysed: content; face; construct; and internal consistency. The construct validity was investigated with an exploratory factorial analysis. Results The French-version of the PACIC consisted in 18 items, after merging two pairs of items due to redundancy. The high number of items exhibiting floor/ceiling effects and the non-normality of the ratings suggested that a 5-points rating scale was somewhat inappropriate to assess the patients’ experience of care. The construct validity of the French-PACIC was verified and resulted in a bi-dimensional structure. Overall this structure showed a high level of internal consistency. The PACIC score appeared to be significantly related to the age and self-reported health of the patients. Conclusions A French-version of the PACIC questionnaire is now available to evaluate the patients’ experience of care and to monitor the quality improvements realised by the medical structures. This study also pointed out some methodological issues about the PACIC questionnaire, related to the format of the rating

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

    PubMed

    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

  20. Fatigue secondary to chronic illness: postpolio syndrome, chronic fatigue syndrome, and multiple sclerosis.

    PubMed

    Packer, T L; Sauriol, A; Brouwer, B

    1994-10-01

    Estimates of the percentage of patients with postpolio syndrome, chronic fatigue syndrome, and multiple sclerosis who experience fatigue range from approximately 75% to 100%. In this study we describe the severity of fatigue and its impact on subjects with these three diagnoses. The Fatigue Severity Scale, the Human Activity Profile, and the Nottingham Health Profile were used to measure fatigue, activity, and health status respectively of each diagnostic group as well as a control group. Using a Kruskal-Wallis one-way analysis of variance followed by a Bonferroni-adjusted Mann Whitney U test all diagnostic groups reported significantly higher levels (p = .0000 to p = .002) of fatigue and lower perceived health status than the control group. Subjects with chronic fatigue and multiple sclerosis also had significantly reduced activity levels (p = .002 to p = .01) compared with the control group. Further attention should be directed toward understanding the relationship between fatigue and ability to engage in activities as well as strategies for remediation and/or compensation of the fatigue. PMID:7944918

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

    PubMed

    Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

    2016-01-01

    Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as "a shared respite." This main theme included three subthemes: "a place for relief," "a place for reflection," and "a place for re-creation." These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places. PMID:26956097

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

    PubMed Central

    Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

    2016-01-01

    Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as “a shared respite.” This main theme included three subthemes: “a place for relief,” “a place for reflection,” and “a place for re-creation.” These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places. PMID:26956097

  3. A randomized trial of the cost effectiveness of VA hospital-based home care for the terminally ill.

    PubMed

    Hughes, S L; Cummings, J; Weaver, F; Manheim, L; Braun, B; Conrad, K

    1992-02-01

    All admissions to a 1,100-bed Department of Veterans Affairs (VA) hospital were screened to identify 171 terminally ill patients with informal caregivers who were then randomly assigned to VA hospital-based team home care (HBHC, N = 85) or customary care (N = 86). Patient functioning, and patient and caregiver morale and satisfaction with care were measured at baseline, one month, and six months. Health services utilization was monitored over the six-month study period and converted to cost. Findings included no differences in patient survival, activities of daily living (ADL), cognitive functioning, or morale, but a significant increase in patient (p = .02) and caregiver (p = .005) satisfaction with care at one month. A substitution effect of HBHC was seen. Those in the experimental group used 5.9 fewer VA hospital days (p = .03), resulting in a $1,639 or 47 percent per capita saving in VA hospital costs (p = .02). As a result, total per capita health care costs, including HBHC, were $769 or 18 percent (n.s.) lower in the HBHC sample, indicating that expansion of VA HBHC to serve terminally ill veterans would increase satisfaction with care at no additional cost. PMID:1737710

  4. Diagnosis in chronic illness: disabling or enabling--the case of chronic fatigue syndrome.

    PubMed Central

    Woodward, R V; Broom, D H; Legge, D G

    1995-01-01

    This paper examines doctors' and patients' views on the consequences of an increasingly common symptomatic diagnosis, chronic fatigue syndrome (CFS). Two studies were conducted: the first comprised interviews with 20 general practitioners; the second was a longitudinal study, comprising three interviews over a period of 2 years with 50 people diagnosed with CFS. Contrasts were apparent between doctors' practical and ethical concerns about articulating a diagnosis of CFS and patients' experiences with and without such a diagnosis. Seventy per cent of the doctors were reluctant to articulate a diagnosis of CFS. They felt constrained by the scientific uncertainty regarding its aetiology and by a concern that diagnosis might become a disabling self-fulfilling prophecy. Patients, by contrast, highlighted the enabling aspects of a singular coherent diagnosis and emphasized the negative effects of having no explanation for their problems. PMID:7629762

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

    PubMed

    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. PMID:22850308

  6. Iraq and Afghanistan Veterans report symptoms consistent with chronic multisymptom illness one year after deployment.

    PubMed

    McAndrew, Lisa M; Helmer, Drew A; Phillips, L Alison; Chandler, Helena K; Ray, Kathleen; Quigley, Karen S

    2016-01-01

    Many Veterans returning from service in Operation Iraqi Freedom/Operation Enduring Freedom (OIF/OEF) experience chronic pain. What is not known is whether for some OIF/OEF Veterans this pain is part of a larger condition of diffuse multisystem symptoms consistent with chronic multisymptom illness (CMI). We use data from a prospective longitudinal study of OIF/OEF Veterans to determine the frequency of CMI. We found that 1 yr after deployment, 49.5% of OIF/OEF Veterans met criteria for mild to moderate CMI and 10.8% met criteria for severe CMI. Over 90% of Veterans with chronic pain met criteria for CMI. CMI was not completely accounted for either by posttraumatic stress disorder or by predeployment levels of physical symptoms. Veterans with symptoms consistent with CMI reported significantly worse physical health function than Veterans who did not report symptoms consistent with CMI. This study suggests that the presence of CMI should be considered in the evaluation of OIF/OEF Veterans. Further, it suggests the pain management for these Veterans may need to be tailored to take CMI into consideration. PMID:27006173

  7. Screening for anxiety symptoms and social desirability in children and adolescents living with chronic illnesses in Jordan.

    PubMed

    Arabiat, Diana H; Jabery, Mohammad Al; Wardam, Lina

    2013-03-01

    This research aims to investigate the rate and nature of anxiety symptoms in a group of children and adolescents living with chronic illnesses in Jordan, and their relation to social desirability in a cultural sample not previously researched. Using the Revised Children's Manifest Anxiety Scale (R-CMAS), anxiety and social desirability data were obtained from 114 children diagnosed with chronic illnesses and 162 healthy control participants. Based on children's self-report, participants were categorized according to their adaptive style paradigm as either high anxious, low anxious, or repressor. It was proposed that children who score high on social desirability and low on anxiety are repressors. The prevalence of these categories was compared across the two groups. Anxiety was reported in 9.64 percent of the chronic illnesses and 12.34 percent of the healthy peers. Using the data obtained in the present study, the rate and nature of anxiety in children with chronic illnesses were lower for children in Jordan when compared to previous studies. However, social desirability values were similar to those established in Western societies suggesting a significantly higher percentage of children identified as repressors in children with long-term illnesses. These results supported the hypothesis regarding the relationship between social desirability and expressed anxiety symptoms. PMID:23242812

  8. Disclosure preferences about terminal illness: an examination of decision-related factors.

    PubMed

    Marwit, Samuel J; Datson, Susan L

    2002-01-01

    Twenty-six male and 86 female, predominantly White, non-terminal cancer patients addressed preferences for disclosure of terminal prognosis, should their disease advance to that stage. Specific inquiries were made about desired levels of disclosure (full, partial,or non-disclosure) and desired pathways of disclosure (from physician to patient only, from physician to patient in the presence of a loved one, or from physician to loved one only). Gender, previous experience with death, and trait anxiety were associated with level preference. Education, previous experience with death, and trait anxiety were associated with pathway preference.Variables predictive of level and pathway preference were identified, benefits to physicians and patients were explored, and sampling limitations were discussed. PMID:11865880

  9. Caring for family members with chronic physical illness: A critical review of caregiver literature

    PubMed Central

    Lim, Jung-won; Zebrack, Brad

    2004-01-01

    This article reviews 19 studies (1987–2004) on quality of life for family caregivers helping those with chronic physical illness. Here we explore the concepts of and instruments used to measure caregivers' quality of life. We were particularly interested in understanding stress-related variables and documenting factors influencing quality of life based on family stress theory. Findings show that various positive and negative terms equated with quality of life were used to measure them. Results indicate that stress-related variables as possible predictors influencing caregivers' quality of life include: patient and caregiver characteristics, stressors, stress appraisal, stress coping methods, and social support. Our recommendations touch upon applying theory for intervention, developing measurement, making operable the concepts for measuring, and the need for longitudinal and comprehensive study. PMID:15377384

  10. Factors affecting illness in the developing world: chronic disease, mental health and traditional medicine cures.

    PubMed

    Douthit, Nathan T; Astatk, Hailemariam Alemu

    2016-01-01

    This is a case report of a 24-year-old Ethiopian woman with a medical history of hepatosplenic schistosomiasis. She suffers from chronic liver failure and portal hypertension. She has been hospitalised for 'hysteria' in the past but did not receive follow-up, outpatient treatment or psychiatric evaluation. After discontinuing her medications and leaving her family to use holy water, a religious medicine used by many Ethiopians, she was found at a nearby monastery. She was non-communicative and difficult to arouse. The patient was rushed to nearby University of Gondar Hospital where she received treatment for hepatic encephalopathy and spontaneous bacterial peritonitis. Her illness is the result of neglected tropical disease, reliance on traditional medicine as opposed to biomedical services and the poor state of psychiatric care in the developing world. PMID:27485874

  11. [Focus on Siblings of Children with Chronic Illness or Disability - A Family Oriented Counselling Program].

    PubMed

    Möller, Birgit; Schepper, Florian; Herrmann, Jessy; Gude, Marlies

    2016-01-01

    In the psychosocial support of families with a chronically ill or disabled child siblings are increasingly addressed as a target group for prevention and rehabilitation projects intending to reduce the risk for adverse health consequences. The following article presents a childfocused approach to family counselling as a short-term intervention. Ten flexibly applicable counselling core points covering commonly reported problems of affected siblings and their families are available - including the communication about the disease within the family or the expression of the sibling's feelings and needs. For this purpose an approach in specific counselling sessions has been determined which is used similarly by adept child and youth psychotherapists. The counselling approach is founded theoretically. Furthermore, the counselling approach provides guidance for the structured approach in the diagnosis of potential difficulties, the choice of core points and setting, the closure of counseling sessions as well as the recommendation of additional programs. PMID:26758339

  12. Somatization, illness attribution and the sociocultural psychiatry of chronic fatigue syndrome.

    PubMed

    Abbey, S E

    1993-01-01

    In addition to epidemiological and neurobiological perspectives on the relationship between chronic fatigue syndrome (CFS) and psychiatric disorders there has been increasing interest in the role of cognitive-behavioural, psychological, psychodynamic and social factors in the psychiatric aspects of this syndrome. These factors may be important in the initiation and/or maintenance of CFS and play important roles in the misdiagnosis of primary psychopathology as CFS. They may be important targets for intervention and treatment. This paper examines the relevance of the following issues for better understanding the relationship between CFS and the results of psychiatric studies: (1) the concepts of somatization and abnormal illness behaviour; (2) the role of patients' illness attributions; (3) psychological and psychodynamic constructs such as depressive vulnerability occurring in individuals dependent upon achievement for the maintenance of self-esteem and euthymic mood, perfectionism, and helplessness; (4) the role of personality characteristics and styles; (5) the potential iatrogenic role of the health care system in producing disability in individuals with a diagnosis of CFS; (6) the role of the media and other sociocultural forces in the patient's choice of the CFS label; and (7) the impact of the CFS label on the patient. The importance of differentiating between initiating and maintaining or perpetuating factors is emphasized. PMID:8491101

  13. [Psychosocial situation of families with chronically ill children: a survey of parent initiatives].

    PubMed

    Nehring, I; Riedel, C; Baghi, L; Moshammer-Karb, T; Schmid, R; Kries, R V

    2015-02-01

    Children with chronic illness or disabilities and their families require more support than healthy families. The working group "custodial and psychosocial supply" defined 4 theses to figure out deficits and targets of family support: 1) my child is different; 2) my child is not devisable; 3) my child needs strong helpers; and 4) my child needs safety.Based on these theses, a questionnaire for parents was designed of which 20 were sent to 34 parent initiatives in Germany each, for distribution to a random sample of member families.499/680 questionnaires were returned of which 419 could be included in the analysis. Less than 50% of the parents felt adequately and timely informed about their child's condition, and support for coping with the child's diagnosis was rarely given. Less than half of the parents reported to have been informed about the options for support within the German social system, and less than 15% were aware of instructions for clearing houses on care and support. About a third of the parents reported needs for managing family, siblings or household, but only a third of these had been offered organised and structured family support. More than 50% of the families reported restraints in participating in social life: such restraints were associated with problems in partnership and loss of friends. Half of the parents felt restraints of the family income because of their child's condition.There is need for improvement of the psychosocial condition of families with chronically ill or disabled children by better, more and timely information about the child's clinical condition, access to the social support system and availability of support services. PMID:24771100

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

    PubMed

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

    2013-01-01

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

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

    PubMed Central

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

    2016-01-01

    Background Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include interventions directed at the parent only or at parent and child/adolescent, and are designed to improve parent, child, and family outcomes. This is an updated version of the original Cochrane review published in Issue 8, 2012, (Psychological interventions for parents of children and adolescents with chronic illness). Objectives To evaluate the efficacy of psychological therapies that include parents of children and adolescents with chronic illnesses including painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury (TBI), inflammatory bowel diseases (IBD), skin diseases, or gynaecological disorders. We also aimed to evaluate the adverse events related to implementation of psychological therapies for this population. Secondly, we aimed to evaluate the risk of bias of included studies and the quality of outcomes using the GRADE assessment. Search methods We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE and PsycINFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. Databases were searched to July 2014. Selection criteria Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents with a chronic illness compared to an active control, waiting list, or treatment as usual control group. Data collection and analysis Study characteristics and outcomes were extracted from included studies. We analysed data using two categories. First, we analysed data by each individual medical condition collapsing across all treatment classes at two time points. Second, we analysed data by each individual treatment class; cognitive behavioural therapy (CBT), family therapy (FT), problem solving therapy (PST) and multisystemic therapy

  16. What Does the Informal Caregiver of a Terminally Ill Cancer Patient Need? A Study from a Cancer Centre

    PubMed Central

    Joad, Anjum S Khan; Mayamol, TC; Chaturvedi, Mohita

    2011-01-01

    Aims: To assess the needs of informal caregivers of terminally ill cancer patients. Materials and Methods: Fifty four informal caregivers of patients registered in our palliative care service were interviewed 3–6 months after the death of the patient with the help of a semistructured questionnaire covering the physical, medical, psychological, social, and information domains. Results: Most of the caregivers were middle aged and had no prior experience of care giving. The caregivers were satisfied by the information and medical support provided to them by their treatment team. Most had an “emergency plan”. Caregivers had unmet needs including homecare, psychological support, and financial help. Conclusions: informal caregivers provide most of the nursing and psychological support to the patient. However, palliative care services need to recognize that the caregiver too may need psychological and technical support. PMID:22346043

  17. Expanding the Use of Continuous Sedation Until Death: Moving Beyond the Last Resort for the Terminally Ill.

    PubMed

    LiPuma, Samuel H; DeMarco, Joseph P

    2015-01-01

    As currently practiced, the use of continuous sedation until death (CSD) is controlled by clinicians in a way that may deny patients a key choice in controlling their dying process. Ethical guidelines from the American Medical Association and the American Academy of Pain Medicine describe CSD as a "last resort," and a position statement from the American Academy of Hospice and Palliative Medicine describe it as "an intervention reserved for extreme situations." Accordingly, patients must progress to unremitting pain and suffering and reach a last-resort stage before the option to pursue CSD is considered. Alternatively, we present and defend a new guideline in which decisionally capable, terminally ill patients who have a life expectancy of less than six months may request CSD before being subjected to the refractory suffering of a treatment of "last resort." PMID:26132059

  18. Predictive role of different dimensions of burden for risk of complicated grief in caregivers of terminally ill patients.

    PubMed

    Lai, Carlo; Luciani, Massimiliano; Morelli, Emanuela; Galli, Federico; Cappelluti, Roberta; Penco, Italo; Aceto, Paola; Lombardo, Luigi

    2014-03-01

    The aim of the study was to test whether high levels of caregiver burden, as other confirmed predictors, are associated with the risk of prolonged grief disorder in caregivers of terminally ill patients. A predictive study was carried out in order to test the hypothesis. A demographic schedule, the Prolonged Grief 12 (PG-12), the Toronto Alexithymia Scale, Hamilton Anxiety Rating Scale, Hamilton Depression Rating Scale, and Caregiver Burden Inventory were administered to 60 caregivers of 51 patients who were admitted in Hospice. In the regression analysis, difficulty in recognizing emotions, total burden, depression, and developmental burden dimension were significant predictors of PG-12 levels. Findings showed that feeling of deprivation of existential expectations represents the greater risk factor for the prolonged grief disorder, among the burden dimensions. PMID:23689368

  19. Survival Prediction for Terminally Ill Cancer Patients: Revision of the Palliative Prognostic Score with Incorporation of Delirium

    PubMed Central

    Maltoni, Marco; Miceli, Rosalba; Mariani, Luigi; Caraceni, Augusto; Amadori, Dino; Nanni, Oriana

    2011-01-01

    Purpose. An existing and validated palliative prognostic (PaP) score predicts survival in terminally ill cancer patients based on dyspnea, anorexia, Karnofsky performance status score, clinical prediction of survival, total WBC, and lymphocyte percentage. The PaP score assigns patients to three different risk groups according to a 30-day survival probability—group A, >70%; group B, 30%–70%; group C, <30%. The impact of delirium is known but was not incorporated into the PaP score. Materials and Methods. Our aim was to incorporate information on delirium into the PaP score based on a retrospective series of 361 terminally ill cancer patients. We followed the approach of “validation by calibration,” proposed by van Houwelingen and later adapted by Miceli for achieving score revision with inclusion of a new variable. The discriminating performance of the scores was estimated using the K statistic. Results. The prognostic contribution of delirium was confirmed as statistically significant (p < .001) and the variable was accordingly incorporated into the PaP score (D-PaP score). Following this revision, 30-day survival estimates in groups A, B, and C were 83%, 50%, and 9% for the D-PaP score and 87%, 51%, and 16% for the PaP score, respectively. The overall performance of the D-PaP score was better than that of the PaP score. Conclusion. The revision of the PaP score was carried out by modifying the cutoff values used for prognostic grouping without, however, affecting the partial scores of the original tool. The performance of the D-PaP score was better than that of the PaP score and its key feature of simplicity was maintained. PMID:22042788

  20. Models of care for late-life depression of the medically ill: examples from chronic obstructive pulmonary disease and stroke.

    PubMed

    Avari, Jimmy N; Alexopoulos, George S

    2015-05-01

    Depression worsens most treatment outcomes in medically ill older adults. Chronic medical illnesses weaken and demoralize patients and compromise their ability to adhere to treatments requiring consistency and effort. Acute medical illnesses create a psychosocial storm that finds patients and their ecosystem unprepared. We describe two intervention models that can be used to target and personalize treatment in depressed, chronically, or acutely medically ill older adults. The Personalized Adherence Intervention for Depression and COPD (PID-C) is a model intervention for depressed patients with chronic medical illnesses. It targets patient-specific barriers to treatment engagement and aims to shift the balance in favor of treatment participation. PID-C led to higher remission rates of depression, reduction in depressive symptoms, and reduction in dyspnea-related disability. The addition of problem-solving training enables patients to use resources available to them and hopefully improve their outcomes. Ecosystem-focused therapy (EFT) is a model intervention for depression developing in the context of an acute medical event. It was developed for patients with poststroke depression (PSD) and targets five areas, part of the "psychosocial storm" originating from the patient's sudden disability and the resulting change in the patient's needs and family's life. A preliminary study suggests that EFT is feasible and efficacious in reducing depressive symptoms and signs and disability in PSD. PMID:25028344

  1. Patient Assessment of Chronic Illness Care (PACIC) in Type 2 Diabetes: A Longitudinal Study.

    PubMed

    Aung, Eindra; Ostini, Remo; Dower, Jo; Donald, Maria; Coll, Joseph R; Williams, Gail M; Doi, Suhail A R

    2016-06-01

    The Patient Assessment of Chronic Illness Care (PACIC) was designed to measure care congruent with several elements of the chronic care model (CCM), including self-management support and delivery system design. However, support for the a priori 5-subscale structure of the PACIC in previous research has been conflicting. Thus, we aim to investigate psychometric characteristics of the PACIC including the content and stability of its construct over time. A population-based prospective cohort study of patients with type 2 diabetes was conducted in Queensland, Australia, from 2008 (N = 3,761) to 2010 (N = 3,040). Participants completed annually the 20-item PACIC as well as measures of providers' adherence to guideline-recommended self-management support activities. We used exploratory factor analysis to determine its factor structure and examined internal consistency as well as agreement between the PACIC at baseline with repeated measurements at follow-up after 1 and 2 years. We also determined a criterion-related validity using multinomial logistic regression to explore PACIC's association with providers' self-management support. A one-factor structure was deemed optimal according to our findings. High internal consistency and moderate agreement within the scales over time were observed. Higher PACIC scores predicted better providers' self-management support. In conclusion, the PACIC is a reliable, valid, and reproducible instrument for assessment of diabetes care, and we recommend its promotion and use as a single scale rather than subscales as originally proposed. PMID:25380699

  2. Complementary and alternative medicine: A survey of its use in children with chronic respiratory illness

    PubMed Central

    Richmond, Ellison; Adams, Denise; Dagenais, Simon; Clifford, Tammy; Baydala, Lola; King, W James; Vohra, Sunita

    2014-01-01

    BACKGROUND: The use of complementary and alternative medicine (CAM) has increased in recent years, with especially high prevalence in individuals with chronic illnesses. In the United States, the prevalence of CAM use in pediatric asthma patients is as high as 89%. OBJECTIVE: To investigate the epidemiology of pediatric CAM use in respiratory subspecialty clinics. METHODS: A survey was conducted at two hospital-based respiratory clinics in Edmonton (Alberta) and Ottawa (Ontario). Caregivers (most often parents) of children <18 years of age were asked questions regarding child and caregiver use of CAM, including products and practices used, beliefs about CAM, trust in information sources about CAM and characteristics of the respondents themselves. RESULTS: A total of 202 survey questionnaires were completed (151 from Edmonton and 51 from Ottawa). Pediatric CAM use in Edmonton was 68% compared with 45% in Ottawa, and was associated with caregiver CAM use, poorer health and health insurance coverage for CAM. The majority (67%) of children using CAM had taken prescription drugs concurrently and 58% of caregivers had discussed this with their doctor. DISCUSSION: Lifetime use of CAM at these pediatric clinics was higher than reported for children who do not have chronic diseases. CAM practices that are popular may be worthy of further research to evaluate their effectiveness and safety profile with regard to drug interactions. Health care providers should be encouraged to discuss CAM use at every visit, and explore their patient’s health-related beliefs, behaviours and treatment preferences. PMID:26078607

  3. The use of central venous lines in the treatment of chronically ill children.

    PubMed

    Barczykowska, Ewa; Szwed-Kolińska, Marzena; Wróbel-Bania, Agnieszka; Ślusarz, Robert

    2014-01-01

    Treatment of chronic diseases in children is a special medical problem. Maintaining constant access to the central vascular system is necessary for long-term hemato-oncological and nephrological therapies as well as parenteral nutrition. Providing such access enables chemotherapic treatment, complete parenteral nutrition, long-term antibiotic therapy, hemodialysis, treatment of intensive care unit patients, monitoring blood pressure in the pulmonary artery and stimulation of heart rate in emergency situations as well as treatment of patients suffering from complications, especially when chances of access into peripheral veins are exhausted. Continuous access to the central vascular system is desirable in the treatment of chronically ill children. Insertion of a central venous catheter line eliminates the unnecessary pain and stress to a child patient accompanying injection into peripheral vessels. In order to gain long-term and secure access to the central venous system, respecting the guidelines of the Center for Disease Control and Prevention contained in the updated 'Guidelines for the Prevention of Intravascular Catheter-Related Infections' is necessary. PMID:25618129

  4. Bioplastique medialization therapy improves the quality of life in terminally ill patients with vocal cord palsy.

    PubMed

    Alves, C B; Loughran, S; MacGregor, F B; Dey, J I R; Bowie, L J

    2002-10-01

    Unilateral vocal cord palsy can result in a weak breathy voice and an inability to communicate effectively. This study was designed to assess prospectively the efficacy of polymethylsiloxane elastomer (Bioplastique) medialization injection therapy in patients with vocal cord palsy and terminal disease with particular regard to quality of life issues. Patients with unilateral vocal cord palsy secondary to malignant disease were offered Bioplastique injection. A digital voice recording was taken preoperatively and at 1 month, 3 months and 6 months postoperatively. Maximum phonation time (MPT) was recorded at the same intervals, and patients completed two questionnaires: the voice handicap index (VHI) and SF 36 general health questionnaire. Sixteen patients were entered into the study. There was a significant improvement in voice score, MPT, VHI and in three subgroups of the SF 36 at 1 month postoperatively, and the improvement was maintained in the small number who survived to 3 and 6 months. Bioplastique injection for unilateral vocal cord palsy produces a significant improvement in quality of life in addition to measured voice quality in patients with terminal disease. It should be recommended in patients even when the life expectancy is short. PMID:12383303

  5. Playing with Moon Sand: A Narrative Inquiry into a Teacher's Experiences Teaching Alongside a Student with a Chronic Illness

    ERIC Educational Resources Information Center

    Davis, Beth; Murphy, M. Shaun

    2016-01-01

    This paper inquires into the experiences of an early childhood educator named Claire who taught a young girl with a chronic illness at East Willows Elementary School, a western Canadian elementary school. Using narrative inquiry as the methodology, Claire's experiences in her curriculum making alongside Madeline a young girl with Turner syndrome…

  6. Living Your Own Life: A Handbook for Teenagers by Young People and Adults with Chronic Illness or Disabilities.

    ERIC Educational Resources Information Center

    Roberts, Nicole; And Others

    This book aims to provide teenagers with chronic illnesses or disabilities with useful information, moral support, and understanding as they make the transition to adulthood. It points out that although individuals with disabilities may want and need others for support, they can still live independently and make choices in all areas of their…

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

    ERIC Educational Resources Information Center

    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…

  8. Physical Activity on Medical Prescription: A Qualitative Study of Factors Influencing Take-Up and Adherence in Chronically Ill Patients

    ERIC Educational Resources Information Center

    Gasparini, William; Knobé, Sandrine; Didierjean, Romaine

    2015-01-01

    Objective: This study sought to determine the effects of an innovative public health programme offering physical and sports activities on medical prescription to chronically ill patients. Method: Semi-structured interviews were conducted with programme participants at two time points: at the start of their activity (n?=?33) and 3?months after the…

  9. Chronic Illness Self-care and the Family Lives of Older Adults: A Synthetic Review Across Four Ethnic Groups

    PubMed Central

    Gallant, Mary P.; Spitze, Glenna; Grove, Joshua G.

    2010-01-01

    The purpose of this paper is to integrate the literature on family and social ties among older ethnic minority men and women with the literature on chronic illness self-care among elders in these groups, in order to increase understanding of social influences on self-care behavior, raise questions for future research, and inform culturally appropriate interventions to maximize the health-promoting potential of social relationships. The paper presents demographic and chronic illness prevalence information, and then summarizes literature about patterns of chronic illness self-care behaviors for older African-Americans, Latinos, Asian-Americans, and American Indians in the U.S. For each group, the sociological literature about residential, cultural, and socioeconomic patterns, family lives, and other social ties is then reviewed, and the self-care literature that has accounted for these patterns is discussed. Finally, six themes are outlined and related questions are identified to further illuminate the social context of older adults’ chronic illness self-care. PMID:20177963

  10. "Absence Makes the Heart Grow Fonder": Students with Chronic Illness Seeking Academic Continuity through Interaction with Their Teachers at School

    ERIC Educational Resources Information Center

    Wilkie, Karina J.

    2012-01-01

    Increasing numbers of young people experience disruption to their schooling owing to chronic illness. Absence from the day-to-day life of their school for prolonged or accumulative periods of time can erode their sense of belonging and create anxiety about falling behind academically. Maintaining positive connections to school can meet their…

  11. Teenagers at Risk: A National Perspective of State Level Services for Adolescents with Chronic Illness or Disability.

    ERIC Educational Resources Information Center

    Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

    This report presents the findings of a study which examined the service delivery system for adolescents with chronic illness, through a survey of 248 directors of public agencies and programs of the 50 states and the District of Columbia, with a 73 percent response rate. The seven programs surveyed within each state were Maternal and Child Health…

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

    ERIC Educational Resources Information Center

    Mitchell, Lynda Leftridge

    1998-01-01

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

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

    ERIC Educational Resources Information Center

    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…

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

    PubMed Central

    Buhler-Wilkerson, Karen

    2007-01-01

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

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

    ERIC Educational Resources Information Center

    Ekvall, Shirley M.; Wheby, Elizabeth A.

    The following papers were presented at a symposium on clinical nutrition for the child who is chronically ill or handicapped: (1) "Food Allergy"; (2) "Anemia and the Chronically Ill or Handicapped Child"; (3) "Nutrition and Neurotransmitters--Clinical Implications"; (4) "The Importance of Lipid Type in the Diet after Burn Injury"; (5) "Advances of…

  16. Culture and Chronic Illness: Raising Children with Disabling Conditions in a Culturally Diverse World. Papers presented at an Invitational Conference (Racine, Wisconsin, June 1992).

    ERIC Educational Resources Information Center

    Pediatrics, 1993

    1993-01-01

    This special supplement presents two background papers, three working papers, and key recommendations from a conference on culture and chronic illness in childhood. The meeting had as its goal the identification of the state of knowledge on the interface among culture, chronic illness, child development, and family functioning, for the purpose of…

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

    ERIC Educational Resources Information Center

    Wodka, Ericka L.; Barakat, Lamia P.

    2007-01-01

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

  18. Senescent birds redouble reproductive effort when ill: confirmation of the terminal investment hypothesis.

    PubMed

    Velando, Alberto; Drummond, Hugh; Torres, Roxana

    2006-06-22

    This study reports an experimental confirmation of the terminal investment hypothesis, a longstanding theoretical idea that animals should increase their reproductive effort as they age and their prospects for survival and reproduction decline. Previous correlational and experimental attempts to test this hypothesis have yielded contradictory results. In the blue-footed booby, Sula nebouxii, a long-lived bird, after initial increase, male reproductive success declines progressively with age. Before laying, males of two age classes were challenged with lipopolysaccharide to elicit an immune response, which induced symptoms of declining survival prospects. Reproductive success of immune-challenged mature males fell, while that of immune-challenged old males showed a 98% increase. These results demonstrate that senescent males with poor reproductive prospects increase their effort when those prospects are threatened, whereas younger males with good reproductive prospects do not. PMID:16777735

  19. Applying a coping with stress questionnaire for cancer patients to patients with non-cancer chronic illnesses.

    PubMed

    Orive, Miren; Quintana, Jose M; Vrotsou, Kalliopi; Las Hayas, Carlota; Bilbao, Amaia; Barrio, Irantzu; Matellanes, Begoña; Padierna, Jesús A

    2013-06-01

    One of the few instruments to evaluate coping skills among patients with chronic illnesses is the Cuestionario de Afrontamiento al Estrés para Pacientes Oncológicos (CAEPO), created initially for cancer patients. We evaluate how well CAEPO applies to patients with non-cancer chronic illnesses. A total of 344 patients (115 with chronic hepatitis C, 120 with inflammatory bowel disease and 109 with recurrent vertigo) completed the CAEPO. Exploratory factor analysis and Cronbach's alpha provide only partial support for the seven factors suggested by the original CAEPO. A streamlined version with fewer dimensions and items may be a better solution for identifying coping strategies among these patients. PMID:23221615

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

    PubMed

    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. PMID:27021310

  1. Patients' beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness.

    PubMed

    Horne, R; Weinman, J

    1999-12-01

    The aim of this cross-sectional study was to quantify patients' personal beliefs about the necessity of their prescribed medication and their concerns about taking it and to assess relations between beliefs and reported adherence among 324 patients from four chronic illness groups (asthma, renal, cardiac, and oncology). The findings revealed considerable variation in reported adherence and beliefs about medicines within and between illness groups. Most patients (89%) believed that their prescribed medication was necessary for maintaining health. However, over a third had strong concerns about their medication based on beliefs about the dangers of dependence or long-term effects. Beliefs about medicines were related to reported adherence: higher necessity scores correlated with higher reported adherence (r=0.21, n=324, p<0.01) and higher concerns correlated with lower reported adherence (r=0.33, n=324, p<0.01). For 17% of the total sample, concerns scores exceeded necessity scores and these patients reported significantly lower adherence rates (t=-4.28, p<0.001). Stepwise multiple linear regression analysis showed that higher reported adherence rates were associated with higher necessity-concerns difference scores (beta=0.35, p<0.001), a diagnosis of asthma (beta= -0.31, p<0.001), a diagnosis of heart disease (beta=0.19, p<0.001), and age (beta=0.22, p<0.001). Gender, educational experience, or the number of prescribed medicines did not predict reported adherence. Medication beliefs were more powerful predictors of reported adherence than the clinical and sociodemographic factors, accounting for 19% of the explained variance in adherence. These data were consistent with the hypothesis that many patients engage in an implicit cost-benefit analysis in which beliefs about the necessity of their medication are weighed against concerns about the potential adverse effects of taking it and that these beliefs are related to medication adherence. PMID:10661603

  2. Newly Recognized Occupational and Environmental Causes of Chronic Terminal Airways and Parenchymal Lung Disease

    PubMed Central

    Sauler, Maor; Gulati, Mridu

    2012-01-01

    Synopsis With the introduction of new materials and changes in manufacturing practices, occupational health investigators continue to uncover associations between novel exposures and chronic forms of diffuse parenchymal lung disease and terminal airways disease. In order to discern exposure disease relationships, clinicians must maintain a high index of suspicion for the potential toxicity of occupational and environmental exposures. This article details several newly recognized chronic parenchymal and terminal airways. Diseases related to exposure to Indium, Nylon Flock, Diacetyl used in the flavorings industry, nanoparticles, and the World Trade Center disaster are reviewed. Additionally, this article will review methods in worker surveillance as well as the potential use of biomarkers in the evaluation of exposure disease relationships. PMID:23153608

  3. Waiting times in the ambulatory sector - the case of chronically Ill patients

    PubMed Central

    2013-01-01

    Aims First, the influence of determinants on the waiting times of chronically ill patients in the ambulatory sector is investigated. The determinants are subdivided into four groups: (1) need, (2) socio-economic factors, (3) health system and (4) patient time pressures. Next, the influence of waiting times on the annual number of consultations is examined to assess whether the existing variation in waiting times influences the frequency of medical examinations. The waiting times of chronically ill patients are analysed since regular ambulatory care for this patient group could both improve treatment outcomes and lower costs. Data sources Individual data from the 2010 Representative Survey conducted by the National Association of Statutory Health Insurance Physicians (KBV) together with regional data from the Federal Office of Construction and Regional Planning. Study design This is a retrospective observational study. The dependent variables are waiting times in the ambulatory sector and the number of consultations of General Practitioners (GPs) and specialist physicians in the year 2010. The explanatory variables of interest are ‘need’ and ‘health system’ in the first model and ‘length of waiting times’ in the second. Negative binomial models with random effects are used to estimate the incidence rate ratios of increased waiting times and number of consultations. Subsequently, the models are stratified by urban and rural areas. Results In the pooled regression the factor ‘privately insured’ shortens the waiting time for treatment by a specialist by approximately 28% (about 3 days) in comparison with members of the statutory health insurance system. The category of insurance has no influence on the number of consultations of GPs. In addition, the regression results stratified by urban and rural areas show that in urban areas the factor ‘privately insured’ reduces the waiting time for specialists by approximately 35% (about 3.3 days) while in

  4. Use of an Electronic Patient Portal Among the Chronically Ill: An Observational Study

    PubMed Central

    Linna, Miika; Rönkkö, Ilona; Kröger, Virpi

    2014-01-01

    Background Electronic patient portals may enhance effective interaction between the patient and the health care provider. To grasp the full potential of patient portals, health care providers need more knowledge on which patient groups prefer electronic services and how patients should be served through this channel. Objective The objective of this study was to assess how chronically ill patients’ state of health, comorbidities, and previous care are associated with their adoption and use of a patient portal. Methods A total of 222 chronically ill patients, who were offered access to a patient portal with their health records and secure messaging with care professionals, were included in the study. Differences in the characteristics of non-users, viewers, and interactive users of the patient portal were analyzed before access to the portal. Patients’ age, gender, diagnoses, levels of the relevant physiological measurements, health care contacts, and received physiological measurements were collected from the care provider’s electronic health record. In addition, patient-reported health and patient activation were assessed by a survey. Results Despite the broad range of measures used to indicate the patients’ state of health, the portal user groups differed only in their recorded diagnosis for hypertension, which was most common in the non-user group. However, there were significant differences in the amount of care received during the year before access to the portal. The non-user group had more nurse visits and more measurements of relevant physiological outcomes than viewers and interactive users. They also had fewer referrals to specialized care during the year before access to the portal than the two other groups. The viewers and the interactive users differed from each other significantly in the number of nurse calls received, the interactive users having more calls than the viewers. No significant differences in age, gender, or patient activation were

  5. The Importance of Relational Coordination and Reciprocal Learning for Chronic Illness Care within Primary Care Teams

    PubMed Central

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

    2012-01-01

    Background 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. Purposes 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. Methodology/Approach 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, non-physician 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. Findings 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

  6. Significance of End-of-life Dreams and Visions Experienced by the Terminally Ill in Rural and Urban India

    PubMed Central

    Dam, Abhijit Kanti

    2016-01-01

    Background: End-of-life dreams and visions (ELDVs) are not uncommon and are experienced by many near the time of death. These visions can occur months, weeks, days or hours before death. We wanted to document ELDVs, if any, in rural and urban settings in India, where talking about death is usually considered a taboo and also to compare its incidence with the urban population. Principle Research Question: Do terminally ill patients receiving home care in rural and urban India experience ELDVs? If yes, then an enquiry into the nature of such ELDVs. Study Design: Prospective, cohort based, with a mixed-methods research design. Methodology: 60 terminally ill patients with Palliative Performance Scale of <40, who consented to participate in the study were enrolled and questioned about the occurrence of ELDVs if any. Questions were both closed-ended and open ended regarding the content, frequency, recall, associated symptom burden, etc. Results: 63.3% cases reported experiencing ELDVs. 55.5% of the rural patients reported ELDVs while 66.6% of the urban patients did the same. 78.9% (30) of the subjects were able to recall the ELDVs vividly and in detail, 13.1% (5) subjects were able to recall somewhat and 7.8% (3) subjects had trouble in recalling them. 84.2% (32) subjects reported the ELDVs as 'distressing'. 30 subjects (78.9%) reported seeing 'deceased' people, be it relatives, friends or acquaintances. 12 (31.5%) saw living friends and relatives, 52.6% (20) saw people or forms that they did not recognize, 21% (8) visualized making preparations or going on a journey. 76.3% (29) patients had a symptom burden of >7 (on a VAS of 1-10), which corresponded to 'severe distress'. 94.7% (36) patients felt much better having discussed their ELDVs with the team. Conclusions: The results of our study suggest that ELDVs are not uncommon in India and the incidence does not differ significantly between rural and urban population. Our subjects found them to be distressing initially

  7. Web-based interventions for comorbid depression and chronic illness: a systematic review.

    PubMed

    Charova, Ekaterina; Dorstyn, Diana; Tully, Phillip; Mittag, Oskar

    2015-06-01

    Web-based interventions offer potential benefits for managing and treating depression in the context of chronic physical illness, however their use with this population has yet to be quantitatively assessed. The present systematic review examined the biopsychosocial data from 11 independent studies (N = 1348 participants), including randomised controlled and quasi-experimental designs most commonly performed with diabetes and multiple sclerosis. Study quality was evaluated using the Downs and Black (1998) index, with most studies being statistically underpowered although internal validity was demonstrated. Treatment outcomes were quantified using Cohen's d effect sizes. Results indicated significant short-term improvements in depression severity (d w = 0.36, CI = 0.20-0.52, p < 0.01), in addition to quality of life, problem-solving skills, functional ability, anxiety and pain-related cognitions (d range = 0.23 to 1.10). Longer-term outcomes could not be determined based on the limited data. Further robust studies are required before wider adoption of web techniques takes place. PMID:25712111

  8. Quality of Life and School Absenteeism in Children With Chronic Illness

    PubMed Central

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

    2015-01-01

    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 psychosocial intervention for youths with CI. Methods Forty-eight children and adolescents with a CI (70.8% female, Mage = 14.922, SD = 2.143) and their parent(s) completed a health-related quality of life (HRQOL) measure pre- and postintervention. Using multiple mediation, we examined whether parent- and child-rated physical and social HRQOL mediated the relationship between school attendance before and after MEND. Once the mediational model was not supported, we investigated whether HRQOL moderated the relationship between missed school days pre- and postintervention. Results Neither physical nor social functioning mediated or moderated the relationship between missed school days pre- and postintervention. Instead, higher parent-rated physical functioning directly predicted decreased number of missed school days, while lower parent-rated social and child-rated physical functioning predicted increased missed school days. Conclusions Parent-perceived HRQOL may have a direct effect on health-related behaviors such as school attendance. Future research should determine whether gains in parent-rated QOL are maintained in the long term and whether these continue to impact markers of functional well-being. PMID:26572160

  9. A challenge for public policy: the chronically ill elderly and nursing homes.

    PubMed

    Ricker-Smith, K L

    1982-11-01

    Data reported by skilled nursing facilities (SNFs) in an eight-county area in Northern California for 1977-78 indicate that the typical SNF resident was a impoverished female who was at least 75 years old. Her SNF stay was subsidized by MediCal, California's Medicaid program. She was in an urban, for-profit SNF for at least one year, during which time approximately one quarter of her co-residents died. She received about 2 hours of daily side-orderly-attendant care and almost 45 minutes of licensed nurse care. Although her most frequent contact was with aides-orderlies-attendants, a sustained relationship with the staff was not likely because of high employee turnover rate in the facility. This resident had a one-in-three chance of being in a SNF that had been cited (though the citation had not necessarily been upheld) for poor to life-threatening care. This information underscores the urgency of reorienting public policies so that they are based on the needs of the chronically ill elderly. Such a reorientation would I) ensure that people receive professional and paraprofessional services in the least restrictive environment; 2) preclude criticism of nursing homes for "warehousing" the elderly when there is actually little choice in the matter; and 3) enable the nation's elderly to live out their lives with sense of self-worth and dignity, and with the knowledge that they are valued members of society. PMID:6815387

  10. Psycho-physical and neurophysiological effects of qigong on depressed elders with chronic illness.

    PubMed

    Tsang, Hector W H; Tsang, William W N; Jones, Alice Y M; Fung, Kelvin M T; Chan, Alan H L; Chan, Edward P; Au, Doreen W H

    2013-01-01

    This randomized controlled trial examined the psychological, physical, and neurophysiological effects of a qigong exercise program on depressed elders with chronic medical illness. The experimental group (n = 21, 80 ± 7 years) was given a 12-week qigong exercise program, while the comparison group (n = 17, 81 ± 8 years) participated in a newspaper reading program with the same duration and frequency. Measurement of depression symptoms, psychosocial functioning, muscle strengths, salivary cortisol, and serum serotonin was conducted. At 12 weeks, the qigong group had significant reduction in depressive symptoms (F = 11.68; p < 0.025). Improvement in self-efficacy (F = 4.30; p < 0.050), self-concept of physical well-being (F = 6.82; p < 0.025), and right-hand grip strength (F = 5.25; p = 0.034) was also found when compared with the comparison group. A change in salivary cortisol level was found marginally insignificant between groups (F = 3.16; p = 0.087). However, a decreasing trend of cortisol level was observed. The results provided preliminary evidence for the hypotheses that the antidepressive effect of qigong exercise could be explained by improvement in psychosocial functioning and possibly down-regulation of hyperactivity of the hypothalamic-pituitary-adrenal axis. PMID:23072658

  11. Managing chronic illness: physician practices increased the use of care management and medical home processes.

    PubMed

    Wiley, James A; Rittenhouse, Diane R; Shortell, Stephen M; Casalino, Lawrence P; Ramsay, Patricia P; Bibi, Salma; Ryan, Andrew M; Copeland, Kennon R; Alexander, Jeffrey A

    2015-01-01

    The effective management of patients with chronic illnesses is critical to bending the curve of health care spending in the United States and is a crucial test for health care reform. In this article we used data from three national surveys of physician practices between 2006 and 2013 to determine the extent to which practices of all sizes have increased their use of evidence-based care management processes associated with patient-centered medical homes for patients with asthma, congestive heart failure, depression, and diabetes. We found relatively large increases over time in the overall use of these processes for small and medium-size practices as well as for large practices. However, the large practices used fewer than half of the recommended processes, on average. We also identified the individual processes whose use increased the most and show that greater use of care management processes is positively associated with public reporting of patient experience and clinical quality and with pay-for-performance. PMID:25561647

  12. Improving confidence for self care in patients with depression and chronic illnesses.

    PubMed

    Ludman, Evette J; Peterson, Do; Katon, Wayne J; Lin, Elizabeth H B; Von Korff, Michael; Ciechanowski, Paul; Young, Bessie; Gensichen, Jochen

    2013-01-01

    The aim of this study was to examine whether patients who received a multicondition collaborative care intervention for chronic illnesses and depression had greater improvement in self-care knowledge and efficacy, and whether greater knowledge and self-efficacy was positively associated with improved target outcomes. A randomized controlled trial with 214 patients with comorbid depression and poorly controlled diabetes and/or coronary heart disease tested a 12-month team-based intervention that combined self-management support and collaborative care management. At 6 and 12 month outcomes the intervention group showed significant improvements over the usual care group in confidence in ability to follow through with medical regimens important to managing their conditions and to maintain lifestyle changes even during times of stress. Improvements in self care-efficacy were significantly related to improvements in depression, and early improvements in confidence to maintain lifestyle changes even during times of stress explained part of the observed subsequent improvements in depression. PMID:23398269

  13. Drug Insight: testosterone and selective androgen receptor modulators as anabolic therapies for chronic illness and aging

    PubMed Central

    Bhasin, Shalender; Calof, Olga M; Storer, Thomas W; Lee, Martin L; Mazer, Norman A; Jasuja, Ravi; Montori, Victor M; Gao, Wenqing; Dalton, James T

    2007-01-01

    SUMMARY Several regulatory concerns have hindered development of androgens as anabolic therapies, despite unequivocal evidence that testosterone supplementation increases muscle mass and strength in men; it induces hypertrophy of type I and II muscle fibers, and increases myonuclear and satellite cell number. Androgens promote differentiation of mesenchymal multipotent cells into the myogenic lineage and inhibit their adipogenic differentiation, by facilitating association of androgen receptors with β-catenin and activating T-cell factor 4. Meta-analyses indicate that testosterone supplementation increases fat-free mass and muscle strength in HIV-positive men with weight loss, glucocorticoid-treated men, and older men with low or low-normal testosterone levels. The effects of testosterone on physical function and outcomes important to patients have not, however, been studied. In older men, increased hematocrit and increased risk of prostate biopsy and detection of prostate events are the most frequent, testosterone-related adverse events. Concerns about long-term risks have restrained enthusiasm for testosterone use as anabolic therapy. Selective androgen-receptor modulators that are preferentially anabolic and that spare the prostate hold promise as anabolic therapies. We need more studies to determine whether testosterone or selective androgen-receptor modulators can induce meaningful improvements in physical function and patient-important outcomes in patients with physical dysfunction associated with chronic illness or aging. PMID:16932274

  14. Gender and alcohol use: the roles of social support, chronic illness, and psychological well-being.

    PubMed

    Green, C A; Freeborn, D K; Polen, M R

    2001-08-01

    Men and women differ in their use of alcohol, in their rates of chronic illnesses and psychological symptoms, and in the social support they receive. In this paper, we assess how the latter three factors are associated with alcohol use, and how these associations differ by gender. Respondents were 3,074 male and 3,947 female randomly selected Health Maintenance Organization members who responded to a mail survey in 1990. Hierarchical multiple regression analyses indicate that social support is associated with alcohol consumption in similar ways for both genders, yet the associations between some demographic, physical health/functioning, and psychological well-being measures are different for men and women. Men with fewer role limits due to physical health drank more, while women with better psychological well-being drank less. Poor psychological well-being may be a modifiable risk factor for increased alcohol use among women; practitioners should be alert for greater consumption among men with few functional limitations and good health. PMID:11523334

  15. Towards a wireless patient: chronic illness, scarce care and technological innovation in the United Kingdom.

    PubMed

    May, Carl; Finch, Tracy; Mair, Frances; Mort, Maggie

    2005-10-01

    'Modernization' is a key health policy objective in the UK. It extends across a range of public service delivery and organizational contexts, and also means there are radical changes in perspective on professional behaviour and practice. New information and communications technologies have been seen as one of the key mechanisms by which these changes can be engendered. In particular, massive investment in information technologies promises the rapid distribution and deployment of patient-centred information across internal organizational boundaries. While the National Health Service (NHS) sits on the edge of a pound sterling 6 billion investment in electronic patient records, other technologies find their status as innovative vehicles for professional behaviour change and service delivery in question. In this paper, we consider the ways that telemedicine and telehealthcare systems have been constructed first as a field of technological innovation, and more recently, as management solutions to problems around the distribution of health care. We use NHS responses to chronic illness as a medium for understanding these shifts. In particular, we draw attention to the shifting definitions of 'innovation' and to the ways that these shifts define a move away from notions of technological advance towards management control. PMID:15893864

  16. Caregiver burden in chronic mental illness: the role of patient and caregiver characteristics.

    PubMed

    Möller-Leimkühler, Anne Maria; Wiesheu, Andreas

    2012-03-01

    The aim of the present study is to identify the relative contribution of patient and caregiver characteristics in a sample of primary carers of patients with chronic mental disorders living in the community. As carers were recruited from caregiver organizations, mainly mothers of an adult child suffering from schizophrenia participated in the study (n = 102). Within a comprehensive transactional stress model, burden was assessed with respect to objective and subjective burden, cognitive-emotional well-being, psychological distress and subjective quality of life. Primary stressors include illness-related characteristics of the patient, and a number of personal dispositions and resources of the caregivers were included as potential moderating variables. Multiple regression analyses were separately calculated for each dimension of burden. Interaction of carers' expressed emotion and external locus of control with the patient's problem with family communication as well as perceived social support was most predictive for objective and subjective burden, whereas carers' neuroticism appeared as the most relevant predictor of their well-being, psychological distress and subjective quality of life. Among the patients' variables, regular employment contributed significantly to reduce carers' distress and enhance their well-being. As the sample was recruited from caregiver organizations, a selection bias has to be taken into account. To reduce caregiver burden, especially mothers' burden, the patients' occupational abilities should be strongly enhanced at an early stage. Family interventions should improve dysfunctional interactions, enhance the carers' social activities and focus more intensely on the carers' own dispositions. PMID:21538092

  17. Family Functioning as a Constituent Aspect of a Child's Chronic Illness.

    PubMed

    Cipolletta, Sabrina; Marchesin, Valentina; Benini, Franca

    2015-01-01

    This study explored how family functioning may contribute to trace a child's illness trajectory. We conducted semi-structured interviews with 33 parents of children in care at a hospice in northern Italy. We also examined the medical records of the children, and interviewed the physician who cared for them. Data analysis was based on the grounded theory approach. Different illness progressions corresponded to the different ways with which families experienced the illness: possibility, focus on illness, denial, and anger. Clinical interventions should involve the whole family and take into account their role in the construction of illness trajectories. PMID:25682020

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

    PubMed Central

    Goudge, Jane; Gilson, Lucy; Russell, Steven; Gumede, Tebogo; Mills, Anne

    2009-01-01

    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 community resource drawn on

  19. The effects of the cultural context of health care on treatment of and response to chronic pain and illness.

    PubMed

    Bates, M S; Rankin-Hill, L; Sanchez-Ayendez, M

    1997-11-01

    Qualitative data from two studies in Puerto Rico and New England are used to show how cultural values, standards and beliefs in different health care contexts affect (1) health care professionals' responses to patients' problems, (2) the relationships between providers and patients, and (3) the patients' responses to chronic pain and illness. Influencing elements in the care setting include the world view of the relationship of mind and body in illness processes, the dominant values and standards regarding pain and illness behaviors and the degree of cooperation between the providers and other agencies the patient depends on for compensation, rehabilitation and health insurance. In the New England study, the biomedical world view of mind-body dualism was shared by providers and most patients, but this shared belief often contributed to substantial patient stress and alienation. In contrast, in the Puerto Rican study providers and patients often shared a view of mind-body integration in illness and valued treatments which addressed chronic pain as a biopsychosocial experience. In this setting, shared views and values contributed to more supportive patient-provider relationships, and patients thus experienced less treatment-related stress. PMID:9351160

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

    PubMed Central

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

    2010-01-01

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

  1. Medication cost problems among chronically ill adults in the US: did the financial crisis make a bad situation even worse?

    PubMed

    Piette, John D; Rosland, Ann Marie; Silveira, Maria J; Hayward, Rodney; McHorney, Colleen A

    2011-01-01

    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. PMID:21573050

  2. Changing Diagnostic and Treatment Criteria for Chronic Illness: A Critical Consideration of their Impact on Low-Income Hispanic Patients

    PubMed Central

    Hunt, Linda M.; Kreiner, Meta; Rodriguez-Mejia, Fredy

    2015-01-01

    Low-income Hispanics are often identified as especially at risk for common chronic conditions like diabetes, and targeted for aggressive screening and treatment. Anthropologists and other social scientists have extensively explored barriers and facilitators to chronic illnesses management in minority populations, but have not yet considered the impact of recently lowered diagnostic and treatment thresholds on such groups. In this paper, we critically review recent changes in diabetes, hypertension and high cholesterol diagnostic and treatment standards which have dramatically increased the number of people being treated for these conditions. Drawing on an ethnographic study of chronic illness management in two Hispanic-serving clinics in the Midwest, we examine how these new standards are being applied, and consider the resulting health care challenges these Hispanic patients face. Our analysis leads us to question the value of promoting narrowly defined treatment goals, particularly when patients lack reliable access to the health care resources these goals require. While improving the health of low-income Hispanics is a worthwhile goal, it is important to consider whether these efforts may be promoting over-diagnosis and over-treatment, drawing them into an expensive chronic patient role with uncertain benefit. PMID:25797962

  3. Becoming patient: a path to effective participation with chronic terminal cancer.

    PubMed

    Katzman, Sandra

    2013-01-01

    One chronic terminal lung cancer patient was purposely selected. My grounded theory findings indicated that this middle-aged, asymptomatic, otherwise healthy woman used the basic social process of asking, "How can I participate in treatment?" in order to resolve a crisis of pain. Participation involved the overarching condition of trust in medical personnel, and included seven overlapping considerations: expense, disease progress, bodily feeling, explanations, plans, emotional reactions, and turning point. The findings provide information that may lead to smoother transitions to changing the status of a patient. PMID:23216097

  4. Effects of Culturally Relevant Psychoeducation for Korean American Families of Persons with Chronic Mental Illness

    ERIC Educational Resources Information Center

    Shin, Sun-Kyung

    2004-01-01

    This study is to identify culturally relevant treatment methods and to assess the effects of family psychoeducational intervention for Korean Americans who had a family member with mental illness. 48 Korean Americans with children with mental illness were randomly assigned to either an experimental group program that provided culturally sensitive…

  5. Concepts and Definitions for “Actively Dying,” “End of Life,” “Terminally Ill,” “Terminal Care,” and “Transition of Care”: A Systematic Review

    PubMed Central

    Hui, David; Nooruddin, Zohra; Didwaniya, Neha; Dev, Rony; De La Cruz, Maxine; Kim, Sun Hyun; Kwon, Jung Hye; Hutchins, Ronald; Liem, Christiana; Bruera, Eduardo

    2013-01-01

    Context The terms “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care” are commonly used but rarely and inconsistently defined. Objectives We conducted a systematic review to examine the concepts and definitions for these terms. Methods We searched MEDLINE, PsycINFO, Embase, and CINAHL for published peer-reviewed articles from 1948 to 2012 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. We also searched 10 dictionaries, four palliative care textbooks, and 13 organization Web sites, including the U.S. Federal Code. Results One of 16, three of 134, three of 44, two of 93, and four of 17 articles defined or conceptualized actively dying, end of life, terminally ill, terminal care, and transition of care, respectively. Actively dying was defined as “hours or days of survival.” We identified two key defining features for end of life, terminally ill, and terminal care: life-limiting disease with irreversible decline and expected survival in terms of months or less. Transition of care was discussed in relation to changes in 1) place of care (e.g., hospital to home), 2) level of professions providing the care (e.g., acute care to hospice), and 3) goals of care (e.g., curative to palliative). Definitions for these five terms were rarely found in dictionaries, textbooks, and organizational Web sites. However, when available, the definitions were generally consistent with the concepts discussed previously. Conclusion We identified unifying concepts for five commonly used terms in palliative care and developed a preliminary conceptual framework toward building standardized definitions. PMID:23796586

  6. Chronic respiratory illness as a predictor of survival in idiopathic dilated cardiomyopathy: the Washington, DC, Dilated Cardiomyopathy Study.

    PubMed Central

    Martin, S. A.; Coughlin, S. S.; Metayer, C.; René, A. A.; Hammond, I. W.

    1996-01-01

    Although bronchial asthma and emphysema have been associated with idiopathic dilated cardiomyopathy in case-control studies, little is known about the prognostic importance of chronic respiratory disease in idiopathic dilated cardiomyopathy. To study this, we examined history of bronchial asthma, emphysema and chronic bronchitis, and respiratory medication use as possible predictors of survival in idiopathic dilated cardiomyopathy using data from a Washington, DC, population-based study (n = 129). The cumulative survival rates among patients with a history of emphysema or chronic bronchitis were 60% and 48% at 12 and 36 months, respectively, compared with 81.8% and 67.2% among patients without emphysema or chronic bronchitis. The survival rates of idiopathic dilated cardiomyopathy patients with and without a history of bronchial asthma at the time of idiopathic dilated cardiomyopathy diagnosis were similar. In multivariate analysis using the proportional hazards model, only ventricular arrhythmias and ejection fraction were found to be statistically significant predictors of survival in idiopathic dilated cardiomyopathy. The adjusted relative risk estimate for emphysema and chronic bronchitis was close to one. Thus, the results of this population-based study do not suggest that history of chronic respiratory illness is an independent predictor of survival in idiopathic dilated cardiomyopathy. PMID:8961693

  7. Determinants of access to chronic illness care: a mixed-methods evaluation of a national multifaceted chronic disease package for Indigenous Australians

    PubMed Central

    Bailie, Jodie; Schierhout, Gill; Laycock, Alison; Kelaher, Margaret; Percival, Nikki; O'Donoghue, Lynette; McNeair, Tracy; Bailie, Ross

    2015-01-01

    Objectives Indigenous Australians have a disproportionately high burden of chronic illness, and relatively poor access to healthcare. This paper examines how a national multicomponent programme aimed at improving prevention and management of chronic disease among Australian Indigenous people addressed various dimensions of access. Design Data from a place-based, mixed-methods formative evaluation were analysed against a framework that defines supply and demand-side dimensions to access. The evaluation included 24 geographically bounded ‘sentinel sites’ that included a range of primary care service organisations. It drew on administrative data on service utilisation, focus group and interview data on community members’ and service providers’ perceptions of chronic illness care between 2010 and 2013. Setting Urban, regional and remote areas of Australia that have relatively large Indigenous populations. Participants 670 community members participated in focus groups; 374 practitioners and representatives of regional primary care support organisations participated in in-depth interviews. Results The programme largely addressed supply-side dimensions of access with less focus or impact on demand-side dimensions. Application of the access framework highlighted the complex inter-relationships between dimensions of access. Key ongoing challenges are achieving population coverage through a national programme, reaching high-need groups and ensuring provision of ongoing care. Conclusions Strategies to improve access to chronic illness care for this population need to be tailored to local circumstances and address the range of dimensions of access on both the demand and supply sides. These findings highlight the importance of flexibility in national programme guidelines to support locally determined strategies. PMID:26614617

  8. Meaning of care for terminally Ill HIV-infected patients by HIV-infected peer caregivers in a simulation-based training program in South Korea.

    PubMed

    Kim, Sunghee; Shin, Gisoo

    2015-01-01

    The purpose of this study was to develop a simulation-based training program for people living with HIV (PLWH) as peer caregivers who would take care of terminally ill, HIV-infected patients. We used qualitative research methods and standardized patients to explore the meaning of caring for patients as peer caregivers. Study participants included 32 patients registered as PLWH at the South Korea Federation for HIV/AIDS. The meanings of peer caregiving were categorized into four dimensions: physical, psychological, relational, and economic. Our study had benefits in knowledge acquisition for caregivers as well as care recipients, empathy with HIV-infected care recipients, improvement in self-esteem and social participation, and financial self-sufficiency to enable independent living for caregivers. The simulation training program for PLWH peer caregivers for terminally ill HIV-infected patients demonstrated value, for both PLWH caregivers and terminally ill HIV-infected patients in South Korea, to improve the quality of care. PMID:26279386

  9. Altered Food-Cue Processing in Chronically Ill and Recovered Women with Anorexia Nervosa

    PubMed Central

    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

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

    PubMed

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

    2015-06-01

    Obesity impacts the physical and psychological health of children and adolescents, and is a risk factor for development of episodic and chronic illness. Rural Mexican-American adolescents are at risk for obesity and associated chronic illnesses.The study used a retrospective chart review of data collected routinely in a rural health clinic setting from 1 January 2005 to 31 December 2010 to assess incidence of overweight/obesity status and episodic or chronic illness among Mexican-American adolescents aged 12-18 years. Analyses included body mass index, age, gender, and episodic or chronic illness diagnoses. Two hundred twelve charts were audited; women (n = 114, 53.8%), men (n = 98 46.2%); normal (n = 105, 49.5%), overweight/obese (n = 107, 50.5%). There were more female normal (n = 61, 53.5%) vs. overweight/obese (n = 53, 46.5%). More male overweight/obese (n = 54, 55.1%) than normal weight (n = 44, 44.9%). Age at first documented overweight/obesity status occurred in early adolescence (median = 13 years, mode = 12 years). Chronic illness incidence was higher among men than women, and overweight/obese vs. normal weight adolescents and in sub-categorizations by weight and specific illness. Incidence of episodic illness was higher among women than men, with variation by weight and specific illness. Disproportionately high incidence of episodic or chronic illness and overweight/obesity identified among rural Mexican-American adolescents compels intervention modification to improve effectiveness. PMID:24674302

  11. Physical therapists should integrate illness perceptions in their assessment in patients with chronic musculoskeletal pain; a qualitative analysis.

    PubMed

    van Wilgen, Paul; Beetsma, Anneke; Neels, Hedwig; Roussel, Nathalie; Nijs, Jo

    2014-06-01

    In the past decade, scientific evidence has shown that the biomedical model falls short in the treatment of patients with musculoskeletal pain. To understand musculoskeletal pain and a patient's health behavior and beliefs, physical therapists should assess the illness perceptions of their patients. In this quantitative study, we audiotaped the assessments of 19 primary care physical therapists on 27 patients and analyzed if and how illness perceptions were assessed. The Common Sense Model was used as the theoretical framework. We conclude that some of the domains of the Common Sense Model were frequently asked for (identity, causes and consequences), while others (timeline, treatment control, coherence, emotional representation) were used less frequently or seldom mentioned. The overall impression was that the assessments of the physical therapists were still bio-medically oriented in these patients with chronic musculoskeletal pain. PMID:24389339

  12. Complex and dynamic times of being chronically ill: Beyond disease trajectories of patients with ulcerative colitis.

    PubMed

    Shubin, Sergei; Rapport, Frances; Seagrove, Anne

    2015-12-01

    This article contributes to health research literature by problematizing the linear, sequential and intelligible understanding of time in the studies of illness. Drawing on the work of Martin Heidegger, it attempts to overcome the problem of considering the time of illness as either a framework controlling patients' experiences or a mind-dependent feature of their lives. The paper offers a conceptual analysis of the stories of ulcerative colitis patients from a recent clinical trial to present temporalities of illness as both objective and subjective, relational and dynamic. We attend to a combination of temporalities related to the ambiguous unfolding of illness and patients' relationships with such an unpredictable world of changing bodies, medical practices and temporal norms. Furthermore, our analysis reveals openness of times and considers ulcerative colitis patients as constantly evolving beings, with multiple possibilities brought about by illness. The paper highlights co-existence of times and considers patients' lives as incorporating a multiplicity of futures, presents and pasts. It concludes with conceptual observations about the consequences of developing complex approaches to illness in health research, which can better highlight the situatedness of patients and their multi-dimensional temporal foundations. PMID:26560409

  13. Barriers to Health Care for the Mentally Ill. Hearing before the Committee on Labor and Human Resources. United States Senate, Ninety-Ninth Congress, First Session on Oversight on Various Barriers to Health Care for the Chronically Mentally Ill (October 9, 1985).

    ERIC Educational Resources Information Center

    Congress of the U.S., Washington, DC. Senate Committee on Labor and Human Resources.

    This document contains the text of a Senate hearing on barriers to health care for the chronically mentally ill. Senator Orrin Hatch discusses the history of health care for the mentally ill and the changing role of the federal government, and Senator Edward Kennedy summarizes legislation initiated for the chronically mentally ill. The…

  14. The Role of Human Milk Immunomodulators in Protecting Against Viral Bronchiolitis and Development of Chronic Wheezing Illness

    PubMed Central

    Dixon, Dani-Louise

    2015-01-01

    Infants who are breastfed are at an immunological advantage when compared with formula fed infants, evidenced by decreased incidence of infections and diminished propensity for long term conditions, including chronic wheeze and/or asthma. Exclusive breastfeeding reduces the duration of hospital admission, risk of respiratory failure and requirement for supplemental oxygen in infants hospitalised with bronchiolitis suggesting a potentially protective mechanism. This review examines the evidence and potential pathways for protection by immunomodulatory factors in human milk against the most common viral cause of bronchiolitis, respiratory syncytial virus (RSV), and subsequent recurrent wheeze in infants. Further investigations into the interplay between respiratory virus infections such as RSV and how they affect, and are affected by, human milk immunomodulators is necessary if we are to gain a true understanding of how breastfeeding protects many infants but not all against infections, and how this relates to long-term protection against conditions such as chronic wheezing illness or asthma. PMID:27417364

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

    PubMed Central

    Fleary, Sasha A.; Heffer, Robert W.

    2013-01-01

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

  16. 'You say treatment, I say hard work': treatment burden among people with chronic illness and their carers in Australia.

    PubMed

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

    2013-11-01

    The aim of this study was to explore treatment burden among people with a variety of chronic conditions and comorbidities and their unpaid carers. The burden of living with ongoing chronic illness has been well established. However, the burden associated with proactively treating and managing chronic illness, commonly referred to as 'treatment burden', is less understood. This study helps to bridge this gap in our understanding by providing an in-depth analysis of qualitative data collected from a large sample of adults from diverse backgrounds and with various chronic conditions. Using semi-structured in-depth interviews, data were collected with a large sample of 97 participants that included a high representation of people from culturally and linguistically diverse backgrounds and indigenous populations across four regions of Australia. Interviews were conducted during May-October 2012, either face to face (n = 49) or over the telephone (n = 48) depending on the participant's preference and location. Data were analysed using an iterative thematic approach and the constant comparison method. The findings revealed four interrelated components of treatment burden: financial burden, time and travel burden, medication burden and healthcare access burden. However, financial burden was the most problematic component with the cost of treatment being significant for most people. Financial burden had a detrimental impact on a person's use of medication and also exacerbated other types of burden such as access to healthcare services and the time and travel associated with treatment. The four components of treatment burden operated in a cyclical manner and although treatment burden was objective in some ways (number of medications, and time to access treatment), it was also a subjective experience. Overall, this study underscores the urgent need for healthcare professionals to identify patients overwhelmed by their treatment and develop 'individualised' treatment

  17. Content and quality of websites supporting self-management of chronic breathlessness in advanced illness: a systematic review.

    PubMed

    Luckett, Tim; Disler, Rebecca; Hosie, Annmarie; Johnson, Miriam; Davidson, Patricia; Currow, David; Sumah, Anthony; Phillips, Jane

    2016-01-01

    Chronic breathlessness is a common, burdensome and distressing symptom in many advanced chronic illnesses. Self-management strategies are essential to optimise treatment, daily functioning and emotional coping. People with chronic illness commonly search the internet for advice on self-management. A review was undertaken in June 2015 to describe the content and quality of online advice on breathlessness self-management, to highlight under-served areas and to identify any unsafe content. Google was searched from Sydney, Australia, using the five most common search terms for breathlessness identified by Google Trends. We also hand-searched the websites of national associations. Websites were included if they were freely available in English and provided practical advice on self-management. Website quality was assessed using the American Medical Association Benchmarks. Readability was assessed using the Flesch-Kincaid grades, with grade 8 considered the maximum acceptable for enabling access. Ninety-one web pages from 44 websites met the inclusion criteria, including 14 national association websites not returned by Google searches. Most websites were generated in the USA (n=28, 64%) and focused on breathing techniques (n=38, 86%) and chronic obstructive pulmonary disease (n=27, 61%). No websites were found to offer unsafe advice. Adherence to quality benchmarks ranged from 9% for disclosure to 77% for currency. Fifteen (54%) of 28 written websites required grade ⩾9 reading level. Future development should focus on advice and tools to support goal setting, problem solving and monitoring of breathlessness. National associations are encouraged to improve website visibility and comply with standards for quality and readability. PMID:27225898

  18. Content and quality of websites supporting self-management of chronic breathlessness in advanced illness: a systematic review

    PubMed Central

    Luckett, Tim; Disler, Rebecca; Hosie, Annmarie; Johnson, Miriam; Davidson, Patricia; Currow, David; Sumah, Anthony; Phillips, Jane

    2016-01-01

    Chronic breathlessness is a common, burdensome and distressing symptom in many advanced chronic illnesses. Self-management strategies are essential to optimise treatment, daily functioning and emotional coping. People with chronic illness commonly search the internet for advice on self-management. A review was undertaken in June 2015 to describe the content and quality of online advice on breathlessness self-management, to highlight under-served areas and to identify any unsafe content. Google was searched from Sydney, Australia, using the five most common search terms for breathlessness identified by Google Trends. We also hand-searched the websites of national associations. Websites were included if they were freely available in English and provided practical advice on self-management. Website quality was assessed using the American Medical Association Benchmarks. Readability was assessed using the Flesch–Kincaid grades, with grade 8 considered the maximum acceptable for enabling access. Ninety-one web pages from 44 websites met the inclusion criteria, including 14 national association websites not returned by Google searches. Most websites were generated in the USA (n=28, 64%) and focused on breathing techniques (n=38, 86%) and chronic obstructive pulmonary disease (n=27, 61%). No websites were found to offer unsafe advice. Adherence to quality benchmarks ranged from 9% for disclosure to 77% for currency. Fifteen (54%) of 28 written websites required grade ⩾9 reading level. Future development should focus on advice and tools to support goal setting, problem solving and monitoring of breathlessness. National associations are encouraged to improve website visibility and comply with standards for quality and readability. PMID:27225898

  19. [Salivary glands secretory activity in patients with terminal chronic renal insufficiency on programmed dialysis].

    PubMed

    Afanas'ev, V V; Vavilova, T P; Osokin, M V; Pushkina, A V

    2006-01-01

    Saliva secretion speed and some biochemical mixed saliva characteristics were studied in patients with a terminal stage of chronic renal insufficiency. There was reduction of salivary function by more than 2 times and an increase of urea and creatinine concentrations in mixed saliva before the dialysis start. In case of higher urea content in saliva the speed of salivation was the highest that could evidence for an adequate response of the salivary glands to toxic action of nitrogen metabolism end products. The function restoration after hemodialysis took place not in all the patients. Amino acid catabolism product concentration in mixed saliva fell after hemodialysis and correlated directly with the amount of urea and creatinine in blood plasma. It took place also in "urea ricochet" when its content in blood increased sharply 1 hour after hemodialysis due to urea washout from the tissues. PMID:17159840

  20. Emotional control, styles of coping with stress and acceptance of illness among patients suffering from chronic somatic diseases.

    PubMed

    Janowski, Konrad; Kurpas, Donata; Kusz, Joanna; Mroczek, Bożena; Jedynak, Tomasz

    2014-02-01

    The purpose of this study was to analyse the associations of emotional control with sociodemographic and clinical variables in a sample of patients with a range of chronic somatic diseases. The relationships between emotional control, coping styles and adjustment to the disease were investigated. The sample consisted of 300 patients with the mean age of 54.60 ± 17.57 years. Courtauld Emotional Control Scale was used to measure the patients' tendency to suppress negative emotions, Coping Inventory for Stressful Situations was used to measure coping styles and Acceptance of Illness Scale was applied to determine adjustment to the disease. Patients with neurological conditions showed significantly lower suppression of anger. Levels of emotional control were found to be related to gender, age and educational level but not to the place of residence. Task-oriented style of coping with stress correlated positively with suppression of depression and anxiety, whereas acceptance of illness correlated negatively with suppression of anger. Levels of emotional control are only weakly related to the type of diagnosis; however, some clinical samples may show lower suppression of anger. Suppression of negative emotions is weakly related to adjustment indicators such as certain coping styles and acceptance of illness. PMID:23653433

  1. Religiously integrated cognitive behavioral therapy: a new method of treatment for major depression in patients with chronic medical illness.

    PubMed

    Pearce, Michelle J; Koenig, Harold G; Robins, Clive J; Nelson, Bruce; Shaw, Sally F; Cohen, Harvey J; King, Michael B

    2015-03-01

    Intervention studies have found that psychotherapeutic interventions that explicitly integrate clients' spiritual and religious beliefs in therapy are as effective, if not more so, in reducing depression than those that do not for religious clients. However, few empirical studies have examined the effectiveness of religiously (vs. spiritually) integrated psychotherapy, and no manualized mental health intervention had been developed for the medically ill with religious beliefs. To address this gap, we developed and implemented a novel religiously integrated adaptation of cognitive-behavioral therapy (CBT) for the treatment of depression in individuals with chronic medical illness. This article describes the development and implementation of the intervention. First, we provide a brief overview of CBT. Next, we describe how religious beliefs and behaviors can be integrated into a CBT framework. Finally, we describe Religiously Integrated Cognitive Behavioral Therapy (RCBT), a manualized therapeutic approach designed to assist depressed individuals to develop depression-reducing thoughts and behaviors informed by their own religious beliefs, practices, and resources. This treatment approach has been developed for 5 major world religions (Christianity, Judaism, Islam, Buddhism, and Hinduism), increasing its potential to aid the depressed medically ill from a variety of religious backgrounds. PMID:25365155

  2. Religiously Integrated Cognitive Behavioral Therapy: A New Method of Treatment for Major Depression in Patients With Chronic Medical Illness

    PubMed Central

    Pearce, Michelle J.; Koenig, Harold G.; Robins, Clive J.; Nelson, Bruce; Shaw, Sally F.; Cohen, Harvey J.; King, Michael B.

    2015-01-01

    Intervention studies have found that psychotherapeutic interventions that explicitly integrate clients’ spiritual and religious beliefs in therapy are as effective, if not more so, in reducing depression than those that do not for religious clients. However, few empirical studies have examined the effectiveness of religiously (vs. spiritually) integrated psychotherapy, and no manualized mental health intervention had been developed for the medically ill with religious beliefs. To address this gap, we developed and implemented a novel religiously integrated adaptation of cognitive–behavioral therapy (CBT) for the treatment of depression in individuals with chronic medical illness. This article describes the development and implementation of the intervention. First, we provide a brief overview of CBT. Next, we describe how religious beliefs and behaviors can be integrated into a CBT framework. Finally, we describe Religiously Integrated Cognitive Behavioral Therapy (RCBT), a manualized therapeutic approach designed to assist depressed individuals to develop depression-reducing thoughts and behaviors informed by their own religious beliefs, practices, and resources. This treatment approach has been developed for 5 major world religions (Christianity, Judaism, Islam, Buddhism, and Hinduism), increasing its potential to aid the depressed medically ill from a variety of religious backgrounds. PMID:25365155

  3. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review 1

    PubMed Central

    Macedo, Eliza Cristina; da Silva, Leila Rangel; Paiva, Mirian Santos; Ramos, Maria Natália Pereira

    2015-01-01

    Abstract Objective: to identify and analyze the evidence available regarding evaluation of burden and quality of life of mothers who are caregivers for children and adolescents with chronic illnesses. Method: an integrative review, undertaken in the electronic sources MEDLINE; Academic Search Premier; CINAHL; LILACS; SciELO and PubMed, between 2010 and 2014. Results: among the 22 documents selected, there was a predominance of convenience samples and non-experimental transversal designs, at the levels IV and III2. The caregiver burden scales used were the Zarit Burden Interview and Montgomery-Borgatta Caregiver Burden Scale-Revised along with the following instruments for evaluating quality of life: The World Health Organization Quality of Life-BREF Scale; Self-report questionnaires; The Ulm Quality of Life Inventory for Parents of chronically ill children; Asthma Caregiver Quality of Life Questionnaire; and the Nottingham Health Profile. Quality-of-life appears to be influenced in a complex and interrelated way by the physical and mental health of the mothers who are caregivers, in accordance with their level of independence, social relationships, environment, and the extent to which they see themselves as burdened. Conclusion: the revealing of the results for the evaluation of burden and quality of life of mothers who are caregivers has implications for the planning and implementation of effective interventions, by the multidisciplinary team, if they are to relieve the burden. PMID:26444180

  4. Religious vs. conventional cognitive behavioral therapy for major depression in persons with chronic medical illness: a pilot randomized trial.

    PubMed

    Koenig, Harold G; Pearce, Michelle J; Nelson, Bruce; Shaw, Sally F; Robins, Clive J; Daher, Noha S; Cohen, Harvey Jay; Berk, Lee S; Bellinger, Denise L; Pargament, Kenneth I; Rosmarin, David H; Vasegh, Sasan; Kristeller, Jean; Juthani, Nalini; Nies, Douglas; King, Michael B

    2015-04-01

    We examine the efficacy of conventional cognitive behavioral therapy (CCBT) versus religiously integrated CBT (RCBT) in persons with major depression and chronic medical illness. Participants were randomized to either CCBT (n = 67) or RCBT (n = 65). The intervention in both groups consisted of ten 50-minute sessions delivered remotely during 12 weeks (94% by telephone). Adherence to treatment was similar, except in more religious participants in whom adherence to RCBT was slightly greater (85.7% vs. 65.9%, p = 0.10). The intention-to-treat analysis at 12 weeks indicated no significant difference in outcome between the two groups (B = 0.33; SE, 1.80; p = 0.86). Response rates and remission rates were also similar. Overall religiosity interacted with treatment group (B = -0.10; SE, 0.05; p = 0.048), suggesting that RCBT was slightly more efficacious in the more religious participants. These preliminary findings suggest that CCBT and RCBT are equivalent treatments of major depression in persons with chronic medical illness. Efficacy, as well as adherence, may be affected by client religiosity. PMID:25816046

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

    ERIC Educational Resources Information Center

    Hurtig, Anita Landau; And Others

    1989-01-01

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

  6. The Effect of Home Caregiving Program for Family Members Providing Care for Chronically Ill Relative Client

    ERIC Educational Resources Information Center

    Mohammed, Hussein Jassim; Kamel, Andaleeb Abu

    2015-01-01

    Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Family members and friends haven't knowledge and skills to become caregivers as many studies found that, the need to involve in such program to enhance their ability to be…

  7. Family Stress with Chronic Childhood Illness: Cystic Fibrosis, Neuromuscular Disease, and Renal Disease.

    ERIC Educational Resources Information Center

    Holroyd, Jean; Guthrie, Donald

    1986-01-01

    Parents of children with neuromuscular disease, cystic fibrosis, and renal disease were compared with parents of control subjects matched by age to the clinical cases. The three clinical groups exhibited different patterns of stressful response, consistent with the nature of their illnesses and the requirements for care imposed on the families.…

  8. Personality Variables in Coping with the Stress of a Spouse's Chronic Illness.

    ERIC Educational Resources Information Center

    Schoeneman, Sandra Z.; And Others

    1983-01-01

    Identified wives (N=56) of hemodialysis patients at risk for problems adapting to their husband's illness, and explored personality variables that might enhance coping. Results showed greater external locus of control was related to poorer adjustment, but greater internal locus of control was not related to better adjustment. (Author/JAC)

  9. The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children.

    PubMed

    Ferro, Mark A; Boyle, Michael H

    2015-01-01

    The present study extends earlier research identifying an increased risk of anxiety among children with chronic physical illness (CwCPI) by examining a more complete model that explains how physical illness leads to increased symptoms of anxiety and depression. We tested a stress-generation model linking chronic physical illness to symptoms of anxiety and depression in a population-based sample of children aged 10 to 15 years. We hypothesized that having a chronic physical illness would be associated with more symptoms of anxiety and depression, increased levels of maternal depressive symptoms, more family dysfunction, and lower self-esteem; and, that maternal depressive symptoms, family dysfunction, and child self-esteem would mediate the influence of chronic physical illness on symptoms of anxiety and depression. Data came from the National Longitudinal Survey of Children and Youth (N = 10,646). Mediating processes were analyzed using latent growth curve modeling. Childhood chronic physical illness was associated with increases in symptoms of anxiety and depression, β = 0.20, p < 0.001. Mediating effects were also observed such that chronic physical illness resulted in increases in symptoms of maternal depression and family dysfunction, leading to declines in child self-esteem, and in turn, increases in symptoms of anxiety and depression. CwCPI are at-risk for symptoms of anxiety and depression. Some of this elevated risk appears to work through family processes and child self-esteem. This study supports the use of family-centered care approaches among CwCPI to minimize burden on families and promote healthy psychological development for children. PMID:24938212

  10. Parental perceptions of child vulnerability in a community-based sample: Association with chronic illness and health-related quality of life.

    PubMed

    Houtzager, Bregje A; Möller, Eline L; Maurice-Stam, Heleen; Last, Bob F; Grootenhuis, Martha A

    2015-12-01

    The study aimed to assess the prevalence of parental perceptions of a child's vulnerability (PPCV) in a Dutch community-based sample and its relationship with children's health and health-related quality of life (HRQoL). Parents completed the Child Vulnerability Scale and a socio-demographic questionnaire. The Pediatric Quality of Life Inventory 4.0 was administered to measure HRQoL. The prevalence of PPCV was assessed in relation to socio-demographic and health-related characteristics. In a three-step multiple hierarchical regression model, the mediational role of PPCV in the association between chronic illness and HRQoL was investigated. Participants were 520 Dutch children aged 5-18 years from nine Dutch schools. In all, 69 (13.3%) had a chronic illness; 1.9% was perceived vulnerable, 3.0% in groups 5-7 and 1.7% in groups 8-12 and 13-18. Younger age of the child, presence of a chronic illness and low HRQoL were associated with PPCV. PPCV partially mediated the negative association between chronic illness and HRQoL. In conclusion, PPCV is associated with adjustment to chronic illness. More research is needed regarding the mechanisms through which PPCV affects HRQoL and to examine whether PPCV can be targeted in parenting interventions. PMID:24842887

  11. Confirmatory Factor Analysis and Differential Relationships of the Two Subdomains of Negative Symptoms in Chronically Ill Psychotic Patients

    PubMed Central

    Stiekema, Annemarie P. M.; Liemburg, Edith J.; van der Meer, Lisette; Castelein, Stynke; Stewart, Roy; van Weeghel, Jaap; Aleman, André; Bruggeman, Richard

    2016-01-01

    Research suggests a two factor structure for negative symptoms in patients with psychotic disorders: social amotivation (SA) and expressive deficits (ED). Applying this two-factor structure in clinical settings may provide valuable information with regard to outcomes and to target treatments. We aimed to investigate 1) whether the factor structure is also supported in chronically ill patients with a psychotic disorder and 2) what the relationship is between these factors and functioning (overall functioning and living situation), depressive symptoms and quality of life. 1157 Patients with a psychotic disorder and a duration of illness of 5 years or more were included in the analysis (data selected from the Pharmacotherapy Monitoring Outcome Survey; PHAMOUS). A confirmatory factor analysis was performed using items of the Positive and Negative Syndrome Scale that were previously identified to reflect negative symptoms (N1-4, N6, G5, G7, G13, G16). Subsequently, regression analysis was performed on outcomes. The results confirmed the distinction between SA (N2, N4, G16) and ED (N1, N3, N6, G5, G7, G13) in chronically ill patients. Both factors were related to worse overall functioning as measured with the Health of the Nation Outcome Scales, ED was uniquely associated with residential living status. Higher scores for SA were associated with more depressive symptoms and worse quality of life. Thus, SA is most strongly related to level of social-emotional functioning, while ED are more related to living situation and thereby are indicative of level of everyday functioning. This subdivision may be useful for research purposes and be a valuable additional tool in clinical practice and treatment development. PMID:26895203

  12. Case management and quality of life: assessing treatment and outcomes for clients with chronic and persistent mental illness.

    PubMed Central

    Jinnett, K; Alexander, J A; Ullman, E

    2001-01-01

    OBJECTIVE: To examine the impact of treatment setting and exposure to case management services on the quality of life of U. S. veterans with chronic and persistent mental illness. DATA SOURCES/STUDY SETTING: Data were collected longitudinally on a panel of 895 clients enrolled in 14 pilot programs in Department of Veterans Affairs long-term psychiatric hospitals by the Serious Mental Illness Treatment Research and Evaluation Center during the period 1991-96. STUDY DESIGN: Data were collected using two primary survey instruments (clinician assessment and client assessment) at baseline, every six months for the first two years, and every year thereafter, for a total of four years of follow-up. Case management exposure over time and its impact on the client's quality of life represent the key variables in the study. Additional controls included a variety of sociodemographic, socioeconomic, and psychiatric characteristics. DATA COLLECTION/EXTRACTION METHODS: Hierarchical linear modeling was used to control for potential selection bias, test for the compositional effect of treatment setting, and examine the impact of case management exposure over time on the individual client's quality of life. PRINCIPAL FINDINGS: Increased exposure to case management results in an improved quality of life across several domains, including both objective and subjective dimensions for health, general, leisure, and social, and the subjective dimension only for housing. CONCLUSIONS: The study findings provide managers, clinicians, and policymakers a fuller understanding of how this mode of service delivery-case management-affects several domains of quality of life for clients with chronic illnesses. Images Figure 1 PMID:11324744

  13. Albumin concentration significantly impacts on free teicoplanin plasma concentrations in non-critically ill patients with chronic bone sepsis.

    PubMed

    Brink, A J; Richards, G A; Lautenbach, E E G; Rapeport, N; Schillack, V; van Niekerk, L; Lipman, J; Roberts, J A

    2015-06-01

    The impact of decreased serum albumin concentrations on free antibiotic concentrations in non-critically ill patients is poorly described. This study aimed to describe the pharmacokinetics of a high-dose regimen of teicoplanin, a highly protein-bound antibiotic, in non-critically ill patients with hypoalbuminaemia. Ten patients with chronic bone sepsis and decreased serum albumin concentrations (<35 g/L) receiving teicoplanin 12 mg/kg 12-hourly intravenously for 48 h followed by 12 mg/kg once daily were enrolled. Surgical debridement was performed on Day 3. Samples of venous blood were collected pre-infusion and post-infusion during the first 4 days of therapy. Total and free teicoplanin concentrations were assayed using validated chromatographic methods. The median serum albumin concentration for the cohort was 18 (IQR 15-24) g/L. After 48 h, the median (IQR) free trough (fC(min)) and total trough (tC(min)) concentrations were 2.90 (2.67-3.47) mg/L and 15.54 (10.28-19.12) mg/L, respectively, although trough concentrations declined thereafter. Clearance of the free concentrations was significantly high relative to the total fraction at 38.6 (IQR 29.9-47.8) L/h and 7.0 (IQR 6.8-9.8) L/h, respectively (P<0.001). Multiple linear regression analysis demonstrated that whereas total teicoplanin concentration did not impact on free concentrations (P=0.174), albumin concentration did (P<0.001). This study confirms the significant impact of hypoalbuminaemia on free concentrations of teicoplanin in non-critically ill patients, similar to that in critically ill patients. Furthermore, the poor correlation with total teicoplanin concentration suggests that therapeutic drug monitoring of free concentrations should be used in these patients. PMID:25819167

  14. The Association of Health Literacy with Illness and Medication Beliefs among Patients with Chronic Obstructive Pulmonary Disease

    PubMed Central

    Kale, Minal S.; Federman, Alex D.; Krauskopf, Katherine; Wolf, Michael; O’Conor, Rachel; Martynenko, Melissa; Leventhal, Howard; Wisnivesky, Juan P.

    2015-01-01

    Background 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. Methods 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. Results 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). Conclusions In this cohort of urban

  15. Chronic disease knowledge and its determinants among chronically ill adults in rural areas of Shanxi Province in China: a cross-sectional study

    PubMed Central

    2011-01-01

    Background Chronic disease knowledge is an important prerequisite for an individual to implement behavioural changes towards the prevention and control of chronic diseases (CDs). Limited information is available about the relationship between different levels of health services and CD knowledge among rural residents with CDs. This research explores the distribution characteristics of CD knowledge and its determinants among chronically ill adults in rural China according to the aspects of patients and health service providers. Methods A cross-sectional study was undertaken to estimate distribution characteristics of CD knowledge and collect data of socio-demographic characteristics, healthcare institutions attendances, duration of illness, and family history of CDs. Participants were 1060 rural adults with hypertension or type II diabetes. Correct responses to 12 questions were summed into a total knowledge score, and participants were divided into an adequate health knowledge group (score ≥ 6) or an inadequate health knowledge group (score < 5). Logistic regression was used determine the predictors of adequate CD health knowledge. Results The mean age of participants was 61.34 years (SD = 10 years). Out of a possible 12, the median score on the CD knowledge questionnaire was 3.0. About 25% of participants were classified as having adequate CD knowledge. Those who had a family history and/or long duration of CDs were more likely to have adequate health knowledge. Participants who received CD health information and self-care instructions from their physicians had 2.67 and 13.34 times greater odds of possessing adequate health knowledge than those who received no information, respectively. Adequate CD knowledge was strongly associated with regular check-ups, especially for those who attended township hospitals (OR = 40.17). Conclusions Having regular check-ups at a fixed healthcare institution and receiving health information from physicians are important measures

  16. MS Patients May Be Prone to Other Chronic Illnesses, Study Finds

    MedlinePlus

    ... WEDNESDAY, March 9, 2016 (HealthDay News) -- People with multiple sclerosis (MS) are more likely to have other chronic ... journal news release. Marrie is director of the Multiple Sclerosis Clinic at the University of Manitoba in Winnipeg, ...

  17. Ethical reasoning concerning the feeding of terminally ill cancer patients. Interviews with registered nurses experienced in the care of cancer patients.

    PubMed

    Jansson, L; Norberg, A

    1989-12-01

    In the terminal phase of life, some cancer patients have problems eating. Caregivers then have to decide whether or not to provide the patients with food by artificial means. Taped interviews concerning the treatment of terminally ill, mentally alert, old cancer patients who refuse food were conducted with 20 registered nurses who were regarded as "experienced and good nurses." Not one of these nurses considered using force or violence against the patients. It seemed that the question about whether to feed the patient was not as urgent as the question of whether to accept active euthanasia. The interviewees seemed quite certain about how they would treat the patient in different circumstances, but found it difficult to justify their judgements. Several stressed the importance of their personal experience with dying persons, and thought that one should act according to the Golden Rule. PMID:2512007

  18. Acceptable Care? Illness Constructions, Healthworlds, and Accessible Chronic Treatment in South Africa

    PubMed Central

    Harris, Bronwyn; Eyles, John; Moshabela, Mosa

    2015-01-01

    Achieving equitable access to health care is an important policy goal, with access influenced by affordability, availability, and acceptability of specific services. We explore patient narratives from a 5-year program of research on health care access to examine relationships between social constructions of illness and the acceptability of health services in the context of tuberculosis treatment and antiretroviral therapy in South Africa. Acceptability of services seems particularly important to the meanings patients attach to illness and care, whereas—conversely—these constructions appear to influence what constitutes acceptability and hence affect access to care. We highlight the underestimated role of individually, socially, and politically constructed healthworlds; traditional and biomedical beliefs; and social support networks. Suggested policy implications for improving acceptability and hence overall health care access include abandoning patronizing approaches to care and refocusing from treating “disease” to responding to “illness” by acknowledging and incorporating patients’ healthworlds in patient–provider interactions. PMID:25829509

  19. Chronic cocaine administration reduces striatal dopamine terminal density and striatal dopamine release which leads to drug-seeking behaviour.

    PubMed

    Lee, J; Parish, C L; Tomas, D; Horne, M K

    2011-02-01

    Drug addiction is associated with altered dopamine (DA) neurotransmission in the basal ganglia. We have previously shown that chronic stimulation of the dopamine D2 receptor (D(2)R) with cocaine results in reduced striatal DA terminal density. The aims of this study were to establish whether this reduction in DA terminal density results in reduced striatal DA release and increased cocaine-seeking behaviour and whether D(2)R antagonism can restore the cocaine-induced alterations in DA neurotransmission and drug-seeking behaviour. Rats were housed individually and either control, cocaine, haloperidol (D(2)R antagonist), or cocaine and haloperidol was administered in the drinking water for 16 weeks. Chronic cocaine treatment, which reduced striatal DA terminal density by 20%, resulted in a reduction in basal (-34%) and cocaine-evoked (-33%) striatal DA release and increased cocaine-seeking behaviour. These cocaine-mediated effects on striatal DA terminal density, DA release and drug-seeking could be prevented by co-administration with haloperidol. Basal and cocaine-evoked DA release in the striatum directly correlated with DA terminal density and with preference for cocaine. We conclude that striatal DA terminal density and DA release is an important factor in maintaining drug preference and should be considered as a factor in drug-seeking behaviour and relapse. PMID:21129449

  20. College Adjustment and Subjective Well-Being when Coping with a Family Member's Illness

    ERIC Educational Resources Information Center

    Schmidt, Christa K.; Welsh, Anne C.

    2010-01-01

    Individuals coping with the chronic or terminal illness of a family member are presented with a unique challenge that may influence their adjustment and overall well-being. This study investigated variables that relate to college adjustment and subjective well-being, including attachment, social support, coping, and illness-related constructs, in…

  1. The illness and everyday living: close interplay of psychopathological syndromes and psychosocial functioning in chronic schizophrenia.

    PubMed

    Schaub, Daniela; Brüne, Martin; Jaspen, Elisabeth; Pajonk, Frank-Gerald; Bierhoff, Hans-Werner; Juckel, Georg

    2011-03-01

    The interaction of psychopathological states and psychosocial functioning determine the long-term course of schizophrenia and its treatment. To be able to achieve this interplay better, exact assessment of psychosocial functioning is needed besides measurement of psychopathology. Using the Personal and Social Performance (PSP) Scale, examination of the association between psychosocial functioning and psychopathology was conducted in a sample of 103 patients with chronic schizophrenia. Rating instruments were in addition Global Assessment of Functioning Scale and Social and Occupational Functioning Assessment Scale, as well as Positive and Negative Syndrome Scale (PANSS), Clinical Global Impression Scale, and Mini-ICF-APP-Rating for Mental Disorders (Mini-ICF-APP). Besides good psychometric properties for the PSP scale in this chronic sample, we found, as expected, significant associations between the two relevant outcome domains: results showed significant negative correlations between PSP and PANSS. Findings prove the close interplay between social functioning and psychopathology in the chronic course of schizophrenia. PMID:20652295

  2. The ethics of withdrawing artificial food and fluid from terminally ill patients: an end-of-life dilemma for Japanese nurses and families.

    PubMed

    Konishi, Emiko; Davis, Anne J; Aiba, Toshiaki

    2002-01-01

    End-of-life issues have become an urgent problem in Japan, where people are among the longest lived in the world and most of them die while connected to high-technology medical equipment. This study examines a sensitive end-of-life ethical issue that concerns patients, families and nurses: the withdrawal of artificial food and fluid from terminally ill patients. A sample of 160 Japanese nurses, who completed a questionnaire that included forced-choice and open-ended questions, supported this act under only two specific conditions: if the patient requested it, and if it relieved the patient's suffering. They considered that the doctor's orders, the family's request, or the patient's advanced age did not ethically justify this act. A small number of people who had recently lost a relative took part in semistructured interviews focusing on their experiences of their terminally ill relatives being given artificial food and fluid. Ethical, social and cultural factors surrounding this issue are discussed. PMID:16010894

  3. Evaluation of a transitional residential programme for homeless chronically mentally ill people.

    PubMed

    Murray, R L; Baier, M

    1995-01-01

    This paper reports a successful transitional programme in the USA. The research programme evaluation covered 5.5 years and 228 severely and persistently mentally ill homeless clients who lived in a transitional residential centre. Forty-eight per cent of the residents achieved the Programme's goals of obtaining and maintaining permanent housing and a disability pension or a job. Achievement of client goals was positively related to length of stay of 3 months or more, to five or more previous psychiatric hospitalizations, and to participation in two or more ongoing activities whilst in the programme. Psychiatric diagnosis was not directly related to goal attainment in this programme. PMID:7773702

  4. Awareness and Use of California's Paid Family Leave Insurance Among Parents of Chronically Ill Children

    PubMed Central

    Schuster, Mark A.; Chung, Paul J.; Elliott, Marc N.; Garfield, Craig F.; Vestal, Katherine D.; Klein, David J.

    2016-01-01

    Context In 2004, California's Paid Family Leave Insurance Program (PFLI) became the first state program to provide paid leave to care for an ill family member. Objective To assess awareness and use of the program by employed parents of children with special health care needs, a population likely to need leave. Design, Setting, and Participants Telephone interviews with successive cohorts of employed parents before (November 21, 2003-January 31, 2004; n=754) and after (November 18, 2005-January 31, 2006; n=766) PFLI began, randomly sampled from 2 children's hospitals, one in California (with PFLI) and the other in Illinois (without PFLI). Response rates were 82% before and 81% after (California), and 80% before and 74% after (Illinois). Main Outcome Measures Taking leave, length of leave, unmet need for leave, and awareness and use of PFLI. Results Similar percentages of parents at the California site reported taking at least 1 day of leave to care for their ill child before (295 [81%]) and after (327 [79%]) PFLI, taking at least 4 weeks before (64 [21%]) and after (74 [19%]) PFLI, and at least once in the past year not missing work despite believing their child's illness necessitated it before (152 [41%]) and after (156 [41%]) PFLI. Relative to Illinois, parents at the California site reported no change from before to after PFLI in taking at least 1 day of leave (difference of differences, −3%; 95% confidence interval [CI], −13% to 7%); taking at least 4 weeks of leave (1%; 95% CI, −9% to 10%); or not missing work, despite believing their child's illness necessitated it (−1%; 95% CI, −13% to 10%). Only 77 parents (18%) had heard of PFLI approximately 18 months after the program began, and only 20 (5%) had used it. Even among parents without other access to paid leave, awareness and use of PFLI were minimal. Conclusions Parents of children with special health care needs receiving care at a California hospital were generally unaware of PFLI and rarely used

  5. Discipline and the Chronically Ill Child: What Are the Management Strategies To Promote Positive Patient Outcomes?

    ERIC Educational Resources Information Center

    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…

  6. Subscales to the Taylor Manifest Anxiety Scale in Three Chronically Ill Populations.

    ERIC Educational Resources Information Center

    Moore, Peter N.; And Others

    1984-01-01

    Examines factors of anxiety in the Taylor Manifest Anxiety Scale in 150 asthma, tuberculosis, and chronic pain patients. Key cluster analysis revealed five clusters: restlessness, embarrassment, sensitivity, physiological anxiety, and self-confidence. Embarrassment is fairly dependent on the other factors. (JAC)

  7. Transition to adult care: Systematic assessment of adolescents with a chronic illness and their medical teams

    PubMed Central

    Huang, Jeannie S.; Gottschalk, Michael; Pian, Mark; Dillon, Lindsay; Barajas, Daniela; Bartholomew, L. Kay

    2011-01-01

    Objective To examine the process of transition from pediatric to adult healthcare services from the perspectives of young adults with chronic disease and pediatric and adult healthcare providers. Study design A qualitative approach using focus group interviews was performed to investigate transition experiences. Novel innovation games were also utilized to generate data. Content and narrative analyses of interview transcripts were performed. Results Six focus groups were conducted with 10 young adults with chronic disease and 24 healthcare providers. Content analysis yielded 3 content domains: transition experiences in the context of relationships between patients, parents, and healthcare providers; differences between pediatric and adult-oriented medicine and how these differences inhibit or facilitate transition; and identifying transition services that should be provided to young patients with chronic disease. Conclusion This study demonstrates the need for gradual transfer of disease management from parent to child and better communication between adult and pediatric services during the transition process. Pediatric medicine and adult medicine represent different subcultures; acknowledging these differences may improve cooperation during transition from pediatric to adult providers. Young adult patients with chronic disease embrace the use of technology for specific interventions to improve the transition experience. PMID:21784450

  8. Boundary Ambiguity in Parents with Chronically Ill Children: Integrating Theory and Research

    ERIC Educational Resources Information Center

    Berge, Jerica M.; Holm, Kristen E.

    2007-01-01

    This article integrates theory and research related to boundary ambiguity in parents of children with a chronic health condition. We propose that boundary ambiguity is a risk factor for psychological distress in these parents. Clinical applications and a case example highlight how boundary ambiguity can be assessed and managed in clinical settings…

  9. The Australian Prevention Partnership Centre: systems thinking to prevent lifestyle-related chronic illness.

    PubMed

    Wilson, Andrew; Wutzke, Sonia; Overs, Marge

    2014-01-01

    Chronic diseases are the major cause of death in Australia and the biggest contributor to premature death and disability. Although prevention of chronic disease can be effective and cost-effective, it has proven difficult to systematically implement interventions that target important lifestyle-related risk factors for chronic disease such as poor nutrition, physical inactivity and harmful alcohol use. Prevention efforts targeting these lifestyle-related risk factors have had mixed success due to issues around designing and implementing effective interventions that address the complexity of risk factors, and incorporating evidence and implementing interventions at a scale, duration, intensity and quality required to achieve population effects. There is increasing recognition that multilevel, multisector approaches are required for the effective and sustained prevention of complex chronic disease. The Australian Prevention Partnership Centre, one of two National Health and Medical Research Council Partnership Centres established in 2013, is researching and developing systems perspectives to prevent lifestyle-related chronic disease in Australia. The Centre's collaborative approach is providing opportunities for researchers to work with policy makers and practitioners to develop research questions, conduct research, and analyse, interpret and disseminate the findings. As such, it is the model of interaction that is being tested as much as the specific projects. With its funding partners, the Centre has developed plans for more than 30 projects. It has also established four capacity units that will improve the gathering, sharing and use of evidence to build a prevention system in Australia. The Centre is exploring new ways to advance prevention by bringing together researchers, policy makers and practitioners to determine the information and actions needed for an effective prevention system for Australia. PMID:25828440

  10. How can non-clinical case management complement clinical support for people with chronic mental illness residing in the community?

    PubMed

    Dadich, Ann; Fisher, Karen R; Muir, Kristy

    2013-01-01

    The recovery of people with chronic mental illness who reside in the community requires integrated support services. Yet evidence of poor collaboration in the mental health system abounds and there is little understanding of how non-clinical case managers can work effectively with clinical services. This article analyses an example from the mental health Housing and Accommodation Support Initiative in Australia. Using interviews (42 consumers, family members and mental health workers) and consumer care plans (20), the article explores how clinical and non-clinical case managers worked together in consumer care planning and examines the perceived influence of support. The research found they worked effectively in care planning when the planning was consumer-driven; there was active participation from consumers, non-clinical and clinical case managers; and when planning was treated as a process, with incremental goals, reflective practice, as well as shared understanding and commitment to the collaboration. PMID:23227979

  11. Recent intimate partner violence among people with chronic mental illness: findings from a national cross-sectional survey

    PubMed Central

    Khalifeh, Hind; Oram, Sian; Trevillion, Kylee; Johnson, Sonia; Howard, Louise M.

    2015-01-01

    Background People with mental illness are at increased risk of intimate partner violence (IPV) victimisation, but little is known about their risk for different forms of IPV, related health impact and help-seeking. Aims To estimate the odds for past-year IPV, related impact and disclosure among people with and without pre-existing chronic mental illness (CMI). Method We analysed data from 23 222 adult participants in the 2010/2011 British Crime Survey using multivariate logistic regression. Results Past-year IPV was reported by 21% and 10% of women and men with CMI, respectively. The adjusted relative odds for emotional, physical and sexual IPV among women with versus without CMI were 2.8 (CI = 1.9–4.0), 2.6 (CI = 1.6–4.3) and 5.4 (CI = 2.4–11.9), respectively. People with CMI were more likely to attempt suicide as result of IPV (aOR = 5.4, CI = 2.3–12.9), less likely to seek help from informal networks (aOR = 0.5, CI = 0.3–0.8) and more likely to seek help exclusively from health professionals (aOR = 6.9, CI = 2.6–18.3) Conclusions People with CMI are not only at increased risk of all forms of IPV, but they are more likely to suffer subsequent ill health and to disclose exclusively to health professionals. Therefore, health professionals play a key role in addressing IPV in this population. PMID:26045349

  12. Promotora assisted depression care among predominately Hispanic patients with concurrent chronic illness: Public care system clinical trial design.

    PubMed

    Ell, Kathleen; Aranda, María P; Wu, Shinyi; Oh, Hyunsung; Lee, Pey-Jiuan; Guterman, Jeffrey

    2016-01-01

    Depression frequently negatively affects patient overall self-care and social stress management within United States safety net care systems. Rates of major depression are significantly high among low-income predominantly Hispanic/Latino with chronic illness, such as diabetes and heart disease. The study design of the A Helping Hand to Activate Patient-Centered Depression Care among Low-income Patients (AHH) randomized clinical trial aims to enhance patient depression care receipt and overall bio-psychosocial self-care management. The AHH trial is conducted in collaboration with three Los Angeles County Department of Health Services (DHS) safety net clinics that provide Patient-Centered Medical Home (PCMH) care. The study compares AHH intervention (AHH) in which community-based bilingual promotoras provide in-person or telephone patient engagement and intervention aimed to reduce the burden and strain on patients, families, and care providers by assessing, enhancing, and facilitating patient depression and co-morbid illness self-care management skill, and activating patient communication with clinic medical providers versus DHS PCMH team usual care (PCMHUC). AHH independent bilingual recruiters screened 1957 and enrolled 348 predominantly Hispanic/Latino patients, of whom 296 (85%) had diabetes, 14 (4%) with heart disease, and 38 (11%) with both diseases. Recruiters identified depressed patients by baseline Patient Health Questionnaire-9 scores of 10 or more, completed baseline assessments, and randomized patients to either AHH or PCMHUC study group. The comprehensive assessments will be repeated at 6 and 12months by an independent bilingual follow-up interviewer. Baseline and outcome data include mental health assessment and treatment receipt, co-morbid illness self-care, social relationships, and environmental stressor assessments. PMID:26600285

  13. Narcissistic rage: The Achilles’ heel of the patient with chronic physical illness

    PubMed Central

    Hyphantis, Thomas; Almyroudi, Augustina; Paika, Vassiliki; Goulia, Panagiota; Arvanitakis, Konstantinos

    2009-01-01

    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. PMID:19936167

  14. Strategies for Coping in a Complex World: Adherence Behavior Among Older Adults with Chronic Illness

    PubMed Central

    Ross-Degnan, Dennis; Adams, Alyce S.; Safran, Dana Gelb; Soumerai, Stephen B.

    2007-01-01

    Background Increasing numbers of medicines increase nonadherence. Little is known about how older adults manage multiple medicines for multiple illnesses. Objectives To explore how older adults with multiple illnesses make choices about medicines. Design Semistructured interviews with older adults taking several medications. Accounts of respondents’ medicine-taking behavior were collected. Participants Twenty community-dwelling seniors with health insurance, in Eastern Massachusetts, aged 67–90, (4–12 medicines, 3–9 comorbidities). Approach Qualitative analysis using constant comparison to explain real choices made about medicines in the past (“historical”) and hypothetical (“future”) choices. Results Respondents reported both past (“historical”) choices and hypothetical (“future”) choices between medicines. Although people discussed effectiveness and future risk of the disease when prompted to prioritize their medicines (future choices), key factors leading to nonadherence (historical choices) were costs and side effects. Specific choices were generally dominated by 1 factor, and respondents rarely reported making explicit trade-offs between different factors. Factors affecting 1 choice were not necessarily the same as those affecting another choice in the same person. There was no evidence of “adherent” personalities. Conclusion Prescribing a new medicine, a change in provider or copayment can provoke new choices about both new and existing medications in older adults with multiple morbidities. PMID:17406952

  15. Spiritual Coping and Psychosocial Adjustment of Adolescents with Chronic Illness: The Role of Cognitive Attributions, Age, and Disease Group

    PubMed Central

    Reynolds, Nina; Mrug, Sylvie; Guion, Kimberly

    2012-01-01

    Purpose Spiritual coping is an important determinant of adjustment in youth with chronic illness, but the mechanisms through which it affects outcomes have not been elucidated. It is also unknown whether the role of spiritual coping varies by age or disease group. This study evaluated whether general cognitive attributions explain the effects of spiritual coping on internalizing and externalizing problems in adolescents with cystic fibrosis and diabetes and whether these relationships vary by age or disease group. Methods In this cross-sectional study, adolescents (N=128; M=14.7 yrs) diagnosed with cystic fibrosis or diabetes completed measures of spiritual coping and attributional style. Adolescents and their caregivers reported on adolescents’ internalizing and externalizing problems. Results Overall, positive spiritual coping was associated with fewer internalizing and externalizing problems. Negative spiritual coping was related to more externalizing problems, and for adolescents with cystic fibrosis only, also internalizing problems. Optimistic attributions mediated the effects of positive spiritual coping among adolescents with diabetes. The results did not vary by age. Conclusions An optimistic attribution style may help explain the effects of positive, but not negative, spiritual coping on adjustment of youth with diabetes. Youth with progressive, life-threatening illnesses, such as cystic fibrosis, may be more vulnerable to the harmful effects of negative spiritual coping. Future research should examine if addressing spiritual concerns and promoting optimistic attributions improves adolescents’ emotional and behavioral functioning. PMID:23298988

  16. From Body to Mind and Spirit: Qigong Exercise for Bereaved Persons with Chronic Fatigue Syndrome-Like Illness

    PubMed Central

    Li, Jie; Chan, Jessie S. M.; Chow, Amy Y. M.; Yuen, Lai Ping; Chan, Cecilia L. W.

    2015-01-01

    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. PMID:26504478

  17. From Body to Mind and Spirit: Qigong Exercise for Bereaved Persons with Chronic Fatigue Syndrome-Like Illness.

    PubMed

    Li, Jie; Chan, Jessie S M; Chow, Amy Y M; Yuen, Lai Ping; Chan, Cecilia L W

    2015-01-01

    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. PMID:26504478

  18. Between disruption and continuity: challenges in maintaining the 'biographical we' when caring for a partner with a severe, chronic illness.

    PubMed

    Aasbø, Gunvor; Solbraekke, Kari Nyheim; Kristvik, Ellen; Werner, Anne

    2016-06-01

    Chronic obstructive pulmonary disease (COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose 'biographical we' as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers. PMID:26852721

  19. Setting the stage for chronic health problems: cumulative childhood adversity among homeless adults with mental illness in Vancouver, British Columbia

    PubMed Central

    2014-01-01

    Background 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. Methods 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. Results 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. Conclusions 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. Trials registration This trial has been registered with the International Standard Randomized Control Trial Number Register and assigned ISRCTN42520374. PMID:24726046

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

    PubMed Central

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

    2013-01-01

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

  1. Alterations of serum reverse triiodothyronine and thyroxine kinetics in chronic renal failure: role of nutritional status, chronic illness, uremia, and hemodialysis.

    PubMed

    Kaptein, E M; Feinstein, E I; Nicoloff, J T; Massry, S G

    1983-12-01

    ātients with end-stage chronic renal failure (CRF) and those receiving dialysis therapy have normal or decreased serum total T4 (TT4), reduced serum total T3 (TT3), and normal total reverse T3 (TrT3) levels. Those with nonrenal nonthyroidal illnesses or malnutrition have low TT4 and TT3 but elevated TrT3 values. To evaluate the mechanism(s) for the normal TrT3 levels in CRF, we performed intravenous bolus kinetic studies of rT3 and T4 in patients with CRF, in those treated with chronic hemodialysis, in patients with nonrenal nonthyroidal illnesses, and in normal subjects. The CRF patients were selected to have good nutritional status as indicated by normal serum transferrin, relative body weight, and body mass index values. The CRF patients had normal TrT3, TT4, and free T4 values, increased free fraction of rT3, free rT3, and thyroxine-binding globulin levels, and decreased TT3 concentrations. Noncompartmental analysis of the rT3 kinetics indicated normal production rate, reduced cellular clearance rate, and increased pool size and residence time values in both the CRF and nonrenal patients. In CRF, the serum clearance rate was normal, but the fractional rate of exit, permeability, extravascular binding, and the apparent volume of distribution were increased. In contrast, the nonrenal patients had reduced serum clearance rate, permeability, and extravascular binding, whereas the fractional rate of exit and apparent volume of distribution were not significantly altered. The T4 kinetics in CRF paralleled those of the nonrenal patients, with a reduced fractional rate of exit and permeability in both groups.(ABSTRACT TRUNCATED AT 250 WORDS) PMID:6588250

  2. Chronic pain associated with the Chikungunya Fever: long lasting burden of an acute illness

    PubMed Central

    2010-01-01

    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 < 0.01) and both the affective (18.8 ± 6.2 vs 13.4 ± 6.7; p < 0.01) and sensory subscores (34.3 ± 10.7 vs 25.0 ± 9.9; p < 0.01) were significantly higher in patients with NC. The mean pain interference in life activities calculated from the Brief Pain Inventory (BPI) was significantly higher in patients with chronic pain than in patients without it (6.8 ± 1.9 vs 5.9 ± 1.9, p < 0.05). This score was also significantly higher in patients with NC than in those without such a feature (7.2 ± 1.5 vs 6.1 ± 1.9, p < 0.05). Conclusions There

  3. A First Step on the Journey to High-Quality Chronic Illness Care.

    PubMed

    Wagner, Edward H

    2016-01-01

    The Atlantic Healthcare Collaboration (AHC) conducted a quality improvement initiative to improve chronic disease prevention and management for the four Atlantic provinces and their regional health authorities. Leaders and front-line teams carried out a range of projects, each suited to the needs of that region. This initiative helped build the case for improvement, increased the motivation to change, exposed participants to proven ideas for improvement and supported participating organizations in developing the capacity and culture to test, implement and spread improvements. The AHC also created a politically safe learning community with the potential to support and sustain the work of chronic care improvement over time. In carrying this initiative forward, the greatest challenge will be the magnitude of work to be done. PMID:27009640

  4. Beware of being unaware: racial/ethnic disparities in chronic illness in the USA.

    PubMed

    Chatterji, Pinka; Joo, Heesoo; Lahiri, Kajal

    2012-09-01

    We study racial/ethnic disparities in awareness of chronic diseases using biomarker data from the 2006 Health and Retirement Study. We explore two alternative definitions of awareness and estimate a trivariate probit model with selection, which accounts for common, unmeasured factors underlying the following: (1) self-reporting chronic disease; (2) participating in biomarker collection; and (3) having disease, conditional on participating in biomarker collection. Our findings suggest that current estimates of racial/ethnic disparities in chronic disease are sensitive to selection, and also to the definition of disease awareness used. We find that African-Americans are less likely to be unaware of having hypertension than non-Latino whites, but the magnitude of this effect falls appreciably after we account for selection. Accounting for selection, we find that African-Americans and Latinos are more likely to be unaware of having diabetes compared to non-Latino whites. These findings are based on a widely used definition of awareness - the likelihood of self-reporting disease among those who have disease. When we use an alternative definition of awareness, which considers an individual to be unaware if he or she actually has the disease conditional on self-reporting not having it, we find higher levels of unawareness among racial/ethnic minorities versus non-Latino whites for both hypertension and diabetes. PMID:22764038

  5. Experiencing Wellness Within Illness: Exploring a Mindfulness-Based Approach to Chronic Back Pain.

    PubMed

    Doran, Natasha J

    2014-04-11

    In this article I explore how mindfulness-based techniques affect perceptions and management of back pain and discuss these findings in relation to embodiment theory and liminality. Sixteen volunteers attending Breathworks for persistent back pain took part in this study. The theme of "embodied awareness" formed the core category, as all participants reported a change in their experience of pain. Such embodied changes are described in relation to five subthemes: unpacking the pain experience, changing relationship to pain, letting go of the label, self-compassion and acceptance, and wellness within illness. Learning to respond rather than react, and living moment by moment enabled participants to replace a cycle of suffering with one of acceptance. Rather than fearing pain, participants found ways to move through it and live with it. Although some expressed finding a sense of wellness despite ongoing pain, all participants reported greater acceptance and a better quality of life. PMID:24728110

  6. Prediction of self-monitoring compliance: application of the theory of planned behaviour to chronic illness sufferers.

    PubMed

    McGuckin, Conor; Prentice, Garry R; McLaughlin, Christopher G; Harkin, Emma

    2012-01-01

    Chronic obstructive pulmonary disease (COPD), diabetes and asthma are chronic illnesses that affect a substantial number of people. The continued high cost of clinic- and hospital-based care provision in these areas could be reduced by patients self-monitoring their condition more effectively. Such a move requires an understanding of how to predict self-monitoring compliance. Ajzen's theory of planned behaviour (TPB) makes it possible to predict those clients who will comply with medical guidelines, prescription drug intake and self-monitoring behaviours (peak flow or blood sugar levels). Ninety-seven clients attending a medical centre located in a large urbanised area of Northern Ireland completed TPB questionnaires. Significant amounts of variance explained by the TPB model indicated its usefulness as a predictor of self-monitoring behaviour intentions in the sample. The results also highlighted the importance of subjective norm and perceived behavioural control within the TPB in predicting intentions. The utility of the TPB in this study also provides evidence for health promotion professionals that costly clinic/hospital treatment provision can be reduced, whilst also being satisfied with ongoing client self-monitoring of their condition. PMID:22111866

  7. Effects of qigong exercise on fatigue, anxiety, and depressive symptoms of patients with chronic fatigue syndrome-like illness: a randomized controlled trial.

    PubMed

    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 < 0.001], physical fatigue score [F(1,135) = 20.852, P < 0.001] and depression score [F(1,135) = 9.918, P = 0.002] were significantly improved and mental fatigue score [F(1,135) = 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. PMID:23983785

  8. Predictors of Self-Reported Physical Symptoms in Low-Income, Inner-City African American Women: The Role of Optimism, Depressive Symptoms, and Chronic Illness

    ERIC Educational Resources Information Center

    Jones, Deborah J.; O'Connell, Cara; Gound, Mary; Heller, Laurie; Forehand, Rex

    2004-01-01

    In this study we examined the association of optimism and depressive symptoms with self-reported physical symptoms in 241 low-income, inner-city African American women with or without a chronic illness (HIV). Although optimism was not a unique predictor of self-reported physical symptoms over and above depressive symptoms, optimism interacted with…

  9. Modern Models of Psychosocial Adaptation to Chronic Illness and Disability as Viewed through the Prism of Lewin's Field Theory: A Comparative Review

    ERIC Educational Resources Information Center

    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…

  10. [The resource orientated integration of chronic mentally ill into regular employment via "One-Euro-Jobs"--initial experiences of a model project].

    PubMed

    Dillo, W; Lampen, S; Neumann, A; Steinmüller, S; Wellmann, B

    2010-05-01

    Until recently the vocational rehabilitation of chronic mentally ill often resulted in employment in the framework of sheltered workshops. There are an increased number of workshops and day clinics but in this context the patient does not come in contact with the everyday working environment. However, several multicenter studies demonstrated that "Individual Placement Support" (IPS) is more effective than vocational services. The aim of our project is to show that this concept is applicable even to patients with chronic and severe psychiatric diseases. We created "One-Euro-Jobs" for patients with chronic mental illnesses within regular employments in the confinements of our clinic. The choice of workplace was carried out according to the individual experience and knowledge and included the library, central buying and post office. Until now 15 mentally ill patients with an average disease duration of 11 years were included in the project. 1 patient discontinued within the first 3 weeks. The others were occupied on average for 9 months. Our project shows that integration of chronically mental ill patients in regular employment environments is possible. Concerns that the pressure and stress would be too extreme were proved to be unfounded. PMID:20221982

  11. Reducing Medical Students' Stigmatization of People with Chronic Mental Illness: A Field Intervention at the "Living Museum" State Hospital Art Studio

    ERIC Educational Resources Information Center

    Cutler, Janis L.; Harding, Kelli J.; Hutner, Lucy A.; Cortland, Clarissa; Graham, Mark J.

    2012-01-01

    Objective: The authors designed an intervention to reduce beginning medical students' stigmatization of people with chronic mental illness (CMI). Methods: Pre-clinical medical students visited a state psychiatric facility's "Living Museum," a combination patient art studio/display space, as the intervention. During the visit, students interacted…

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

    ERIC Educational Resources Information Center

    Bonjean, Charles M., Ed.; And Others

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

  13. Cooking and Nutrition Basics. An Instructors Guide for Teaching Cooking Skills and Basic Nutrition to the Chronically Mentally Ill Who Are Being Trained for Independent Living.

    ERIC Educational Resources Information Center

    Barngrover, Lavone

    Designed for those with teaching skills as well as those without and for those with backgrounds in nutrition and those without, this handbook provides information on how to organize and conduct nutrition education and cooking training for the chronically mentally ill. The first section describes the pilot program which developed the handbook,…

  14. An analysis of sickness absence in chronically ill patients receiving Complementary and Alternative Medicine: A longterm prospective intermittent study

    PubMed Central

    Moebus, Susanne; Lehmann, Nils; Bödeker, Wolfgang; Jöckel, Karl-Heinz

    2006-01-01

    Background The popularity of complementary and alternative medicine (CAM) has led to a growing amount of research in this area. All the same little is known about the effects of these special treatments in every-day practice of primary care, delivered by general practitioners within the health insurance system. From 1994 to 2000 more than 20 German Company health insurances initiated the first model project on CAM according to the German social law. Aim of this contribution is to investigate the effectiveness of multi-modal CAM on chronic diseases within primary health care. Methods A long-term prospective intermittent study was conducted including 44 CAM practitioners and 1221 self-selected chronically ill patients (64% women) of whom 441 were employed. Main outcome measure is sick-leave, controlled for secular trends and regression-to-the mean and self-perceived health status. Results Sick-leave per year of 441 patients at work increased from 22 (SD ± 45.2) to 31 (± 61.0) days within three years prior to intervention, and decreased to 24 (± 55.6) in the second year of treatment, sustaining at this level in the following two years. Detailed statistical analysis show that this development exceeds secular trends and the regression-toward-the-mean effect. Sick-leave reduction was corroborated by data on self-reported improvement of patients' health status. Conclusion Results of this longterm observational study show a reduction of sick leave in chronically ill patients after a complex multimodal CAM intervention. However, as this is an uncontrolled observational study efficacy of any specific CAM treatment can not be proven. The results might indicate an general effectiveness of CAM in primary care, worthwhile further investigations. Future studies should identify the most suitable patients for CAM practices, the most appropriate and safe treatments, provide information on the magnitude of the effects to facilitate subsequent definitive randomised controlled

  15. A practice-based information system for multi-disciplinary care of chronically ill patients: what information do we need? The Community Care Coordination Network Database Group.

    PubMed Central

    Moran, W. P.; Messick, C.; Guerette, P.; Anderson, R.; Bradham, D.; Wofford, J. L.; Velez, R.

    1994-01-01

    Primary care physicians provide longitudinal care for chronically ill individuals in concert with many other community-based disciplines. The care management of these individuals requires data not traditionally collected during the care of well, or acutely ill individuals. These data not only concern the patient, in the form of patient functional status, mental status and affect, but also pertain to the caregiver, home environment, and the formal community health and social service system. The goal of the Community Care Coordination Network is to build a primary care-based information system to share patient data and communicate patient related information among the community-based multi-disciplinary teams. One objective of the Community Care Coordination Network is to create a Community Care Database for chronically ill individuals by identifying those data elements necessary for efficient multi-disciplinary care. PMID:7949995

  16. Socialization patterns and sexual problems of the institutionalized chronically ill and physically disabled.

    PubMed

    Paradowski, W

    1977-02-01

    A post hoc survey of spontaneous remarks and actions bearing on social and sexual adjustment was done on 155 long-term physically disabled patients in a chronic-care hospital. Thirty-five percent were found to be involved in an active dyadic relationship; the great majority of these were between unmarried patients within the hospital. The remaining 65% were socially unattached. A large proportion of both socially attached and socially unattached patients acknowledged achieving some sort of sexual outlet. The importance of opportunity for sexual activity is discussed as it relates to traditional methods for dealing with the problems of personal confidence and physical competence of the physically disabled. PMID:138408

  17. [Care of the chronically ill: strategic challenge, macro-management and health policies].

    PubMed

    Gómez-Picard, Patricia; Fuster-Culebras, Juli

    2014-01-01

    The prevalence of chronic diseases is increasing, with the patients who suffer from them having greater need for healthcare. This fact forces a redirection in the health system, currently focused on the acute diseases, to achieve an efficient care. For this reason, it is necessary to work at all levels, starting with political decisions. These decisions should be based on the technical and scientific evidence available. Health planning is essential to establish care strategies, defining the actions to ensure the coordination and continuity of care, and also the redefinition of professional roles, where primary care nurses assume more competencies, becoming key professionals in the care of the chronic patient. The new model should include the professionalization of the management of health services. Information and communication technologies will play an important role in the development of strategies, but considering them as the tools that they are, allowing for the patient to be the focus of attention, and ensuring the privacy and the confidentiality. PMID:24388778

  18. Social living mitigates the costs of a chronic illness in a cooperative carnivore

    USGS Publications Warehouse

    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.

  19. Social living mitigates the costs of a chronic illness in a cooperative carnivore

    PubMed Central

    Almberg, E S; Cross, P C; Dobson, A P; Smith, D W; Metz, M C; Stahler, D R; Hudson, P J; Festa-Bianchet, Marco

    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. PMID:25983011

  20. Social living mitigates the costs of a chronic illness in a cooperative carnivore.

    PubMed

    Almberg, E S; Cross, P C; Dobson, A P; Smith, D W; Metz, M C; Stahler, D R; Hudson, P J

    2015-07-01

    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. PMID:25983011

  1. HIV as chronic illness: caregiving and social networks in a vulnerable population.

    PubMed

    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. PMID:25449294

  2. IL2Rβ-dependent signals drive terminal exhaustion and suppress memory development during chronic viral infection.

    PubMed

    Beltra, Jean-Christophe; Bourbonnais, Sara; Bédard, Nathalie; Charpentier, Tania; Boulangé, Moana; Michaud, Eva; Boufaied, Ines; Bruneau, Julie; Shoukry, Naglaa H; Lamarre, Alain; Decaluwe, Hélène

    2016-09-13

    Exhaustion of CD8(+) T cells severely impedes the adaptive immune response to chronic viral infections. Despite major advances in our understanding of the molecular regulation of exhaustion, the cytokines that directly control this process during chronicity remain unknown. We demonstrate a direct impact of IL-2 and IL-15, two common gamma-chain-dependent cytokines, on CD8(+) T-cell exhaustion. Common to both cytokine receptors, the IL-2 receptor β (IL2Rβ) chain is selectively maintained on CD8(+) T cells during chronic lymphocytic choriomeningitis virus and hepatitis C virus infections. Its expression correlates with exhaustion severity and identifies terminally exhausted CD8(+) T cells both in mice and humans. Genetic ablation of the IL2Rβ chain on CD8(+) T cells restrains inhibitory receptor induction, in particular 2B4 and Tim-3; precludes terminal differentiation of highly defective PD-1(hi) effectors; and rescues memory T-cell development and responsiveness to IL-7-dependent signals. Together, we ascribe a previously unexpected role to IL-2 and IL-15 as instigators of CD8(+) T-cell exhaustion during chronic viral infection. PMID:27573835

  3. Burden of illness: A systematic review of depression in chronic rhinosinusitis

    PubMed Central

    Schlosser, Rodney J.; Gage, Selby E.; Kohli, Preeti

    2016-01-01

    Background: Depression has been reported in patients with chronic rhinosinusitis (CRS), but its prevalence varies across studies, and uncertainty remains regarding the association with baseline disease severity and treatment outcomes. Objective: To systematically assess the prevalence of depression in CRS and to review its relationship to baseline disease severity and outcomes after treatment. Methods: A systematic review of the prevalence of possible depression was performed by using the available methods to diagnose depression, and the results were pooled. Studies that examined the relationship of depression on baseline disease severity and treatment outcomes were organized and reported individually. Results: Thirteen studies met inclusion criteria for prevalence analysis. The prevalence of possible or likely depression in patients with CRS ranged from 11.0 to 40.0%, depending on the method of diagnosis and sensitivity of various depression instruments. Positive depression screening was consistently associated with worse CRS-specific quality of life (QOL), medication usage, and health care utilization, but there were no reliable CRS-specific factors to predict the presence of depression. Patients with possible depression who underwent medical or surgical treatment for CRS tended to have improvements in CRS-specific QOL but did not achieve the same degree of QOL as patients who were not depressed. Depression-specific QOL seemed to improve after treatment for CRS. Conclusion: Positive depression screening was common in patients with CRS and had a negative association on the entire spectrum of QOL, health care utilization, and productivity. CRS-specific treatments were still beneficial in patients who seemed to be depressed and improved both depression-specific and CRS-specific QOL. PMID:27456594

  4. The burden of illness in patients with moderate to severe chronic obstructive pulmonary disease in Canada

    PubMed Central

    Maleki-Yazdi, M Reza; Kelly, Suzanne M; Lam, Sy S; Marin, Mihaela; Barbeau, Martin; Walker, Valery

    2012-01-01

    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. OBJECTIVE: To assess the costs associated with maintenance therapy and treatment for acute exacerbations of COPD (AECOPD) over a one-year period. METHODS: Respirologists, internists and family practitioners from across Canada enrolled patients with an established diagnosis of moderate to severe COPD (Global initiative for chonic Obstructive Lung Disease stages 2 and 3) confirmed by postbronchodilator spirometry. Patient information and health care resources related to COPD maintenance and physician-documented AECOPD over the previous year were obtained by chart review and patient survey. RESULTS: A total of 285 patients (59.3% male; mean age 70.4 years; mean pack years smoked 45.6; mean duration of COPD 8.2 years; mean postbronchodilator forced expiratory volume in 1 s 58.0% predicted) were enrolled at 23 sites across Canada. The average annual COPD-related cost per patient was $4,147. Across all 285 patients, maintenance costs were $2,475 per patient, of which medications accounted for 71%. AECOPD treatment costs were $1,673 per patient, of which hospitalizations accounted for 82%. Ninety-eight patients (34%) experienced a total of 157 AECOPD. Treatment of these AECOPD included medications and outpatient care, 19 emergency room visits and 40 hospitalizations (mean length of stay 8.9 days). The mean cost per AECOPD was $3,036. DISCUSSION: The current costs associated with moderate and severe COPD are considerable and will increase in the future. Appropriate use of medications and strategies to prevent hospitalizations for AECOPD may reduce COPD-related costs because these were the major cost drivers. PMID:23061077

  5. Functional assessment of chronic illness therapy—the fatigue scale exhibits stronger associations with clinical parameters in chronic dialysis patients compared to other fatigue-assessing instruments

    PubMed Central

    Chao, Chia-Ter; Huang, Jenq-Wen

    2016-01-01

    Background. Patients with end-stage renal disease (ESRD) have a high symptom burden, among which fatigue is highly prevalent. Many fatigue-assessing instruments exist, but comparisons among instruments in this patient population have yet to be investigated. Methods. ESRD patients under chronic hemodialysis were prospectively enrolled and seven types of fatigue instruments were administered: Brief Fatigue Inventory (BFI), Functional Assessment of Chronic Illness Therapy–Fatigue (FACIT-F), Fatigue Severity Scale (FSS), Lee Fatigue Scale (LFS), Fatigue Questionnaire (FQ), Fatigue Symptom Inventory (FSI), and Short-Form 36-Vitality (SF36-V). Using these instruments, we investigated the correlation between fatigue severity and clinical/biochemical parameters, including demographic/comorbidity profile, dialysis-related complications, and frailty severity. We used regression analysis with serum albumin and frailty severity as the dependent variables to investigate the independent correlations. Results. A total of 46 ESRD patients were enrolled (average age of 67 ± 11.6 years), and 50% of them had type 2 diabetes mellitus. Results from the seven tested instruments showed high correlation with each other. We found that the fatigue severity by FACIT-F was significantly associated with age (p = 0.03), serum albumin (p = 0.003) and creatinine (p = 0.02) levels, while SF36-V scores were also significantly associated with age (p = 0.02) and serum creatinine levels (p = 0.04). However, the fatigue severity measured by the FSS, FSI, FQ, BFI, and LFS did not exhibit these associations. Moreover, regression analysis showed that only FACIT-F scores were independently associated with serum albumin levels and frailty severity in ESRD patients. Conclusion. Among the seven fatigue-assessing instruments, only the FACIT-F yielded results that demonstrated significant and independent associations with important outcome-related features in ESRD patients. PMID:26998414

  6. Retinal imaging as a source of biomarkers for diagnosis, characterization and prognosis of chronic illness or long-term conditions

    PubMed Central

    Trucco, E; Cameron, J R; Dhillon, B; Houston, J G; van Beek, E J R

    2014-01-01

    The black void behind the pupil was optically impenetrable before the invention of the ophthalmoscope by von Helmholtz over 150 years ago. Advances in retinal imaging and image processing, especially over the past decade, have opened a route to another unexplored landscape, the retinal neurovascular architecture and the retinal ganglion pathways linking to the central nervous system beyond. Exploiting these research opportunities requires multidisciplinary teams to explore the interface sitting at the border between ophthalmology, neurology and computing science. It is from the detail and depth of retinal phenotyping that novel metrics and candidate biomarkers are likely to emerge. Confirmation that in vivo retinal neurovascular measures are predictive of microvascular change in the brain and other organs is likely to be a major area of research activity over the next decade. Unlocking this hidden potential within the retina requires integration of structural and functional data sets, that is, multimodal mapping and longitudinal studies spanning the natural history of the disease process. And with further advances in imaging, it is likely that this area of retinal research will remain active and clinically relevant for many years to come. Accordingly, this review looks at state-of-the-art retinal imaging and its application to diagnosis, characterization and prognosis of chronic illness or long-term conditions. PMID:24936979

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

    PubMed

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

    2014-06-01

    The concepts of "power" and "empowerment" are used in various disciplines, both political and social. Now are these terms frequently in the field of health. Our goal is to know its meaning as a synonym of expressions: "energy", "force", "domain", "vigour", "power", "capacity", "authority" and "control", which have been always within our practice nurse's own lexicon. Semantically analyzing them will help us in the understanding of its nuance. The literature review facilitates their understanding and allows us to link these words within the management of care. In this way we can propose diagnoses, interventions and outcomes specifically related to these concepts, which will help us optimize the efficiency in the management of care plans. The purpose of various collective nurses from different institutions is that the person is able to not generate dependencies and have the option of choosing your own lifestyle according to their culture and environment, independently or with the help. Generate knowledge is to generate power. The person should be educated and informed, to be expert and active and taking action to help control and minimize the progression of your health problem chronic and its possible complications. We are in the process of reformulation of the health system, whether it is private or public, and is necessary to know the power of the various actors involved in the management of the care to us. Each of these main actors--person ill, family/caregiver or nurse--has to know what is his role in this process. PMID:25087309

  8. Retinal imaging as a source of biomarkers for diagnosis, characterization and prognosis of chronic illness or long-term conditions.

    PubMed

    MacGillivray, T J; Trucco, E; Cameron, J R; Dhillon, B; Houston, J G; van Beek, E J R

    2014-08-01

    The black void behind the pupil was optically impenetrable before the invention of the ophthalmoscope by von Helmholtz over 150 years ago. Advances in retinal imaging and image processing, especially over the past decade, have opened a route to another unexplored landscape, the retinal neurovascular architecture and the retinal ganglion pathways linking to the central nervous system beyond. Exploiting these research opportunities requires multidisciplinary teams to explore the interface sitting at the border between ophthalmology, neurology and computing science. It is from the detail and depth of retinal phenotyping that novel metrics and candidate biomarkers are likely to emerge. Confirmation that in vivo retinal neurovascular measures are predictive of microvascular change in the brain and other organs is likely to be a major area of research activity over the next decade. Unlocking this hidden potential within the retina requires integration of structural and functional data sets, that is, multimodal mapping and longitudinal studies spanning the natural history of the disease process. And with further advances in imaging, it is likely that this area of retinal research will remain active and clinically relevant for many years to come. Accordingly, this review looks at state-of-the-art retinal imaging and its application to diagnosis, characterization and prognosis of chronic illness or long-term conditions. PMID:24936979

  9. Goal Setting and Treatment Adherence among Patients with Chronic Illness and Depressive Symptoms: Applying a Patient-Centered Approach

    PubMed Central

    Houston, Eric; Tatum, Alexander K.; Guy, Arryn; Mikrut, Cassandra; Yoder, Wren

    2016-01-01

    Objective: Poor treatment adherence is a major problem among individuals with chronic illness. Research indicates that adherence is worsened when accompanied by depressive symptoms. In this preliminary study, we aimed to describe how a patient-centered approach could be employed to aid patients with depressive symptoms in following their treatment regimens. Methods: The sample consisted of 14 patients undergoing antiretroviral therapy (ART) for HIV who reported clinically-significant depressive symptoms. Participant ratings of 23 treatment-related statements were examined using two assessment and analytic techniques. Interviews were conducted with participants to determine their views of information based on the technique. Results: Results indicate that while participants with optimal adherence focused on views of treatment associated with side effects to a greater extent than participants with poor adherence, they tended to relate these side effects to sources of intrinsic motivation. Conclusion: The study provides examples of how practitioners could employ the assessment techniques outlined to better understand how patients think about treatment and aid them in effectively framing their health-related goals. PMID:26755463

  10. Systematic Review of the Impact of Transition Interventions for Adolescents With Chronic Illness on Transfer From Pediatric to Adult Healthcare.

    PubMed

    Chu, Patricia Y; Maslow, Gary R; von Isenburg, Megan; Chung, Richard J

    2015-01-01

    Transfer from pediatric to adult care is a critical component of a high-quality transition experience for adolescents and young adults (AYA) with chronic illness. To examine the current evidence regarding the effect of transition interventions on care transfer, we performed a systematic review of studies that evaluated the effect of transition interventions on the specific health services outcome of transfer. The Medline, CINAHL, and PsycINFO databases were searched for studies that evaluated 1) a discrete transition intervention for AYA, 2) included a comparison group, and 3) reported on the outcome of transfer from pediatric to adult healthcare. References were screened and reviewed separately by authors, and relevant study details were abstracted during the review process. Five studies from five different countries were included in the final analysis. All five studies were conducted in specialty care clinics, with three interventions involving a nurse practitioner or systems navigator and two interventions involving physicians. Four studies were retrospective observational studies, and one was a pilot randomized controlled trial. Three of the five studies found that the transition intervention was associated with increased rates of transfer while the other two showed no statistically significant effects. Overall, evaluation of transfer appears to be hindered by methodological challenges. Establishing clearer definitions and metrics of transfer and creating the infrastructure needed to monitor the transfer of patients more consistently are important goals. PMID:26209872

  11. Management of recurrent vulvo-vaginal candidosis as a chronic illness.

    PubMed

    Donders, Gilbert G G; Bellen, Gert; Mendling, Werner

    2010-01-01

    For sporadic acute Candida vaginitis, any oral or local antifungal therapy can be used. For women with recurrent vulvo-vaginal candidosis (RVC), on the other hand, such simple approaches are insufficient, regardless of the product chosen. Instead, RVC should be managed as any other chronic disease and requires long-term, prophylactic, suppressive antifungal treatment. A regimen using individualized, decreasing doses of oral fluconazole (the ReCiDiF regimen) was proven to be highly efficient and offered great comfort to the patients. During this regimen, it is crucial that patients are carefully examined by anamnestic, clinical, microscopic and culture-proven absence of Candida. If a relapse occurs, the medication is adjusted and efforts are taken to find a possible triggering factor for the reactivation of the infection. Care has to be taken not to accumulate 'don't do's', unless the efficiency of a measure has been proven, by trying to eliminate one risk factor at a time for 2 months. Known possible triggers to be kept in mind are (1) antibiotic use, (2) use of specific contraceptives, especially combined contraceptive pills, (3) disturbed glucose metabolism, (4) the use of personal hygienic products, and (5) tight clothing or plastic panty liners. In therapy-resistant cases, non-albicans infection must be ruled out, and alternative therapies should be tried. Boric acid is proven to be efficient in most of these resistant cases, but other non-azoles like amphotericin B, flucytosine, gentian violet, and even caspofungin may have to be tried. As a final remark it has to be said that many patients feel poorly understood and inefficiently managed by many care-givers, increasing their feelings of guilt and sexual inferiority. Therefore, attention has to be given to take the disease seriously, follow strict treatment regimens, and advise precisely and based on individual evidence concerning any possible risk factors for recurrence. In case of therapy-resistant vulvo

  12. The illness narratives of men involved in the criminal justice system: A study of health behaviors, chronic conditions and HIV/AIDS

    PubMed Central

    Valera, Pamela; Kratz, Molly

    2014-01-01

    Summary Former inmates encounter a variety of challenges when returning to their community, including poor health status and limited access to healthcare services. This qualitative study examined how former male inmates with chronic conditions perceived, understood, managed, and coped with their illnesses. Findings: The participants were Black and Puerto Rican, with a mean age of 47 years, who were interviewed within three years of their release. Participants reported at least one chronic condition, with 21 HIV-negative men using chaos narratives to depict their approach to disease management. Nine HIV-positive men used quest narratives to present their illnesses and were immediately linked to supportive services, enabling them to overcome the barriers to community reintegration. Applications: Health interventions in the area of forensic social work ought to focus on conducting Medicaid outreach and enrollment efforts prior to correctional facility discharge. PMID:25419175

  13. The Shared Decision Making Frontier: a Feasibility and Usability Study for Managing Non-Critical Chronic Illness by Combining Behavioural & Decision Theory with Online Technology.

    PubMed

    Russell, Amina; Van Woensel, William; Abidi, Samina Raza

    2015-01-01

    The objective of this study is to determine if shared decisions for managing non-critical chronic illness, made through an online biomedical technology intervention, us feasible and usable. The technology intervention incorporates behavioural and decision theories to increase patient engagement, and ultimately long term adherence to health behaviour change. We devised the iheart web intervention as a "proof of concept" in five phases. The implementation incorporates the Vaadin web application framework, Drools, EclipseLink and a MySQL database. Two-thirds of the study participants favoured the technology intervention, based on Likert-scale questions from a post-study questionnaire. Qualitative analysis of think aloud feedback, video screen captures and open-ended questions from the post-study questionnaire uncovered six main areas or themes for improvement. We conclude that online shared decisions for managing a non-critical chronic illness are feasible and usable through the iheart web intervention. PMID:26262028

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

    PubMed

    Nilsson, Carina; Skär, Lisa; Söderberg, Siv

    2010-06-01

    The aim of this case study was to describe two District Nurses' (DN) experiences of using information and communication technology (ICT) to communicate with chronically ill people in their homes. An electronic messaging program via computers and mobile phones with an Internet connection was used, enabling DNs and the ill people to exchange messages to and from anywhere. The program comprised different virtual rooms, and communication was via text messages. The DNs in this study used the program two to four times each week from November 2003 to March 2004. Semi-structured interviews were performed before, during and after the implementation of the new technology and were analysed using thematic content analysis. The results showed that the DNs felt that the technology increased accessibility to nursing care through a more direct communication with the ill person meaning that a more trusting relationship could be created. The DNs also experienced that the use of ICT saved working time. This study indicates that the use of ICT for communication allowed the DN to better support a chronically ill person at home leading to improved home nursing care. This method of communication cannot replace physical presence, but can be seen as a complement to nursing care at home. PMID:20030770

  15. Life memories and the ability to act: the meaning of autonomy and participation for older people when living with chronic illness.

    PubMed

    Hedman, Maria; Pöder, Ulrika; Mamhidir, Anna-Greta; Nilsson, Annika; Kristofferzon, Marja-Leena; Häggström, Elisabeth

    2015-12-01

    There is a lack of knowledge about how older people living with chronic illness describe the meaning of autonomy and participation, indicating a risk for reduced autonomy and participation in their everyday life. The purpose of this study was to describe the meaning of autonomy and participation among older people living with chronic illness in accordance with their lived experience. The design was descriptive with a phenomenological approach guided by Giorgi's descriptive phenomenological psychological method. Purposive sampling was used, and 16 older people living with chronic illness who lived in an ordinary home participated in individual interviews. The findings showed that the meaning of autonomy and participation among the older people emerged when it was challenged and evoked emotional considerations of the lived experience of having a chronic illness. It involved living a life apart, yet still being someone who is able, trustworthy and given responsibility--still being seen and acknowledged. The meaning of autonomy and participation was derived through life memories and used by the older people in everyday life for adjustment or adaption to the present life and the future. Our conclusion is that autonomy and participation were considered in relation to older people's life memories in the past, in their present situation and also their future wishes. Ability or disability is of less importance than the meaning of everyday life among older people. We suggest using fewer labels for limitations in everyday life when caring for older people and more use of the phrase 'ability to act' in different ways, based on older people's descriptions of the meaning of autonomy and participation. PMID:25856656

  16. If diabetes is a public health problem, why not treat it as one? A population-based approach to chronic illness.

    PubMed

    Glasgow, R E; Wagner, E H; Kaplan, R M; Vinicor, F; Smith, L; Norman, J

    1999-01-01

    It is increasingly acknowledged that diabetes and other chronic illnesses are major public health problems. Medicare and many managed health care organizations have recognized the enormous personal and societal costs of uncontrolled diabetes in terms of complications, patient quality of life, and health care system resources. However, the current system of reactive acute-episode focused disease care practiced in many settings does not adequately address this public health problem. An alternative proactive, population-based approach to chronic illnesses such as diabetes is proposed and illustrated. This multilevel systems approach addresses supportive and inhibitory social-environmental factors at multiple levels (personal, family, health care team, work, neighborhood, community). Key disciplines contributing to a population-based approach to diabetes include epidemiology, behavioral science, health care services, public health, health economics, and quality of life professions. Current and potential contributions of each of these disciplines are illustrated and an integrative, population-based systems approach to diabetes management and prevention of complications is proposed. This approach is also seen as applicable to other chronic illnesses. PMID:10499137

  17. Rapid Screening of Psychological Well-Being of Patients with Chronic Illness: Reliability and Validity Test on WHO-5 and PHQ-9 Scales

    PubMed Central

    Wu, Shu-Fang Vivienne

    2014-01-01

    This study intended to test the reliability and validity of two simple psychological screening scales, the World Health Organization Well-being Index (WHO-5) and the 9-item Patient Health Questionnaire (PHQ-9), in patients with chronic illness in Taiwan and to understand the psychological well-being of patients with chronic illness (e.g., metabolic syndrome) in Taiwan and the incidences of psychological problems that follow. The research design of this study was a descriptive cross-sectional study. The sample comprised 310 patients with metabolic syndrome (MS), aged 20 years or more, from the outpatient clinic of a municipal hospital in Taiwan. This study used questionnaires to collect basic information, including physiological indices, WHO-5 and PHQ-9 that were used. “Hospital Anxiety and Depression scale (HADS),” and “World Health Organization Quality of Life—Short-form Version for Taiwan (WHOQOL)”. Results are as follows: (1) compared to PHQ-9, the reliability and validity of WHO-5 are better for screening the psychological well-being of patients with chronic illness. (2) The features of WHO-5 are high sensitivity, briefness, and ease-of-use. The incidence of depression in patients with metabolic syndrome was approximately 1.0–6.5%, which is significantly lower than that of western countries. PMID:25505984

  18. 'Rule your condition, don't let it rule you': young adults' sense of mastery in their accounts of growing up with a chronic illness.

    PubMed

    Heaton, Janet; Räisänen, Ulla; Salinas, Maria

    2016-01-01

    Poor control of chronic illness is often attributed to patients' non-adherence to medical advice and treatment. Policy and practice has traditionally focused on improving adherence, assuming that the more patients comply, the better their control and outcomes will be. Drawing on complexity theory, we question this logic in a secondary analysis of qualitative data from studies of young adults' experiences of growing up with a chronic illness. Examining their sense of mastery of their condition, we found they valued both being in medical control of their condition and having autonomy but had different ideas about how to achieve these goals. While some young adults mostly shared the traditional medical view that achieving good control was the key to retaining their autonomy, others saw control and autonomy as independent, non-linear and potentially conflicting goals. The latter endeavoured to achieve both goals by striking a balance, variously adopting strategies of engagement with and resistance to their regime in the changing social contexts of their lives. We suggest that policy and practice needs to do more to promote autonomy and adaptive capacity, rather than simply maximising adherence and control, recognising the mundane complexity of living with and managing a chronic illness. PMID:26140336

  19. A prospective, within-patient comparison between metal butterfly needles and Teflon cannulae in subcutaneous infusion of drugs to terminally ill hospice patients.

    PubMed

    Ross, J R; Saunders, Y; Cochrane, M; Zeppetella, G

    2002-01-01

    We performed a prospective study of hospice in-patients requiring a syringe driver (SD), to determine the site duration and tolerability of metal butterfly needles compared to Teflon cannulae. Using patients as their own control, prescribed medications were divided equally between two SDs (Graseby MS16a), for delivery over 24 h. A butterfly infusion (Flosafer, 25 gauge) was connected to one SD and a Teflon cannula (Abbocath-T, 24 gauge), to the second. These were inserted subcutaneously (s.c.) on opposite sides of the body at comparable sites; oedematous, broken or painful sites were excluded. SD sites were examined at 4-hourly intervals. The study was terminated when both devices had required resiting. Needle and cannula times were compared using the Wilcoxon signed rank test. Thirty patients entered the study, 13 males and 17 females, mean age (standard deviation): 70 (11) years. Thirteen patients completed the study. Nine patients died and eight patients discontinued the study before both needle and cannula had been resited. All 30 patients are included in the analysis. The time from insertion to resiting of the cannula was significantly longer than the needle: P < 0.0002, median (range) 93.5 (22.8-263.5) h versus 42.8 (7.5-162.3) h, respectively. The cost of the needle versus cannula is 1.93 Pounds versus 2.51 Pounds, respectively. Teflon cannulae have a median life span twice that of metal butterfly needles and are a cost-effective alternative for administration of medications by s.c. infusion in terminally ill patients. PMID:11963447

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

    PubMed Central

    2012-01-01

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