Science.gov

Sample records for chronic terminal illnesses

  1. The painless brain: lobotomy, psychiatry, and the treatment of chronic pain and terminal illness.

    PubMed

    Raz, Mical

    2009-01-01

    This article examines the use of lobotomy as a treatment for chronic intractable pain and reconstructs then-common perceptions of pain and of the patients who suffered from it. It delineates the social expectations and judgments implicit in physicians' descriptions of the patients, analyzing what was expected from such patients and how the medical establishment responded to non-normative expressions of suffering. I argue that the medicalized response to an expectation for normativity demonstrates the convergence between psychiatric and palliative interventions. Based on a historically informed perspective of psychiatric interventions in the field of pain medicine, I examine the use of psychiatric medications for pain syndromes today and evaluate the interface between depression, chronic pain, and terminal illness. While not detracting from the medical imperative to alleviate pain, I question the usage of social criteria and normative judgments in the clinical decision of how to treat pain. What normalizing social function does the use of psychiatric interventions in pain treatment fulfill? This approach leads to a reexamination of perceptions of dualism in pain medicine.

  2. 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.

  3. Coping with Chronic Illness

    MedlinePlus

    Having a long-term, or chronic, illness can disrupt your life in many ways. You may often be tired and in pain. Your illness might affect your ... able to work, causing financial problems. For children, chronic illnesses can be frightening, because they may not ...

  4. 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…

  5. Terminal illness and suicide.

    PubMed

    Leikin, Sanford; McCormick, Richard A

    1991-01-01

    Case vignette: Henry, age 19, has been under medical care struggling for 5 months with a non-Hodgkin's lymphoma that has been resistant to treatment. Proven chemotherapy protocols have failed to sustain a remission, and it is evident that his condition is terminal, although not immediately so. When not in temporary remissions he is in extreme pain. The quantity of analgesic medication needed to control the pain also leaves him feeling, in his own words, "too snowed out to do anything." During his last hospital admission, a week ago, he had talked obliquely about ending his life when signs of another painful relapse become evident. Today he appeared in the outpatient clinic, although he had no appointment scheduled. He sought out several of the people who had cared for him over the past few months to thank them and to "say good-bye." He gave some prized personal possessions to one or two of the staff with whom he felt especially close. As this was happening, some of the staff members realized that Henry had a sufficient stock of narcotics at home to end his life. Our commentators are Sanford Leikin, MD, and Richard A. McCormick, SJ.

  6. Teaching the Terminally Ill Child.

    ERIC Educational Resources Information Center

    Ainsa, Trisha

    1981-01-01

    Classroom teachers of terminally ill children face potentially difficult, challenging, rewarding and professionally expanding experiences which require an understanding of the basic needs of the dying. Strategies for teaching such children include literature, writing, role playing, magic circle discussions, play therapy, art therapy, counseling,…

  7. Informal care and terminal illness.

    PubMed

    Rhodes, Penny; Shaw, Sandra

    1999-01-01

    This paper is based on a study of the care and services received by people in the year before death in one Yorkshire health authority. In the spring of 1997 in-depth interviews were carried out with bereaved relatives and carers of a weighted sample of 33 people who had died in one Yorkshire health authority in the previous 18 months. Deaths where people were judged to have needed no input from palliative care services were excluded. The sample covers a range of different caring arrangements, experiences of caring for someone who is dying, support from formal services, place and manner of death. All those interviewed were providing some form of informal care or support to those who died, in some cases 24-h care. The interviews provided a valuable insight into ordinary people's experiences of death and of caring for someone who is dying. Most importantly for the purposes of this study, they gave insight into their experiences of services to support both the dying person and themselves in their caring role. The paper discusses the ways in which care of the terminally ill is distinctive. It explores the role of informal care in relation to the wider character and history of the local community, in particular the significance of its declining industrial base, and secondly, the availability of appropriate services to support those caring for the terminally ill. Finally, it makes recommendations about service planning and delivery which challenge the current framework for providing services to the terminally ill.

  8. Chronically Critically Ill Patients

    PubMed Central

    Douglas, Sara L.; Daly, Barbara J.; Kelley, Carol Genet; O’Toole, Elizabeth; Montenegro, Hugo

    2007-01-01

    Background Chronically critically ill patients often have high costs of care and poor outcomes and thus might benefit from a disease management program. Objectives To evaluate how adding a disease management program to the usual care system affects outcomes after discharge from the hospital (mortality, health-related quality of life, resource use) in chronically critically ill patients. Methods In a prospective experimental design, 335 intensive care patients who received more than 3 days of mechanical ventilation at a university medical center were recruited. For 8 weeks after discharge, advanced practice nurses provided an intervention that focused on case management and interdisciplinary communication to patients in the experimental group. Results A total of 74.0% of the patients survived and completed the study. Significant predictors of death were age (P = .001), duration of mechanical ventilation (P = .001), and history of diabetes (P = .04). The disease management program did not have a significant impact on health-related quality of life; however, a greater percentage of patients in the experimental group than in the control group had “improved” physical health-related quality of life at the end of the intervention period (P = .02). The only significant effect of the intervention was a reduction in the number of days of hospital readmission and thus a reduction in charges associated with readmission. Conclusion The intervention was not associated with significant changes in any outcomes other than duration of readmission, but the supportive care coordination program could be provided without increasing overall charges. PMID:17724242

  9. 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…

  10. 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…

  11. Delayed puberty in chronic illness.

    PubMed

    Pozo, Jesús; Argente, Jesús

    2002-03-01

    Delayed puberty can be defined as the lack of pubertal development at an age of 2 SD above the mean, which corresponds to an age of approximately 14 years for males and 13 years for females, taking both sex and ethnic origin into consideration. Its incidence associated with chronic illnesses is unknown; however, its clinical importance is relevant due to the larger percentage of patients with chronic disorders surviving until the age of puberty. Virtually every child with any chronic disease could present with delayed puberty (due to recurrent infections, immunodeficiency, gastrointestinal disease, renal disturbances, respiratory illnesses, chronic anaemia, endocrine disease, eating disorders, exercise and a number of miscellaneous abnormalities). Pubertal delay associated with chronic illness is accompanied by a delay in growth and the pubertal growth spurt. The degree to which growth and pubertal development are affected in chronic illness depends upon the type of disease and individual factors, as well as on the age at illness onset, its duration and severity. The earlier its onset and the longer and more severe the illness, the greater the repercussions on growth and pubertal development. The mechanism that trigger the start of physiological puberty remain unknown. Although malnutrition is probably the most important mechanism responsible for delayed puberty, emotional deprivation, toxic substances, stress and the side effects of chronic therapy, among others, have been implicated in the pathophysiology of delayed puberty. Therefore, early diagnosis is essential and appropriate and specific therapy fundamental.

  12. The Ubiquity of Chronic Illness.

    PubMed

    Fonseca, Claudia; Fleischer, Soraya; Rui, Taniele

    2016-01-01

    This is a review of five different books dealing with some aspect of what might be termed a "chronic illness" - Alzheimer's disease, lupus, addiction, erectile dysfunction, and leprosy. The array of different subjects examined in these books points to the negotiable limits of this hugely open category. What exactly constitutes an "illness"? Why not use a less biomedical term instead: "disturbance", "problem", or simply "condition"? And how are we to understand "chronic" - simply as the flipside of "acute" or "curable"?

  13. Chronic Illness & Mental Health

    MedlinePlus

    ... your overall health and treatment issues. Recovery from depression takes time, but treatment can improve the quality of life even if you have a medical illness. Treatments for depression include: Cognitive behavioral therapy (CBT), or talk therapy, ...

  14. 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…

  15. 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…

  16. 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…

  17. 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…

  18. '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.

  19. [Illness behavior in chronic pain].

    PubMed

    Lavielle, Pilar; Clark, Patricia; Martínez, Homero; Mercado, Francisco; Ryan, Gery

    2008-01-01

    To describe the illness behaviour in patients with chronic pain. We conducted semi-structured interviews to 53 patients during 2000, in a tertiary care center. We explored their initial interpretations, responses and subsequent practices to chronic pain, until they received a diagnosis that satisfied them. Illness behaviour was determined by pain intensity and disability; beliefs regarding pain causes, trust in social networks, and quality and satisfaction with the health care systems. In terms of the decision to seek care, the first option was to go to the popular sector, followed by consulting a general physician, and as last resort, to go to a tertiary care center ("with a specialist"). Illness behaviour should be conceptualized as a process, which combines the use of different health care sectors by the same subjects, as a result of care provided sequentially by each previous sector.

  20. Communication About Chronic Critical Illness

    PubMed Central

    Nelson, Judith E.; Mercado, Alice F.; Camhi, Sharon L.; Tandon, Nidhi; Wallenstein, Sylvan; August, Gary I.; Morrison, R. Sean

    2008-01-01

    Background Despite poor outcomes, life-sustaining treatments including mechanical ventilation are continued for a large and growing population of patients with chronic critical illness. This may be owing in part to a lack of understanding resulting from inadequate communication between clinicians and patients and families. Our objective was to investigate the informational needs of patients with chronic critical illness and their families and the extent to which these needs are met. Methods In this prospective observational study conducted at 5 adult intensive care units in a large, university-affiliated hospital in New York, New York, 100 patients with chronic critical illness (within 3–7 days of elective tracheotomy for prolonged mechanical ventilation) or surrogates for incapacitated patients were surveyed using an 18-item questionnaire addressing communication about chronic critical illness. Main outcome measures included ratings of importance and reports of whether information was received about questionnaire items. Results Among 125 consecutive, eligible patients, 100 (80%) were enrolled; questionnaire respondents included 2 patients and 98 surrogates. For all items, more than 78% of respondents rated the information as important for decision making (>98% for 16 of 18 items). Respondents reported receiving no information for a mean (SD) of 9.0 (3.3) of 18 items, with 95% of respondents reporting not receiving information for approximately one-quarter of the items. Of the subjects rating the item as important, 77 of 96 (80%) and 69 of 74 (93%) reported receiving no information about expected functional status at hospital discharge and prognosis for 1-year survival, respectively. Conclusions Many patients and their families may lack important information for decision making about continuation of treatment in the chronic phase of critical illness. Strategies for effective communication in this clinical context should be investigated and implemented. PMID

  1. Cultural diversity: family path through terminal illness.

    PubMed

    Baider, L

    2012-04-01

    In trying to comprehend a culture and its ways of structuring the world, much can be learned from addressing the manner in which intimate family relationships are ordered and family crises channeled toward care. A family's experience with illness cannot be considered in isolation from the cultural milieu in which it occurs. Family adaptation to cancer diagnosis is a continuous motion between many critical strata--a fragile oscillation between hope and desperation. Processes for optimal functioning and the well-being of members are seen to vary over time, as challenges unfold and families evolve across the life cycle and illness trajectory. The manner in which the healthcare system and family manage illness and terminal care is a particularly helpful window into the cultural, religious and traditional values of every family in a particular society.

  2. 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.

  3. Anxiety in Terminally Ill Cancer Patients

    PubMed Central

    Kolva, Elissa; Rosenfeld, Barry; Pessin, Hayley; Breitbart, William; Brescia, Robert

    2011-01-01

    Context Anxiety in terminal cancer is linked to diminished quality of life, yet overall it is poorly understood with regard to prevalence and relationship to other aspects of psychological distress. Objectives This study examines anxiety in terminally ill cancer patients, including the prevalence of anxiety symptoms, the relationship between anxiety and depression, differences in anxiety between participants receiving inpatient palliative care and those receiving outpatient care, and characteristics that distinguish highly anxious from less anxious patients. Methods Participants were 194 patients with terminal cancer. Approximately half (n = 103) were receiving inpatient care in a palliative care facility and half (n = 91) were receiving outpatient care in a tertiary care cancer center. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression, and was administered along with measures of hopelessness, desire for hastened death, and social support. Results Moderately elevated anxiety symptoms were found in 18.6% of participants (n = 36) and 12.4% (n = 24) had clinically significant anxiety symptoms. Level of anxiety did not differ between the two treatment settings. However, participants receiving palliative care reported significantly higher levels of depression and desire for hastened death. A multivariate prediction model indicated that belief in an afterlife, social support, and anxiolytic and antidepressant use were unique, significant predictors of anxiety. Conclusion Severity of anxiety symptoms did not differ between the study sites, suggesting that anxiety may differ from depression and desire for hastened death in the course that it takes over the duration of terminal cancer. PMID:21565460

  4. 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…

  5. 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…

  6. Anxiety in terminally ill cancer patients.

    PubMed

    Kolva, Elissa; Rosenfeld, Barry; Pessin, Hayley; Breitbart, William; Brescia, Robert

    2011-11-01

    Anxiety in terminal cancer is linked to diminished quality of life, yet overall it is poorly understood with regard to prevalence and relationship to other aspects of psychological distress. This study examines anxiety in terminally ill cancer patients, including the prevalence of anxiety symptoms, the relationship between anxiety and depression, differences in anxiety between participants receiving inpatient palliative care and those receiving outpatient care, and characteristics that distinguish highly anxious from less anxious patients. Participants were 194 patients with terminal cancer. Approximately half (n=103) were receiving inpatient care in a palliative care facility and half (n=91) were receiving outpatient care in a tertiary care cancer center. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression, and was administered along with measures of hopelessness, desire for hastened death, and social support. Moderately elevated anxiety symptoms were found in 18.6% of participants (n=36) and 12.4% (n=24) had clinically significant anxiety symptoms. Level of anxiety did not differ between the two treatment settings. However, participants receiving palliative care reported significantly higher levels of depression and desire for hastened death. A multivariate prediction model indicated that belief in an afterlife, social support, and anxiolytic and antidepressant use were unique, significant predictors of anxiety. Severity of anxiety symptoms did not differ between the study sites, suggesting that anxiety may differ from depression and desire for hastened death in the course that it takes over the duration of terminal cancer. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  7. 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

  8. 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…

  9. 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…

  10. Issues in psychotherapy with terminally ill patients.

    PubMed

    Cohen, S Tziporah; Block, Susan

    2004-06-01

    Psychotherapy with the terminally ill poses special challenges for clinicians and in return offers unique rewards. As a time limited therapy, acceptance, rather than change is a primary goal; yet, patients can be strongly motivated to change. Patients may need to struggle with how to disengage while also maintaining connection. Unique transference and countertransference issues arise. The psychological tasks of dying include grieving, saying goodbye, constructing a meaningful context to one's life, and letting go. The therapist can serve as a companion and guide to the dying person as she or he negotiates these tasks. Through the use of a case example, these issues are explored from the perspectives of patient and therapist. The therapist must address the following issues: attending to physical suffering, differentiating between grieving and depression, addressing fears, facilitating the life review, and assisting in decision making. A dying patient's need to leave a legacy, complete relationships, grapple with spiritual and religious issues, and attend to his or her family, are often important themes. Therapists must work productively with denial, maintain flexible yet appropriate boundaries, grapple with their own anxiety about death, and grieve the loss of their patients. Psychotherapy with dying patients can help reduce their psychological pain, relieving psychosocial distress and providing opportunities for personal growth in the last stage of life. Such work is often draining yet immensely rewarding for the patient and therapist alike.

  11. The Stigma of Dying: Attitudes Toward the Terminally Ill

    ERIC Educational Resources Information Center

    Epley, Rita J.; McCaghy, Charles H.

    1978-01-01

    Using a range of semantic differential adjectives, 233 college students indicated attitudes toward young and old people who were healthy, ill, or terminally ill. Attitudes toward each state of health category separate into three factors: attitudes toward healthy, ill, and dying persons. (Author)

  12. The right to information for the terminally ill patient.

    PubMed Central

    Osuna, E; Pérez-Cárceles, M D; Esteban, M A; Luna, A

    1998-01-01

    OBJECTIVES: To analyse the attitudes of medical personnel towards terminally ill patients and their right to be fully informed. DESIGN: Self-administered questionnaire composed of 56 closed questions. SETTING: Three general hospitals and eleven health centres in Granada (Spain). The sample comprised 168 doctors and 207 nurses. RESULTS: A high percentage of medical personnel (24.1%) do not think that informing the terminally ill would help them face their illness with greater serenity. Eighty-four per cent think the patient's own home is the best place to die: 8.9% of the subjects questioned state that the would not like to be informed of an incurable illness. CONCLUSION: In our opinion any information given should depend on the patient's personality, the stage of the illness and family circumstances. Our study confirms that a hospital is not the ideal environment for attending to the needs of the terminally ill and their families. PMID:9602997

  13. Chronic illness in adolescents: a sociological perspective.

    PubMed

    Silber, T J

    1983-01-01

    This article relates chronic illness in adolescents to a sociological model of deviance. This is an area of controversy: the views of Freidson, Lorber and Robinson are presented as being representative of the dispute. 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 perception and rules explicit. The concept of the chronically ill adolescent as deviant is descriptive and devoid of value judgment. Only through such rigorous assessment is it possible to gain a realistic understanding of the societal role in the life of the chronically ill adolescent.

  14. 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

  15. 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

  16. Many Chronic Illnesses Linked to Suicide Risk

    MedlinePlus

    ... fullstory_166776.html Many Chronic Illnesses Linked to Suicide Risk Odds 9 times higher for people with ... problems seem to have a higher risk of suicide, a new study suggests. And, for certain conditions -- ...

  17. 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…

  18. 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…

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

    MedlinePlus

    ... medlineplus.gov/ency/patientinstructions/000848.htm Talking with a child about a parent's terminal illness To use the sharing features on this page, please enable JavaScript. When a parent's cancer treatment has stopped working, you may ...

  20. 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…

  1. Unstable terminality: negotiating the meaning of chronicity and terminality in motor neurone disease.

    PubMed

    Lerum, Sverre Vigeland; Solbraekke, Kari Nyheim; Holmøy, Trygve; Frich, Jan C

    2015-01-01

    This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2-5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome.

  2. 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

  3. [Family and chronic paediatric illness].

    PubMed

    Grau Rubio, Claudia; Fernández Hawrylak, M

    2010-01-01

    Pediatric illnesses are always a family problem. Hospitalization, treatments and their long term consequences constitute a challenge for the family. In this paper, we describe the structural, procedural and emotional alterations that affect the family dynamic. We argue that the child should be treated within the family context and propose a multi-dimensional intervention model centered on the family's singularities and specific needs, the support available in their environment, the development of capacities and resilience, and also the organization of user-centered services that are coordinated with all the services provided by the community.

  4. Inner strength in women with chronic illness.

    PubMed

    Jenkinson, Amanda; Cantrell, Mary A

    2017-06-01

    Objectives This literature review summarizes research relevant to the meaning of inner strength in females living with a chronic illness. This review also examined studies that have used The Inner Strength Questionnaire to examine inner strength among chronically ill females. Methods Using the search terms inner strength and women, CINAHL, PubMed, and ProQuest Nursing databases were searched for the years 1990-2016. Ten articles met the inclusion criteria. Results Inner strength in women is a mental health construct that women can encompass to positively affect their quality of life while living through challenging life events. The Theory of Inner Strength appears to be a useful a framework for understanding how physical, psychological, and spiritual health can promote well-being, quality of life, and spirituality in women. Discussion The limited number of studies identified suggests the need for further investigations to explore the relationship between inner strength and quality of life among females living with chronic health conditions. The Inner Strength Questionnaire is a unique tool with adequate psychometric properties to measure inner strength in chronically ill women that includes a holistic assessment of living with a chronic illness that encompasses women' social, physical, emotional, and spiritual needs.

  5. Death education and attitudes toward euthanasia and terminal illness.

    PubMed

    Nagi, M H; Lazerine, N G

    1982-01-01

    The attitudes of a random sample of Cleveland clergy toward the experience of terminal illness and the circumstances justifying euthanasia are presented and analyzed. The clergy response patterns revealed that, although eager to prolong life as long as possible, terminally ill patients fear a prolonged period of illness more than death itself. They also agreed that most patients favor the disclosure of terminal illness. The clergy's response to a questionnaire exhibited a definite ranking (i.e., scaling) in the order of priority of the different circumstances justifying passive euthanasia. Using training in death counseling as a control variable produced sharper division in the response categories for each statement. The controversial nature of euthanasia and the problem of ascertaining the psychological needs of the terminally ill became more apparent with the group who had more training in death counseling. Interpretations of the findings are presented, and a need for a careful reexamination of the effects of death education on attitudes toward controversial subjects in death and dying is stressed.

  6. Mechanisms in Chronic Multisymptom Illnesses

    DTIC Science & Technology

    2009-10-01

    small number of baseline predictors provide excellent prediction of persistent musculoskeletal pain after MVC at both 1-month and 6-month follow-up... Musculoskeletal Pain and Posttraumatic Stress Disorder Symptoms after Motor Vehicle Collision Share ED Symptom Risk Factors and Outcomes. Arthritis and Rheumatism...Whalen G, Cunningham J, Clauw DJ. Cerebrospinal fluid levels of opioid peptides in fibromyalgia and chronic low back pain. BMC Musculoskelet Disord

  7. Evaluation of Care Provided to Terminally Ill Patients.

    ERIC Educational Resources Information Center

    Loomis, Margaret T.; Williams, T. Franklin

    1983-01-01

    Studied the quality of terminal care in 40 patients in an acute care facility and a chronic care facility. Minimial difficulty was observed in making the transition from active to comfort care. An evaluation method and a model of terminal care emphasizing improved communication and emotional support are proposed. (Author/JAC)

  8. 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)

  9. 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)

  10. 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)

  11. 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)

  12. 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…

  13. 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…

  14. Symptom Identification in the Chronically Critically Ill

    PubMed Central

    Campbell, Grace B.; Happ, Mary Beth

    2010-01-01

    Ascertaining the symptom experience of chronically critically ill (CCI) patients is difficult due to communication impairment and fluctuations in patient cognition and physiological conditions. The use of checklist self report ratings is hampered by the inability of most CCI patients to respond verbally to symptom queries. In addition to the communication problems caused by mechanical ventilation, the apparently diverse idioms of symptom expression add to the potential for miscommunication regarding symptom experience. Although patient communication impairment is a major barrier to symptom identification, symptom assessment and treatment are fundamental components of nursing care for CCI. This paper reviews and describes the unique constellation of symptoms experienced by many critically ill patients. We report our observations of symptom communication among CCI patients and nurses and discuss inconsistency in the language of symptom expression among nurses and patients. Clinically applicable strategies to improve nurse-patient symptom communication and suggestions for refinement of symptom assessment in chronic critical illness are provided. PMID:20118706

  15. 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,…

  16. Special issues in pain control during terminal illness.

    PubMed Central

    Librach, S. L.

    1995-01-01

    Pain control is still a prime concern in managing patients with terminal illnesses, such as AIDS and cancer. I review some special issues that confront family physicians providing such care. Issues include common blocks to good pain management, understanding different types of pain, and the appropriate use of adjunct analgesic drugs and therapies. PMID:7539651

  17. 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)

  18. 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…

  19. 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,…

  20. 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…

  1. 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…

  2. Mechanisms influencing bone metabolism in chronic illness.

    PubMed

    Daci, E; van Cromphaut, S; Bouillon, R

    2002-01-01

    Bone is permanently renewed by the coordinated actions of bone-resorbing osteoclasts and bone-forming osteoblasts, which model and remodel bone structure during growth and adult life. The origin of osteoblastic cells (osteoblasts, osteocytes and bone-lining cells) differs from that of osteoclasts, but both cell groups communicate with each other using cytokines and cell-cell contact as to optimally maintain bone homeostasis. This communication in many ways uses the same players as the communication between cells in the immune system. During acute life-threatening illness massive bone resorption is the rule, while bone formation is suppressed. During chronic illness, the balance between bone formation and bone resorption also shifts, frequently resulting in decreased bone mass and density. Several factors may contribute to the osteopenia that accompanies chronic illness, the most important being undernutrition and low body weight, inflammatory cytokines, disorders of the neuroendocrine axis (growth hormone/IGF-1 disturbances, thyroid and gonadal deficiency), immobilization, and the long-term use of glucocorticoids. Their combined effects not only influence the generation and activity of all bone cells involved, but probably also regulate their life span by apoptotic mechanisms. Osteopenia or even osteoporosis and bone fragility, and before puberty also decreased linear growth and lower peak bone mass are therefore frequent consequences of chronic illnesses.

  3. Moving towards effective chronic illness management: asthma as an exemplar.

    PubMed

    Estes, Tracy S

    2011-01-01

    The United States health care system is at a pivotal point in its ability to manage chronic illness. The demands and philosophical differences between the management of acute and chronic illnesses suggest the need for different strategies for effective and efficient management of chronic illness. The purpose of this article is to discuss the Chronic Care Model and the collaborative approach to managing chronic illnesses. Asthma, as an exemplar, will be used to illustrate the need for the development of new models of collaborative care for the treatment of chronic illnesses.

  4. 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…

  5. Suffering indicators in terminally ill children from the parental perspective.

    PubMed

    Montoya-Juárez, R; García-Caro, M P; Schmidt-Rio-Valle, J; Campos-Calderón, C; Sorroche-Navarro, C; Sánchez-García, R; Cruz-Quintana, F

    2013-12-01

    Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their perspectives on suffering, in order to provide initial understanding from which to develop observational indicators and further research. Qualitative descriptive study with semi-structured interviews made "ad hoc". Selection through deliberate sampling of mothers and fathers of hospitalised children (0-16 years old) with a terminal illness in Granada (Spain). 13 parents were interviewed. They described children's suffering as manifested through sadness, apathy, and anger towards their parents and the professionals. The isolation from their natural environment, the uncertainty towards the future, and the anticipation of pain caused suffering in children. The pain is experienced as an assault that their parents allow to occur. The analysis of the interview with the parents about their perception of their ill children's suffering at the end of their lives is a valuable source of information to consider supportive interventions for children and parents in health care settings. An outline summary of the assessed aspects of suffering, the indicators and aspects for health professional consideration is proposed. Copyright © 2013 Elsevier Ltd. All rights reserved.

  6. 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.

  7. Physician over-recommendation of mammography for terminally ill women.

    PubMed

    Leach, Corinne R; Klabunde, Carrie N; Alfano, Catherine M; Smith, Judith Lee; Rowland, Julia H

    2012-01-01

    There has been recent, sometimes intense, debate about when to begin screening and how often to screen women for breast cancer with mammography. However, there should be no controversy regarding screening women who are unlikely to benefit from the procedure, such as those with a serious, life-limiting illness who would not live long enough to benefit from the potential detection and treatment of breast cancer. Identifying characteristics of physicians who recommend mammography for terminally ill women can help guide efforts to minimize patient risks and make better use of health care resources. The authors used data from a nationally representative survey of primary care physicians (PCPs) (N = 1196; response rate, 67.5%) conducted in 2006 and 2007 to examine PCPs' breast cancer screening recommendations for hypothetical patients ages 50 years, 65 years, and 80 years who were healthy, had a moderate comorbidity, or had a terminal comorbidity. Many PCPs (47.7%) reported that they would recommend mammography to a woman aged 50 years, 65 years, or 80 years with terminal lung cancer, indicating over-recommendation. Physician characteristics associated with over-recommending mammography included obstetrician/gynecologist (odds ratio [OR], 1.69) or internal medicine (OR, 0.45) specialty, being a woman (OR, 1.40), being a racial/ethnic minority (OR, 1.72), and working in a smaller practice (OR, 1.41). The current results indicated that physician over-recommendation of screening mammography among terminally ill women is common. Certain physician and practice characteristics, including specialty, were associated with over-recommending mammography. The authors concluded that an informed and shared mammography decision-making process for terminally ill women may eliminate unnecessary patient risks and health care expenditures. Copyright © 2011 American Cancer Society.

  8. 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…

  9. 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…

  10. Chronic critical illness: the price of survival.

    PubMed

    Marchioni, Alessandro; Fantini, Riccardo; Antenora, Federico; Clini, Enrico; Fabbri, Leonardo

    2015-12-01

    The evolution of the techniques used in the intensive care setting over the past decades has led on one side to better survival rates in patients with acute conditions and severely impaired vital functions. On the other side, it has resulted in a growing number of patients who survive an acute event, but who then become dependent on one or more life support techniques. Such patients are called chronically critically ill patients. No absolute definition of the disease is currently available, although most patients are characterized by the need for prolonged mechanical ventilation. Mortality rates are still high even after dismissal from intensive care unit (ICU) and transfer to specialized rehabilitation care settings. In recent years, some studies have tried to clarify the pathophysiological characteristics underlying chronic critical illness (CCI), a disease that is also characterized by severe endocrine and inflammatory impairments, partly accounting for the almost constant set of symptoms. Currently, no specific treatment is available. However, a strategic early therapeutic approach on ICU admission might try to prevent the progress of the acute disease towards chronic critical illness. © 2015 Stichting European Society for Clinical Investigation Journal Foundation.

  11. Meaninglessness in terminally ill cancer patients: a randomized controlled study.

    PubMed

    Morita, Tatsuya; Murata, Hisayuki; Kishi, Emi; Miyashita, Mitsunori; Yamaguchi, Takuhiro; Uchitomi, Yosuke

    2009-04-01

    Although recent empirical studies reveal that fostering patients' perception of meaning in their lives is an essential task for palliative care clinicians, few studies have reported the effects of training programs for nurses specifically aimed at improving these skills. The primary aim of this randomized controlled trial was to determine the effects of an educational workshop focusing on patients' feelings of meaninglessness on nurses' confidence, self-reported practice, and attitudes toward caring for such patients, in addition to burnout and meaning of life. The study was designed as a single-institution, randomized controlled trial using a waiting list control. The intervention consisted of eight 180-minute training sessions over four months, including lectures and exercises using structured assessment. A total of 41 nurses were randomly allocated to three groups, which were separately trained, and all were evaluated four times at three-month intervals (before intervention, between each intervention, and after the last intervention). Assessments included validated Confidence and Self-Reported Practice scales, the Attitudes Toward Caring for Patients Feeling Meaningless Scale (including willingness to help, positive appraisal, and helplessness items), the Maslach Burnout Scale, job satisfaction, and the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp). One participant withdrew from the study before the baseline evaluation, and the remaining 40 nurses completed the study. The nurses were all female and had a mean age of 31+/-6.4, and mean clinical experience of 8.9+/-5.5 years. There were no significant differences in background among the groups. The intervention effects were statistically significant on the Confidence Scale, the Self-Reported Practice Scale, and the willingness to help, positive appraisal, and helplessness subscales, in addition to the overall levels of burnout, emotional exhaustion, personal accomplishment, job satisfaction

  12. 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.

  13. Relationships with death: the terminally ill talk about dying.

    PubMed

    Wright, Kristin

    2003-10-01

    This article describes a qualitative study exploring the experiences of terminally ill patients and their families as they lived with the inevitability of death. Frustrated by the dominant discourse surrounding the culture of dying--namely that of Elisabeth Kübler-Ross's stage theory--I sought to revisit the experiences of the terminally ill by talking directly with them. Instead of focusing on how people reacted to the introduction of death into their lives, this research attended to how the dying began relating to life and death differently as a result of death's presence. Through an analysis of ethnographically collected data, the meanings participants constructed around their experiences were explored--culminating in the creation of seven "relationships" that participants shared with death.

  14. 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

  15. 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…

  16. Women's experiences of fatigue in chronic illness.

    PubMed

    Kralik, Debbie; Telford, Kerry; Price, Kay; Koch, Tina

    2005-11-01

    The aim of this paper is to add a qualitative dimension to the body of knowledge about fatigue by revealing the meaning given by women living with chronic illness to the experience of fatigue. Fatigue is a common symptom experienced by people who live with chronic illness. It pervades every aspect of life and may be experienced in physical, psychological, emotional or social dimensions. Management of fatigue relies heavily on the individual's ability to employ self-care actions. The invisibility of fatigue is recognized as one of the most frustrating aspects, which can lead to lack of understanding and misunderstanding by others. We report the findings of data from research in progress (2003-2005). Data were generated via email group conversations between us and 30 women who live with long-term illness. A recurring conversational thread has been women's experiences of fatigue when living with long-term illness. Although fatigue has been reported to be a major obstacle to maintaining usual daily activities and quality of life, few studies have explored this common symptom from the perspective of people themselves. Common themes found in the experience of fatigue as described by women are the meaning of fatigue, awareness as self-care, fatigue as invisible to others, seeking medical validation and accountability for self-care. It is vital for healthcare workers to give opportunities for women to talk about fatigue, validate their experiences and provide support with self-care. Healthcare workers are encouraged to challenge their own meanings and expectations surrounding a person's report of fatigue so that opportunities for therapeutic intervention can be facilitated.

  17. Chronic metformin treatment facilitates seizure termination.

    PubMed

    Yang, Yong; Zhu, Binglin; Zheng, Fangshuo; Li, Yun; Zhang, Yanke; Hu, Yida; Wang, Xuefeng

    2017-03-04

    The AMP-activated protein kinase (AMPK) is a key energy sensor. Its activator metformin could suppress epileptogenesis in the pentylenetetrazol (PTZ) kindling model. However, the effect of metformin on the acute and chronic seizures has not been studied. We first detected the expression of AMPK in the brain tissue of human and mice with chronic seizures, as well as in mice with acute seizures. Second, using behavioral assay and local filed potentials (LFPs) recording, we investigated the effect of chronic metformin treatment on seizures in a acute seizure model and a chronic seizure model. Our results showed that AMPK was expressed in neurons in the epileptic brain. The expression level was decreased in the brain tissue that experienced chronic and acute seizures. In PTZ-induced acute seizures model, behavioral assay showed that chronic metformin treatment decreased the mortality, and LFPs recording showed that chronic metformin treatment shortened the duration of generalized tonic-clonic seizures and prolonged the duration of postictal depression. Moreover, in kainic acid-induced chronic seizures model, LFPs recording showed that chronic metformin treatment shortened the duration of epileptic activity. Our study suggests that chronic metformin treatment could facilitate seizure termination. Copyright © 2017 Elsevier Inc. All rights reserved.

  18. 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

  19. [Patients' assessment of their chronic illness care].

    PubMed

    Adrián-Arrieta, Leyre; Casas Fernández de Tejerina, Juan Manuel

    2017-09-04

    The aim of this study is to assess the care received by chronic patients from their point of view and objectify the factors related with a better assessment of care. Cross-sectional descriptive study realized between September 2014 and April 2015. Nine Health Centers of Navarra (6 urban and 3 rural), Spain. Sampling opportunity of 196 patients aged over 65years presenting at least one chronic disease. Outcome variable: Evaluation of the care received through the Patient Assessment of Chronic Illness Care (PACIC) test (score 1 to 5, higher values indicate better perception about quality of care). Explanatory variables: quality of life employing the EQ5D instrument, Katz index and Gijón's socio-family evaluation scale. Other variables studied were: sex, age, education, Charlson index and number of chronic diseases. The association between the PACIC numerical value with the rest of the variables was calculated. The assessment of the care received according to the PACIC was higher with more chronic diseases (rho: 0.196; p=0.006), with less autonomy (mild or no disability: mean 2.9; SD: 0.6 vs. moderate or severe disability: mean 3.3; SD: 0.2; P=.003), in those with worse quality of life (EQ5D5L Index value rho: -0.227; P=.001. EQ VAS rho: -0.145; P=.043), and in those with a more favorable social situation (rho: -0.167; P=.022). The perception of chronic patients about the received care is better with an increased number of chronic diseases and with less autonomy and quality of life. The social environment influences the care perception of the patient, being this worse in environments with higher social risk. Copyright © 2017 Elsevier España, S.L.U. All rights reserved.

  20. Pressure ulcers among terminally ill nursing home residents.

    PubMed

    Kayser-Jones, Jeanie; Kris, Alison E; Lim, Kyung-Choon; Walent, Ronald J; Halifax, Elizabeth; Paul, Steven M

    2008-01-01

    The purpose of this prospective, anthropological study was to describe and analyze the experiences and care of terminally ill nursing home residents who were admitted with or acquired pressure ulcers (PUs) after admission. Data were collected in two proprietary nursing homes. Participant observation, in-depth interviews, event analysis, and chart review were used to obtain data. A total of 64 (54.7%) of the 117 terminally ill residents in the study had PUs; 52 (81.3%) of whom died with PUs. The findings disclosed that the absence of family advocacy, inability to speak English, and inadequate staffing and lack of supervision, along with other previously reported risk factors, contributed to the development of PUs. Specifically, inadequate staffing and lack of supervision led to inadequate assistance at mealtime, infrequent repositioning, and inadequate continence care, which in turn led to weight loss, unrelieved pressure on bony prominences, and moist, irritated skin. The outcome was a high rate of residents dying with PUs. Knowledge of and attention to these risk factors can guide nurses in the prevention and management of PUs.

  1. "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

  2. Trust, Health Care Relationships, and Chronic Illness

    PubMed Central

    Robinson, Carole A.

    2016-01-01

    Trust in health care relationships is a key ingredient of effective, high-quality care. Although the indirect influence of trust on health outcomes has long been recognized, recent research has shown that trust has a direct effect on outcomes of care. Trust is important. However, the research on trust is disparate, organized around differing definitions, and primarily focused on patients’ trust in physicians. Morse’s method of theoretical coalescence was used to further develop and elaborate a grounded theory of the evolution of trust in health care relationships, in the context of chronic illness. This middle-range theory offers a clear conceptual framework for organizing and relating disparate studies, explaining the findings of different studies at a higher conceptual level, and identifying gaps in research and understanding. In addition, the grounded theory is relevant to practice. PMID:28508016

  3. A review on how meditation could be used to comfort the terminally ill.

    PubMed

    Ball, Michael Stephen; Vernon, Bryan

    2015-10-01

    Our objective was to review how meditation could comfort the terminally ill. Our methodology was a literature search, which included books, journals, papers in collections, and online databases. The main search engines employed were Google Scholar and the Durham University Library. The main databases consulted were the Christian Meditation Centre, Project Meditation, and Stress-Related Facts and Well-Being at Monash. We were specifically interested in data acquired from clinical and nonclinical trials. The arguments needed to be based on qualitative and quantitative scientific data. Papers were published between 1985 and 2014. We then subdivided the review into three subcategories: physical, emotional, and self-awareness. When reviewing each category, we put our results into tabular form. In each table, we noted the percentage of terminally ill patients (TIPs) and non-terminally ill patients (NTIPs), and whether meditation had comforted them. Our review demonstrated that there are many areas that have yet to be researched. First, very little work has been done on how meditation affects the physical health of TIPs, including such variables as blood pressure, chronic pain, and sleeping patterns. However, no research has been done on heart disease, hypertension, depression, among others. Second, virtually no research has been conducted on how meditation affects the mental health of TIPs. Notably neglected areas include anxiety, compliance, depression, and stress. Third, no research has been done on whether meditation increases self-awareness in TIPs. In each of these cases, most NTIPs reacted positively; however, no research has been done on why TIPs reacted differently. Our results demonstrate the need for further research on how meditation affects terminally ill patients. In turn, this would enrich the debate on whether meditation should be prescribed for the dying.

  4. 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. © 2014 Scandinavian Psychological Associations and John Wiley & Sons Ltd.

  5. 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)

  6. A pilot study of transformation, attributed meanings to the illness, and spiritual well-being for terminally ill cancer patients.

    PubMed

    Ando, Michiyo; Morita, Tatsuya; Lee, Virginia; Okamoto, Takuya

    2008-12-01

    The present study investigated what types of transformation terminally ill cancer patients experienced from diagnosis until the terminal stage, what meanings terminally ill cancer patients attributed to their illness, and whether or not those who attributed positive meaning to their illness achieved high levels of spiritual well-being as a preliminary study. Ten terminally ill cancer patients in the hospice wards of two general hospitals participated. A clinical psychologist conducted a semistructured interview with the patients individually for about 60 min. Patients completed the FACIT-Sp and HADS before the interview and talked about the meanings of cancer experience. The contents of the interviews were analyzed qualitatively. Patients were separated into high and low levels of spiritual-well being by the median of FACIT-Sp scores. Three types of transformation were extracted: "group with peaceful mind," "group with both positive attitude and uneasy feeling," and "groups with uneasy feeling." As attributed meanings to the illness, five categories were extracted: "positive meaning," "natural acceptance," "negative acceptance," "search for meaning," and "regret and sorrow." Patients in the high level spiritual well-being group attributed the meaning of illness to "positive meaning" and "natural acceptance," and those in the low level spiritual well-being group attributed it to "regret and sorrow" and "search for meaning." Some Japanese terminally ill cancer patients experienced positive transformation, and patients who attributed "positive meaning" and "natural acceptance" to their illness experience achieved high levels of spiritual well-being.

  7. 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.

  8. Physician acceptance of home care for terminally ill children.

    PubMed Central

    Edwardson, S R

    1985-01-01

    The study reported here explored the factors associated with the implementation of Martinson's model of home care and treatment for children in the terminal stages of illness with cancer. The model is described as an example of a health care strategy that was dramatically different from the prevalent model of care and may have conflicted with existing values. Data for the study were gathered from the hospital records of the children and from a survey of their oncologists. The findings suggest that physicians viewed the model of care as desirable and made their referral decisions on the basis of their judgment about whether the family in question was technically and emotionally capable of providing the care. PMID:3988531

  9. 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.

  10. 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.

  11. The question of disclosing the diagnosis to terminally ill patients.

    PubMed

    Hartwich, P

    1979-07-04

    The question of disclosing the diagnosis to terminally ill patients was investigated by means of a semi-standardized interview of 56 subjects who had been 'told the truth' about their condition. The effects and interdependence of the factors of age, personality structure (EPI neuroticism scale), duration of knowledge, social contact, and religiousness, on the patient's ability to cope with the information were examined. The process of adjustment was assessed according to the stages proposed by Kübler-Ross (1969). Using the statistical model of path analysis, it was possible to evaluate these individual factors and present linearly their interrelationships. These results can offer medical staff the following guidelines: Three factors (a) advanced years, (b) good social contact, and (c) optimally unneurotic personality structure, provide the optimum conditions for a positive adjustment to the disclosure of a diagnosis of fatal illness. If, however, only one or two of these factors are involved, or if they are evident only to a slight degree, then conditions for telling the truth are less positive. On the other hand, in the case of (a) youth, (b) restricted social contact, and (c) a more markedly neurotic person, particular caution is recommended, since the danger of a negative reaction, and indeed even of suicide, must be reckoned with.

  12. Making sense of chronic illness--a therapeutic approach.

    PubMed

    Jacobi, Sue; MacLeod, Rod

    2011-06-01

    A diagnosis of any chronic progressive illness can be a traumatic experience. People wonder how they will be able to cope and health care professionals wonder how they can help those so affected. The aim of the study was to discover how people find meaning when they are diagnosed with chronic illness. The research question asked is: How do people make sense of living with chronic progressive illness? This is a qualitative study using a phenomenological approach to apply what is learned to developing therapeutic strategies in order to help those so diagnosed to find the meaning they need in order to live with resilience. Semi-structured interviews with seven people were held in order to determine how they cope with living with chronic progressive illness. The results were then used to develop some suggestions for health professionals as they seek to assist people with chronic progressive illness. All participants displayed much resilience and determination which was found to emerge from three main themes: memory, hope and meaning. Memory was seen to be the link between all the themes. These are described and, arising out of the results of this study, some suggestions are made in order to assist in management. It is possible for health care professionals to assist patients to make sense of chronic illness by helping them to view their illness as part of life, and therefore a challenge to be faced rather than seeing life as dominated by illness.

  13. 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. Copyright © 2013 John Wiley & Sons, Ltd.

  14. [Terminally-ill patients' end of life problems and related decisions].

    PubMed

    Sarmiento-Medina, María I; Vargas-Cruz, Sandra L; Velásquez-Jiménez, Claudia M; Sierra de Jaramillo, Margarita

    2012-01-01

    Describing terminally-ill patients and their relatives' preferences regarding end of life decisions, the underlying problems and reasons leading to them requesting support. This was a descriptive, exploratory analysis of the secondary sources in an NGO providing support for patients at the end of their lives. The most frequent choice was dying with dignity (43 %), followed by euthanasia (12 %). Some people asked for guidance on legal and ethical aspects regarding appropriate care for the terminally-ill. The pathologies accounting for 75 % of the diagnoses were chronic degenerative diseases, cancer and coma. The worsening of symptoms was the main reason for requesting support and uncontrollable pain more often led to the choice of euthanasia. Only 14 % of the patients had formalised their wills regarding their end of life decisions. The choice of dying with dignity was related to rejecting futile measures and therapeutic cruelty. Euthanasia was seen as an autonomous intentional action to end suffering. The family plays an essential role in making end of life decisions. End of life decisions are motivated by a perception of undignified conditions for patients due to progressive deterioration, poorly controlled pain, abandoning of chronic patients, therapeutic obstinacy and unnecessary measures that postpone death. They are taken within a complex context concerning religious dilemmas and ethical or legal concerns.

  15. Myth of empowerment in chronic illness.

    PubMed

    Paterson, B

    2001-06-01

    This article presents several findings of a study, conducted between 1996 and 1998, to investigate self-care decision making in diabetes. The underlying assumption of many practitioners is that an invitation to people with chronic illness to participate as equal partners is sufficient to guarantee their empowerment. Using grounded theory, the research examined self-care decision making using a convenience sample of 22 Canadian adults with longstanding type 1 diabetes nominated as expert self-care managers. Participants audiotaped their decision making as it occurred for 3 weeks over the course of one calendar year. These audio-recordings were followed by an interview to clarify participants' decision making and factors that affected their decisions. Participants identified several covert and subtle ways that practitioners contradict their stated goal of empowerment in their interactions with diabetics. Participants revealed that despite their intention to foster participatory decision making, practitioners frequently discount the experiential knowledge of diabetes over time and do not provide the resources necessary to make informed decisions. The article concludes with a discussion of the implications of the findings for practice.

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

    PubMed

    Becker, Gay

    2003-01-01

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

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

    PubMed

    Årestedt, Liselott; Benzein, Eva; Persson, Carina

    2015-05-01

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

  18. Chronic Illness and Developmental Vulnerability at School Entry.

    PubMed

    Bell, Megan F; Bayliss, Donna M; Glauert, Rebecca; Harrison, Amanda; Ohan, Jeneva L

    2016-05-01

    This study examined the association between chronic illness and school readiness, by using linked administrative population data. The sample included children born in 2003-2004 who were residing in Western Australia in 2009 and had a complete Australian Early Development Census record (N = 22 890). Health and demographic information was also analyzed for 19 227 mothers and 19 030 fathers. The impact of child chronic illness on 5 developmental domains (social, emotional, language, cognitive, and physical) at school entry was analyzed. Analyses examined the association between child developmental outcomes and chronic illness generally, single or multiple chronic illness diagnosis, and diagnosis type. Logistic regression models estimated odds ratios for each outcome, adjusted for child, parent, and community sociodemographic variables. In the adjusted models, children with a chronic illness had an increased risk of being classified as developmentally vulnerable on all domains, compared with children without a chronic illness (20%-35% increase in risk). There was no increased risk for children with multiple chronic illness diagnoses over those with a single diagnosis (all Ps > .05). There was no evidence of a disease-specific effect driving this risk. Regardless of the number or type of conditions, chronic illness in young children is a risk factor for reduced school readiness. These effects were seen for health conditions not traditionally considered detrimental to school readiness, such as chronic otitis media. Thus, the implications of a broader range of chronic health conditions in early childhood on school readiness need to be considered. Copyright © 2016 by the American Academy of Pediatrics.

  19. Caring for teens with chronic illness: risky business?

    PubMed

    Louis-Jacques, Jennifer; Samples, Cathryn

    2011-08-01

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

  20. 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…

  1. 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,…

  2. 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,…

  3. 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,…

  4. Telehomecare for patients with multiple chronic illnesses

    PubMed Central

    Liddy, Clare; Dusseault, Joanne J.; Dahrouge, Simone; Hogg, William; Lemelin, Jacques; Humber, Jennie

    2008-01-01

    OBJECTIVE To examine the feasibility and efficacy of integrating home health monitoring into a primary care setting. DESIGN A mixed method was used for this pilot study. It included in-depth interviews, focus groups, and surveys. SETTING A semirural family health network in eastern Ontario comprising 8 physicians and 5 nurses caring for approximately 10 000 patients. PARTICIPANTS Purposeful sample of 22 patients chosen from the experimental group of 120 patients 50 years old or older in a larger randomized controlled trial (N = 240). These patients had chronic illnesses and were identified as being at risk based on objective criteria and physician assessment. INTERVENTIONS Between November 2004 and March 2006, 3 nurse practitioners and a pharmacist installed telehomecare units with 1 or more peripheral devices (eg, blood-pressure monitor, weight scale, glucometer) in patients’ homes. The nurse practitioners incorporated individualized instructions for using the unit into each patient’s care plan. Patients used the units every morning for collecting data, entering values into the system either manually or directly through supplied peripherals. The information was transferred to a secure server and was then uploaded to a secure Web-based application that allowed care providers to access and review it from any location with Internet access. The devices were monitored in the office on weekdays by the nurse practitioners. MAIN OUTCOME MEASURES Acceptance and use of the units, patients’ and care providers’ satisfaction with the system, and patients’ demographic and health characteristics. RESULTS All 22 patients, 12 men and 10 women with an average age of 73 years (range 60 to 88 years), agreed to participate. Most were retired, and a few were receiving community services. Common diagnoses included hypertension, diabetes, cardiovascular disease, and chronic obstructive pulmonary disease. All patients had blood pressure monitors installed, 11 had wired weight

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

    PubMed

    Mukhida, Karim

    2007-12-01

    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.

  6. [Withholding treatment in terminally-ill newborns with Islamic parents].

    PubMed

    Westra, A E; Smit, B J; Willems, D L

    2007-02-24

    End-of-life decisions for terminally-ill newborn infants are usually made with the consent of parents as well as physicians, but may occasionally involve disagreement about which decision is in the best interest of the child. Paediatricians, while acting in accordance with the principle of respecting the autonomy of the parents, may collide with their own motive of avoiding pointless suffering of the infant. Based on their religious beliefs Islamic parents may not consent to an end-of-life decision. Three newborn girls who eventually died had been suffering from a skeletal dysplasia and a serious bronchopulmonary dysplasia, serious intractable deterioration after surgery for necrotising enterocolitis, and trisomy 18 respectively. In the first two cases there was no preceding consensus between parents and physicians and the girls died after more suffering than the paediatrician found acceptable. The physicians should aspire to prevent conflict situations by paying sufficient attention to the differences in beliefs. This demands that physicians understand and respect different beliefs and that they are able to communicate on the subject of these differences. It is important to Islamic parents that the natural course allows Allah to exercise his authority over life and death, and human dignity. Doing the best for the child is often more important than respect for patient or parent autonomy.

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

    PubMed Central

    Fraser, S.; Walters, J.

    2000-01-01

    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. Key Words: Physician-assisted suicide • voluntary euthanasia • patient autonomy • religious belief PMID:10786323

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

    PubMed

    Årestedt, Liselott; Persson, Carina; Benzein, Eva

    2014-03-01

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

  9. Living with a chronic illness - dealing with feelings

    MedlinePlus

    ... art class, play an instrument, or listen to music. Call or spend time with a friend. Finding ... Larsen PD, ed. Lubkin's Chronic Illness: Impact and Intervention . 9th ed. Burlington, MA: Jones and Bartlett Learning; ...

  10. From spirituality to coping strategy: making sense of chronic illness.

    PubMed

    Greenstreet, Wendy

    This article explores how individuals might make sense of chronic illness. The spiritual aspect of self is described both as being central to finding meaning in suffering with a chronic illness and also the source of hope in meeting the challenges faced. Culture as the template for interpreting the significance of chronic ill health at a personal, familial and societal level is also considered. A conceptual model for understanding life transitions is modified to incorporate the spiritual and cultural perspectives of making sense of chronic illness in relation to coping skills. In understanding how patients make sense of their circumstances nurses are more likely to be able to offer appropriate support to effect coping.

  11. Revisiting biographical disruption: exploring individual embodied illness experience in people with terminal cancer.

    PubMed

    Reeve, Joanne; Lloyd-Williams, Mari; Payne, Sheila; Dowrick, Christopher

    2010-03-01

    Biographical accounts of illness offer useful insights into the social and adaptive processes of living with chronic illness. Yet there are concerns that the underlying theoretical assumptions of a reflexive self seeking to maintain meaning may not reflect the lived experience of individuals. A narrative emphasis may neglect the importance of emotional/felt experiences; while an analytical focus on disruptive processes may not adequately reflect the totality of actual events. In this study, we explored how well biographical theory supports understanding of individual lived experience. Narratives from 19 individuals identified from General Practice lists with a terminal diagnosis of cancer were analysed using the holistic-form approach described by Lieblich. Participants described an ongoing process of living their life, 'managing' disruptive events and maintaining an overall sense of well-being (narrative form = biographical flow). For a minority, continuity was lost when people's capacity to continue living their everyday lives was overwhelmed (narrative form = fracture). The identified emphasis was on individual creative capacity in the face of terminal illness, highlighting the importance of embodied experience in understanding outcome and need. Maintaining continuity was draining: exhaustion precipitated fracture and thus need for external help to restore continuity. By focusing on feelings associated with overall narrative form, rather than individual disruptive events, we highlight the context in which disruptive events are experienced, and individual perceptions of their relative importance. We conclude that combining narrative and emotion offers new insights into the value of understanding of biographical accounts of illness in the context of individual creative capacity. We discuss the possibilities for new approaches to clinical assessment and management of need.

  12. 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…

  13. 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…

  14. 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…

  15. 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

  16. Illness perception in Polish patients with chronic diseases: Psychometric properties of the Brief Illness Perception Questionnaire.

    PubMed

    Nowicka-Sauer, Katarzyna; Banaszkiewicz, Dorota; Staśkiewicz, Izabela; Kopczyński, Piotr; Hajduk, Adam; Czuszyńska, Zenobia; Ejdys, Mariola; Szostakiewicz, Małgorzata; Sablińska, Agnieszka; Kałużna, Anna; Tomaszewska, Magda; Siebert, Janusz

    2016-08-01

    The study evaluates the psychometric properties of a Polish translation of the Brief Illness Perception Questionnaire. A total of 276 patients with chronic conditions (58.7% women) completed the Brief Illness Perception Questionnaire and the Hospital Anxiety and Depression Scale. The internal consistency of the Polish Brief Illness Perception Questionnaire measured with Cronbach's alpha was satisfactory (α = 0.74). Structural validity was demonstrated by significant inter-correlations between the Brief Illness Perception Questionnaire components. Discriminant validity was supported by the fact that the Brief Illness Perception Questionnaire enables patients with various conditions to be differentiated. Significant correlations were found between Brief Illness Perception Questionnaire and depression and anxiety levels. The Polish Brief Illness Perception Questionnaire thus evaluated is a reliable and valid tool. © The Author(s) 2015.

  17. 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

  18. Lingering terminal illness and family: insights from literature.

    PubMed

    Bertman, S L

    1980-12-01

    Literature invites us to enter into the human dilemma in a manner that is different from but no less penetrating than clinical observation. The writer's craft uncovers realities other than the statistically measurable and objective. In languages far from the strictly literal and closer to indirection, symbolism, and aesthetics, the literary artist probes imagination and consciousness. He presents us with transcripts of conversations replete with intonations, and we thereby become privy to motivations and inner thoughts. The artistry of a piece of fiction, autobiographical essay, poem, or drama propels us into empathetic relationships. We feel with the emotions of the involved dramatis personae; we witness their interactions; we experience their points of view. And by such participation, we, the readers, come to perceive and even refine our own. Themes of chronic illness, dying, and bereavement are certainly not alien to literature. This paper explores several literary moments that may help the professional who is working with these issues to have a broader appreciation of the subtleties of these human experiences.

  19. Bone physiology and therapeutics in chronic critical illness.

    PubMed

    Via, Michael A; Gallagher, Emily Jane; Mechanick, Jeffrey I

    2010-11-01

    Modern medical practices allow patients to survive acute insults and be sustained by machinery and medicines for extended periods of time. We define chronic critical illness as a later stage of prolonged critical illness that requires tracheotomy. These patients have persistent elevations of inflammatory cytokines, diminished hypothalamic-pituitary function, hypercatabolism, immobilization, and malnutrition. The measurement of bone turnover markers reveals markedly enhanced osteoclastic bone resorption that is uncoupled from osteoblastic bone formation. We review the mechanisms by which these factors contribute to the metabolic bone disease of chronic critical illness and suggest potential therapeutics. © 2010 New York Academy of Sciences.

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

    PubMed

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

    2008-05-01

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

  1. Unfinished Business in Families of Terminally Ill with Cancer Patients.

    PubMed

    Yamashita, Ryoko; Arao, Harue; Takao, Ayumi; Masutani, Eiko; Morita, Tatsuya; Shima, Yasuo; Kizawa, Yoshiyuki; Tsuneto, Satoru; Aoyama, Maho; Miyashita, Mitsunori

    2017-08-11

    Unfinished business often causes psychological issues after bereavement. Providing care for families of terminally ill patients with cancer to prevent unfinished business is important. To clarify the prevalence and types of unfinished business in families of end-of-life patients with cancer admitted to palliative care units (PCUs), explore depression and grief associated with unfinished business, and explore the factors affecting unfinished business. We conducted a cross-sectional, anonymous, self-report questionnaire survey with 967 bereaved families of patients with cancer admitted to PCUs. The questionnaire assessed the presence/absence of unfinished business, content of unfinished business, depression, grief, process of preparedness, condition of the family and patient, and the degree of involvement of healthcare professionals. Questionnaires were sent to 967 families and 73.0% responded. In total, 26% of families had some unfinished business, with improvement of the patient-family relationship being a common type of unfinished business. Families with unfinished business had significantly higher depression and grief scores after bereavement compared with those without. Factors that influenced the presence/absence of unfinished business were preparedness for the patient's death (p=.001); discussion between the patient and family about the disease trajectory and way to spend daily life (p<.001); good family-patient relationship (p=.011); and family and healthcare professionals considering together the appropriate timing to accomplish the family's wishes (p=.021). Many families have unfinished business. Healthcare professionals should coordinate the appropriate timing for what the family wishes to do, with consideration of family dynamics including the family's preparedness, communication pattern, and relationships. Copyright © 2017. Published by Elsevier Inc.

  2. Prevention and treatment of osteoporosis in chronically ill children.

    PubMed

    Munns, C F; Cowell, C T

    2005-01-01

    Osteoporosis secondary to chronic disease in children has emerged as a major health issue. As the severity of a child's illness increases, so too does the number of factors affecting their bone health. Determinants of bone health in children include level of mobility, exposure to osteotoxic medication, nutritional status, calcium and vitamin D intake, chronic inflammation and pubertal development.

  3. 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…

  4. 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…

  5. Sexual function of women with chronic illness and cancer.

    PubMed

    Basson, Rosemary

    2010-05-01

    Addressing the sexual sequelae of chronic disease and its treatment is now accepted as a fundamental part of healthcare. Most of the sexual effects of chronic disease are negative, and ongoing illness continues to modulate a woman's sexual self-image, energy and interest in sexual activity, as well as her ability to respond to sexual stimuli with pleasurable sensations, excitement, orgasm and freedom from pain with genital stimulation or intercourse. Nevertheless, for many women with chronic illness, sexuality remains extremely important despite the commonly associated fatigue and acquired sexual dysfunctions; sexual resilience can be substantial. Following recovery from cancer surgery, chemotherapy and radiation, prognosis can be excellent and a return to full health can often be expected, and yet, there may have been devastating changes to sexual function owing to the cancer treatment. Women with metastatic disease may still treasure sexual intimacy. Assessment and management of sexual dysfunction is therefore necessary in all women with chronic illness or past or present cancer.

  6. 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.

  7. Working with terminally ill older women: can a feminist perspective add new insight and direction?

    PubMed

    McCandless, N J; Conner, F P

    1999-01-01

    While sexism and ageism in the health care system have been systematically documented, nowhere is the treatment of aging women more androcentric than in the care for the terminally ill. In fact, a terminally ill older woman is too often disadvantaged by a health care system which excludes her from decision-making and renders her powerless. In response, we propose a feminist approach to health care for terminally ill older women and argue that it is this approach which will not only put knowledge and power into the hands of women, but will change the fundamental ways in which women approach death.

  8. Coping mediates the relationship between disease severity and illness intrusiveness among chronically ill patients.

    PubMed

    Hundt, Natalie E; Bensadon, Benjamin A; Stanley, Melinda A; Petersen, Nancy J; Kunik, Mark E; Kauth, Michael R; Cully, Jeffrey A

    2015-09-01

    Reducing perceptions of illness intrusiveness may improve quality of life and mental health among patients with cardiopulmonary disease. To better understand relationships between coping style, locus of control, perceived illness intrusiveness, and disease severity, we analyzed data from 227 older Veterans with chronic obstructive pulmonary disease or congestive heart failure. Regressions revealed illness intrusiveness to be associated with younger age and greater disease severity, less internal locus of control, and avoidant/emotion-focused coping. Avoidant/emotion-focused coping but not active coping mediated the relationship between illness severity and illness intrusiveness. Findings suggest that supportive psychological interventions may reduce illness intrusiveness by targeting an avoidant/emotion-focused coping style and associated behaviors. © The Author(s) 2013.

  9. Chronic Pain Among Homeless Persons with Mental Illness.

    PubMed

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

    2017-02-08

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

  10. 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…

  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. Problematizing health coaching for chronic illness self-management.

    PubMed

    Howard, Lisa M; Ceci, Christine

    2013-09-01

    To address the growing costs associated with chronic illness care, many countries, both developed and developing, identify increased patient self-management or self-care as a focus of healthcare reform. Health coaching, an implementation strategy to support the shift to self-management, encourages patients to make lifestyle changes to improve the management of chronic illness. This practice differs from traditional models of health education because of the interactional dynamics between nurse and patient, and an orientation to care that ostensibly centres and empowers patients. The theoretical underpinnings of coaching reflect these differences, however in its application, the practices arranged around health coaching for chronic illness self-management reveal the social regulation and professional management of everyday life. This becomes especially problematic in contexts defined by economic constraint and government withdrawal from activities related to the 'care' of citizens. In this paper, we trace the development of health coaching as part of nursing practice and consider the implications of this practice as an emerging element of chronic illness self-management. Our purpose is to highlight health coaching as an approach intended to support patients with chronic illness and at the same time, problematize the tensions contained in (and by) this practice.

  13. Chronic illness: trauma, language, and writing: breaking the silence.

    PubMed

    Penn, P

    2001-01-01

    In our work with families that struggle with a chronic illness, we have relied on three ideas. First, we regard illness as a relationally traumatizing experience, not just for the person with the illness, but for other members of the family as well. We use the phrase "relational trauma" because of its effects on members of a wider system who also show signs of physical stress, isolation, and helplessness (Sheinberg & Fraenkel, 2000). Our second concern is how the conversation that leads to new stories is expanded through the development of voice and the use of writing. Looking at language, we are particularly attentive to the social prevalence of negative metaphors that surround and engulf the ill person and her family: dependence, poor genes, repressed personalities, weak constitutions, et cetera (Sontag, 1984). These negative metaphors, or outside voices, join with the inner voices of the ill person and result in a silence that disconnects people at a time when connections must be relied on and above question. Our third emphasis is on the use of writing as the means to create new voices, metaphors, and multiple descriptions that can reinvigorate the conversations silenced by the illness. Once the family's voices are reconstituted through writing, the emotions that have been displaced by the illness are restored to their conversation. I have included new research from JAMA detailing the treatment of patients with chronic illness through their use of writing.

  14. Chronic illness management: what is the role of primary care?.

    PubMed

    Rothman, Arlyss Anderson; Wagner, Edward H

    2003-02-04

    An estimated 99 million Americans live with a chronic illness. Meeting the needs of this population is one of the major challenges facing the U.S. health care system today and in the future. Dozens of studies, surveys, and audits have revealed that sizable proportions of chronically ill patients have not received effective therapy and do not have optimal disease control. The consistent findings of generally substandard care for many chronic conditions have spurred proposals that care be shifted to specialists or disease management programs. Published evidence to date does not indicate any clear superiority of these alternatives to primary care. The defining features of primary care (that is, continuity, coordination, and comprehensiveness) are well suited to care of chronic illness. A rapidly growing body of health services research points to the design of the care system, not the specialty of the physician, as the primary determinant of chronic care quality. The future of primary care in the United States may depend on its ability to successfully redesign care systems that can meet the needs of a growing population of chronically ill patients.

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

    PubMed

    Sabbeth, B

    1984-02-01

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

  16. INSTRUMENT TO ASSESS BURDEN ON CAREGIVERS OF CHRONIC MENTALLY ILL

    PubMed Central

    Thara, R.; Padmavati, R.; Kumar, Shuba; Srinivasan, Latha

    1998-01-01

    The family is a major source of support for the mentally ill in India. Although Indian families show tremendous resilience in caring for their ill relatives, they experience a lot of physical and emotional distress. The burden assessment schedule (BAS) aims to assess both objective and subjective burden experienced by the primary care givers of chronic mentally ill patients. Stepwise ethnographic exploration has been used in the development of this 40 item instrument. Reliability exercises have been carried out throughout the development of this schedule. Criterion validity has been established by comparing with another standardized instrument to assess burden, which has been developed in India. PMID:21494438

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

    PubMed

    Bullenkamp, Jens; Voges, Burkhard

    2004-12-01

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

  18. Dental disease in children with chronic illness

    PubMed Central

    Foster, H; Fitzgerald, J

    2005-01-01

    We focus on the role of the general paediatrician in promoting the importance of good dental health for all children and in particular those children "at risk". We present preventive measures, evidence based where available, that may improve dental care and promote the role of paediatric dental services in the multidisciplinary management of chronic disease. PMID:15970611

  19. 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…

  20. 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…

  1. Do Incarcerated Offenders Experience the Five Stages of Grief as Do Terminally Ill Patients?

    ERIC Educational Resources Information Center

    Pledger, Carolyn Brastow

    1985-01-01

    Examines Kubler-Ross' five stages of grief (denial, anger, bargaining, depression, acceptance) as they are experienced not by terminally ill persons, but by 20 criminal offenders and their families during incarceration. Concludes that shock of arrest and incarceration stimulates reactions similar to those of persons coping with terminal diagnosis.…

  2. Do Incarcerated Offenders Experience the Five Stages of Grief as Do Terminally Ill Patients?

    ERIC Educational Resources Information Center

    Pledger, Carolyn Brastow

    1985-01-01

    Examines Kubler-Ross' five stages of grief (denial, anger, bargaining, depression, acceptance) as they are experienced not by terminally ill persons, but by 20 criminal offenders and their families during incarceration. Concludes that shock of arrest and incarceration stimulates reactions similar to those of persons coping with terminal diagnosis.…

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

    PubMed

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

    2014-04-01

    Given the broad scope of the spillover effects of illness, it is important to characterize the variability in these outcomes to identify relationship types in which secondary impacts of illness are particularly important to include in health economic evaluations. To examine heterogeneity in spillover effects of chronic conditions on family members by type of familial relationship with patient. Adults (aged ≥18 years) and adolescents (aged 13-17 years) who had a parent, spouse, or child in their household with a chronic condition (Alzheimer's disease/dementia, arthritis, cancer, or depression) were recruited from a US 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 an 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. 1,267 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 with 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 with 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. 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 with having a spouse with one of these conditions.

  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. Students Living with Chronic Illness: The School Counselor's Role

    ERIC Educational Resources Information Center

    Hamlet, Helen S.; Gergar, Patricia G.; Schaefer, Barbara A.

    2011-01-01

    To investigate the current practices of schools and school counselors working with students with chronic illness and the protocols for providing these services, the authors conducted a mixed design, grounded theory study, with an eye toward pinpointing any trends or patterns in service provision. They identified a collaborative, developmental,…

  6. 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…

  7. Students Living with Chronic Illness: The School Counselor's Role

    ERIC Educational Resources Information Center

    Hamlet, Helen S.; Gergar, Patricia G.; Schaefer, Barbara A.

    2011-01-01

    To investigate the current practices of schools and school counselors working with students with chronic illness and the protocols for providing these services, the authors conducted a mixed design, grounded theory study, with an eye toward pinpointing any trends or patterns in service provision. They identified a collaborative, developmental,…

  8. Alleviating Pain and Distress in Childhood Chronic Illness.

    ERIC Educational Resources Information Center

    Kuttner, Leora

    1987-01-01

    Describes psychological techniques, such as distraction and hypnotic imaginative involvement techniques, which have been found effective among chronically ill children and their parents in reducing anxiety and distress, and increasing the ability to cope with taxing medical procedures. Cases from research conducted in Vancouver, British Columbia…

  9. 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…

  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. 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…

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

    PubMed

    Tidey, Jennifer W; Miller, Mollie E

    2015-09-21

    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.

  13. Alleviating Pain and Distress in Childhood Chronic Illness.

    ERIC Educational Resources Information Center

    Kuttner, Leora

    1987-01-01

    Describes psychological techniques, such as distraction and hypnotic imaginative involvement techniques, which have been found effective among chronically ill children and their parents in reducing anxiety and distress, and increasing the ability to cope with taxing medical procedures. Cases from research conducted in Vancouver, British Columbia…

  14. 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…

  15. 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…

  16. Improving Communication About Serious Illness

    ClinicalTrials.gov

    2017-01-07

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

  17. Ineffective chronic illness behaviour in a patient with long-term non-psychotic psychiatric illness.

    PubMed

    Koekkoek, Bauke; van Tilburg, Willem

    2010-11-29

    This case report offers a different perspective on a patient with a long-term non-psychotic psychiatric disorder that was difficult to specify. The patient, a man in his 50s, was unable to profit from outpatient treatment and became increasingly dependent on mental healthcare - which could not be understood based on his history and psychiatric symptoms alone. By separating symptoms from illness behaviour, the negative course of this patient's treatment is analysed. Focusing on ineffective chronic illness behaviour by the patient, and mutual ineffective treatment behaviour by the clinicians, it becomes clear that basic requirements of effective treatment were unmet. By making a proper diagnosis, clarifying expectations and offering a suitable therapy, ineffective illness behaviour was diminished and this 'difficult' case became much easier for both patient and clinicians. The illness behaviour framework offers a useful, systematic tool to analyse difficulties between patients and clinicians beyond psychiatric symptoms or explanations.

  18. 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

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

    PubMed

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

    2012-10-23

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

  20. The impact of mental illness on the risk of employment termination.

    PubMed

    Nelson, Richard E; Kim, Jaewhan

    2011-03-01

    Mental illness can adversely impact labor market outcomes in a variety of ways, through education attainment, employment possibilities, and income. However, little is known about the impact of mental illness on an individual's ability to maintain employment. This paper examines the impact of mental health on the risk of employment termination. We also distinguish between voluntary and involuntary employment termination. Using data from the Medical Expenditure Panel Survey, we used survival analysis techniques to examine the impact of a mental illness diagnosis on the risk of employment termination and propensity score matching techniques to construct similar comparison groups. Initially, we used Cox proportional-hazards models where the event of interest was termination of employment. We then used a competing risk framework to differentiate between voluntary and involuntary employment termination. We also stratified our analysis by gender and capture levels of severity, receipt of treatment, and specific type of mental illness. We found that individuals with mental illness have an increased risk of employment termination in general as well as both involuntary and voluntary job loss. These results were consistent across all regression specifications. This paper is the first to explore the association between mental illness and the risk of employment termination in a sample of employed individuals. Employment is closely linked with mental health. Evidence suggests that employment can improve an individual's mental well-being but that job loss can have a detrimental effect. Our results suggest that individuals that can greatly benefit from their jobs are precisely those who are at high risk of losing them. IMPLICATIONS FOR HEALTH CARE PROVISION AND POLICIES: A greater effort must be made to provide support networks for employees within their work environments. IMPLICATIONS FOR HEALTH CARE RESEARCH: Future analysis should examine the impact of antidepressant therapy

  1. Assessing nutritional status in chronically critically ill adult patients.

    PubMed

    Higgins, Patricia A; Daly, Barbara J; Lipson, Amy R; Guo, Su-Er

    2006-03-01

    Numerous methods are used to measure and assess nutritional status of chronically critically ill patients. To discuss the multiple methods used to assess nutritional status in chronically critically ill patients, describe the nutritional status of chronically critically ill patients, and assess the relationship between nutritional indicators and outcomes of mechanical ventilation. A descriptive, longitudinal design was used to collect weekly data on 360 adult patients who required more than 72 hours of mechanical ventilation and had a hospital stay of 7 days or more. Data on body mass index and biochemical markers of nutritional status were collected. Patients' nutritional intake compared with physicians' orders, dieticians' recommendations, and indirect calorimetry and physicians' orders compared with dieticians' recommendations were used to assess nutritional status. Relationships between nutritional indicators and variables of mechanical ventilation were determined. Inconsistencies among nurses' implementation, physicians' orders, and dieticians' recommendations resulted in wide variations in patients' calculated nutritional adequacy. Patients received a mean of 83% of the energy intake ordered by their physicians (SD 33%, range 0%-200%). Patients who required partial or total ventilator support upon discharge had a lower body mass index at admission than did patients with spontaneous respirations (Mann-Whitney U = 8441, P = .001). In this sample, the variability in weaning progression and outcomes most likely reflects illness severity and complexity rather than nutritional status or nutritional therapies. Further studies are needed to determine the best methods to define nutritional adequacy and to evaluate nutritional status.

  2. Differences in skin flora between inpatients and chronically ill outpatients.

    PubMed

    Larson, E L; Cronquist, A B; Whittier, S; Lai, L; Lyle, C T; Della Latta, P

    2000-01-01

    Changes in skin flora have been reported among hospitalized and critically ill patients, but little is known about whether these changes are associated with hospitalization or with chronic, serious illness. The purpose of this survey was to compare skin flora of chronically ill outpatients and inpatients. Aerobic skin flora of forearm and midsternum of 250 patients in an intensive care unit and 251 outpatients was sampled by contact plates. Mean colony-forming units were 160.6, forearm; 229. 4, sternum (P <.000). In logistic regression analysis, patients in the medical intensive care unit were significantly more likely to have high counts on the arm (odds ratio, 2.48; 95% confidence interval: 1.34-4.43; P =.004), and blacks were significantly more likely to have higher counts on the sternum when compared with other ethnic groups (odds ratio, 1.92; confidence interval: 1.18-3.11; P =. 009). No differences were noted between inpatients or outpatients in prevalence of methicillin-sensitive Staphylococcus aureus, but inpatients were more likely to carry methicillin-resistant Staphylococcus aureus (arm, P =.007; sternum, P =.02). Outpatients had a higher prevalence of micrococci and gram-negative bacteria at both skin sites (all P <.01) and yeast at the sternal site (P =.007). This comparison provides data to differentiate between effects of hospitalization and effects of chronic illness on skin flora.

  3. AIDS risk and prevention for the chronic mentally ill.

    PubMed

    Carmen, E; Brady, S M

    1990-06-01

    Some chronic mentally ill populations are at high risk for infection with human immunodeficiency virus. The authors argue that stereotypes of the mentally ill as asexual or neutered have had dangerous consequences, namely the absence of sex education and AIDS prevention as an integral part of treatment. To counter this neglect, the authors developed an AIDS prevention program in a large inner-city mental health center that serves primarily black and Latino patients. Prevention efforts include individual risk assessments and an innovative drop-in group. Central to effective patient education are the distribution of condoms and concrete instruction in their use.

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

    PubMed

    Flores-Carvajal, Daniel; Urzúa M, Alfonso

    2016-01-01

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

  5. Brain dysfunction in patients with chronic critical illness.

    PubMed

    Girard, Timothy D

    2012-06-01

    Critically ill patients frequently experience acute brain dysfunction in the form of coma or delirium, both of which are common during acute and chronic critical illness (CCI). These manifestations of brain dysfunction are associated with numerous adverse outcomes during acute critical illness, including prolonged hospitalization, increased healthcare costs, and increased mortality. The prognosis of CCI patients with coma or delirium has not yet been thoroughly studied, but preliminary studies suggest this population is at high risk for detrimental outcomes associated with acute brain dysfunction. Additionally, a high percentage of patients who survive acute or CCI suffer from long-term brain dysfunction, which manifests primarily as memory deficits and executive dysfunction and is predicted by brain dysfunction in the ICU. Interventions directed at reducing the burden of brain dysfunction during critical illness have shown promise in studies of patients with acute critical illness, but these therapies have yet to be studied during CCI. Thus, multicenter randomized trials are needed to determine which interventions are most effective for such patients. Until these data are available, management strategies that have been proven beneficial during acute critical illness-such as reduction of sedative exposure, especially to benzodiazepines, and early use of physical and occupational therapy-should be employed during the treatment of patients with CCI. 2012 Daedalus Enterprises

  6. Rough Set Theory based prognostication of life expectancy for terminally ill patients.

    PubMed

    Gil-Herrera, Eleazar; Yalcin, Ali; Tsalatsanis, Athanasios; Barnes, Laura E; Djulbegovic, Benjamin

    2011-01-01

    We present a novel knowledge discovery methodology that relies on Rough Set Theory to predict the life expectancy of terminally ill patients in an effort to improve the hospice referral process. Life expectancy prognostication is particularly valuable for terminally ill patients since it enables them and their families to initiate end-of-life discussions and choose the most desired management strategy for the remainder of their lives. We utilize retrospective data from 9105 patients to demonstrate the design and implementation details of a series of classifiers developed to identify potential hospice candidates. Preliminary results confirm the efficacy of the proposed methodology. We envision our work as a part of a comprehensive decision support system designed to assist terminally ill patients in making end-of-life care decisions.

  7. Comfort care for terminally ill patients. The appropriate use of nutrition and hydration.

    PubMed

    McCann, R M; Hall, W J; Groth-Juncker, A

    1994-10-26

    To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation. Prospective evaluation of consecutively admitted terminally ill patients treated in a comfort care unit. Ten-bed comfort care unit in a 471-bed long-term care facility. Mentally aware, competent patients with terminal illnesses monitored from time of admission to time of death while residing in the comfort care unit. Symptoms of hunger, thirst, and dry mouth were recorded, and the amounts and types of food and fluids necessary to relieve these symptoms were documented. The subjective level of comfort was assessed longitudinally in all patients. Of the 32 patients monitored during the 12 months of study, 20 patients (63%) never experienced any hunger, while 11 patients (34%) had symptoms only initially. Similarly, 20 patients (62%) experienced either no thirst or thirst only initially during their terminal illness. In all patients, symptoms of hunger, thirst, and dry mouth could be alleviated, usually with small amounts of food, fluids, and/or by the application of ice chips and lubrication to the lips. Comfort care included use of narcotics for relief of pain or shortness of breath in 94% of patients. In this series, patients terminally ill with cancer generally did not experience hunger and those who did needed only small amounts of food for alleviation. Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration. Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients.

  8. 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.…

  9. 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.…

  10. "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…

  11. 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…

  12. Osteoporosis in Children with Chronic Illnesses: Diagnosis, Monitoring, and Treatment.

    PubMed

    Grover, Monica; Bachrach, Laura K

    2017-08-01

    Osteoporosis is an under-recognized complication of chronic illness in childhood. This review will summarize recent literature addressing the risk factors, evaluation, and treatment for early bone fragility. Criteria for the diagnosis of pediatric osteoporosis include the presence of low trauma vertebral fractures alone or the combination of low bone mineral density and several long bone fractures. Monitoring for bone health may include screening for vertebral fractures that are common but often asymptomatic. Pharmacologic agents should be offered to those with fragility fractures especially when spontaneous recovery is unlikely. Controversies persist about the optimal bisphosphonate agent, dose, and duration. Newer osteoporosis drugs have not yet been adequately tested in pediatrics, though clinical trials are underway. The prevalence of osteoporosis is increased in children with chronic illness. To reduce the frequency of fragility fractures requires increased attention to risk factors, early intervention, and additional research to optimize therapy and potentially prevent their occurrence.

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

    PubMed

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

    2008-09-01

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

  14. Nonprofessional Care in Chronic Critically Ill Patient: A Qualitative Study

    PubMed Central

    Dehkordi, Leila Mardanian; Babashahi, Monireh; Irajpour, Alireza

    2016-01-01

    Background: Decision-making about patients with critical condition transfer from Intensive Care Unit to the general wards be delegated to their families. The aim of the study was explaining the experiences of family caregiver's about care of chronic critically ill patient. Methods: This study was conducted with a qualitative content analysis using unstructured interview. Participants were selected purposively from May 2014 to May 2015 and data collection continued until data saturation. Analysis was based on conventional content analysis. Results: Participants’ experiences classified into three main categories as following: nonprofessional care, enhancing factors of care, and inhibiting factors of care. Conclusions: Finding of the current study showed different aspects of care. Care of chronic critically ill patients is a long-term process that affected by different factors. It seems that the exploration of caregivers needs and planning supportive interventions based on their needs improve the quality of care. PMID:28028426

  15. [Vocational rehabilitation in chronic mental illness. The current position].

    PubMed

    Pfammatter, M; Hoffmann, H; Kupper, Z; Brenner, H D

    2000-02-01

    Vocational rehabilitation has long been of central importance in the comprehensive treatment of the psychiatrically disabled. This is reflected by the creation of a broad spectrum of vocational rehabilitation programs, ranging from inpatient and outpatient work therapy and sheltered employment to supported employment programs within the competitive labour market. Evaluation studies have shown that although sheltered vocational rehabilitation programs effect a significant rise in the work activity, rate of employment, job tenure and income of people with chronic mental illness in the alternative labour market, these programmes do not substantially increase job placement in the competitive labour market. By contrast, supported employment programs have proven more successful in achieving a higher integration rate in the competitive labour market for the chronically mentally ill. As opposed to the well-developed alternative labour market, supported employment programs are not broadly disseminated in German-speaking countries. Furthermore, vocational rehabilitation in general suffers from a lack of systematic evaluation and thus from inadequate scientific foundation.

  16. Chloramphenicol with fluid and electrolyte therapy cures terminally ill green tree frogs (Litoria caerulea) with chytridiomycosis.

    PubMed

    Young, Sam; Speare, Rick; Berger, Lee; Skerratt, Lee F

    2012-06-01

    Terminal changes in frogs infected with the amphibian fungal pathogen Batrachochytrium dendrobatidis (Bd) include epidermal degeneration leading to inhibited epidermal electrolyte transport, systemic electrolyte disturbances, and asystolic cardiac arrest. There are few reports of successful treatment of chytridiomycosis and none that include curing amphibians with severe disease. Three terminally ill green tree frogs (Litoria caerulea) with heavy Bd infections were cured using a combination of continuous shallow immersion in 20 mg/L chloramphenicol solution for 14 days, parenteral isotonic electrolyte fluid therapy for 6 days, and increased ambient temperature to 28 degrees C for 14 days. All terminally ill frogs recovered rapidly to normal activity levels and appetite within 5 days of commencing treatment. In contrast, five untreated terminally ill L. caerulea with heavy Bd infections died within 24-48 hr of becoming moribund. Subclinical infections in 15 experimentally infected L. caerulea were cured within 28 days by continuous shallow immersion in 20 mg/L chloramphenicol solution without adverse effects. This is the first known report of a clinical treatment protocol for curing terminally ill Bd-infected frogs.

  17. [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.

  18. Health professionals, patients and chronic illness policy: a qualitative study

    PubMed Central

    Yen, Laurann; Gillespie, James; RN, Yun‐Hee Jeon; Kljakovic, Marjan; Brien, Jo‐anne; Jan, Stephen; Lehnbom, Elin; Pearce‐Brown, Carmen; Usherwood, Tim

    2010-01-01

    Abstract Background and objective  This study investigates health professionals’ reactions to patients’ perceptions of health issues – a little‐researched topic vital to the reform of the care of chronic illness. Methods  Focus groups were undertaken with doctors, nurses, allied health staff and pharmacists (n = 88) in two Australian urban regions. The focus groups explored responses to patient experiences of chronic illness (COPD, Diabetes, CHF) obtained in an earlier qualitative study. Content analysis was undertaken of the transcripts assisted by NVivo7 software. Results  Health professionals and patients agreed on general themes: that competing demands in self‐management, financial pressure and co‐morbidity were problems for people with chronic illness. However where patients and carers focused on their personal challenges, health professionals often saw the patient experience as a series of failures relating to compliance or service fragmentation. Some saw this as a result of individual shortcomings. Most identified structural and attitudinal issues. All saw the prime solution as additional resources for their own activities. Fee for service providers (mainly doctors) sought increased remuneration; salaried professionals (mainly nurses and allied health professionals) sought to increase capacity within their professional group. Conclusions  Professionals focus on their own resources and the behaviour of other professionals to improve management of chronic illness. They did not factor information from patient experience into their views about systems improvement. This inability to identify solutions beyond their professional sphere highlights the limitations of an over‐reliance on the perspectives of health professionals. The views of patients and carers must find a stronger voice in health policy. PMID:20550589

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

    PubMed

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

    2015-09-01

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

  20. 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

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

    PubMed

    Maslow, Gary R; Hill, Sherika N

    2016-05-08

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

  2. 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

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

    PubMed Central

    Cramm, Jane Murray; Nieboer, Anna Petra

    2013-01-01

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

  4. The gift of healing in chronic illness/disability.

    PubMed

    Lindsey, E

    1995-12-01

    Chronic illness and disabilities are the leading health problems in North America and represent the major health challenges of this era. The traditional Western illness care model that has profoundly influenced health care and nursing practice is oppressive, inappropriate, and inadequate to meet the needs of people living with chronic conditions. What is needed is a fundamental shift in perspective, one that abandons the objective stance of the cure paradigm of Western medicine and embraces the care paradigm where the subjective experience of the person is of central concern. Such a perspective allows for the potential for healing to occur, regardless of the person's physical condition. This article presents the results of a recent study investigating the healing experience of people with chronic health challenges. An interpretive phenomenological investigation was undertaken with 8 participants, each participant living with different chronic conditions. The results of this study describe the participants' healing journey. Seven essential themes emerged to describe this experience. These themes include (a) In the Beginning, (b) Hitting the Wall, (c) Turning Around, (d) Letting Go, (e) Opening Up, (f) Letting In, and (g) the Gift. The results demonstrate a need to reconsider nursing education and practice, which shifts from the mandate of cure to a mandate of care and to one that emphasizes the promotion of health and healing.

  5. Hope as a Strategy in Supervising Social Workers of Terminally Ill Patients

    ERIC Educational Resources Information Center

    Itzhaky, Haya; Lipschitz-Elhawi, Rachel

    2004-01-01

    This article focuses on supervision of social workers who feel despair and hopelessness in treating terminally ill patients. The emotional difficulties that may lead to these feelings are discussed. A special model of supervision that relates to hope as a strategy to help social workers cope with such difficulties is presented. The model suggests…

  6. 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).

  7. Interpreting a moral right. Ethical dilemmas in nutritional support for terminally ill patients.

    PubMed

    Fawcett, H

    1993-03-01

    The decision of whether to withdraw or withhold nutritional support in terminally ill patients presents a multifaceted ethical dilemma. Any decision must, of course, be in the patient's best interests and in accordance with an interpretation of his or her wishes, but how can this be proved to be so?

  8. The challenges of caring for families of the terminally ill: nurses' lived experience.

    PubMed

    Namasivayam, Pathmavathy; Orb, Angélica; O'Connor, Margaret

    2005-01-01

    Caring for families of the terminally ill is an important aspect of nursing care as nurses are considered the main health care professionals who are closest to families. This paper describes the experience of seven registered nurses caring for families of the terminally ill in Western Australia. Five of the nurses worked in an acute area at a public hospital; the other two nurses worked at long-term care settings at a private hospital. Descriptive phenomenology as described by Husserl (1970) was used to describe and explore nurses' lived experience. Data were collected through in depth interviews and analysed using the Colaizzi method. Four major themes are reported in this paper: 1) walking a journey together; 2) dealing with intense emotions; 3) working as a team; and 4) balancing the dimension of care. Nurses' lived experiences of caring for families of terminally ill patients revealed that nurses are confronted by families' emotions and at the same time needed to manage their own emotions. The findings further indicated that nurses play a significant role in caring for families of the terminally ill. The family's fear of losing their loved ones often resulted in conflicts, which required extra time from nurses. Moreover, some of the major barriers identified were time constraints and excessive workloads. Finally, some implications of the findings for registered nurses are discussed.

  9. 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)

  10. 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…

  11. 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).

  12. Integrated Care for the Terminally Ill: Variations in the Utilization of Formal Services.

    ERIC Educational Resources Information Center

    Meyers, Allan R.; And Others

    1983-01-01

    A review of 85 patients who received home care for terminal illness showed that a small proportion of patients use a relatively high volume of both in-patient and home care services. Data suggest that there are two dimensions of service utilization: a medical dimension and a social dimension. (Author/RC)

  13. Islamic views on artificial nutrition and hydration in terminally ill patients.

    PubMed

    Alsolamy, Sami

    2014-02-01

    Withholding and withdrawing artificial nutrition and hydration from terminally ill patients poses many ethical challenges. The literature provides little information about the Islamic beliefs, attitudes, and laws related to these challenges. Artificial nutrition and hydration may be futile and reduce quality of life. They can also harm the terminally ill patient because of complications such as aspiration pneumonia, dyspnea, nausea, diarrhea, and hypervolemia. From the perspective of Islam, rules governing the care of terminally ill patients are derived from the principle that injury and harm should be prevented or avoided. The hastening of death by the withdrawal of food and drink is forbidden, but Islamic law permits the withdrawal of futile, death-delaying treatment, including life support. Nutritional support is considered basic care and not medical treatment, and there is an obligation to provide nutrition and hydration for the dying person unless it shortens life, causes more harm than benefit, or is contrary to an advance directive that is consistent with Islamic law. The decision about withholding or withdrawing artificial nutrition and hydration from the terminally ill Muslim patient is made with informed consent, considering the clinical context of minimizing harm to the patient, with input from the patient, family members, health care providers, and religious scholars.

  14. 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.…

  15. [Counseling: a comprehensive method to support the terminally ill].

    PubMed

    Undurraga F, Juan P; González, Matías; Calderón, Jorge

    2006-11-01

    During the last decades we have witnessed a progressive aging of the general population and a higher prevalence of chronic disease. This fact along with the appearance of infectious diseases like AIDS, anticipates that more patients will benefit from comprehensive palliative care. The objective of this article is to propose a simple, integral and effective method of emotional support to the patient, family and health team in palliative care (PC). PC receives little attention in medical schools, despite the great impact it has on standard health practice and quality of life of patients and their families. Our proposed method, counselling, has been empirically studied and proven to be an effective therapeutic tool in promoting behavioural changes that favour the outcome of many conditions. We believe that it facilitates PC practice, promoting direct conversation and identifying issues that can potentially cause suffering to the patients. It is based on the patient's autonomy, considers his multiple dimensions, uses and stimulates patient's own resources and coping strategies, to improve quality of life

  16. Care fragmentation, quality, and costs among chronically ill patients.

    PubMed

    Frandsen, Brigham R; Joynt, Karen E; Rebitzer, James B; Jha, Ashish K

    2015-05-01

    To assess the relationship between care fragmentation and both quality and costs of care for commercially insured, chronically ill patients. We used claims data from 2004 to 2008 for 506,376 chronically ill, privately insured enrollees of a large commercial insurance company to construct measures of fragmentation. We included patients in the sample if they had chronic conditions in any of the following categories: cardiovascular disease, diabetes, asthma, arthritis, or migraine. We assigned each patient a fragmentation index based on the patterns of care of their primary care provider (PCP), with care patterns spread across a higher number of providers considered to be more fragmented. We used regression analysis to examine the relationship between fragmentation and both quality and cost outcomes. Patients of PCPs in the highest quartile of fragmentation had a higher chance of having a departure from clinical best practice (32.8%, vs 25.9% among patients of PCPs in the lowest quartile of fragmentation; P < .001). Similarly, patients of PCPs with high fragmentation had higher rates of preventable hospitalizations (9.1% in highest quartile vs 7.1% in lowest quartile; P < .001). High fragmentation was associated with $4542 higher healthcare spending ($10,396 in the highest quartile vs $5854 in the lowest quartile; P < .001). We found similar or larger effects on quality and costs among patients when we examined the most frequently occurring disease groups individually. Chronically ill patients whose primary care providers offer highly fragmented care more often experience lapses in care quality and incur greater healthcare costs.

  17. Physical exercise and therapy in terminally ill cancer patients: a retrospective feasibility analysis.

    PubMed

    Jensen, Wiebke; Bialy, Laura; Ketels, Gesche; Baumann, Freerk T; Bokemeyer, Carsten; Oechsle, Karin

    2014-05-01

    Physical exercise (PE) and/or therapy (PT) shows beneficial effects in advanced cancer patients and is increasingly implemented in hospice and palliative care, although systematic data are rare. This retrospective study systematically evaluated the feasibility of PE/PT in terminally ill cancer patients and of different modalities in correspondence to socio-demographic and disease- and care-related aspects. All consecutive terminally ill cancer patients treated in a palliative care inpatient ward during a 3.5-year period were included. The modalities were chosen according to the therapists' and patients' appraisal of current performance status and symptoms. PE/PT were offered to 572 terminally ill cancer patients, whereof 528 patients (92 %) were able to perform at least one PE/PT unit (average 4.2 units/patient). The most frequently feasible modalities were physical exercises in 50 %, relaxation therapy in 22 %, breathing training in 10 %, and positioning and lymph edema treatment in 6 % each. Physical exercise and positioning treatment were performed significantly more often in older patients (p=0.009 and p=0.022, respectively), while relaxation (p=0.05) and lymph edema treatment (p=0.001) were used more frequently in younger. Breathing training was most frequently performed in head and neck cancer (p=0.002) and lung cancer (p=0.026), positioning treatment in brain tumor patients (p=0.021), and lymph edema treatment in sarcoma patients (p=0.012). PE/PT were feasible in >90 % of terminally ill cancer patients to whom PE/PT had been offered. Physical exercises, relaxation therapy, and breathing training were the most frequently applicable methods. Prospective trials are needed to evaluate the efficacy of specific PE/PT programs in terminally ill cancer patients.

  18. On withholding artificial hydration and nutrition from terminally ill sedated patients. The debate continues.

    PubMed Central

    Craig, G M

    1996-01-01

    The author reviews and continues the debate initiated by her recent paper in this journal. The paper was critical of certain aspects of palliative medicine, and caused Ashby and Stoffell to modify the framework they proposed in 1991. It now takes account of the need for artificial hydration to satisfy thirst, or other symptoms due to lack of fluid intake in the terminally ill. There is also a more positive attitude to the emotional needs and ethical views of the patient's family and care-givers. However, clinical concerns about the general reluctance to use artificial hydration in terminal care remain, and doubts persist about the ethical and legal arguments used by some palliative medicine specialists and others, to justify their approach. Published contributions to the debate to date, in professional journals, are reviewed. Key statements relating to the care of sedated terminally ill patients are discussed, and where necessary criticised. PMID:8798936

  19. Unsolicited written narratives as a methodological genre in terminal illness: challenges and limitations.

    PubMed

    O'Brien, Mary R; Clark, David

    2012-02-01

    Stories about illness have proven invaluable in helping health professionals understand illness experiences. Such narratives have traditionally been solicited by researchers through interviews and the collection of personal writings, including diaries. These approaches are, however, researcher driven; the impetus for the creation of the story comes from the researcher and not the narrator. In recent years there has been exponential growth in illness narratives created by individuals, of their own volition, and made available for others to read in print or as Internet accounts. We sought to determine whether it was possible to identify such material for use as research data to explore the subject of living with the terminal illness amyotrophic lateral sclerosis/motor neuron disease--the contention being that these accounts are narrator driven and therefore focus on issues of greatest importance to the affected person. We encountered and sought to overcome a number of methodological and ethical challenges, which is our focus here.

  20. End of life, chronic illness, and trans-identities.

    PubMed

    Witten, Tarynn M

    2014-01-01

    In this study, the experiences and needs of a sample of 1,963 current, global, English-speaking, transgender-identified adults responding to the Transgender MetLife Survey (TMLS) as related to a number of later-life and end-of-life (EOL) preparations and concerns were examined. EOL concerns are integrated with concerns and challenges around chronic illness and disability. Overall, this population was significantly ill-prepared for the major legalities and events that occur in the later to EOL time periods. The population was found to harbor significant fears around the future. Drawing on the author's decades of survey research in transgender aging and case data along with current scientific and online literature, illustrative quotations and case examples are provided.

  1. The integration of chronic illness self-management.

    PubMed

    Audulv, Asa; Asplund, Kenneth; Norbergh, Karl-Gustaf

    2012-03-01

    Self-management is crucial for people living with chronic diseases, but the actual process of integrating self-management has not been explored in depth. In this article, we investigate the integration of self-management into the lives of people with chronic illness. In this longitudinal study, we used an interpretive description approach. Twenty-one individuals were interviewed regularly during the first 3 years after they were diagnosed with a chronic condition. We found self-management integration to be an ongoing process that included four phases: seeking effective self-management strategies, considering costs and benefits, creating routines and plans of action, and negotiating self-management that fits one's life. The participants managed the phases according to their context, e.g., illness experience, life situation, personal beliefs, and social support. Health care providers should therefore facilitate self-management integration by providing support that is adjusted to the person's phase of self-management integration and life context.

  2. 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…

  3. 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

  4. Paper versus electronic documentation in complex chronic illness: a comparison.

    PubMed

    Smith, Catherine Arnott; Haque, Saira N

    2006-01-01

    This paper reports an analysis and comparison of the electronic and paper medical records of 5 clinically complex persons with spina bifida, who were seen as in- and outpatients at a small Northeastern urban hospital. The combination of chronic illness, multiple medical and allied health specialties, and longer lifespan in this population ensures both a quantitative volume and qualitative complexity of medical event documentation. This ensures a rich field for research into the content and the nature of the fragmented data presently locked in the paper record.

  5. 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

  6. Sustaining hope when communicating with terminally ill patients and their families: a systematic review.

    PubMed

    Clayton, Josephine M; Hancock, Karen; Parker, Sharon; Butow, Phyllis N; Walder, Sharon; Carrick, Sue; Currow, David; Ghersi, Davina; Glare, Paul; Hagerty, Rebecca; Olver, Ian N; Tattersall, Martin H N

    2008-07-01

    The aim of this systematic review was to examine studies that have investigated sustaining hope during prognostic and end-of-life issues discussions with terminally ill patients and their families. A comprehensive search of databases (MEDLINE, EMBASE, CINAHL, PsychINFO, Cochrane Central Register of Controlled Trials) and handsearching, from 1985 to June 2006, identified 27 studies. This review suggests that the issues surrounding hope in this context are complex. Despite the lack of unanimity among researchers regarding the definition of hope, findings suggest that balancing hope with honesty is an important skill for health professionals (HPs). Many patients seem to be able to maintain a sense of hope despite acknowledging the terminal nature of their illness. Patients and caregivers mostly preferred honest and accurate information, provided with empathy and understanding. Many different sources of hope were identified in this context in broad aspects of life, not just the medical situation. HPs need to recognize this spectrum of hope and appreciate that patients may simultaneously hope for 'cure' while acknowledging the terminal nature of their illness. HPs may help patients to cope with their terminal prognosis by exploring and fostering realistic forms of hope that are meaningful for the particular patient and their family.

  7. Counseling the patient with chronic illness: strategies for the health care provider.

    PubMed

    Aguilar, N

    1997-04-01

    The process of assisting a patient with chronic illness starts with understanding chronicity from the patient's perspective and its effect on the health care relationship. By learning the impact that chronic illness has on the individual and recognizing the factors involved with adapting to chronic illness, the health care provider can hope to reach this understanding. An appreciation of the coping strategies commonly used by patients with chronic illnesses helps in selecting the appropriate counseling methods to foster psychological health. Specific strategies, such as reciprocal trust, Rational-Emotive Therapy, and the "School of Bravery" approach, and spiritual care are discussed.

  8. An exploration of the experience of lesbians with chronic illness.

    PubMed

    Walden, Elizabeth L

    2009-01-01

    An exploration of the challenges facing lesbians with chronic conditions and their coping strategies was investigated by examining the experiences of participants who were clients of a volunteer organization serving chronically ill lesbians. This article reports the results associated with those challenges, with its ultimate goal being and to assess the effectiveness of current services. Using the participant observation method, as employed by O'Toole (2000), the analysis was based on multiple data sources and 10 years experience within the volunteer organization, including 3 years in direct client support. A qualitative method served as the primary focus for the study. The quantitative method preceded the qualitative method and provided limited supporting data. The total number of participants included all past and current clients, but the number participating in each data source varied. Qualitative sources included archival structured interviews (n = 69), taped interviews (n = 5-6), and extensive comments written in response to the quantitative surveys (n = 14). The quantitative measures (n = 14) included the researcher-developed Chronic Conditions Challenges Checklist (C4) and the Short Form of the McGill Pain Questionnaire ([SF-MPQ]; Melzack, 1998). A content analysis of all data sources found a number of challenges that met the criteria of being identified in at least two data sources and across multiple participants. Challenges included those related to the disease process (i.e., pain, fatigue, and decreases in mobility) to impacts of the condition (financial security, ability to participate, support from family of origin and independence, loneliness, and issues related to mental health). Challenges were discussed in terms of those that are similar to and different from other women suffering from chronic illness, as well as their relevance to related literature.

  9. Cardiopulmonary Resuscitation in Patients With Terminal Illness: An Evidence-Based Analysis

    PubMed Central

    Sehatzadeh, S

    2014-01-01

    Background Cardiopulmonary resuscitation (CPR) was first introduced in 1960 for people who unexpectedly experience sudden cardiac arrest. Over the years, it became routine practice in all institutions to perform CPR for all patients even though, for some patients with fatal conditions, application of CPR only prolongs the dying process through temporarily restoring cardiac function. Objectives This analysis aims to systematically review the literature to provide an accurate estimate of survival following CPR in patients with terminal health conditions. Data Sources A literature search was performed for studies published from January 1, 2004, until January 10, 2014. The search was updated monthly to March 1, 2014. Review Methods Abstracts and full text of studies that met eligibility criteria were reviewed. Reference lists were also examined for any additional relevant studies not identified through the search. Results Cancer patients have lower survival rates following CPR than patients with conditions other than cancer, and cancer patients who receive CPR in intensive care units have one-fifth the rate of survival to discharge of cancer patients who receive CPR in general wards. While the meta-analysis of studies published between 1967 and 2005 reported a lower survival to discharge for cancer patients (6.2%), more recent studies reported higher survival to discharge or to 30-day survival for these patients. Higher survival rates in more recent studies could originate with more “do not attempt resuscitation” orders for patients with end-stage cancer in recent years. Older age does not significantly decrease the rate of survival following CPR while the degree, the type, and the number of chronic health conditions; functional dependence; and multiple CPRs (particularly in advanced age) do reduce survival rates. Emergency Medical Services response time have a significant impact on survival following out-of-hospital CPR. Conclusions Survival after CPR depends on

  10. 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…

  11. 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…

  12. The chronic critical illness: a new disease in intensive care.

    PubMed

    Desarmenien, Marine; Blanchard-Courtois, Anne Laure; Ricou, Bara

    2016-01-01

    Advances in intensive care medicine have created a new disease called the chronic critical illness. While a significant proportion of severely ill patients who twenty years ago would have died survive the acute phase, they remain heavily dependent on intensive care for a prolonged period of time. These patients, who can be called "Patient Long Séjour" in French (PLS) or Prolonged Length of Stay patients in English, develop specific health issues that are still poorly recognised. They require special care, which differs from treatments that are given during the acute phase of their illness. A multidisciplinary team dedicated to ensuring their management and follow-up acquired a wide range of knowledge and expertise about these PLSs. Many new monitoring tools and diverse human approaches were implemented to ensure that care was targeted to these patients' needs. This multimodal care management aims to optimise the patients' and their families' quality of life during and following intensive care, whilst maintaining the motivation of the healthcare team of the unit. The purpose of this article is to present new management techniques to hospital and ambulatory caregivers, physicians and nurses, who may be taking care of such patients.

  13. Psychometric properties of the Death Anxiety Scale (DAS) among terminally ill cancer patients.

    PubMed

    Royal, Kenneth D; Elahi, Fereshte

    2011-01-01

    Research conducted with the terminally ill population in relation to death anxiety is rare and mostly outdated. The purpose of this study was to evaluate the psychometric properties of the widely used Death Anxiety Scale (DAS) on a sample of terminal cancer patients.Additionally, validation studies of the DAS have exclusively used traditional statistical methods for analysis. The current study utilized an item response theory technique (IRT), namely the Rasch Rating Scale model for data analysis. The methodology employed may be useful for other researchers conducting validation studies from an IRT perspective.

  14. 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

  15. Development and psychometric evaluation of the Chronic Illness Anticipated Stigma Scale

    PubMed Central

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

    2015-01-01

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

  16. 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. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  17. 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

  18. Attributions about Cause of Illness in Chronic Obstructive Pulmonary Disease

    PubMed Central

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

    2010-01-01

    Objective Patients’ beliefs about the causes of their illness have been associated with emotional adjustment and behavioral outcomes in several medical conditions; however, few studies have examined illness attributions among patients with COPD. In the current study, patterns of patients’ causal attributions for COPD were identified and examined in relation to health behaviors and symptoms. Method Three-hundred and ninety-four patients with COPD and ≥10 pack year history of smoking completed a self-report questionnaire that included the Illness Perception Questionnaire- Revised (IPQ-R). Results A factor analysis of the IPQ-R cause items using principal axis factoring yielded four individual items (i.e., smoking, heredity, pollution, and personal behavior) and one large factor that was primarily driven by psychological attributions. Ninety-three percent of patients agreed or strongly agreed that smoking was a cause of their COPD. Higher scores on the large IPQ-R factor were associated with reduced quality of life (r=.25, p<.001) and symptoms of anxiety (r=.33, p<.001) and depression (r=.31, p<.001), indicating that patients who attributed their COPD to psychological factors were more likely to have poorer emotional adjustment and quality of life. Conclusions Our finding of one large factor with several stand-alone items is in contrast with previous research that has derived a multi-factor structure for the cause items of the IPQ-R in other chronic illness populations. This difference may be due to the importance of smoking, environmental exposures, and heredity in the development of COPD. Future research should expand upon these specific attributions in COPD‥ PMID:21511077

  19. Illness perception in people with chronic obstructive pulmonary disease.

    PubMed

    Borge, Christine Råheim; Moum, Torbjørn; Puline Lein, Martha; Austegard, Elise Lynn; Wahl, Astrid Klopstad

    2014-10-01

    Illness perception (IP) concerns how patients evaluate living with a disease. To get a broader understanding of IP in patients with chronic obstructive pulmonary disease (COPD), we investigated whether breathlessness is an important precursor of IP and whether IP in its turn is related to mental health, physical health and global quality of life (QOL). One hundred and fifty-four patients with COPD participated in a cross-sectional survey. Participants underwent pulmonary function testing, provided socio-demographic and clinical information, and completed the following standardized instruments: Brief Illness Perception Questionnaire, Respiratory Quality of Life Questionnaire, Short-Form 12 Health Survey and the Quality of Life Scale. Multiple regression analyses were performed. A high IP score indicates that a patient believes that his/her illness represents a threat. Participants with a high score on the IP dimensions consequences, identity, concern and emotional representation, experienced more breathlessness. High scores on the IP dimensions consequences, identity and concern were associated with impaired physical health and high scores on the IP dimensions consequences, identity and emotional representation were associated with impaired mental health. Impaired global QOL was associated with high scores on the IP dimensions consequences, identity, concern, coherence and emotional representation. The strength of the associations between breathlessness and physical/mental health and global QOL decreased when certain dimensions of IP were included as predictors, indicating that IP to some extent acts as a mediating factor. These findings may have practical implications of patient counselling by helping COPD patients to cope with their disease by restructuring their personal models of illness. © 2014 Scandinavian Psychological Associations and John Wiley & Sons Ltd.

  20. Oral health conditions affect functional and social activities of terminally-ill cancer patients

    PubMed Central

    Fischer, D.J.; Epstein, J.B.; Yao, Y.; Wilkie, D.J.

    2013-01-01

    Purpose Oral conditions are established complications in terminally-ill cancer patients. Yet despite significant morbidity, the characteristics and impact of oral conditions in these patients are poorly documented. The study objective was to characterize oral conditions in terminally-ill cancer patients to determine the presence, severity, and the functional and social impact of these oral conditions. Methods This was an observational clinical study including terminally-ill cancer patients (2.5–3 week life expectancy). Data were obtained via the Oral Problems Scale (OPS) that measures the presence of subjective xerostomia, orofacial pain, taste change, and the functional/social impact of oral conditions and a demographic questionnaire. A standardized oral examination was used to assess objective salivary hypofunction, fungal infection, mucosal erythema, and ulceration. Regression analysis and t test investigated the associations between measures. Results Of 104 participants, most were ≥50 years of age, female, and high-school educated; 45% were African American, 43% Caucasian, and 37% married. Oral conditions frequencies were: salivary hypofunction (98%), mucosal erythema (50%), ulceration (20%), fungal infection (36%), and other oral problems (46%). Xerostomia, taste change, and orofacial pain all had significant functional impact; p<.001, p=.042 and p<.001, respectively. Orofacial pain also had a significant social impact (p<.001). Patients with oral ulcerations had significantly more orofacial pain with a social impact than patients without ulcers (p=.003). Erythema was significantly associated with fungal infection and with mucosal ulceration (p<.001). Conclusions Oral conditions significantly affect functional and social activities in terminally-ill cancer patients. Identification and management of oral conditions in these patients should therefore be an important clinical consideration. PMID:24232310

  1. Treatment targeted at underlying disease versus palliative care in terminally ill patients: a systematic review

    PubMed Central

    Reljic, Tea; Kumar, Ambuj; Klocksieben, Farina A; Djulbegovic, Benjamin

    2017-01-01

    Objective To assess the efficacy of active treatment targeted at underlying disease (TTD)/potentially curative treatments versus palliative care (PC) in improving overall survival (OS) in terminally ill patients. Design We performed a systematic review and meta-analysis of randomised controlled trials (RCT). Methodological quality of included RCTs was assessed using the Cochrane risk of bias tool. Data sources Medline and Cochrane databases were searched, with no language restriction, from inception to 19 October 2016. Eligibility criteria for selecting studies Any RCT assessing the efficacy of any active TTD versus PC in adult patients with terminal illness with a prognosis of <6-month survival were eligible for inclusion. Results Initial search identified 8252 citations of which 10 RCTs (15 comparisons, 1549 patients) met inclusion criteria. All RCTs included patients with cancer. OS was reported in 7 RCTs (8 comparisons, 1158 patients). The pooled results showed no statistically significant difference in OS between TTD and PC (HR (95% CI) 0.85 (0.71 to 1.02)). The heterogeneity between pooled studies was high (I2=62.1%). Overall rates of adverse events were higher in the TTD arm. Conclusions Our systematic review of available RCTs in patients with terminal illness due to cancer shows that TTD compared with PC did not demonstrably impact OS and is associated with increased toxicity. The results provide assurance to physicians, patients and family that the patients' survival will not be compromised by referral to hospice with focus on PC. PMID:28062473

  2. Actions of Acute and Chronic Ethanol on Presynaptic Terminals

    PubMed Central

    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

    2014-01-01

    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

  3. Uncompensated consequences of workplace injuries and illness: long-term disability and early termination.

    PubMed

    Park, Robert M; Bhattacharya, Anasua

    2013-02-01

    Costs related to early retirement, termination, or long-term disability could fall outside workers' compensation (WC). Statistical models examined early retirement, long-term disability status, or early termination related to WC claims. The WC-associated early-termination rate ratio was 1.20 (95% CI=1.14-1.28) for hourly nonunion employees, 1.05 (95% CI=0.97-1.13) for hourly union employees, and 3.43 (95% CI=3.11-3.79) for salaried nonunion employees. In the manufacturing-durable sector the WC-associated rate ratio was 1.58 (95% CI=1.42-1.76) for hourly nonunion employees and 1.23 (95% CI=1.10-1.38) for union hourly employees. In contrast, in transportation-utilities-communications, the rate ratio was 0.52 (95% CI=0.46-0.59) for hourly nonunion and 1.22 (95% CI=1.08-1.38) for union hourly employees. Uncompensated costs of workplace injuries and illnesses may result from adverse events previously compensated by WC. In some workplaces reduced termination rates with prior WC suggests added costs to employers. Conditions leading to WC claims have cost implications related to early - or delayed - removal from the workforce. Additional costs from work-related injury or illness that are not covered by workers compensation may result from the effect of continuing impairment on the subsequent early termination (or prolonging) of employment. These costs would accrue to both employers and employees and are not generally included in global estimates of the burden of workplace injuries and illnesses. Published by Elsevier Ltd.

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

    PubMed

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

    2017-08-01

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

  5. 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

  6. Hypnosis and existential psychotherapy with end-stage terminally ill patients.

    PubMed

    Iglesias, Alex

    2004-01-01

    Existential Psychological Theory was employed as a conceptual and theoretical foundation for the use of hypnotically facilitated therapy in the management of intractable pain, nausea, and vomiting in 3 end-stage, terminally ill cancer patients. The existential principles of death anxiety, existential isolation, and existential meaninglessness were addressed with a combination of classic and Ericksonian techniques. The intractable nature of the presenting physical symptoms was conceptualized as a possible manifestation of the impact of the terminal prognosis. Direct hypnotic suggestions for the management of pain, nausea and vomiting were avoided. It was hypothesized that, as the existential conflicts associated with the patients' terminal status resolved, the physiological symptoms would become responsive to medication. After 6 sessions grounded in the principles of Existential Psychotherapy, the intractable status of the physical symptomatology remitted, and the patients responded to medical management. This paper addresses the usefulness of Existential Psychotherapy in hypnotic interventions for mediating somatic and psychosomatic symptomatology.

  7. 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

  8. Trust, Health Care Relationships, and Chronic Illness: A Theoretical Coalescence.

    PubMed

    Robinson, Carole A

    2016-01-01

    Trust in health care relationships is a key ingredient of effective, high-quality care. Although the indirect influence of trust on health outcomes has long been recognized, recent research has shown that trust has a direct effect on outcomes of care. Trust is important. However, the research on trust is disparate, organized around differing definitions, and primarily focused on patients' trust in physicians. Morse's method of theoretical coalescence was used to further develop and elaborate a grounded theory of the evolution of trust in health care relationships, in the context of chronic illness. This middle-range theory offers a clear conceptual framework for organizing and relating disparate studies, explaining the findings of different studies at a higher conceptual level, and identifying gaps in research and understanding. In addition, the grounded theory is relevant to practice.

  9. Group visits for chronic illness management: implementation challenges and recommendations.

    PubMed

    Jones, Katherine R; Kaewluang, Napatsawan; Lekhak, Nirmala

    2014-01-01

    The group visit approach to improve chronic illness self-management appears promising in terms of selected outcomes, but little information is available about best ways to organize and implement group visits. This literature review of 84 articles identified group visit implementation challenges, including lack of a group visit billing code, inadequate administrative support and resources, difficult participant recruitment and retention, and logistical issues such as space and scheduling. Recommendations for future implementation initiatives were also abstracted from the literature. Patients and providers can benefit from well-planned and well-conducted group visits. These benefits include greater patient and provider satisfaction, reduced overall utilization, improved clinical outcomes, and greater provider efficiency and productivity.

  10. Sociodrama in the rehabilitation of chronic mentally ill patients.

    PubMed

    Hickling, F W

    1989-04-01

    Sociodrama, a synthesis of group psychotherapy and theatrical presentation, was used from 1978 to 1981 to promote rehabilitation of chronic mentally ill patients at Bellevue Mental Hospital in Jamaica. Staff and patients collectively analyzed their recollections of the hospital's history, then wrote and staged dramatic productions based on the insights derived from those analyses. Changes in the major themes that emerged from the process reflected improvement in therapeutic attitudes and practices and in patient-staff communication over the four-year period. Patients who participated in the sociodramas had greater decreases in medication dosage and psychosocial disability scores and higher rates of improvement and discharge than a matched group of patients who did not participate.

  11. Successful treatment of Wernicke encephalopathy in terminally ill cancer patients: report of 3 cases and review of the literature.

    PubMed

    Onishi, Hideki; Kawanishi, Chiaki; Onose, Masanari; Yamada, Tomoki; Saito, Hideyuki; Yoshida, Akira; Noda, Kazumasa

    2004-08-01

    Although Wernicke encephalopathy has been reported in the oncological literature, only one terminally ill cancer patient with Wernicke encephalopathy has been reported. Wernicke encephalopathy, a potentially reversible condition, may be unrecognized in terminally ill cancer patients. In this communication, we report three terminally ill cancer patients who developed Wernicke encephalopathy. Early recognition and subsequent treatment resulted in successful palliation of delirium. Two of the three patients did not show the classical triad of Wernicke encephalopathy. Common clinical symptoms were delirium and poor nutritional status. Intravenous thiamine administration dramatically improved the symptoms of delirium in all three patients. In terminally ill cancer patients, clinicians must remain aware of the possibility of Wernicke encephalopathy when patients with a poor nutritional status present with unexplained delirium. Early intervention may correct the symptoms and prevent irreversible brain damage and the quality of life for the patient may improve.

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

    PubMed

    De Rosa, Silvia; Samoni, Sara; Villa, Gianluca; Ronco, Claudio

    2017-01-01

    Patients with chronic kidney disease (CKD) are at high risk for developing critical illness and for admission to intensive care units (ICU). 'Critically ill CKD patients' frequently develop an acute worsening of renal function (i.e. acute-on-chronic, AoC) that contributes to long-term kidney dysfunction, potentially leading to end-stage kidney disease (ESKD). An integrated multidisciplinary effort is thus necessary to adequately manage the multi-organ damage of those kidney patients and contemporaneously reduce the progression of kidney dysfunction when they are critically ill. The aim of this review is to describe (1) the pathophysiological mechanisms underlying the development of AoC kidney dysfunction and its role in the progression toward ESKD; (2) the most common clinical presentations of critical illness among CKD/ESKD patients; and (3) the continuum of care for CKD/ESKD patients from maintenance hemodialysis/peritoneal dialysis to acute renal replacement therapy performed in ICU and, vice-versa, for AoC patients who develop ESKD. © 2017 S. Karger AG, Basel.

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

    PubMed

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

    2014-05-01

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

  14. "Stuck in the ICU": Caring for Children With Chronic Critical Illness.

    PubMed

    Henderson, Carrie M; Williams, Erin P; Shapiro, Miriam C; Hahn, Emily; Wright-Sexton, Laura; Hutton, Nancy; Boss, Renee D

    2017-09-15

    Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness. Semi-structured interviews. Interviews were transcribed and analyzed for themes. Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA). Fifty-one stakeholders including: 1) interdisciplinary providers (inpatient, outpatient, home care, foster care) with extensive chronic critical illness experience; or 2) parents of children with chronic critical illness. Telephone or in-person interviews. Stakeholders identified several key issues and several themes emerged after qualitative analysis. Issues around chronic critical illness patient factors noted that patients are often relocated to the ICU because of their medical needs. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that outstrip ICU capabilities. Family factors can affect care as prolonged ICU experience leads some to disengage from decision-making. Clinician factors noted that parents of children with chronic critical illness are often experts about their child's disease, shifting the typical ICU clinician-parent relationship. Comprehensive care for children with chronic critical illness can become secondary to needs of acutely ill patients. Lastly, with regard to system factors, stakeholders agreed that achieving consistent ICU care goals is difficult for chronic critical illness patients. ICU care is poorly adapted to pediatric chronic critical illness. Patient, family, clinician, and system factors highlight opportunities for targeted interventions toward improvement in care.

  15. The effect of music therapy on anxiety in patients who are terminally ill.

    PubMed

    Horne-Thompson, Anne; Grocke, Denise

    2008-05-01

    The literature supporting the use of music therapy in palliative care is growing. However, the number of quantitative research studies investigating the use of music therapy in palliative care, and specifically anxiety, is limited. The aim of this research project was to examine the effectiveness of a single music therapy session in reducing anxiety for terminally ill patients. A randomized-controlled design was implemented and the following hypotheses tested. There will be a significant difference between the experimental and control groups on anxiety levels as demonstrated by the anxiety measurement of the Edmonton Symptom Assessment System (ESAS), and heart rate. The experimental group received a single music therapy intervention and the control group received a volunteer visit. Twenty-five participants with end-stage terminal disease receiving inpatient hospice services were recruited. The first hypothesis was supported. Results demonstrated a significant reduction in anxiety for the experimental group on the anxiety measurement of the ESAS (p = 0.005). A post hoc analysis found significant reductions in other measurements on the ESAS in the experimental group, specifically pain (p = 0.019), tiredness (p = 0.024) and drowsiness (p = 0.018). The second hypothesis was not supported. The study supports the use of music therapy to manage anxiety in terminally ill patients. Further studies are required to examine the effect of music therapy over a longer time period, as well as addressing other symptom issues.

  16. 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…

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

    ERIC Educational Resources Information Center

    Kilpatrick, Allie C.; Kilpatrick, Ebb G.

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

  18. 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…

  19. 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…

  20. Associations between perceived chronic care quality, perceived patient centeredness, and illness representations among persons with diabetes.

    PubMed

    Thomas, Joseph; Iyer, Neeraj N; Collins, William B

    2014-01-01

    Patient beliefs about their illness can motivate behaviors consistent with good disease management. Perceived high-quality chronic care would be expected to increase likelihood of having such beliefs. Associations between perceived quality of chronic care and illness representations, and associations between patient centeredness and illness representations were assessed among persons with diabetes. A mail survey of diabetic patients visiting a multispecialty physician network serving urban and suburban populations in a large midwestern city was conducted. The Patient Assessment of Chronic Illness Care-5A questionnaire was used to assess perceived chronic care quality and patient centeredness. The Brief Illness Perception Questionnaire was used to assess illness representations. Of 500 mailed surveys, 89 completed surveys were returned. The sample consisted mostly of retirees (61%), Whites (81%), and women (60%). Higher perceived chronic care quality was associated with better disease understanding of diabetes (0.24, p = .05). Patients reporting higher patient centeredness (or lower patient-centeredness scores) indicated better disease understanding (-0.26, p = .04) and those reporting higher patient centeredness (or lower patient-centeredness scores) perceived less impact of illness (0.29, p = .02). Chronic care quality as defined in the Chronic Care Model and consistency of chronic care with patient expectations (patient centeredness) was associated with illness representations favorable for good self-care management.

  1. 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…

  2. Public Policies Affecting Chronically Ill Children and Their Families. Summary of Findings and Recommendations.

    ERIC Educational Resources Information Center

    Hobbs, Nicholas; And Others

    The complex special needs of families with chronically ill children will be best met through the development of regionalized systems of care. A national program is proposed in the context of a generic definition of chronic childhood illness, emphasizing coordinated regional efforts which provide services as close to a child's home as possible. The…

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

    ERIC Educational Resources Information Center

    Chen, Cliff Yung-Chi

    2017-01-01

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

  4. 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…

  5. 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

  6. 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

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

    PubMed

    Lehoux, Pascale

    2008-06-01

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

  8. 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

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

    PubMed

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

    2014-06-01

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

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

    PubMed

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

    2015-06-01

    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.

  11. Othering the Chronically Ill: A Discourse Analysis of New Zealand Health Policy Documents.

    PubMed

    Walton, Jo Ann; Lazzaro-Salazar, Mariana

    2016-01-01

    It is widely recognized that chronic illnesses pose significant challenges for health care systems around the world. In response, most governments have set health policies in order to manage (or better, reduce) demand and improve the health of their populations. A discourse analysis of four policy documents that shape these strategies in New Zealand reveals that the policies construct the chronically ill as "others," that is, as deviant or different from the "normal" population. The discourse further serves to blame the chronically ill both for being sick, and for placing a serious financial burden on society. We identify problems that arise from this discourse. They relate to (a) the fact that chronic illnesses are so prevalent, (b) the fallacy of categorizing all chronic illnesses as the same,

  12. The Relationship between Dignity Status and Quality of Life in Iranian Terminally Ill Patients with Cancer

    PubMed Central

    Hosseini, Abbas; Rezaei, Masoud; Bahrami, Masoud; Abbasi, Mohammad; Hariri, Hesammodin

    2017-01-01

    Background: Palliative care is an approach that has been used to care for terminally ill patients. The current study was performed to assess the association between the status of patient dignity and quality of life (QOL) in Iranian terminally ill patients with cancer. Materials and Methods: This descriptive correlational study was conducted on 210 end-stage cancer patients (102 men and 108 women) who were referred to Seyed Al-Shohada Hospital, Isfahan, Iran, in 2015. To assess dignity status, we used the Patient Dignity Inventory. The Persian version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire was used for QOL assessment. Results: There was a significant negative association between total dignity status and QOL scales. In addition, significant negative relationship was observed between dignity-related domains (loss of worth sense: r = −0.50, P < 0.001; anxiety and uncertainty: r = −0.51, P < 0.001; symptom distress: r = −0.62, P < 0.001; and loss of autonomy: r = −0.61, P < 0.001) and functional scale and some subscales of the QOL scale. In contrast, a significant positive relationship was found between dignity-related domains, and total symptom scale and fatigue. No significant relationship was observed between different items of dignity and global health status/QOL scale. Conclusions: High dignity status in terminally ill patients was associated with higher QOL in terms of functional intactness and lower symptom distress. Further studies are necessary to shed light to our findings. PMID:28706540

  13. Spiritual Well-being May Reduce the Negative Impacts of Cancer Symptoms on the Quality of Life and the Desire for Hastened Death in Terminally Ill Cancer Patients.

    PubMed

    Wang, Yin-Chih; Lin, Chia-Chin

    2016-01-01

    Spirituality is a central component of the well-being of terminally ill cancer patients. The aim of this study was to examine the mediating or moderating role of spiritual well-being in reducing the impact of cancer-related symptoms on quality of life and the desire for hastened death in terminally ill cancer patients. Eighty-five terminally ill cancer patients were assessed using the Taiwanese version of the M. D. Anderson Symptom Inventory, the Functional Assessment of Cancer Therapy-General, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being, the Beck Hopelessness Scale, and the Schedule of Attitudes Toward Hastened Death. Spiritual well-being was significantly negatively correlated with symptom severity (r = -0.46, P < .01). Symptom severity negatively correlated with quality of life (r = -0.54) and positively correlated with hopelessness (r = 0.51, P < .01) and the desire for hastened death (r = 0.61, P < .01). Spiritual well-being was a partial mediator and moderator between symptom severity and quality of life. Spiritual well-being was a partial mediator between symptom severity and the desire for hastened death. The meaning subscale of spiritual well-being was a more significant predictor of the desire for hastened death and quality of life than the faith subscale was. Spiritual well-being may reduce the negative impacts of cancer on quality of life and the desire for hastened death. Appropriate spiritual care may reduce the negative impact of severe cancer symptoms on quality of life and the desire for hastened death in terminally ill cancer patients.

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

    PubMed

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

    2007-09-01

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

  15. 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

  16. The contribution of chronic illness to acceptance of death in hospitalized patients.

    PubMed

    Nichols, Joyce; Riegel, Barbara

    2002-02-01

    This pilot study explored acceptance of death in the chronically ill. It was hypothesized that chronic illness would be a positive predictor of premature acceptance of death. Acceptance of death, if premature, may lead to untimely acquiescence to death, making people less likely to seek medical care and practice preventive health behaviors. A correlational design was used to explore the relationship between chronic illness and acceptance of death, controlling for age. Data were collected on death acceptance using the revised version of the Life Attitude Profile. Number of chronic illnesses was obtained from self-report and a review of the medical record in a sample of 76 hospitalized individuals. The number of chronic illnesses was significantly and positively associated with death acceptance, but age was not. The model explained only 5.2% of the variance in death acceptance, however. Chronic illness is clearly only one of many factors stimulating individuals to ponder death earlier than expected. Nurses need to be alert to the possibility that individuals with multiple chronic illnesses may be prematurely acquiescing to death. If acquiescence causes failure to participate in care, it could potentially exacerbate chronic conditions unnecessarily.

  17. Resetting the transcription factor network reverses terminal chronic hepatic failure

    PubMed Central

    Nishikawa, Taichiro; Bell, Aaron; Brooks, Jenna M.; Setoyama, Kentaro; Melis, Marta; Han, Bing; Fukumitsu, Ken; Handa, Kan; Tian, Jianmin; Kaestner, Klaus H.; Vodovotz, Yoram; Locker, Joseph; Soto-Gutierrez, Alejandro; Fox, Ira J.

    2015-01-01

    The cause of organ failure is enigmatic for many degenerative diseases, including end-stage liver disease. Here, using a CCl4-induced rat model of irreversible and fatal hepatic failure, which also exhibits terminal changes in the extracellular matrix, we demonstrated that chronic injury stably reprograms the critical balance of transcription factors and that diseased and dedifferentiated cells can be returned to normal function by re-expression of critical transcription factors, a process similar to the type of reprogramming that induces somatic cells to become pluripotent or to change their cell lineage. Forced re-expression of the transcription factor HNF4α induced expression of the other hepatocyte-expressed transcription factors; restored functionality in terminally diseased hepatocytes isolated from CCl4-treated rats; and rapidly reversed fatal liver failure in CCl4-treated animals by restoring diseased hepatocytes rather than replacing them with new hepatocytes or stem cells. Together, the results of our study indicate that disruption of the transcription factor network and cellular dedifferentiation likely mediate terminal liver failure and suggest reinstatement of this network has therapeutic potential for correcting organ failure without cell replacement. PMID:25774505

  18. 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

  19. Towards a classification model to identify hospice candidates in terminally ill patients.

    PubMed

    Gil-Herrera, Eleazar; Yalcin, Ali; Tsalatsanis, Athanasios; Barnes, Laura E; Djulbegovic, Benjamin

    2012-01-01

    This paper presents a Rough Set Theory (RST) based classification model to identify hospice candidates within a group of terminally ill patients. Hospice care considerations are particularly valuable for terminally ill patients since they enable patients and their families to initiate end-of-life discussions and choose the most desired management strategy for the remainder of their lives. Unlike traditional data mining methodologies, our approach seeks to identify subgroups of patients possessing common characteristics that distinguish them from other subgroups in the dataset. Thus, heterogeneity in the data set is captured before the classification model is built. Object related reducts are used to obtain the minimum set of attributes that describe each subgroup existing in the dataset. As a result, a collection of decision rules is derived for classifying new patients based on the subgroup to which they belong. Results show improvements in the classification accuracy compared to a traditional RST methodology, in which patient diversity is not considered. We envision our work as a part of a comprehensive decision support system designed to facilitate end-of-life care decisions. Retrospective data from 9105 patients is used to demonstrate the design and implementation details of the classification model.

  20. [A study of 31 terminally ill cancer patients who received pure oxycodone injections at home].

    PubMed

    Sasaki, Tsubasa; Kawagoe, Izumi

    2014-11-01

    Since the launch of pure oxycodone injections in May 2012, it has been possible to use oxycodone without opioid rotation. Although an extremely important step showing progress, very few studies regarding the use of pure oxycodone injections have been performed. In this study, we evaluated the safety and efficacy of pure oxycodone injections in 31 terminally ill cancer patients receiving home care. The difficulty in oral oxycodone intake was the main reason for changing to pure oxycodone injections. The mean administered period of subcutaneous pure oxycodone was 5.6 ± 6.7 days. One out of 5 patients receiving pure oxycodone injections complained of worsening sleepiness. However, other symptoms improved. In addition, in cases wherein pure oxycodone injection was the initiating opioid, 1 out of 6 patients showed no improvement of respiratory discomfort, while other symptoms improved. It was difficult to evaluate more patients because of the short period for administration. Although 5 patients experienced skin problems, they were successfully managed by changing the injection site. Of these 5 patients, 2 patients had sensitive skin, with a previous history of alcohol rash. In conclusion, our study suggests that pure oxycodone injections are beneficial over oral oxycodone treatment for terminally ill cancer patients. However, further evaluation of skin problems associated with pure oxycodone injections is required by performing larger studies.

  1. An exploratory factor analysis of existential suffering in Japanese terminally ill cancer patients.

    PubMed

    Morita, T; Tsunoda, J; Inoue, S; Chihara, S

    2000-01-01

    To determine an underlying factorial structure of existential distress in Japanese terminally ill cancer patients, a principal components analysis was performed on 162 Japanese hospice inpatients. Existential distress commonly identified was dependency (39%), meaninglessness in present life (37%), hopelessness (37%), burden on others (34%), loss of social role functioning (29%), and feeling emotionally irrelevant (28%). By a factor analysis, three primary components accounted for 66% of the variance. 'Dependency' and 'loss of social role functioning' loaded highly on the first factor, which was interpreted as 'loss of autonomy'. 'Burden on others' and 'feeling emotionally irrelevant' loaded highly on the second component interpreted as 'lowered self-esteem', while 'hopelessness' loaded highly on the third factor. On the other hand, 'meaninglessness in present life' loaded equally on all three components, and was significantly associated with other distress. In conclusion, existential suffering of Japanese terminally ill cancer patients has three principal components: loss of autonomy, lowered self-esteem, and hopelessness. It is also suggested that meaninglessness in present life would be an underlying theme in patients' spirituality.

  2. 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

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

    PubMed

    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.

  4. Older Families and Chronic Disabling Illness: Predicting Better Adaptation.

    ERIC Educational Resources Information Center

    Young, Rosalie F.

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

  5. Employment barriers among welfare recipients and applicants with chronically ill children.

    PubMed

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

    2002-09-01

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

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

    PubMed

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

    2011-08-01

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

  7. 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

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

    PubMed

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

    2014-10-01

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

  9. 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…

  10. 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…

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

    PubMed Central

    Theeke, Laurie A.; Mallow, Jennifer

    2015-01-01

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

  12. Loneliness and quality of life in chronically ill rural older adults.

    PubMed

    Theeke, Laurie A; Mallow, Jennifer

    2013-09-01

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

  13. Characteristics of Oral Problems and Effects of Oral Care in Terminally Ill Patients With Cancer.

    PubMed

    Nakajima, Nobuhisa

    2017-06-01

    Various distresses appear in the terminal stage of cancer. Oral problems including dry mouth, stomatitis and candidiasis are one of the important problems which should be resolved. The purpose of this study was to investigate oral problems in this stage and improvement of dry mouth by oral care. The study subjects were consecutive terminally ill cancer patients admitted over the past 2 years. Patients were divided based on the status of oral food intake into good oral food intake group (≥30%) and poor oral food intake group. The following 3 items were retrospectively investigated: 1) The incidences of these oral problems, 2) Severity of dry mouth and complication with other oral problems, 3) Improvement of dry mouth using standard oral care by nursing staff and specialist oral care including dentists as needed. There were 115 and 158 patients in good and poor oral intake groups, respectively. 1) The incidences of dry mouth, stomatitis, and candidiasis were significantly higher in poor oral intake group ( p < 0.001). 2) Severe cases of dry mouth (Grade-2&3) were noted in 20.0% and 64.8% in good and poor oral intake groups, respectively ( p < 0.0001). Candidiasis complication rate was significantly higher in poor oral intake group ( p = 0.0002). 3) The rate of dry mouth improvement by oral care was 100% in Grade-1, 86% in Grade-2 and 81% in Grade-3. Oral problems occur in many of terminally ill cancer patients. Accurate diagnosis of oral problems and corresponding appropriate interventions are important for improving quality of end-of-life care.

  14. Should we involve terminally ill patients in teaching medical students? A systematic review of patient's views.

    PubMed

    Harris, Dylan Gareth; Coles, Bernadette; Willoughby, Hannah May

    2015-12-01

    To review available published research that has explored how terminally ill patients feel about being involved in undergraduate medical teaching. A systematic review using narrative synthesis. Qualitative or quantitative publications were included if they directly explored the views of adult patients, with a terminal diagnosis, about their involvement in undergraduate clinical teaching. Seven publications met the inclusion criteria: one case report, one qualitative study and five questionnaire-based studies. A total of 269 patients were included across all studies. Patients were predominantly studied in a hospice or hospice day care setting. Both patients who had, and who had not, previously been involved in student teaching were captured by the included publications. In general, the views of patients were highly positive: overall 85%-100% were in favour of involvement in teaching. There were also some negative aspects, such as: concerns about being physically examined by a student; finding involvement in teaching tiring; feeling unable to decline consent to participate. An assumption that clinical undergraduate medical teaching involving terminally ill patients may be too burdensome is not reflected overall in studies that have sought the views of the patients themselves. Understanding the patient's perspective provides a number of practical points in relation to how clinical teaching should be adapted in this patient group; for example, using smaller student group sizes; direct supervision if physical examination performed; short encounters with multiple patients rather than a longer encounter with one patient; adequate informed consent beforehand and without the students automatically being present. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  15. Coping with Chronic Illness: A Study of Illness Controllability and the Influence of Coping Strategies on Psychological Adjustment.

    ERIC Educational Resources Information Center

    Felton, Barbara J.; Revenson, Tracey A.

    1984-01-01

    Evaluated the emotional consequences of using wish-fulfilling fantasy (palliative) and information-seeking (instrumental) coping strategies among patients (N=151) faced with chronic illness. Results showed information-seeking to have positive effects on adjustment and wish-fulfilling fantasy to have deleterious consequences. (LLL)

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

    PubMed

    Lee, Andrea M; Poole, Gary

    2005-03-01

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

  17. 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. © The Author(s) 2016.

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

    PubMed

    Pinquart, M

    2013-03-01

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

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

    PubMed

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

    2017-10-01

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

  20. Ethical dilemma: offering short-term extracorporeal membrane oxygenation support for terminally ill children who are not candidates for long-term mechanical circulatory support or heart transplantation.

    PubMed

    Shankar, Venkat; Costello, John P; Peer, Syed M; Klugman, Darren; Nath, Dilip S

    2014-04-01

    The use of extracorporeal membrane oxygenation (ECMO) in terminally ill pediatric patients who are not candidates for long-term mechanical circulatory support or heart transplantation requires careful deliberation. We present the case of a 16-year-old female with a relapse of acute lymphoid leukemia and acute-on-chronic cardiomyopathy who received short-term ECMO therapy. In addition, we highlight several ethical considerations that were crucial to this patient's family-centered care and demonstrate that this therapy can be accomplished in a manner that respects patient autonomy and family wishes.

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

    PubMed

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

    2015-06-01

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

  2. Favored subjects and psychosocial needs in music therapy in terminally ill cancer patients: a content analysis.

    PubMed

    Preissler, Pia; Kordovan, Sarah; Ullrich, Anneke; Bokemeyer, Carsten; Oechsle, Karin

    2016-05-12

    Research has shown positive effects of music therapy on the physical and mental well-being of terminally ill patients. This study aimed to identify favored subjects and psychosocial needs of terminally ill cancer patients during music therapy and associated factors. Forty-one Patients receiving specialized inpatient palliative care prospectively performed a music therapy intervention consisting of at least two sessions (total number of sessions: 166; per patient average: 4, range, 2-10). Applied music therapy methods and content were not pre-determined. Therapeutic subjects and psychosocial needs addressed in music therapy sessions were identified from prospective semi-structured "field notes" using qualitative content analysis. Patient- and treatment-related characteristics as well as factors related to music and music therapy were assessed by questionnaire or retrieved from medical records. Seven main categories of subjects were identified: "condition, treatment, further care", "coping with palliative situation", "emotions and feelings", "music and music therapy", "biography", "social environment", and "death, dying, and spiritual topics". Patients addressed an average of 4.7 different subjects (range, 1-7). Some subjects were associated with gender (p = .022) and prior impact of music in patients' life (p = .012). The number of subjects per session was lower when receptive music therapy methods were used (p = .040). Psychosocial needs were categorized into nine main dimensions: "relaxing and finding comfort", "communication and dialogue", "coping and activation of internal resources", "activity and vitality", "finding expression", "sense of self and reflection", "finding emotional response", "defocusing and diversion", and "structure and hold". Patients expressed an average of 4.9 psychosocial needs (range, 1-8). Needs were associated with age, parallel art therapy (p = .010), role of music in patient's life (p = .021), and the applied music

  3. Ecological momentary assessment for rehabilitation of chronic illness and disability.

    PubMed

    McKeon, Ashlee; McCue, Michael; Skidmore, Elizabeth; Schein, Michelle; Kulzer, Jamie

    2017-02-07

    The main objectives of this manuscript were to provide a theoretical perspective on naturalistic delivery in rehabilitation based upon a literature review and establish a rationale for using ecological momentary assessment (EMA) for naturalistic assessment for chronic illness and disability (CID) in rehabilitation. Existing literature on EMA use across CID cohorts was gathered and analyzed to form a theoretical overview of implementation of this method in research. This review summarizes study results and provides a comprehensive literature table for greater analysis. EMA has been shown to optimize clinician time and reduce costs, reach greater numbers of people with disability-related needs, and reduce the need for retrospective recall through the collection of more objective data. Mixed method approaches were most commonly seen in the literature, and sampling schedules and the outcomes assessed varied widely. EMA is emerging as a novel modality of assessment in rehabilitation. Scientists and clinicians should consider incorporating this assessment approach as a rehabilitation tool that may more accurately assess the complex and dynamic nature of disability over the long-term through an objective and ecologically-valid data source. Implications for rehabilitation Ecological momentary assessment (EMA) has been underutilized in the rehabilitation field and should be considered by researchers and clinicians as a novel assessment method for capturing rich, ecologically-valid data. EMA methods provide a greater capability to assess complex or difficult to measure outcomes of interest when compared with more traditional approaches conducted during finite clinic hours due to data collection occurring, with or without any input from the user, through wearable technology, and without a needed clinician presence. EMA data can be integrated with other data sources (e.g., self-report or clinician observation) to assess a more comprehensive picture of outcomes of interest

  4. 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

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

    PubMed

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

    2012-03-01

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

  6. Predictors of Death in the Hospital for Patients with Chronic Serious Illness.

    PubMed

    Hicks, Katy; Downey, Lois; Engelberg, Ruth A; Fausto, James A; Starks, Helene; Dunlap, Ben; Sibley, James; Lober, William; Khandelwal, Nita; Loggers, Elizabeth T; Curtis, J Randall

    2017-09-19

    Most people prefer to die at home, yet most do not. Understanding factors associated with terminal hospitalization may inform interventions to improve care. Among patients with chronic illness receiving care in a multihospital healthcare system, we identified the following: (1) predictors of death in any hospital; (2) predictors of death in a hospital outside the system; and (3) trends from 2010 to 2015. Retrospective cohort using death certificates and electronic health records. Settings/Subjects: Decedents with one of nine chronic illnesses. Among 20,486 decedents, those most likely to die in a hospital were younger (odds ratio [OR] 0.977, confidence interval [CI] 0.974-0.980), with more comorbidities (OR 1.188, CI 1.079-1.308), or more outpatient providers (OR 1.031, CI 1.015-1.047); those with cancer or dementia, or more outpatient visits were less likely to die in hospital. Among hospital deaths, patients more likely to die in an outside hospital had lower education (OR 0.952, CI 0.923-0.981), cancer (OR 1.388, CI 1.198-1.608), diabetes (OR 1.507, CI 1.262-1.799), fewer comorbidities (OR 0.745, CI 0.644-0.862), or fewer hospitalizations within the system during the prior year (OR 0.900, CI 0.864-0.938). Deaths in hospital did not change from 2010 to 2015, but the proportion of hospital deaths outside the system increased (p < 0.022). Patients dying in the hospital who are more likely to die in an outside hospital, and therefore at greater risk for inaccessibility of advance care planning, were more likely to be less well-educated and have cancer or diabetes, fewer comorbidities, and fewer hospitalizations. These findings may help target interventions to improve end-of-life care.

  7. The attitudes of Greek physicians and lay people on euthanasia and physician-assisted suicide in terminally ill cancer patients.

    PubMed

    Parpa, Efi; Mystakidou, Kyriaki; Tsilika, Eleni; Sakkas, Pavlos; Patiraki, Elisabeth; Pistevou-Gombaki, Kyriaki; Galanos, Antonis; Vlahos, Lambros

    2006-01-01

    The purpose of this article is to explore the attitudes of lay people and physicians regarding euthanasia and physician-assisted suicide in terminally ill cancer patients in Greece. The sample consisted of 141 physicians and 173 lay people. A survey questionnaire was used concerning issues such as euthanasia, physician-assisted suicide, and so forth. Many physicians (42.6%) and lay people (25.4%, P = .002) reported that in the case of a cardiac and/or respiratory arrest, there would not be an effort to revive a terminally ill cancer patient. Only 8.1% of lay people and 2.1% of physicians agreed on physician-assisted suicide (P = .023). Many of the respondents, especially physicians, supported sedation but not euthanasia or physician-assisted suicide. However, many of the respondents would prefer the legalization of a terminally ill patient's hastened death.

  8. Defining Pediatric Chronic Critical Illness for Clinical Care, Research, and Policy.

    PubMed

    Shapiro, Miriam C; Henderson, Carrie M; Hutton, Nancy; Boss, Renee D

    2017-04-01

    Chronically critically ill pediatric patients represent an emerging population in NICUs and PICUs. Chronic critical illness has been recognized and defined in the adult population, but the same attention has not been systematically applied to pediatrics. This article reviews what is currently known about pediatric chronic critical illness, highlighting the unique aspects of chronic critical illness in infants and children, including specific considerations of prognosis, outcomes, and decision-making. We propose a definition that incorporates NICU versus PICU stays, recurrent ICU admissions, dependence on life-sustaining technology, multiorgan dysfunction, underlying medical complexity, and the developmental implications of congenital versus acquired conditions. We propose a research agenda, highlighting existing knowledge gaps and targeting areas of improvement in clinical care, research, and policy.

  9. 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)

  10. 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)

  11. Parents' Experiences of the Care Provided by Medical Services Whilst Looking After a Chronically Ill Child.

    ERIC Educational Resources Information Center

    Bradford, Roger

    1990-01-01

    Surveyed parents of 58 chronically ill children in a London hospital regarding their satisfaction with hospital services. Discusses factors associated with parental dissatisfaction at the times of preadmission, admission, and discharge. (BG)

  12. 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 or...

  13. 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: Individuals...

  14. 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.

  15. Terminally ill African American elders' access to and use of hospice care.

    PubMed

    Noh, Hyunjin; Schroepfer, Tracy A

    2015-05-01

    The underuse of hospice care by terminally ill African American elders suggests they are suffering when hospice care could offer quality end of life care. Guided by the Behavioral Model for Vulnerable Populations, this study sought understanding of structural barriers faced when seeking access to hospice care and reasons for using it when access is possible. Data was collected through interviews with 28 African American hospice patients. Themes from directed content analysis provide insights into strategies used to overcome access barriers posed by income, health insurance and administrative procedure, as well as the role religion, family, information and health beliefs played in using it. Distributing educational materials and addressing spiritual/religious concerns in choosing hospice care are key in promoting African Americans' use of hospice care.

  16. John Paul Jones: An Overlooked Autopsy Finding that May Explain His Terminal Illness.

    PubMed

    Hamrell, Burt B

    2016-03-01

    A finding in the autopsy of John Paul Jones, the American Revolutionary War naval hero, may explain his terminal illness. During his last 2 years, he had a persistent productive cough and dyspnea. Ten days before death, he developed rapidly progressive dependent edema and ascites. He died in France in 1792. His body, preserved in alcohol in a lead coffin, was, in 1905, removed to the United States. Glomerulonephritis was noted on an autopsy, performed in France, but there was no comment then or since about ventricular wall thickness being the same in both ventricles at 5-6 mm. Hypertrophy and dilatation with biventricular failure followed by tissue shrinkage during 113 years in alcohol could have resulted in these ventricular wall findings. Systemic hypertension and left ventricular failure are consistent with his respiratory symptoms complicated perhaps by pulmonary emboli, right ventricular failure with tricuspid regurgitation, peripheral congestion, and jaundice.

  17. Risk Factors for Anticipatory Grief in Family Members of Terminally Ill Veterans Receiving Palliative Care Services.

    PubMed

    Burke, Laurie A; Clark, Karen A; Ali, Khatidja S; Gibson, Benjamin W; Smigelsky, Melissa A; Neimeyer, Robert A

    2015-01-01

    Anticipatory grief is the process associated with grieving the loss of loved ones in advance of their inevitable death. Because anticipatory grief has been associated with a variety of outcomes, risk factors for this condition deserve closer consideration. Fifty-seven family members of terminally ill, hospice-eligible veterans receiving palliative care services completed measures assessing psychosocial factors and conditions. Elevated anticipatory grief was found in families characterized by relational dependency, lower education, and poor grief-specific support, who also experienced discomfort with closeness and intimacy, neuroticism, spiritual crisis, and an inability to make sense of the loss. Thus, in this sample, anticipatory grief appears to be part of a cluster of factors and associated distress that call for early monitoring and possible intervention.

  18. Attachment style dimensions can affect prolonged grief risk in caregivers of terminally ill patients with cancer.

    PubMed

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

    2015-12-01

    The aim of the present study was to evaluate the predictive role of attachment dimensions on the risk of prolonged grief. Sixty caregivers of 51 terminally ill patients with cancer who had been admitted in a hospice were selected. Caregivers were interviewed using Attachment Scale Questionnaire, Hamilton Depression Rating Scale, Hamilton Anxiety Rating Scale, and Prolonged Grief Disorder 12 (PG-12). The consort caregivers showed higher PG-12 level compared to the sibling caregivers. Anxiety, depression, need for approval, and preoccupation with relationships levels were significantly correlated with PG-12 scores. Female gender, high levels of depression, and preoccupation with relationships significantly predicted higher levels of prolonged grief risk. © The Author(s) 2014.

  19. Euthanasia and the terminally ill: can the civil killing of others be eroded?

    PubMed

    Kelleher, M J; Payne, A; Corcoran, P; Chambers, D

    1998-01-01

    The present paper assesses attitudes towards the ending of life among a sample of 100 terminally ill hospice patients. Such a sample best provides an insight into the demand for euthanasia in this most extreme of circumstances. Of the completed interviews (64), 43 patients were fully aware of the implications of their condition; 35 expressed a definite opinion regarding euthanasia, 22 of whom favored the individual's right to choose the timing of death. Only 6 of these 22 were fully competent at the time of the interview and were not suffering from any depressive disorder. The implications of these results point to the need to consider the prevalence of depression, anxiety, and related disorders among those who seek an end to life. A failure to do so is likely to affect legislation worldwide, and, in turn, civilization itself.

  20. Proposal for Development of EBM-CDSS (Evidence-based Clinical Decision Support System) to Aid Prognostication in Terminally Ill Patients

    DTIC Science & Technology

    2014-10-01

    TITLE: Proposal for Development of EBM-CDSS (Evidence-based Clinical Decision Support System) to Aid Prognostication in Terminally Ill Patients...SUBTITLE Proposal for development of EBM-CDSS (Evidence-based Clinical Decision Support System) to aid prognostication in terminally ill patients 5a...to improve prognostication of the life expectancy of terminally ill patients to improve referral of patients to hospice. In addition, the EBM-CDSS

  1. Does Desire for Hastened Death Change in Terminally Ill Cancer Patients?

    PubMed Central

    Rosenfeld, Barry; Pessin, Hayley; Marziliano, Allison; Jacobson, Coleen; Sorger, Brooke; Abbey, Jennifer; Olden, Megan; Brescia, Robert; Breitbart, William

    2014-01-01

    Understanding why some terminally ill patients may seek a hastened death (a construct referred to as “desire for hastened death” or DHD) is critical to understanding how to optimize quality of life during an individual’s final weeks, months or even years of life. Although a number of predictor variables have emerged in past DHD research, there is a dearth of longitudinal research on how DHD changes over time and what factors might explain such changes. This study examined DHD over time in a sample of terminally ill cancer patients admitted to a palliative care hospital. A random sample of 128 patients who completed the Schedule of Attitudes toward Hastened Death (SAHD) at two time points approximately 2–4 weeks apart participated. Patients were categorized into one of four trajectories based on their SAHD scores at both time points: low (low DHD at T1 and T2), rising (low DHD at T1 and high DHD at T2), falling (high DHD at T1 and low DHD at T2) and high (high DHD at T1 and T2). Among patients who were low at T1, several variables distinguished between those who developed DHD and those who did not: physical symptom distress, depression symptom severity, hopelessness, spiritual well-being, baseline DHD, and a history of mental health treatment. However, these same medical and clinical variables did not distinguish between the falling and high trajectories. Overall, there appears to be a relatively high frequency of change in DHD, even in the last weeks of life. Interventions designed to target patients who are exhibiting subthreshold DHD and feelings of hopelessness may reduce the occurrence of DHD emerging in this population. PMID:24747154

  2. Does desire for hastened death change in terminally ill cancer patients?

    PubMed

    Rosenfeld, Barry; Pessin, Hayley; Marziliano, Allison; Jacobson, Colleen; Sorger, Brooke; Abbey, Jennifer; Olden, Megan; Brescia, Robert; Breitbart, William

    2014-06-01

    Understanding why some terminally ill patients may seek a hastened death (a construct referred to as "desire for hastened death" or DHD) is critical to understanding how to optimize quality of life during an individual's final weeks, months or even years of life. Although a number of predictor variables have emerged in past DHD research, there is a dearth of longitudinal research on how DHD changes over time and what factors might explain such changes. This study examined DHD over time in a sample of terminally ill cancer patients admitted to a palliative care hospital. A random sample of 128 patients completed the Schedule of Attitudes toward Hastened Death (SAHD) at two time points approximately 2-4 weeks apart participated. Patients were categorized into one of four trajectories based on their SAHD scores at both time points: low (low DHD at T1 and T2), rising (low DHD at T1 and high DHD at T2), falling (high DHD at T1 and low DHD at T2) and high (high DHD at T1 and T2). Among patients who were low at T1, several variables distinguished between those who developed DHD and those who did not: physical symptom distress, depression symptom severity, hopelessness, spiritual well-being, baseline DHD, and a history of mental health treatment. However, these same medical and clinical variables did not distinguish between the falling and high trajectories. Overall, there appears to be a relatively high frequency of change in DHD, even in the last weeks of life. Interventions designed to target patients who are exhibiting subthreshold DHD and feelings of hopelessness may reduce the occurrence of DHD emerging in this population.

  3. Prospective Study on Music Therapy in Terminally Ill Cancer Patients during Specialized Inpatient Palliative Care.

    PubMed

    Kordovan, Sarah; Preissler, Pia; Kamphausen, Anne; Bokemeyer, Carsten; Oechsle, Karin

    2016-04-01

    This study was a prospective evaluation of feasibility, acceptance, and potential beneficial effects of music therapy in terminally ill cancer patients on a specialized palliative care inpatient ward. Intervention had to consist of at least two sessions, but frequency and duration was left to the patients` decision. Different music therapy methods were offered to the patient at the beginning of every session. Patients rated their subjective benefit. Disease-related and sociodemographic factors were considered as potentially influencing factors. A total of 166 music therapy sessions were performed with 41 patients (average, 4; range, 2-10). Average session duration was 41 minutes (range, 20-70). Most favored methods were therapeutic conversation in 84% of sessions; listening to relaxing music, 39%; playing an instrument, 31%; and music-lead imagination, 11%. Receptive music therapy was applied in 45%, active forms in 25%, a combination of both in 7%, and therapeutic conversation only in 23%. Music therapy was rated to be "helpful" in 68%. Positive effects were significantly associated with frequency (p = 0.009) and duration (p = 0.040), living in a partnership (p = 0.017), having children (p = 0.035), psycho-oncologic therapy (p = 0.043), experience with music therapy (p = 0.007), role of music in life (p = 0.035), playing an instrument (p = 0.021), and singing regularly (p = 0.003). Music therapy techniques, especially receptive methods, are feasible and well accepted in terminally ill cancer patients. Therapeutic conversation seems to play an important role. Frequency and duration of music therapy, previous experience with music and music therapy, as well as sociodemographic factors influence positive effects of music therapy.

  4. [Can communication with terminally ill patients be taught? Evaluation of a course model].

    PubMed

    Weber, Martin; Böhler, Eva; Kohler, Elisabeth

    2003-09-15

    Communication with terminally ill patients is a main responsibility of physicians. However, many physicians feel insufficiently prepared for this task. Models of courses resulting in improvements of communicative skills of participants have been published mainly in the Anglo-American literature. This study describes the realization of a 2-day course model based on the experiences of the first three courses of this kind in Rhineland-Palatinate, and analyzes changes of participants' communication behavior. After each seminary, an evaluation form concerning participants' satisfaction with the course was filled in. Furthermore, all course participants received a questionnaire at the beginning and at the end of the course, as well as 3 months afterwards. The participants were asked to assess their own sense of security in seven different communication settings on a visual analog scale, and to specify perceived changes in their communication behavior 3 months after the course. The first three courses were attended by 31 participants. Course evaluation revealed high satisfaction scores with methods as well as with clarity and relevance of the contents. Self-assessment of participants showed a growing sense of security in different communication settings. Important increases could be demonstrated for communicating a diagnosis of cancer with good or less good prognosis, recurrence of cancer or a far progressive cancer disease without curative approach. 3 months after the course, participants described multiple changes indicating increased sensibility and professionalism in communication behavior. The realized communication skills courses resulted in relevant changes in communication behaviour and self-confidence of participants. Communication with terminally ill patients can be taught.

  5. Physicians attitudes toward DNR of terminally ill cancer patients in Taiwan.

    PubMed

    Chao, Co-Shi Chantal

    2002-09-01

    The purpose of this study was to survey physicians attitudes toward DNR of terminally ill cancer patients in Taiwan. A total of 7626 structured questionnaires were sent by mail to physicians who were members of the Taiwan Society of Internal Medicine and the Surgical Association of Taiwan, and 1328 valid responses were received. The response rate was 17.6%. The instrument, a structured questionnaire, was composed of one scenario and six questions. A majority (77.6%) of the physicians under investigation would tell a terminally ill cancer patient or his family about the possibility of DNR and ask them to consider signing a consent form. Over one half of the physicians (58.4%) did not know whether the Medical Law in Taiwan permits natural death, and 96.1% of the subjects felt they would need legal protection for agreeing patient s autonomy to decide DNR. Unfortunately, 41.2% of the respondent admitted that they did not have a formal Informed Consent Form that could be used for DNR. Even of those who had such a form, only 27.4% had clear guidelines given by their institutions. Among 623 physicians whose institutions had an formal Informed Consent Form for DNR, 63.7% agreed that it was reasonably used. Surprisingly, 67.9% of the physicians had used Slow Codes. The findings of this study served as a solid base. The investigator and other colleagues used it to convince legislators to pass a Natural Death Act in Taiwan. Since some legislators disliked the term death and the main promotes were people engaged in hospice palliative care, the new law entitled Hospice Palliative Act was passed on May 23, 2000. The DNR order finally gained its legal base for medical practice. The limitation of this study was the low response rate. However, since the subjects, physicians, had a busy work load, this was still an acceptable response rate.

  6. Aggravation of fatigue by steroid therapy in terminally ill patients with cancer.

    PubMed

    Matsuo, Naoki; Yomiya, Kinomi

    2014-05-01

    Steroids are commonly used for fatigue relief in terminally ill cancer patients. However, steroid-induced adverse effects including depression, myopathy, and hyperglycemia may contribute to fatigue. We report our experiences with aggravation of fatigue with steroid use in three cases. Case 1 was a 65-year-old man with advanced gastric cancer. He was started on betamethasone (2 mg/d) for fatigue, but the fatigue worsened due to steroid-induced depression. Discontinuation of steroids and initiation of an antidepressant ameliorated the fatigue. Case 2 was a 68-year-old man with advanced lung cancer. He complained of fatigue. Betamethasone (1 mg/d) was started and alleviated the fatigue. However, when the betamethasone dose was increased to 2 mg/d, the fatigue, with muscle weakness and myalgia, worsened due to steroid-induced myopathy. We therefore switched from betamethasone (2 mg/d) to prednisolone (10 mg /d). The fatigue resolved and the patient returned to his previous condition. Case 3 was a 73-year-old man with recurrent bile duct cancer. He also had diabetes mellitus. He developed fatigue, anorexia and fever. We started betamethasone (1.5 mg/d) for these symptoms, but the fatigue and anorexia worsened due to steroid-induced hyperglycemia. Blood glucose rose to 532 mg/dL. Therefore, insulin therapy was started, and the dose of betamethasone was reduced to 0.5 mg/d. His glucose level decreased to less than 320 mg/dL and he recovered from the fatigue while achieving moderate oral intake. In conclusion, the possibility of steroid-induced secondary fatigue in terminally ill cancer patients should be taken into consideration.

  7. Educating medical students about the personal meaning of terminal illness using the film, "Wit".

    PubMed

    Ozcakir, Alis; Bilgel, Nazan

    2014-08-01

    Addressing the emotional needs of dying patients is rarely found to have a place in formal medical curriculum and is also a difficult area to teach through classical medical lectures. "Cinemeducation" is a wonderful way to educate health care providers about the magnitude of emotions that arise during those difficult situations. The aims of this study were to test the relevance and usefulness of the movie 'Wit' in teaching medical students about the personal meaning of terminal illness and to assess the impact of this teaching method on students' attitudes toward palliative care. This was an education study using qualitative and quantitative data analysis of 518 first-year medical students in a single medical faculty in Turkey. Students watched the entire film, filled out an evaluation questionnaire, and answered questions about the film. Students also expressed their own feelings and thoughts about palliative care. Overall, 88% rated the film as excellent, very good, or good. According to 54% of the students, the emotions of terminally ill patients were fully portrayed in the film and in a very realistic way. Approximately 61.4% of the students found this film emotional. Most students (80.5%) stated that this film made them think about the emotional and spiritual suffering that dying patients go through and found this learning approach about palliative care more useful than didactic lectures and journal article readings but not more useful than bedside rounds. It was thought that caring for dying patients would be very or fairly personally satisfying for 65.3% of the students. The film 'Wit' gave the students an opportunity to explore their beliefs, values and attitudes in terms of the bio-psycho-social-spiritual aspects of health care and encouraged them to think more about the humanitarian issues of the medical profession.

  8. 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…

  9. 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…

  10. Sense Making Process in Defining Health for People with Chronic Illness and Disabilities.

    ERIC Educational Resources Information Center

    Lee, Youngkhill; McCormick, Bryan P.

    2002-01-01

    Presents a sense-making process in defining health, particularly as related to people with chronic illness and disabilities, reviewing existing concepts of health, examining how people make sense of their disability and illness from an existential perspective, offering two concepts (life story and sense of coherence) relevant to this existential…

  11. 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…

  12. 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…

  13. 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…

  14. 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,…

  15. [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.

  16. The Use of Life Review to Enhance Spiritual Wellbeing in Patients with Terminal Illnesses: An Integrative Review.

    PubMed

    Kwan, Cecilia W M; Ng, Marques S N; Chan, Carmen W H

    2017-07-26

    An integrative review of the current literature on using life review as an intervention to address the spiritual need of patients with terminal illnesses. Palliative care highlights the holistic approach of care including the spiritual aspect. Life review has been used in palliative nursing intending to enhance patients' emotional and spiritual wellbeing, and quality of life. However, there is a lack of publications that provide a structured overview on life review programs and their effectiveness. Integrative review. The Whittmore and Knafl integrative review method was used. Five major online databases were included in our literature search. The keywords used were 'life review' and 'palliative care, terminal care, terminally ill, death & dying, hospice, spiritual wellbeing, spirituality'. Seven primary papers were identified, critically appraised and synthesized in the final review. There are limited clinical studies on life review programs for patients with terminal illness. The research design of these studies is too widely varied for meta-analysis. Here, we identified two major programs of life review as an intervention to address the spiritual wellbeing of patients with terminal illness. However, repeated studies on the effectiveness of these two programs are lacking. The shorter program of life review is more likely to be applicable and effective for terminal patients. Further research in this area is required to provide strong evidence on the effectiveness and applicability of life review in patients receiving palliative care. This review adds weight to the need of a better understanding on the use of life review in addressing the spiritual needs of patients with terminal illness. Such understanding would provide evidence for the use of life review as an alternative approach in palliative care delivery. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

  17. 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.

  18. The Palliative Care Information Act and Access to Palliative Care in Terminally ill Patients: A Retrospective Study

    PubMed Central

    Victoria, Kitty; Patel, Sarita

    2016-01-01

    Background: Studies have shown that over 50% of end-of-life discussions take place for the first time in the hospital and that terminally ill patients often have unrealistic views regarding the possible scope of treatment. The Palliative Care information Act (PCIA) was passed in an attempt to address the lack of access for terminally ill patients to palliative care services. A multi-database systematic review was performed on published studies from 2010 to present, and there were none found measuring the effectiveness of the PCIA. Objectives: We aimed to study the effect of the PCIA on access to palliative care services. Methods: We conducted a retrospective chart review of all terminally ill patients who died at Kingsbrook Jewish Medical Center from January 2010 to August 2013 in relation to passing of the PCIA. Results: Prelaw (prior to the law passing), 12.3% of the terminal patients received palliative care consults, 25% during the transition period (time between passing of law and when it came into effect) and 37.7% postlaw (after coming into effect) (P < 0.001). Conclusions: Legislation can have a significant effect on terminally ill patient's access to palliative care services and can change the culture of a hospital to be more pro-palliative for the appropriate populations. PMID:27803564

  19. A Metasynthesis of Factors Affecting Self-Management of Chronic Illness

    PubMed Central

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

    2015-01-01

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

  20. Experiences of truth disclosure in terminally ill cancer patients in palliative home care.

    PubMed

    Friedrichsen, Maria; Lindholm, Ann; Milberg, Anna

    2011-06-01

    The aim of this study was to explore the experiences and preferences of terminally ill cancer patients regarding truth telling in the communication of poor prognoses. We recorded and transcribed interviews with 45 patients who knew their cancer was terminal, and analyzed their responses hermeneutically. Patients identified three different modes of truth: (1) the absolute objective truth that they are dying; (2) the partial truth about their condition including some facts but not all of the details; and (3) the desired truth, originating in the patient's own beliefs about a healthy or better life. Coping strategies were related to patients' preferred mode of truth: (1) facing the truth in order to take action; (2) facing some parts of the truth in order to maintain hope; and (3) hovering between facing and avoiding the truth. In their struggle for existential survival, patients used different coping strategies, changing from one to another depending upon the circumstances. Varying use of different coping strategies impacts on patient preferences concerning communication about bad news with their doctors. Truth-telling entails more than merely providing information related to the forthcoming death. It also concerns how physicians or other healthcare staff can support the patient's existential survival by fine-tuning the communication of "truth" according to the individuals' preferences.

  1. 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

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

    PubMed

    Hallion, Madeleine; Taylor, Amanda; Roberts, Rachel

    2016-11-16

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

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

    PubMed

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

    2011-10-01

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

  4. Truth-telling to patients' terminal illness: what makes oncology nurses act individually?

    PubMed

    Huang, Shu-He; Tang, Fu-In; Liu, Chang-Yi; Chen, Mei-Bih; Liang, Te-Hsin; Sheu, Shuh-Jen

    2014-10-01

    Nurses encounter the challenge of truth-telling to patients' terminal illness (TTPTI) in their daily care activities, particularly for nurses working in the pervasive culture of family protectiveness and medical paternalism. This study aims to investigate oncology nurses' major responses to handling this issue and to explore what factors might explain oncology nurses' various actions. A pilot quantitative study was designed to describe full-time nurses' (n = 70) truth-telling experiences at an oncology centre in Taipei. The potential influencing factors of nurses' demographic data, clinical characteristics, and truth-telling attitudes were also explored. Most nurses expressed that truth-telling was a physician's responsibility. Nevertheless, 70.6% of nurses responded that they had performed truth-telling, and 20 nurses (29.4%) reported no experience. The reasons for inaction were "Truth-telling is not my duty", "Families required me to conceal the truth", and "Truth-telling is difficult for me". Based on a stepwise regression analysis, nurses' truth-telling acts can be predicted based on less perceived difficulty of talking about "Do not resuscitate" with patients, a higher perceived authorisation from the unit, and more oncology work experience (adjusted R² = 24.1%). Oncology care experience, perceived comfort in communication with terminal patients, and unit authorisation are important factors for cultivating nurses' professional accountability in truth-telling. Nursing leaders and educators should consider reducing nursing barriers for truth-telling, improving oncology nurses' professional accountability, and facilitating better quality care environments for terminal patients. Copyright © 2014 Elsevier Ltd. All rights reserved.

  5. Patients' experience of chronic illness care in a network of teaching settings.

    PubMed

    Houle, Janie; Beaulieu, Marie-Dominique; Lussier, Marie-Thérèse; Del Grande, Claudio; Pellerin, Jean-Pierre; Authier, Marie; Duplain, Réjean; Tran, Tri Minh; Allison, François

    2012-12-01

    To evaluate chronic illness care delivery from the patient's perspective and to examine its main correlates. Cross-sectional, descriptive study using questionnaires and medical chart review. Nine teaching family practices in Quebec. A total of 364 patients with diabetes, hypertension, or chronic obstructive pulmonary disease. Score on the Patient Assessment of Chronic Illness Care (PACIC) questionnaire, which evaluates the patient's perspective on the care received based on the chronic care model (CCM); patients characteristics (sex, level of education, number of chronic illnesses); patient-physician relationship (relational continuity, interpersonal communication assessed from the patient's perspective); and interdisciplinary care and technical quality of care abstracted from patients' medical charts. The mean PACIC score obtained (2.8 out of 5) indicates that, on average, CCM-concordant care "generally did not occur" or occurred only "sometimes" in this network of teaching practices. However, with a mean technical quality-of-care score of nearly 80%, physicians in this network showed a high degree of adherence to clinical guidelines for the chronic illnesses under study. Patient education level lower than high school was negatively associated with PACIC scores, while positive associations were found with male sex, number of chronic illnesses, relational continuity, interpersonal communication, interdisciplinary care, and technical quality of care. Patients with less education reported receiving less CCM-concordant care. The patient-physician relationship was the strongest correlate of PACIC scores, while interdisciplinary care and technical quality of care had modest contributions.

  6. 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…

  7. 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…

  8. Patients understanding of depression associated with chronic physical illness: a qualitative study

    PubMed Central

    2014-01-01

    Background Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. We explored patient beliefs about the nature of depression associated with physical illness. Methods A qualitative interview study of patients registered with general practices in Leeds, UK. We invited patients with coronary heart disease or diabetes from primary care to participate in semi-structured interviews exploring their beliefs and experiences. We analysed transcripts using a thematic approach, extended to consider narratives as important contextual elements. Results We interviewed 26 patients, including 17 with personal experience of depression. We developed six themes: recognising a problem, complex causality, the role of the primary care, responsibility, resilience, and the role of their life story. Participants did not consistently talk about depression as an illness-like disorder. They described a change in their sense of self against the background of their life stories. Participants were unsure about seeking help from general practitioners (GPs) and felt a personal responsibility to overcome depression themselves. Chronic illness, as opposed to other life pressures, was seen as a justifiable cause of depression. Conclusions People with chronic illness do not necessarily regard depression as an easily defined illness, especially outside of the context of their life stories. Efforts to engage patients with chronic illness in the detection and management of depression may need further tailoring to accommodate beliefs about how people view themselves, responsibility and negative views of treatment. PMID:24555886

  9. Thoracic vein ablation terminates chronic atrial fibrillation in dogs.

    PubMed

    Park, Angela M; Chou, Chung-Chuan; Drury, Paul C; Okuyama, Yuji; Peter, Anish; Hamabe, Akira; Miyauchi, Yasushi; Kass, Robert M; Karagueuzian, Hrayr S; Fishbein, Michael C; Lin, Shien-Fong; Chen, Peng-Sheng

    2004-06-01

    The thoracic vein hypothesis of chronic atrial fibrillation (AF) posits that rapid, repetitive activations from muscle sleeves within thoracic veins underlie the mechanism of sustained AF. If this is so, thoracic vein ablation should terminate sustained AF and prevent its reinduction. Six female mongrel dogs underwent chronic pulmonary vein (PV) pacing at 20 Hz to induce sustained (>48 h) AF. Bipolar electrodes were used to record from the atria and thoracic veins, including the vein of Marshall, four PVs, and the superior vena cava. Radio frequency (RF) application was applied around the PVs and superior vena cava and along the vein of Marshall until electrical activity was eliminated. Computerized mapping (1,792 electrodes, 1 mm resolution) was also performed. Sustained AF was induced in 30.6 +/- 6.5 days, and ablation was done 17.3 +/- 8.5 days afterward. Before ablation, the PVs had shorter activation cycle lengths than the atria, and rapid, repetitive activations were observed in the PVs. All dogs converted to sinus rhythm during (n = 4 dogs) or within 90 min of completion of RF ablation. Rapid atrial pacing afterward induced only nonsustained (<60 s) AF in all dogs. Average AF cycle lengths after reinduction were significantly (P = 0.01) longer (183 +/- 31.5 ms) than baseline (106 +/- 16.2 ms). There were no activation cycle length gradients after RF application. We conclude that thoracic vein ablation converts canine sustained AF into sinus rhythm and prevents the reinduction of sustained AF. These findings suggest that thoracic veins are important in the maintenance of AF in dogs.

  10. Beyond pharmacotherapy: understanding the links between obesity and chronic mental illness.

    PubMed

    Taylor, Valerie H; McIntyre, Roger S; Remington, Gary; Levitan, Robert D; Stonehocker, Brian; Sharma, Arya M

    2012-01-01

    While differences in weight-gain potential exist, both between and within classes of psychiatry medications, most commonly used atypical antipsychotics, mood stabilizers, and antidepressants result in some degree of weight gain. This is not new information and it requires an understanding of the tolerability profiles of different treatments and their goodness of fit with specific patient phenotypes. However, this iatrogenic association represents only a piece of this obesity-mental illness dyad. The complex interplay between psychiatric illness and weight involves neurobiology, psychology, and sociological factors. Parsing the salient variables in people with mental illness is an urgent need insofar as mortality from physical health causes is the most common cause of premature mortality in people with chronic mental illness. Our review examines issues associated with common chronic mental illnesses that may underlie this association and warrant further study if we hope to clinically intervene to control this life-threatening comorbidity.

  11. 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

  12. [A qualitative study on health care to chronically ill people in Popular Health Insurance program].

    PubMed

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

    2013-04-01

    To examine health care provided to chronically ill people in the Popular Health Insurance (Seguro Popular) from the perspective of patients and health professionals. A qualitative study was carried out in Guadalajara, Mexico. 40 chronically ill people, and 14 health professionals of primary health centers participated in the study. Information was gathered using semi-structured interviews; critical discourse analysis was carried out. Seguro Popular has meant gains and losses to participants. Cronically ill people value it positively since it is perceived as a gift, not a social right. Some obstacles impede participants accessing health care, obtaining medications and analysis. Conflictive relations also cause tensions between patients and health professionals. The initial goals of Seguro Popular are not achieved regarding health care to chronically ill people. The perspectives of sick people should be prioritized.

  13. Antibodies to squalene in US Navy Persian Gulf War veterans with chronic multisymptom illness.

    PubMed

    Phillips, Christopher J; Matyas, Gary R; Hansen, Christian J; Alving, Carl R; Smith, Tyler C; Ryan, Margaret A K

    2009-06-12

    Since the end of the 1991 Gulf War, there have been reports of unexplained, multisymptom illnesses afflicting veterans who consistently report more symptoms than do nondeployed veterans. One of the many possible exposures suspected of causing chronic multisymptom illnesses Gulf War veterans is squalene, thought to be present in anthrax vaccine. We examined the relationship between squalene antibodies and chronic symptoms reported by Navy construction workers (Seabees), n=579. 30.2% were deployers, 7.4% were defined as ill, and 43.5% were positive for squalene antibodies. We found no association between squalene antibody status and chronic multisymptom illness (p=0.465). The etiology of Gulf War syndrome remains unknown, but should not include squalene antibody status.

  14. Within the web: the family-practitioner relationship in the context of chronic childhood illness.

    PubMed

    Dickinson, Annette R; Smythe, Elizabeth; Spence, Deb

    2006-12-01

    This hermeneutic phenomenological study explores the relationship between health professionals and families who have a child with a chronic illness. Study participants included 10 family groups who had a child with a chronic illness and 12 practitioners from the disciplines of nursing, medicine, dietetics, physiotherapy and speech therapy. Data were collected by narrative audiotaped interviewing. The results of this study revealed that chronic childhood illness 'throws' families and practitioners together into a web of relationships, which must work for the sake of the child. However, children are usually excluded from the relationship. To understand and manage the child's illness, practitioners and families 'go around' and act 'in-between' relationships. While the quality of the relationship from the family perspective is not essential, relationships are more successful when practitioners recognize the uniqueness of each family web. The nature of the relationship is often simple, yet it coexists with complexity.

  15. 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…

  16. 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…

  17. 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…

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

    PubMed Central

    Röing, Marta

    2015-01-01

    Phenomenography is a qualitative research approach developed within an educational framework, focusing on the qualitative experience of learning. It is also being used, to a lesser degree, in healthcare research. In the present study, we conducted a meta-ethnographic synthesis of phenomenographic studies on chronic illness, in order to give a broader perspective of how chronic illness can be experienced. Our aim was not to describe patients’ various individual experiences of illness, but instead to identify the different ways chronic illness can be experienced by patients. Our synthesis and phenomenographic interpretation of 12 selected articles found that patients’ experiences of chronic illness can be described in terms of a different lived body, a struggle with threat to identity and self-esteem, a diminished lifeworld, and a challenging reality. These experiences relate to each other in a process of recurring loops, where the different ways of experiencing continue to influence each other over time. According to these findings, the use of phenomenography as a research approach has the potential to add to the understanding of how chronic illness can be experienced. Patients may benefit from seeing that their illness can be experienced in many different ways and that it has many aspects, which then can lead to a better understanding and coping with their illness. We suggest that it may be worthwhile to expand the scope of phenomenography outside pedagogics. This presupposes a revision of the application to include a wider and more comprehensive description, for instance, of the different ways illness and healthcare phenomena can be experienced, and how these different ways are related to each other, with less focus on hierarchical relations. PMID:25690674

  19. Symptoms of Depression in a Hispanic Primary Care Population With and Without Chronic Medical Illnesses

    PubMed Central

    Reinschmidt, Kerstin M.; Moreno, Francisco A.

    2010-01-01

    Objective: To describe somatic and psychiatric symptoms reported by Hispanic primary care patients with and without depression and/or chronic medical illnesses. Method: Adult Hispanic patients (n = 104) in a Mobile Health Program in underserved southern Arizona participated in a survey conducted between September 2006 and February 2007 to obtain information about the somatic and psychiatric symptoms that they were experiencing. They were asked to rate the severity of their symptoms listed in the depression screen Personal Health Questionnaire-9 (PHQ-9), the Symptom Checklist-90-Revised (SCL-90-R), and 5 new symptoms described by patients in focus groups conducted in the first phase of the project. Patients were categorized as depressed if their PHQ-9 scores were 10 or above, and they were further categorized as having or not having chronic illnesses based on self-report. Analyses of variance were conducted for each SCL-90-R symptom dimension to compare across the 4 groups (group 1: not depressed and not medically ill; group 2: medically ill but not depressed; group 3: depressed but not medically ill; and group 4: depressed and medically ill). Results: Patients with chronic medical illnesses comorbid with depression were found to report significantly more somatic symptoms than those with only chronic medical illnesses or depression alone (P ≤ .001). They also reported significantly more psychopathology than patients with depression alone (P ≤ .05 or better). Conclusions: Patients with medical illnesses comorbid with depression are more likely to exhibit psychopathology than patients with medical illnesses or depression alone. PMID:20944771

  20. 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

  1. Development of EBM-CDSS (Evidence-Based Clinical Decision Support System) to AIG Prognostication in Terminally Ill Patients

    DTIC Science & Technology

    Goal of the project is to develop an Evidence-based Clinical Decision Support (CDSS- EBM ) system and make it available at the point of care to improve...prognostication of the life expectancy of terminally ill patients to improve referral of patients to hospice. In addition, the EBM -CDSS will be

  2. 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…

  3. Nurse Practitioners' Perceptions of Their Academic Preparation, Philosophy, and Strategies in Working with the Terminally Ill Patient.

    ERIC Educational Resources Information Center

    White, Hazel Lee

    This study sought to identify from the literature the type of preparation nurse practitioners receive and the practices they use in the care of terminally ill patients as well as to determine from a study of five practitioners in rural health clinics in Mississippi their perception of their training, their philosophy, and the strategies they use…

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

    PubMed

    Jowsey, Tanisha; Yen, Laurann; W, Paul Mathews

    2012-12-03

    The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA. Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised. Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved. While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for

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

    PubMed

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

    2015-10-01

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

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

    PubMed

    Tsui, Emma K

    2013-01-01

    The concept of biographical disruption has unique relevance for socioeconomically disadvantaged groups who participate in entry-level job training programmes. In these programmes trainees often suffer from various forms of chronic illness and must arrange these illnesses into a picture of employability. In this article I use ethnographic data and narrative analysis to examine closely two trainees' illness-related experiences, expressions and talk, and find that their ability to present their illnesses in ways that are consistent with programmatic goals is strongly influenced by family support, responsibilities and roles, as well as particular aspects of illness, like the interpretability of symptoms. I also find that the concept of biographical disruption has a curious traction in the world of job training, particularly among job training programme staff who would like to see trainees mobilise a variety of resources to help manage their illness. However, for trainees, many of whom have lived with chronic illness for years, the concept of biographical disruption may be more limited as a tool for understanding the experiences of illness. A more meaningful disruptive force in the lives of trainees appears to be the programme itself and the strategies for dealing with illness that programme staff may extend.

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

    PubMed

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

    2011-01-01

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

  9. Combining the creative arts and the house call to teach medical students about chronic illness care.

    PubMed

    LoFaso, Veronica M; Breckman, Risa; Capello, Carol F; Demopoulos, Byron; Adelman, Ronald D

    2010-02-01

    As the number of people living with chronic illness in the United States rises, it is imperative that medical school prepare physicians who are capable of caring for these patients. This article outlines a creative educational intervention to teach third- and fourth-year medical students about caring for chronically ill people. All students at Weill Medical College, Cornell University, make home visits to homebound older adults with an interdisciplinary team as part of a mandatory Primary Care Clerkship. Under their guidance, students observe the myriad challenges facing homebound older adults. Afterward, students create a project, using original or found art, to express their reactions and thoughts. Students present projects to peers in a small group, with multidisciplinary faculty mentors framing the discussion. To evaluate the intervention, students responded to a nine-item questionnaire and a series of open-ended questions. Quantitative and qualitative analyses show consistently strong positive responses to the experience. Most students (95.0%) felt that they learned about the complexities of chronic illness care from their home visits. The opportunity to express reactions through a creative project received positive responses with 97.0% of students responding favorably. Ninety-seven percent felt that the discussions with colleagues and faculty increased knowledge of chronic illness care. Nearly all (97.0%) felt they had a better understanding of team and that attitudes toward the chronically ill were positively affected. The coupling of the creative arts with home visits is an effective tool for teaching about chronic illness and may be a useful model for medical schools interested in expanding their chronic illness curriculum.

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

    PubMed

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

    2017-01-01

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

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

    PubMed

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

    2014-01-01

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

  12. Are Fortune 100 companies responsive to chronically ill workers?

    PubMed

    Montenegro-Torres, B F; Engelhardt, T; Thamer, M; Anderson, G

    2001-01-01

    We conducted a survey of Fortune 100 companies to determine their response to the growing number of employees with chronic conditions. We found that although all companies cover some services that are particularly beneficial to persons with chronic conditions, gaps in coverage remain. We also found large variations in cost-sharing mechanisms, number of covered visits, and lifetime maximum benefit provisions, which are especially important to persons with chronic conditions. In general, for persons with chronic conditions the benefits offered by these Fortune 100 companies are superior to those offered by Medicare.

  13. Chronic critical illness: are we saving patients or creating victims?

    PubMed Central

    Loss, Sergio Henrique; Nunes, Diego Silva Leite; Franzosi, Oellen Stuani; Salazar, Gabriela Soranço; Teixeira, Cassiano; Vieira, Silvia Regina Rios

    2017-01-01

    The technological advancements that allow support for organ dysfunction have led to an increase in survival rates for the most critically ill patients. Some of these patients survive the initial acute critical condition but continue to suffer from organ dysfunction and remain in an inflammatory state for long periods of time. This group of critically ill patients has been described since the 1980s and has had different diagnostic criteria over the years. These patients are known to have lengthy hospital stays, undergo significant alterations in muscle and bone metabolism, show immunodeficiency, consume substantial health resources, have reduced functional and cognitive capacity after discharge, create a sizable workload for caregivers, and present high long-term mortality rates. The aim of this review is to report on the most current evidence in terms of the definition, pathophysiology, clinical manifestations, treatment, and prognosis of persistent critical illness. PMID:28444077

  14. 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

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

    PubMed

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

    2016-04-01

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

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

    PubMed

    Ahn, Jeong-Ah; Lee, Sunhee

    2016-12-01

    The purpose of this study was to identify how peer attachment and parenting style differentially affect self-concept and school adjustment in adolescents with and without chronic illness. A cross-sectional study using multiple group analysis on the Korean panel data was used. A nationwide stratified multistage cluster sampling method was used and the survey was conducted in 2013 on 2,092 first-year middle school students in Korea. We used standardized instruments by the National Youth Policy Institute to measure peer attachment, parenting style, self-concept, and school adjustment. Multiple-group structural equation modeling was used to evaluate the difference of relations for peer attachment, parenting style, self-concept, and school adjustment variable between adolescents with chronic illness and those without chronic illness. The model fit of a multiple-group structural equation modeling was good. The difference of the path from negative parenting style to self-concept between the two groups was significant, and a significant between-group difference in the overall path was found. This indicated that self-concept in adolescents with chronic illness was more negatively affected by negative parenting style than in adolescents without chronic illness. Healthcare providers can promote the process of school adjustment in several ways, such as discussing this issue directly with adolescent patients, along with their parents and peers, examining how the organization and content of the treatment can be modified according to the adolescents' school life. Copyright © 2016. Published by Elsevier B.V.

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

    PubMed

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

    2016-10-01

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

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

    PubMed Central

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

    2016-01-01

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

  19. Attitudes of terminally ill older adults toward complementary and alternative medicine therapies.

    PubMed

    Grief, Cindy J; Grossman, Daphna; Rootenberg, Mark; Mah, Linda

    2013-01-01

    The aim of this study was to characterize the attitudes of older adults on an inpatient palliative care unit toward complementary and alternative medicine (CAM) therapies. A consecutive sample of 33 inpatients (61 to 98 years old) completed a questionnaire that examined their attitudes toward CAM to determine the acceptability of these therapies. Corresponding questionnaires were gathered from 10 substitute decision makers (SDMs). Preferences for specific CAM modalities were identified. Correlational analyses were performed between interest in CAM therapies and demographic variables and clinical status, including physical and psychological distress. A total of 27 patients (82 percent) were interested in trying CAM therapies. The greatest interest was shown in music therapy (61 percent) and massage therapy (58 percent). All of the SDMs were interested in having CAM therapies available for their loved ones to try. Attitudes toward CAM therapies of terminally ill older inpatients and their SDMs are highly favourable. CAM treatments merit closer evaluation as a means of enhancing end-of-life care.

  20. 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

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

    PubMed

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

    2014-04-01

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

  2. 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.

  3. Altered satellite cell dynamics accompany skeletal muscle atrophy during chronic illness, disuse, and aging.

    PubMed

    McKenna, Colleen F; Fry, Christopher S

    2017-08-08

    This review explores recent research investigating the contribution of satellite cells (skeletal muscle stem cells) during muscle fiber atrophy as seen in periods of disuse, illness, and aging. Studies indicate reduced satellite cell activity and density in a variety of acute and chronic conditions characterized by robust muscle wasting. The direct contribution of satellite cells to unloading/denervation and chronic illness-induced atrophy remains controversial. Inflammation that accompanies acute trauma and illness likely impedes proper satellite cell differentiation and myogenesis, promoting the rapid onset of muscle wasting in these conditions. Transgenic mouse studies provide surprising evidence that age-related declines in satellite cell function and abundance are not causally related to the onset of sarcopenia in sedentary animals. Recent clinical and preclinical studies indicate reduced abundance and dysregulated satellite cell activity that accompany muscle atrophy during periods of disuse, illness, and aging, providing evidence for their therapeutic potential.

  4. 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.

  5. Problem solving in diabetes self-management: a model of chronic illness self-management behavior.

    PubMed

    Hill-Briggs, Felicia

    2003-01-01

    Management of chronic illnesses is a significant public health concern that is made more challenging by problems of regimen adherence. Effective self-management of chronic illnesses such as diabetes requires not only technical skill to perform regimen behaviors but also problem-solving skills to manage daily barriers to regimen adherence and to make appropriate adjustments to the self-care regimen. A review of the empirical literature on the relation between problem solving and disease self-management in diabetes, a chronic illness exemplar, illuminates methodological limitations that indicate a need for a theoretical framework for problem solving applied to chronic disease self-management. A problem-solving model of chronic disease self-management is proposed, derived from theories of problem solving in cognitive psychology, educational/learning theory, and social problem solving. Four essential components of problem solving in disease self-management are identified: (a). problem-solving skill, (b). problem-solving orientation, (c). disease-specific knowledge, and (d). transfer of past experience. The model is illustrated, and empirical support for this problem-solving model in the diabetes literature is discussed. The model has utility in driving testable hypotheses regarding the relation of disease-specific problem solving to chronic illness management, in developing problem-solving assessment instruments relevant to disease self-management, and in guiding disease self-management training and interventions.

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

    PubMed Central

    Soubhi, Hassan; Fortin, Martin; Hudon, Catherine

    2006-01-01

    Background The quality of the relationship with the spouse/partner appears crucial among patients with multiple chronic conditions where illness management is complex and multifaceted. This study draws on data from the Quebec Health Survey (QHS) to examine, among patients with one or more chronic conditions, the relation between marital status, the perceived conflict with the spouse/partner, and what the patients do to manage their illness as well as how they perceive their health. Methods Data from the QHS 1998 were used. The sample included 7547 coupled adults who had one or more chronic health problems lasting more than 6 months. Independent variables included marital status, perceived conflict with the spouse/partner, and the number of chronic conditions. Illness management was defined broadly as a measure of the patient's efforts at self-care and an illness status indicator, including visits to the generalist and the specialist, the use of telephone health line in the last 12 months, self-rated general health, mental health, and a measure of psychological distress. Linkages between the independent variables and illness management were assessed for males and females separately with logistic regressions, while accounting for the survey sampling design and household clustering. Results Female patients who did not live with their partner and had never been married were more likely to report a negative perception of their general health and a higher psychological distress than those who were married. Perceived conflict with the partner was linked to a negative perception of mental health and a higher psychological distress among both men and women. Compared to patients with only one chronic condition, males who reported more than one chronic condition were more likely to have consulted a generalist prior to the survey and used the telephone health line, whereas females were more likely to have consulted a specialist. Both males and females with more than one

  7. 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…

  8. 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…

  9. 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).

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

    PubMed

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

    2012-01-01

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

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

    PubMed

    Riegel, Barbara; Jaarsma, Tiny; Strömberg, Anna

    2012-01-01

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

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

    PubMed

    Kim, Mijung; Lee, Kyunghee

    2015-12-01

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

  13. 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

  14. Canada's Compassionate Care Benefit: views of family caregivers in chronic illness.

    PubMed

    Williams, Allison; Crooks, Valorie A; Stajduhar, Kelli I; Allan, Diane; Cohen, S Robin

    2006-09-01

    Based on a pilot evaluation of Canada's recently introduced Compassionate Care Benefit (CCB), the purpose of this paper is to highlight the experiences of family caregivers caring for people with non-malignant advanced chronic illness. Using Patton's (1997) utilization-focused evaluation approach, 25 telephone interviews were conducted with three groups of family caregivers: those who had successfully applied for the CCB; those who were unsuccessful in their applications; those who had never applied for the benefit. The CCB has a number of limitations, particularly for caregivers of patients diagnosed with non-malignant advanced chronic illness. The central limitations are: difficulties associated with accurate prognostication; limited definition of "family member"; insufficient length of the funding period. By modelling similar programmes internationally, such as those in Sweden, Norway, and the Netherlands, Canada would likely find the CCB to have greater relevance and accessibility to Canadian caregivers, particularly those caring for people with non-malignant advanced chronic illness.

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

    PubMed Central

    Winthrop, Zachary A.; Salman, Rabia; Majeed, Salman

    2016-01-01

    Alagille syndrome is a rare multisystem disorder affecting the liver, heart, vertebrae, eyes, and face. Alagille syndrome shares multiple phenotypic variants of other congenital or chronic childhood illnesses such as DiGeorge syndrome, Down syndrome, spina bifida, type 1 diabetes mellitus, and cystic fibrosis. All of these chronic illnesses have well-established links to psychiatric conditions. There are few community resources for Alagille patients, as it is an extremely rare condition. Despite the overlap with other chronic childhood illnesses, the psychiatric manifestations of Alagille syndrome have not been previously discussed in literature. The current study is a case report of a twelve-year-old female hospitalized in our pediatric psychiatric hospital for suicidal ideation with intent and plan. The patient had major depressive disorder, anxiety, other specified feeding and eating disorder, and attention-deficit/hyperactive disorder. PMID:28018696

  16. The role of parental and adolescent attributions in adjustment of adolescents with chronic illness.

    PubMed

    Guion, Kimberly; Mrug, Sylvie

    2012-09-01

    Previous literature has demonstrated the separate contributions of parental attributions and adolescent attributions to psychosocial adjustment of adolescents with chronic illness. However, it is unknown whether parental attributions affect adolescents' mental health directly or indirectly by influencing the youths' attributional style. This study evaluated the direct and indirect (through adolescent attributions) effects of parental attributions on internalizing and externalizing problems of adolescents with chronic illness. Adolescents (N = 128; M = 14.7 years) diagnosed with cystic fibrosis or diabetes and their caregivers completed measures of attributional style and adolescent adjustment. Parents' optimistic attributions were associated with fewer adolescent internalizing and externalizing problems. These effects were partly mediated by adolescent attributions. These results suggest that targeting both adolescent and parent attributions may be important for improving adolescents' adjustment to a chronic illness.

  17. 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

  18. 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

  19. Women's perspectives on chronic illness: ethnicity, ideology and restructuring of life.

    PubMed

    Anderson, J M; Blue, C; Lau, A

    1991-01-01

    This inquiry into the lives of women living with a chronic illness brings to attention the complex processes that frame the existential meanings of illness. Data from immigrant Chinese and Anglo-Canadian women with diabetes are used to show that illness is constructed in a complex social, political and economic nexus. When the circumstances of women's lives are examined, styles of managing illness that could be attributed to ethnicity, become recognizable as pragmatic ways of dealing with the harsh realities of material existence. It is argued that the trends toward individualizing social problems, and shifting the responsibility for caretaking from the state to the individual, obfuscate the social context of illness, and exclude the socially disadvantaged from adequate health care.

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

    PubMed

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

    2012-12-01

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

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

    PubMed

    Maslow, Gary R; Chung, Richard J

    2013-05-01

    The Positive Youth Development (PYD) framework has been successfully used to support at-risk youth. However, its effectiveness in fostering positive outcomes for adolescents with chronic illness has not been established. We performed a systematic review of PYD-consistent programs for adolescents with chronic illness. Data sources included PubMed, CINAHL, and PsychINFO. Guided by an analytic framework, we searched for studies of PYD-consistent programs serving adolescents and young adults aged 13 through 24 with chronic illness. References were screened iteratively with increasing depth until a focused cohort was obtained and reviewed in full. The authors separately reviewed the studies using structured analysis forms. Relevant study details were abstracted during the review process. Fifteen studies describing 14 programs were included in the analysis. Three comprehensive programs included all 3 core components of a PYD program, including opportunities for youth leadership, skill building, and sustained connections between youth and adults. Four programs were primarily mentoring programs, and 7 others focused on youth leadership. Programs served youth with a variety of chronic illnesses. The quality and type of evaluation varied considerably, with most reporting psychosocial outcomes but only a few including medical outcomes. The PYD-consistent programs identified in this review can serve as models for the development of youth development programs for adolescents with chronic illness. Additional study is needed to evaluate such programs rigorously with respect to both psychosocial and health-related outcomes. PYD-consistent programs have the potential to reach youth with chronic illness and promote positive adult outcomes broadly.

  2. [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.

  3. Chronic diarrhoeal illness in US Peace Corps volunteers.

    PubMed

    Addiss, D G; Tauxe, R V; Bernard, K W

    1990-03-01

    Chronic diarrhoea of unknown aetiology is increasingly recognized as a problem in international travellers, and has been reported in US Peace Corps volunteers. In December 1987, we surveyed all Peace Corps medical officers to determine the magnitude of this problem and obtain preliminary data on potential risk factors. A rate of nine cases of chronic diarrhoea per 1000 volunteers per year was reported by medical officers representing 4607 volunteers in 43 countries. The highest rates were reported in Haiti, where one-third of the volunteers reportedly developed chronic diarrhoea during their two-year stay, as well as in Central and West Africa and Nepal. Volunteers were reported to drink unpasteurized milk routinely in eight (42%) of 19 countries with greater than or equal to one case of chronic diarrhoea during the previous two years, but in only two (11%) of 19 countries where none of the volunteers had chronic diarrhoea (odds ratio = 6.2, p = 0.06, Fisher exact test). Intensive prospective studies in areas of high incidence are needed to define this syndrome further.

  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.

  5. [Self esteem of chronically ill children and adolescence exemplified by obesity and congenital heart defect].

    PubMed

    Sticker, Elisabeth; Schmidt, Claudia; Steins, Gisela

    2003-01-01

    Coping with a chronic illness challenges children and adolescents in addition to their normal developmental tasks. This double challenge probably endangers the development of a stable self-esteem. The present investigation explores the possibility whether these processes are different with respect to the kind of illness. Chronic illnesses such as obesity and congenital heart defects (CHD) serve as examples in comparing two samples (8-16 years): obesity (N = 54) as visible and partly controllable illness (with respect to the course of illness) vs. congenital heart disease (N = 56) as invisible and uncontrollable illness (with respect to the origin and course of illness). Self-esteem is measured by a scale (ALS) which focuses on the public areas "school" and "leisure time" and the private area "family". Children and adolescents with CHD (especially females) display an above-average positive self-esteem in all areas. Children and adolescents with obesity mainly display an average self-esteem, the females scoring above-average for the private area "family", the males scoring below-average for the public area "leisure time". Furthermore, leisure-time related self-esteem is significantly lower for obese than for CHD subjects. These specific relations implicate differential accentuations for intervention programs.

  6. Chronic illness associated with mold and mycotoxins: is naso-sinus fungal biofilm the culprit?

    PubMed

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

    2013-12-24

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

  7. 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.

  8. 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

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

    PubMed

    Joosten, Koen; van der Velde, Kelly; Joosten, Pieter; Rutten, Hans; Hulst, Jessie; Dulfer, Karolijn

    2016-04-01

    In hospitalized children with a chronic disease, malnutrition was associated with a lower subjective health status. In outpatient children with a chronic disease attending special schools, this association has never been studied. The aim of this study was to assess the association between nutritional status and subjective health status in chronically ill children attending special schools. Overall, 642 children, median age 9.8 years (IQR 7.7-11.5), 60 % male, 72 % Caucasian, were included in this prospective study in nine special schools for chronically ill children in the Netherlands. Overall malnutrition was assessed as: acute malnutrition (<-2 SDS for weight for height (WFH)) and chronic malnutrition (<-2 SDS for height for age). The malnutrition risk was assessed with the nutritional risk-screening tool STRONGkids. Subjective health status was assessed with EQ-5D. Overall, 16 % of the children had overall malnutrition: 3 % acute and 13 % chronic malnutrition. Nurses reported 'some/severe problems' on the health status dimensions mobility (15 %), self-care (17 %), usual activities (19 %), pain/discomfort (22 %), and anxiety/depression (22 %) in chronically ill children. Their mean visual analogue scale score (VAS) was 73.0 (SD 11.1). Malnutrition, medication usage, and younger age explained 38 % of the variance of the VAS score. The presence of overall malnutrition in chronically ill children attending special schools was associated with lower subjective health status, especially in younger children and in those with chronic medication usage. Therefore, it is important to develop and use profile-screening tools to identify these children.

  10. Complementary and Alternative Medicine Use Among Chronically Ill Adolescents from 2 German Birth Cohorts.

    PubMed

    Italia, Salvatore; Brüske, Irene; Heinrich, Joachim; Berdel, Dietrich; von Berg, Andrea; Lehmann, Irina; Standl, Marie; Wolfenstetter, Silke Britta

    2016-01-01

    Pediatric use of complementary and alternative medicine (CAM) is popular in Europe, and utilization may be even more prevalent in chronically ill children/adolescents. This study's aim is to assess CAM use among adolescents with chronic conditions. Data on drug utilization (past 4 weeks) and consultation with CAM providers (past year) were collected using a self-administered questionnaire from 4,677 adolescents from the German GINIplus/LISAplus birth cohorts. All reported drugs were classified into therapeutic categories (conventional drugs, homeopathy, herbal drugs, etc.). Additionally, participants were asked to list any chronic diseases (that were parent-reported, physician-verified diagnoses such as allergies, atopic dermatitis, asthma, or other chronic diseases) that they had had over the previous 5 years. Compared with the total sample, drug utilization in general (60.1% vs. 41.1%), homeopathy use (11.1% vs. 8.1%), and consultation with CAM providers (16.9% vs. 10.9%) was significantly more prevalent among chronically ill adolescents. However, chronically ill adolescents used relatively (proportion of the defined therapeutic category among all drugs used) more conventional drugs than healthy adolescents. Compared with healthy adolescents, CAM use is more prevalent among adolescents with chronic conditions. Nevertheless, CAM may predominantly be used as a complementary treatment option rather than substituting conventional drugs. © 2016 S. Karger GmbH, Freiburg.

  11. Sedation and analgesia-prescribing patterns in terminally ill patients at the end of life.

    PubMed

    Vitetta, Luis; Kenner, David; Sali, Avni

    2005-01-01

    nor individual variation in physician prescribing habits in terminally ill patients was associated with hastening of death. Overall, the amount of sedative drugs required for adequate symptom control during terminal care was moderate.

  12. 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

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

    PubMed

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

    2011-05-17

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

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

    PubMed

    Cudney, Shirley; Weinert, Clarann

    2012-02-01

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

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

    PubMed

    Cramm, Jane Murray; Adams, Samantha A; Walters, Bethany Hipple; Tsiachristas, Apostolos; Bal, Roland; Huijsman, Robbert; Rutten-Van Mölken, Maureen P M H; Nieboer, Anna Petra

    2014-04-01

    Investigate the effects of disease management program (DMP) implementation on physical activity, smoking, and physical quality of life among chronically ill patients. This study used a mixed-methods approach involving qualitative (35 interviews with project managers) and quantitative (survey of patients from 18 DMPs) data collection. Questionnaire response rates were 51% (2010; 2619/5108) at T0 and 47% (2011; 2191/4693) at T1. Physical activity and the percentage of smokers improved significantly over time, whereas physical quality of life declined. After adjusting for patients' physical quality of life at T0, age, educational level, marital status, and gender, physical activity at T0 (p<0.01), changes in physical activity (p<0.001), and percentage of smokers at T0 (p<0.05) predicted physical quality of life at T1. Project managers reported that DMPs improved patient-professional interaction. The ability to set more concrete targets improved patients' health behaviors. DMPs appear to improve physical activity among chronically ill patients over time. Furthermore, (changes in) health behavior are important for the physical quality of life of chronically ill patients. Redesigning care systems and implementing DMPs based on the chronic care model may improve health behavior among chronically ill patients. Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

  16. Nutritional status in chronically-ill elderly patients. Is it related to quality of life?

    PubMed

    Artacho, R; Lujano, C; Sanchez-Vico, A B; Vargas Sánchez, C; González Calvo, J; Bouzas, P R; Ruiz-López, M D

    2014-01-01

    The aim of this study is to assess the quality of life in chronically-ill elderly patients and its relationship with parameters concerning the patients' nutritional status. A cross-sectional study. Primary health-care centres in Jaen, Spain. A total of 168 chronically-ill elderly outpatients aged from 65 to 89 years. Quality of life was measured using the World Health Organization Quality of Life (WHOQOL-BREF) questionnaire. A nutritional assessment was undertaken including socio-demographic variables, anthropometric measurements (body-mass index and calf circumference), functional evaluation (Barthel index and Folstein mini-mental status test) and a dietetic questionnaire. The mini-nutritional assessment test was used as an assessment tool to detect nutritional risk. Quality of life in chronically-ill elderly subjects, as determined by the WHOQOL-BREF questionnaire, which diminishes with age, is independent of anthropometric parameters and a statistically significant difference was found between gender, socio-demographic characteristics, functional capacity, nutritional status and the kind of chronic disease (p<0.05). The relationship between the quality of life with the patients' socio-demographic characteristics, functional capacity and nutritional status underlines the importance of taking these factors into account in the management of chronically ill patients, especially women.

  17. Common elements in self-management of HIV and other chronic illnesses: an integrative framework.

    PubMed

    Swendeman, Dallas; Ingram, Barbara L; Rotheram-Borus, Mary Jane

    2009-10-01

    HIV/AIDS is widely recognized as a chronic illness within HIV care, but is often excluded from chronic disease lists outside the field. Similar to other chronic diseases, HIV requires lifetime changes in physical health, psychological functioning, social relations, and adoption of disease-specific regimens. The shift from acute to chronic illness requires a self-management model in which patients assume an active and informed role in healthcare decision making to change behaviors and social relations to optimize health and proactively address predictable challenges of chronic diseases generally and HIV specifically. This article reviews literature on chronic disease self-management to identify factors common across chronic diseases, highlight HIV-specific challenges, and review recent developments in self-management interventions for people living with HIV (PLH) and other chronic diseases. An integrated framework of common elements or tasks in chronic disease self-management is presented that outlines 14 elements in three broad categories: physical health; psychological functioning; and social relationships. Common elements for physical health include: a framework for understanding illness and wellness; health promoting behaviors; treatment adherence; self-monitoring of physical status; accessing appropriate treatment and services; and preventing transmission. Elements related to psychological functioning include: self-efficacy and empowerment; cognitive skills; reducing negative emotional states; and managing identity shifts. Social relationship elements include: collaborative relationships with healthcare providers; social support; disclosure and stigma management; and positive social and family relationships. There is a global need to scale up chronic disease self-management services, including for HIV, but there are significant challenges related to healthcare system and provider capacities, and stigma is a significant barrier to HIV-identified service

  18. 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.

  19. Trajectories of Terminally Ill Patients' Cardiovascular Response to Receptive Music Therapy in Palliative Care.

    PubMed

    Warth, Marco; Kessler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J

    2016-08-01

    Relaxation interventions are frequently used to promote symptom relief in palliative care settings, but little is known about the underlying mechanisms. The present analysis aimed at examining the psychophysiological pathways of terminally ill patients' cardiovascular response to a live music therapy vs. prerecorded mindfulness exercise. Eighty-four patients of a palliative care unit were randomly assigned to either of the two interventions. Multilevel modeling was used to analyze trajectories of physiological change. Vagally mediated heart rate variability (VM-HRV) and blood volume pulse amplitude (BVP-A) served as indices of autonomic nervous system response. Participants' gender, age, baseline scores, self-rated pain, and assignment to treatment were entered to the models as predictors. Both VM-HRV and BVP-A showed significant linear and quadratic trends over time, as well as substantial heterogeneity among individuals' trajectories. Baseline scores, pain, and treatment significantly accounted for random variation in VM-HRV intercepts. BVP-A levels were significantly higher in women than in men. Moreover, assignment to treatment significantly accounted for differences in the linear slopes of peripheral blood flow. Higher levels of VM-HRV in the music therapy group highlight the importance of a therapeutic relationship for the effectiveness of relaxation interventions in end-of-life care settings. Music therapy caused significantly stronger reductions of vascular sympathetic tone and, therefore, may be indicated in the treatment of pain and stress-related symptoms in palliative care. Initial self-ratings of pain moderated patients' physiological response and need to be taken into account in clinical practice and future theory building. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  20. Time and life perception in the terminally ill: its utility in screening for depression.

    PubMed

    Julião, Miguel; Oliveira, Fátima; Nunes, Baltazar; Barbosa, António

    2013-11-01

    The objective was to explore the utility of a new three-item depression screening tool concerning time and life perception (TLP-3), compared with the DSM-IV criteria. This was a cross-sectional study of 63 Portuguese terminally ill patients, from May 2010 to November 2012. Patients were eligible if they fulfilled the following inclusion criteria: age ≥18 years old; having a life-threatening disease with prognosis of 6 months or less; no evidence of dementia or delirium, based on documentation within the medical chart or by clinical consensus; Mini Mental State score ≥20; being able to read and speak Portuguese; and provision of written informed consent. Participants were assessed for depression using DSM-IV criteria and the newly developed TLP-3. Screening performance for depression using the TLP-3 compared with DSM-IV was calculated using measures of sensitivity, specificity, positive and negative predictive values. Logistic regression was calculated with the aim of identifying variables with the best predictive ability for diagnosing depression. After logistic regression analysis was made to all three items composing TLP-3, only two items were maintained (OR=2.9, 95% CI [0.9-8.7]; OR=7.6, 95% CI [0.9-65.3], respectively). This final regression model composed of two questions (TLP-2) was able to diagnose correctly 70% of the depressed patients with a sensitivity of 63% and a specificity of 74%. The area under the ROC curve was 72% (95% CI [59-85]). TLP-3 is a novel and clinically applicable approach to assessing depression among palliative care patients. Further investigation is needed on the psychological significance of time and life perception distortions, and its possible application to screen for depression among patients nearing end of life.

  1. 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)

  2. 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)

  3. The preference of place of death and its predictors among terminally ill patients with cancer and their caregivers in China.

    PubMed

    Gu, Xiaoli; Cheng, Wenwu; Cheng, Menglei; Liu, Minghui; Zhang, Zhe

    2015-12-01

    To describe the preference of place of death among Chinese patients with cancer and their caregivers and to identify factors associated with the preference. A prospective questionnaire research was conducted in terminally ill patients with cancer and their caregivers. Questions included sociodemographic characteristics and information about patients' diseases and patients' preference of place of death. Home (53.64%) was the first choice for 522 patients, 51.34% of participated caregivers chose home as the preferred place of death, and patient-caregiver dyads achieved 84.10% agreement. Patients who lived in rural area, with lower education level and lived with relatives, expressed more preference to die at home. This study described information about the preference of place of death and its potential predictive factors in terminally ill patients with cancer in mainland of China. © The Author(s) 2014.

  4. The experience of chronic illness in women: a comparison between women with endometriosis and women with chronic migraine headaches.

    PubMed

    Barnack, Jessica L; Chrisler, Joan C

    2007-01-01

    The diagnosis of a chronic illness is a life changing event that affects the biological, psychological, and sociological aspects of a person's life. The purpose of the present study was to compare the experiences of pain, physical and psychological well-being, stress, patient satisfaction, social support, and attitudes toward menstruation of women who suffer from endometriosis and women who suffer from chronic migraine headaches. It was hypothesized that women with endometriosis would have more negative scores than women who have migraines on all measures because endometriosis is not understood by society to be a valid source of pain. Participants were 41 women with endometriosis and 32 women with migraines who were recruited from support groups and online listservs. Women with endometriosis reported significantly more pain, stress, and negative attitudes toward menstruation than did women with migraines. Implications for the differential treatment of women with chronic illnesses related to the menstrual cycle are discussed.

  5. Course and predictors of depressive symptoms among family caregivers of terminally ill cancer patients until their death.

    PubMed

    Tang, Siew Tzuh; Chang, Wen-Cheng; Chen, Jen-Shi; Wang, Hung-Ming; Shen, Wen Chi; Li, Chung-Yi; Liao, Yen-Chi

    2013-06-01

    Few studies have investigated the impact of providing end-of-life care on family caregivers' depressive symptoms over time, especially until the patient's death. The purpose of this study was to identify the course and predictors of depressive symptoms in caregivers of terminally ill cancer patients until they died. For this prospective, longitudinal study of 193 caregivers, data were collected using the Center for Epidemiological Studies Depression Scale, Symptom Distress Scale, Medical Outcomes Study Social Support Survey, and Caregiver Reaction Assessment scale. The course and predictors of depressive symptoms were analyzed using the generalized estimating equation model. Caregivers' depressive symptoms increased as the patient's death approached. Spousal or adult child family caregivers suffered more depressive symptoms if they self-identified as lacking social support and confidence in offering substantial assistance for younger terminally ill cancer patients with higher levels of symptom distress. Caregivers were susceptible to higher levels of depressive symptoms if they were heavily burdened by caregiving, that is, experienced more disruptions in schedules, greater health deterioration, stronger sense of family abandonment, and lower caregiver esteem. Psychological well-being of caregivers of terminally ill cancer patients deteriorated in response to progression of the patient's disease and impending death. Effective interventions should be developed and provided to high-risk caregivers as identified in our study. Increasing caregivers' strength of perceived social support, facilitating their confidence in caregiving, and alleviating their subjective burden may lessen the development of depressive symptoms in caregivers of terminally ill cancer patients throughout the dying process. Copyright © 2012 John Wiley & Sons, Ltd.

  6. 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

  7. Family members' views on the benefits of harp music vigils for terminally-ill or dying loved ones.

    PubMed

    Ganzini, Linda; Rakoski, Alexa; Cohn, Sharilyn; Mularski, Richard A

    2015-02-01

    Music-thanatology is a palliative modality that uses harp and voice to provide bedside vigils, particularly for terminally ill or actively dying. We sought to determine the benefits of music vigils for terminally ill patients. Survey of 55 family members, whose terminally ill loved one experienced a music vigil during hospitalization, regarding effects on the patient's breathing, relaxation, comfort, pain and ability to sleep. Written comments on negative and positive results of the vigils were coded using content analysis. Family members perceived that the vigils resulted in modest improvement in the patients' breathing, relaxation, comfort, and ability to sleep, with fewer positive effects on pain, and almost no negative effects. Open ended comments focused on the positive benefit in increasing calm, relaxation, comfort. Comments on the positive effects for the family were almost as common as comments on the positive results for the patient. The use of music-vigils in palliative care should be investigated more extensively as our study supports that this intervention has benefits, almost no risk, minimal cost, and may improve patient-family experience of the dying process.

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

    PubMed

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

    2016-03-01

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

  9. A good death in Uganda: survey of needs for palliative care for terminally ill people in urban areas

    PubMed Central

    Kikule, Ekiria

    2003-01-01

    Objective To identify the palliative care needs of terminally ill people in Uganda. Design Descriptive cross sectional study. Setting Home care programmes in and around Kampala that look after terminally ill people in their homes. Participants 173 terminally ill patients registered with the home care programmes. Results Most of the participants had either HIV/AIDS or cancer or both; 145 were aged under 50 years, and 107 were women. Three main needs were identified: the control or relief of pain and other symptoms; counselling; and financial assistance for basic needs such as food, shelter, and school fees for their children. The preferred site of care was the home, though all these people lived in urban areas with access to healthcare services within 5 km of their homes. Conclusion A “good death” in a developing country occurs when the dying person is being cared for at home, is free from pain or other distressing symptoms, feels no stigma, is at peace, and has their basic needs met without feeling dependent on others. PMID:12881259

  10. [Physical exercise and bone development in chronically ill children].

    PubMed

    Farpour-Lambert, Nathalie J; Keller-Marchand, Laetitia; Rizzoli, René; Schwitzgebel, Valérie; Dubuis, Jean-Michel; Hans, Didier; Hofer, Michael F; Suter, Susanne

    2004-02-01

    Children with chronic diseases are at increased risk of sub-optimal bone mineral acquisition and osteoporosis, especially those who have a growth and pubertal delay, reduced physical activity, inadequate nutrition, malabsorption or take medications which may influence bone development. Weight-bearing physical activity has a beneficial effect on bone development of healthy children but little is known in children with chronic diseases. Preliminary results of our cross-sectional study in children with juvenile idiopathic arthritis (JIA) suggest that hip bone mineral density is positively related with physical fitness and muscle strength and is reduced at the more affected side. We have initiated two randomized controlled trials to determine the effects of a moderate impact exercise training program on bone mineral density of children with JIA and type 1 diabetes mellitus.

  11. The ethics of self-management preparation for chronic illness.

    PubMed

    Redman, Barbara K

    2005-07-01

    While nearly all patients with a chronic disease must self-manage their condition to some extent, preparation for these responsibilities is infrequently assured in the USA. The result can be significant harm and the undermining of a patient's ability to take advantage of life opportunities and be productive. Agreeing to care for a patient involves a moral responsibility to see that she or he receives the essential elements of care, including the ability to manage the disease on a daily basis. The research base for the efficacy of self-management and for how patients can be prepared to assume it is sufficiently strong that health care professionals must advocate for its inclusion in the routine evidence-based care of individuals with chronic disease. Because patient education is central to nursing's philosophy and practice, the profession should play a major role in removing structural barriers to self-management preparation and assuring its provision to a high standard of quality.

  12. Self-regulatory fatigue in chronic multisymptom illnesses: scale development, fatigue, and self-control.

    PubMed

    Nes, Lise Solberg; Ehlers, Shawna L; Whipple, Mary O; Vincent, Ann

    2013-01-01

    Self-regulatory capacity involves ability to regulate thoughts, emotions, and behavior. Chronic multisymptom illnesses such as fibromyalgia and chronic fatigue syndrome are accompanied by numerous challenges, and have recently been associated with self-regulatory fatigue (SRF). Chronic multisymptom illnesses are also frequently associated with physical fatigue, and through development of a scale measuring SRF, the current study aimed to examine how SRF can be distinguished from physical fatigue. The study also sought to distinguish SRF from self-control. Two self-regulation researchers developed 30 items related to self-regulatory capacity. These items were distributed to patients (n = 296) diagnosed with chronic multisymptom illness together with validated measures of physical fatigue and self-control. A principal factor analysis was employed to examine factor structures, identify inter-item relationships, and aid in scale development. The final proposed scale consisted of 18 items measuring self-regulatory capacity (SRF-18) with cognitive, emotional, and behavioral SRF components. Internal consistency and reliability was acceptable (Cronbach's á = 0.81). The final scale was moderately correlated with self-control (r = -0.48) and highly correlated with physical fatigue (r = 0.75), although more so with emotional (r = 0.72) and mental (r = 0.65) than physical (r = 0.46) fatigue components. The current study suggests a new scale for measurement of SRF in chronic multisymptom illness. Although cross-validation studies are necessary, such a scale may contribute to a better understanding of the concept of self-regulation and the role of SRF in chronic illness. Although related to physical fatigue and self-control, the results point to SRF as a distinct construct.

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

    PubMed

    Layte, Richard; McCrory, Cathal

    2013-08-01

    Chronic illness in childhood is associated with worse educational outcomes. The association is usually explained via lowered cognitive development, decreased readiness to learn and school absence. However, this paper examines whether worse psychological adjustment may also play a role. We use data from the Growing Up in Ireland study, a cohort study, which collected data on 8,568 nine-year-old children through the Irish national school system using a two-stage sampling method. Maximum likelihood path analytic models are used to assess the direct effect of child chronic illness on reading and maths test scores and the mediating role of emotional and behavioural problems. In unadjusted analyses, children with a mental and behavioural condition scored 14.5 % points less on reading tests and 16.9 % points less on maths tests than their healthy peers. Children with non-mental and behavioural conditions scored 3 % points less on both tests, a significant difference. Mental and behavioural (OR, 9.58) and other chronic conditions (OR, 1.61) were significantly more likely to have 'high' levels of difficulties on the SDQ. Path analysis models showed that the association between chronic illness and educational test scores was completely mediated by emotional and behavioural problems controlling for school absence and bullying by peers. Child and adolescent chronic illness can have significant effects on educational development and a long-lasting impact on future life-chances. The psychological adjustment of the child is important in mediating the effect of chronic illness on educational outcomes. Interventions should target this developmental pathway.

  14. Self-regulatory fatigue in chronic multisymptom illnesses: scale development, fatigue, and self-control

    PubMed Central

    Nes, Lise Solberg; Ehlers, Shawna L; Whipple, Mary O; Vincent, Ann

    2013-01-01

    Background Self-regulatory capacity involves ability to regulate thoughts, emotions, and behavior. Chronic multisymptom illnesses such as fibromyalgia and chronic fatigue syndrome are accompanied by numerous challenges, and have recently been associated with self-regulatory fatigue (SRF). Chronic multisymptom illnesses are also frequently associated with physical fatigue, and through development of a scale measuring SRF, the current study aimed to examine how SRF can be distinguished from physical fatigue. The study also sought to distinguish SRF from self-control. Methods Two self-regulation researchers developed 30 items related to self-regulatory capacity. These items were distributed to patients (n = 296) diagnosed with chronic multisymptom illness together with validated measures of physical fatigue and self-control. A principal factor analysis was employed to examine factor structures, identify inter-item relationships, and aid in scale development. Results The final proposed scale consisted of 18 items measuring self-regulatory capacity (SRF-18) with cognitive, emotional, and behavioral SRF components. Internal consistency and reliability was acceptable (Cronbach’s á = 0.81). The final scale was moderately correlated with self-control (r = −0.48) and highly correlated with physical fatigue (r = 0.75), although more so with emotional (r = 0.72) and mental (r = 0.65) than physical (r = 0.46) fatigue components. Conclusion The current study suggests a new scale for measurement of SRF in chronic multisymptom illness. Although cross-validation studies are necessary, such a scale may contribute to a better understanding of the concept of self-regulation and the role of SRF in chronic illness. Although related to physical fatigue and self-control, the results point to SRF as a distinct construct. PMID:23526193

  15. 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

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

    PubMed

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

    2010-01-01

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

  17. 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…

  18. 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…

  19. 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…

  20. The effects of mutual goal-setting practice in older adults with chronic illness.

    PubMed

    Cheng, Winnie Lai-Sheung

    2017-08-18

    Goal setting is a strategy that can enhance performance. The purpose of this study was to examine how engaging older adults with chronic illness in setting goals for their care would affect their performance in achieving those goals. This study employed a quasi-experimental design with repeated measures to evaluate the effect of an intervention, namely mutual goal-setting (MGS) practice, on elderly patients with chronic illness. Eighty such patients receiving nursing care at home were recruited for the study. Repeated measures showed that the intervention group achieved a higher percentage of their goals, though insignificant group and time interaction effects between groups were found in perceived functional disability, perceived functional health and self-efficacy in self-managing chronic illness. The findings of this study with a specific group, namely elderly patients with chronic illness, support the general premise that patients who participate in determining their care are more likely to improve in physical and mental well-being. Copyright © 2017 Elsevier Inc. All rights reserved.

  1. 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…

  2. 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…

  3. 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…

  4. 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…

  5. 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…

  6. Expanding Transition to Address the Needs of Students with Invisible Chronic Illness

    ERIC Educational Resources Information Center

    Repetto, Jeanne B.; Horky, Susan Chauncey; Miney, Angela; Reiss, John; Saidi, Arwa; Wolcott, Lisa; Saldana, Pablo; Jaress, Jennifer M.

    2012-01-01

    Many children with invisible chronic illnesses (ICIs) are living to adulthood, necessitating that they prepare for their future. Health care and education systems have different meanings and processes for transition, although both systems are designed to help young adults prepare for independence. As health care and educational services support…

  7. 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…

  8. 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…

  9. 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…

  10. 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,…

  11. 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…

  12. 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,…

  13. 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…

  14. Understanding depression associated with chronic physical illness: a Q-methodology study in primary care.

    PubMed

    Alderson, Sarah L; Foy, Robbie; House, Allan

    2015-06-01

    Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. Q-methodology can help to identify viewpoints that are likely to influence either clinical practice or policy intervention. To identify socially shared viewpoints of comorbid depression, and characterise key overlaps and discrepancies. A Q-methodology study of patients registered with general practices or community clinics in Leeds, UK. Patients with coronary heart disease or diabetes and depression from three practices and community clinics were invited to participate. Participants ranked 57 statements about comorbid depression. Factor analyses were undertaken to identify independent accounts, and additional interview data were used to support interpretation. Thirty-one patients participated; 13 (42%) had current symptoms of depression. Five accounts towards comorbid depression were identified: overwhelmed resources; something medical or within me; a shameful weakness; part of who I am; and recovery-orientated. The main differences in attitudes related to the cause of depression and its relationship with the patient's chronic illness, experience of shame, and whether medical interventions would help recovery. There are groups of patients who do not perceive a relationship between their depression and chronic illness; they may not understand the intention behind policy initiatives to identify depression during chronic illness reviews. Tailoring detection strategies for depression to take account of different clusters of attitudes and beliefs could help improve identification and personalise management. © British Journal of General Practice 2015.

  15. 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…

  16. A Brief Cognitive Behavioural Therapy Psychoeducational Group for Chinese People with Chronic Illnesses: An Evaluation Study

    ERIC Educational Resources Information Center

    Wong, Daniel F. K.; Ip, Priscilla S. Y.; Lee, Kim Man

    2017-01-01

    This pilot study attempted to examine the effectiveness of a brief cognitive behavioural therapy (CBT) psychoeducational group for Chinese people with chronic illness in Hong Kong. It adopted a single group design, and 52 participants joined the group. A questionnaire with three outcome measures, measuring general mental health, quality of life…

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

    ERIC Educational Resources Information Center

    Chen, Cliff Yung-Chi

    2016-01-01

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

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

    PubMed

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

    2010-08-01

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

  19. Gamifying Self-Management of Chronic Illnesses: A Mixed-Methods Study.

    PubMed

    AlMarshedi, Alaa; Wills, Gary; Ranchhod, Ashok

    2016-09-09

    Self-management of chronic illnesses is an ongoing issue in health care research. Gamification is a concept that arose in the field of computer science and has been borrowed by many other disciplines. It is perceived by many that gamification can improve the self-management experience of people with chronic illnesses. This paper discusses the validation of a framework (called The Wheel of Sukr) that was introduced to achieve this goal. This research aims to (1) discuss a gamification framework targeting the self-management of chronic illnesses and (2) validate the framework by diabetic patients, medical professionals, and game experts. A mixed-method approach was used to validate the framework. Expert interviews (N=8) were conducted in order to validate the themes of the framework. Additionally, diabetic participants completed a questionnaire (N=42) in order to measure their attitudes toward the themes of the framework. The results provide a validation of the framework. This indicates that gamification might improve the self-management of chronic illnesses, such as diabetes. Namely, the eight themes in the Wheel of Sukr (fun, esteem, socializing, self-management, self-representation, motivation, growth, sustainability) were perceived positively by 71% (30/42) of the participants with P value <.001. In this research, both the interviews and the questionnaire yielded positive results that validate the framework (The Wheel of Sukr). Generally, this study indicates an overall acceptance of the notion of gamification in the self-management of diabetes.

  20. 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…

  1. Perceived Value of Academic and Physical Tasks: A Comparison of Healthy and Chronically Ill Children.

    ERIC Educational Resources Information Center

    Miller, Christy L.

    Questionnaires were completed by parents and fifth- and sixth-grade children (1,180 healthy, 151 chronically ill, 54 hyperactive, and 54 with severe vision or hearing impairments). The instruments were designed to measure three types of value: utility value (how important success at a task is for achieving future goals); attainment value (the…

  2. 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…

  3. 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…

  4. Issues in Sexuality 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 sexuality issues regarding adolescents and young adults with disabilities and chronic illnesses. The resources are grouped into the following categories: psychosocial development (23 references); attitudes and knowledge (11 references); sex education (34 references); sexual abuse (four references);…

  5. "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,…

  6. 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…

  7. 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…

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

    PubMed

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

    2012-01-01

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

  9. Parents' perceptions of a patient portal for managing their child's chronic illness.

    PubMed

    Britto, Maria T; Hesse, Elizabeth A; Kamdar, Opal J; Munafo, Jennifer Knopf

    2013-07-01

    Through interviews, we sought to describe parents' perceptions of a patient portal for the management of their child's chronic illness. Parents perceive patient portals as beneficial, providing easier communication with care providers, convenience, a sense of control, reduced anxiety, and reassurance. Future research should aim to quantitate these benefits. Copyright © 2013 Mosby, Inc. All rights reserved.

  10. 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…

  11. 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…

  12. Chronic Physical Illness and Mental Health in Children. Results from a Large-Scale Population Study

    ERIC Educational Resources Information Center

    Hysing, Mari; Elgen, Irene; Gillberg, Christopher; Lie, Stein Atle; Lundervold, Astri J.

    2007-01-01

    Background: The aim of the present study was to evaluate the sensitivity and specificity of the Strengths and Difficulties Questionnaire (SDQ) in detecting emotional and behavioural problems among children with chronic illness (CI). Methods: Parents and teachers of a population of primary school children in Norway (n = 9430) completed a…

  13. Problem Behavior in Children of Chronically Ill Parents: A Meta-Analysis

    ERIC Educational Resources Information Center

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

    2010-01-01

    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…

  14. 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…

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

    ERIC Educational Resources Information Center

    Chen, Cliff Yung-Chi

    2016-01-01

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

  16. The Role of Adult Children in Helping Chronically Ill Hospitalized Parents.

    ERIC Educational Resources Information Center

    Hall, Barry L.

    1989-01-01

    Results of a study of the types of help provided by 27 adult children to chronically ill parents demonstrated that despite profound stress and strain, they still provided a range of help within the formal structures of the hospital. Dependence was a weak indicator and stress was a stronger indicator of the adult child's helping behavior. (JOW)

  17. 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

  18. "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,…

  19. 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,…

  20. Come Together: The Experience of Families of Children with Severe Disabilities or Chronic Illness.

    ERIC Educational Resources Information Center

    Knoll, James A.

    This paper presents results from interviews with 48 New York families of children with severe disabilities or chronic illnesses who were served by Sick Kids (need) Involved People (SKIP) of New York, Incorporated, a case management and advocacy service. The report is divided into sections on the families and their children, daily routine,…

  1. 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…

  2. Perceived Value of Academic and Physical Tasks: A Comparison of Healthy and Chronically Ill Children.

    ERIC Educational Resources Information Center

    Miller, Christy L.

    Questionnaires were completed by parents and fifth- and sixth-grade children (1,180 healthy, 151 chronically ill, 54 hyperactive, and 54 with severe vision or hearing impairments). The instruments were designed to measure three types of value: utility value (how important success at a task is for achieving future goals); attainment value (the…

  3. 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…

  4. Adolescent self-regulation as a foundation for chronic illness self-management.

    PubMed

    Lansing, Amy Hughes; Berg, Cynthia A

    2014-01-01

    To illustrate adolescent self-regulation as a foundation for both individual and interpersonal processes in adolescent chronic illness self-management. Literature review. 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. 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. © The Author 2014. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

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

    PubMed Central

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

    2013-01-01

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

  6. Attitudes toward Life and Death in Suicidal, Normal, and Chronically Ill Children: An Extended Replication.

    ERIC Educational Resources Information Center

    Orbach, Israel; And Others

    1984-01-01

    Evaluated attitudes toward life and death held by suicidal, chronically ill, and normal children (N=84) by obtaining answers to questions about fairy tales representing attraction or repulsion by life or death. Each group had a unique response profile that differentiated it from the others. (BH)

  7. Gamifying Self-Management of Chronic Illnesses: A Mixed-Methods Study

    PubMed Central

    Wills, Gary; Ranchhod, Ashok

    2016-01-01

    Background Self-management of chronic illnesses is an ongoing issue in health care research. Gamification is a concept that arose in the field of computer science and has been borrowed by many other disciplines. It is perceived by many that gamification can improve the self-management experience of people with chronic illnesses. This paper discusses the validation of a framework (called The Wheel of Sukr) that was introduced to achieve this goal. Objective This research aims to (1) discuss a gamification framework targeting the self-management of chronic illnesses and (2) validate the framework by diabetic patients, medical professionals, and game experts. Methods A mixed-method approach was used to validate the framework. Expert interviews (N=8) were conducted in order to validate the themes of the framework. Additionally, diabetic participants completed a questionnaire (N=42) in order to measure their attitudes toward the themes of the framework. Results The results provide a validation of the framework. This indicates that gamification might improve the self-management of chronic illnesses, such as diabetes. Namely, the eight themes in the Wheel of Sukr (fun, esteem, socializing, self-management, self-representation, motivation, growth, sustainability) were perceived positively by 71% (30/42) of the participants with P value <.001. Conclusions In this research, both the interviews and the questionnaire yielded positive results that validate the framework (The Wheel of Sukr). Generally, this study indicates an overall acceptance of the notion of gamification in the self-management of diabetes. PMID:27612632

  8. 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

  9. Conceptualizing autonomy in the context of chronic physical illness: relating philosophical theories to social scientific perspectives.

    PubMed

    Mars, Godelief M J; Kempen, Gertrudis I J M; Widdershoven, Guy A M; Janssen, Peter P M; van Eijk, Jacques T M

    2008-07-01

    The aim of this article is to conceptualize autonomy in the context of chronic physical illness. To this end, we compare and contrast a selection of contemporary philosophical theories of autonomy with social scientific perspectives on chronic illness, particularly models of disability and symbolic interactionism. The philosophical theories mainly depart from a positive conceptualization of autonomy, which involves actively shaping one's life and identifying with fundamental values. This conceptualization is preferred over a negative conceptualization, which defines autonomy as non-interference, for its compatibility with social models of disability and with the assumption that people are interdependent. Interference may disable, but also enable people with a chronic illness to shape their lives. What matters is that people can realize what they want to realize. We suggest that, in the context of chronic physical illness, autonomy might be conceptualized as correspondence between what people want their lives to be like and what their lives are actually like. Disturbed autonomy might be restored either by expanding opportunities to arrange life or by adjusting how one wants life to be arranged. The grounds for the latter approach might be questioned, first, if people have not adjusted what they want carefully, and second, if reorganization of the material and social environment would have made it unnecessary to adjust one's arrangement of life.

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

    PubMed Central

    2014-01-01

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

  11. 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.

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

    ERIC Educational Resources Information Center

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

    2015-01-01

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

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

    PubMed

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

    2011-03-01

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

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

    ERIC Educational Resources Information Center

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

    2015-01-01

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

  15. Chronically Ill Midlife and Older Lesbians, Gay Men, and Bisexuals and Their Informal Caregivers: The Impact of the Social Context

    PubMed Central

    Fredriksen-Goldsen, Karen I.; Kim, Hyun-Jun; Muraco, Anna; Mincer, Shawn

    2010-01-01

    With the exception of HIV care, informal caregiving of chronically ill lesbian, gay, and bisexual (LGB) adults has received very limited attention in the extensive caregiving literature. This article reports on research that considered the social context of care and a dyadic caregiving approach for 36 chronically ill LGB adults ages 50 and older and their informal caregivers. In this study, both discrimination and relationship quality were associated with depression among chronically ill LGB adults and their caregivers. Furthermore, preliminary findings suggested that relationship quality moderates the impact of discrimination as a risk factor for depression in chronically ill LGB adults. The authors discuss the implications of these findings for social policy and future research. Given the changing demographics in the United States with the aging of the baby boomers, as well as an increase in chronic illness, fostering better understanding of caregiving across diverse sexualities and families is critical. PMID:20436796

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

    PubMed

    Cramm, Jane Murray; Nieboer, Anna Petra

    2012-06-01

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

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

    PubMed

    Boot, Cécile R L; Koppes, Lando L J; van den Bossche, Seth N J; Anema, Johannes R; van der Beek, Allard J

    2011-06-01

    To improve work participation in individuals with a chronic illness, insight into the role of work-related factors in the association between health and sick leave is needed. The aim of this study was to gain insight into the contribution of work limitations, work characteristics, and work adjustments to the association between health and sick leave in employees with a chronic illness. All employees with a chronic illness, between 15 and 65 years of age (n = 7,748) were selected from The Netherlands Working Conditions Survey. The survey included questions about perceived health, working conditions, and sick leave. Block-wise multivariate linear regression analyses were performed and, in different blocks, limitations at work, work characteristics, and work adjustments were added to the model of perceived health status. Changes in regression coefficient (B) (%) were calculated for the total group and for sub-groups per chronic illness. When work limitations were added to the model, the B between health and sick leave decreased by 18% (5.0 to 4.1). Adding work characteristics did not decrease the association between health and sick leave, but the B between work limitations and sick leave decreased by 14%, (5.3 to 4.5). When work adjustments were added to the model, the Bs between sick leave and work limitations and work characteristics changed from 4.5 to 3.4 for work limitations and from 2.1 to 1.9 for temporary contract and from -0.8 to -1.0 for supervisor support. The association between health and sick leave was explained by limitations at work, work characteristics, and work adjustments. Paying more attention to work limitations, characteristics and adjustments offers opportunities to reduce the negative consequences of chronic illness.

  18. [Social inequality and perceived quality of doctor-patient relationship among the chronically ill].

    PubMed

    Vonneilich, N; Altenhöner, T; Böcken, J; von dem Knesebeck, O

    2011-04-01

    Several recent German studies indicate an association between social inequality and quality of health care, i.e., patients with a low socioeconomic position receive lower quality care than patients with a high position. In this study, we investigate whether two indicators of social inequality (education and income) are associated with the perceived quality of the doctor-patient relationship among chronically ill men and women. Data basis is the TNS Health Care Access Panel (N=27 049). For the analyses chronically ill respondents were selected from the sample (N=12 343). In a multiple logistic regression analysis, odds ratios were calculated separately for men and women and for three age groups (18-30, 31-60, 61 years and older). We used three indicators for measuring the quality in the doctor-patient relationship: trust in physician, information received from the physician and participation in the decision-making process. Results show that income and education are consistently though weakly associated with the perceived quality of the doctor-patient relationship. Among chronically ill men and women with comparatively low income and educational level odds for rating the perceived quality of health care as suboptimal are slightly higher. This is especially true for the group of old chronically ill persons (61 years and older). Social inequality is associated with perceived quality of health care among chronically ill older men and women in Germany. These inequalities in health care can be explained by patient factors (e.g., information seeking, participation seeking) and physician related factors (e.g., providing information). © Georg Thieme Verlag KG Stuttgart · New York.

  19. Influence of a computer intervention on the psychological status of chronically ill rural women: preliminary results.

    PubMed

    Hill, Wade; Weinert, Clarann; Cudney, Shirley

    2006-01-01

    Adaptation to chronic illness is a lifelong process presenting numerous psychological challenges. It has been shown to be influenced by participating in support groups. Rural women with chronic illness face additional burdens as access to information, healthcare resources, and sources of support are often limited. Developing virtual support groups and testing the effects on psychosocial indicators associated with adaptation to chronic illness may help remove barriers to adaptation. To examine the effects of a computer-delivered intervention on measures of psychosocial health in chronically ill rural women including social support, self-esteem, empowerment, self-efficacy, depression, loneliness, and stress. An experimental design was used to test a computer-delivered intervention and examine differences in psychosocial health between women who participated in the intervention (n = 44) and women in a control group (n = 56). Differences between women who participated in the intervention and controls were found for self-esteem, F(1,98) = 5.97, p =.016; social support, F(1,98) = 4.43, p =.038; and empowerment, F(1,98) = 6.06, p =.016. A comparison of means for depression, loneliness, self-efficacy, and stress suggests that differences for other psychosocial variables are possible. The computer-based intervention tested appears to result in improved self-esteem, social support, and empowerment among rural women with chronic illness. Descriptive but nonsignificant differences were found for other psychosocial variables (depression, loneliness, self-efficacy, and stress); women who participated in the intervention appeared to improve more than women in the control group.

  20. Factors Which Influence Owners When Deciding to Use Chemotherapy in Terminally Ill Pets

    PubMed Central

    Williams, Jane; Phillips, Catherine; Byrd, Hollie Marie

    2017-01-01

    Simple Summary Cancer is as common amongst pets as it in humans. Chemotherapy can be integrated into treatment regimes for terminally ill pets to attempt to shrink tumours to extend life expectancy, but it does not cure cancer and it can have negative side effects including vomiting, depression and behavioral changes. To date, little research has been undertaken to explore owners’ decisions whether or not to treat their animals with chemotherapy. Seventy-eight dog and cat owners completed an online questionnaire to determine if they would opt for chemotherapy if their pet was diagnosed with cancer, and asked how they thought their pet’s quality of life would be affected. Fifty-eight percent of respondents would not use chemotherapy largely due to their previous experience of it. Seventy-two percent over estimated pet survival time post chemotherapy, with most people believing it would lead to remission or a cure. Owners expected their pets to be less active, sleep more and play less, reducing their quality of life. Common side effects associated with chemotherapy were not rated as acceptable. The results suggest pet owners would benefit from an increased understanding of the positive and negative impacts of chemotherapy when initially discussing treatment options with the veterinary team. Abstract Chemotherapy is a commonly integrated treatment option within human and animal oncology regimes. Limited research has investigated pet owners’ treatment decision-making in animals diagnosed with malignant neoplasia. Dog and cat owners were asked to complete an online questionnaire to elucidate factors which are key to the decision making process. Seventy-eight respondents completed the questionnaire in full. Fifty-eight percent of pet owners would not elect to treat pets with chemotherapy due to the negative impact of the associated side effects. Seventy-two percent of respondents over estimated pet survival time post chemotherapy, indicating a general perception

  1. Recruiting terminally ill patients into non-therapeutic oncology studies: views of health professionals.

    PubMed

    Kleiderman, Erika; Avard, Denise; Black, Lee; Diaz, Zuanel; Rousseau, Caroline; Knoppers, Bartha Maria

    2012-12-05

    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. 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. 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. This paper aims to contribute to debates on the overall

  2. Effects of dignity therapy on terminally ill patients: a systematic review.

    PubMed

    Donato, Suzana Cristina Teixeira; Matuoka, Jéssica Yumi; Yamashita, Camila Cristófero; Salvetti, Marina de Goés

    2016-01-01

    Analyzing the evidence of the effects of dignity therapy onterminally ill patients. A Systematic review of the literature conducted using the search strategy in six databases. Inclusion criteria were primary studies, excluding literature reviews (systematic or not) and conceptual articles. Ten articles were analyzed regarding method, results and evidence level. Dignity therapy improved the sense of meaning andpurpose, will to live, utility, quality of life, dignity and family appreciationin studies with a higher level of evidence. The effects are not well established in relation to depression, anxiety, spirituality and physical symptoms. Studies with a moderate to high level of evidence have shown increased sense of dignity, will to live and sense of purpose. Further studies should be developed to increase knowledge about dignity therapy. Analisar as evidências sobre os efeitos da terapia da dignidade para pacientes em fase terminal de vida. Revisão sistemática da literatura realizada em seis bases de dados na estratégia de busca. Os critérios de inclusão foram estudos primários, excluindo-se revisões da literatura (sistemáticas ou não) e artigos conceituais. Dez artigos foram analisados quanto ao método, aos resultados e nível de evidência. Nos estudos com maior nível de evidência, a terapia da dignidade melhorou o senso de significado, propósito, vontade de viver, utilidade, qualidade de vida, dignidade e apreciação familiar.Os efeitos não estão bem estabelecidos em relação à depressão, ansiedade, espiritualidade e aos sintomas físicos. Os estudos de nível de evidência de moderado a alto demonstraram aumento do senso de dignidade, vontade de viver e senso de propósito. Mais estudos devem ser desenvolvidos para ampliar o conhecimento sobre a terapia da dignidade.

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

    PubMed

    Kobau, Rosemarie; Zack, Matthew M

    2013-11-01

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

  4. 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

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

    PubMed

    Niazi, Asfandyar Khan; Niazi, Shaharyar Khan

    2011-01-01

    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. 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. 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. 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. 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.

  6. 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

  7. Male subfertility as a chronic illness: the role of adaptive challenges.

    PubMed

    Stevenson, Eleanor L; McEleny, Kevin R

    2017-09-01

    Male factor infertility (MFI) is extremely common, often with several associated chronic health conditions. Because a man's fertility assessment may be their first contact with health services, the health care team has a responsibility to act as male health advocates to ensure comprehensive care. The diagnosis of subfertility allows a broader view of these men as patients with a chronic illness who have complex health needs. Because of the associated complexity of care following evaluation, there needs to be new approach in how men affected by MFI should be managed long term. In this commentary, we propose that the Adaptive Leadership Framework model for Chronic Illness is a suitable vehicle to use for management of the MFI patient's journey towards optimized health.

  8. Application of Orem's Self-Care Deficit Theory to the pediatric chronically ill population.

    PubMed

    Haas, D L

    1990-01-01

    The conditions under which children with long-term chronic health problems are cared for have changed dramatically in the past decade. These children are more often living longer and being cared for at home by their families and nursing supports. An effective tool allowing nurses to systematically assess, plan, implement, and evaluate the care needs of these children is a nursing theory. Orem's (1985) self- or dependent-care deficit theory is a useful basis from which the care of the chronically ill pediatric population can be planned. Attention is given to a caring relationship in which there is a dependent person in need of care and an individual who serves as that dependent person's agent of care. This article discusses several of the major concepts of the self- or dependent-care deficit theory and how it can be applied to guide clinical nursing practice aimed at meeting the care demands of the pediatric chronically ill population and their families.

  9. Antibody deficiency in chronic rhinosinusitis: epidemiology and burden of illness.

    PubMed

    Ocampo, Christopher J; Peters, Anju T

    2013-01-01

    A subset of patients with chronic rhinosinusitis (CRS) has refractory disease. The risk factors for refractory CRS include atopy, a disrupted mucociliary transport system, medical conditions affecting the sinonasal tract mucosa, and immunodeficiency. We review four primary immunodeficiencies reported in individuals with CRS: common variable immune deficiency (CVID), selective IgA deficiency, IgG subclass deficiency, and specific antibody deficiency. We also review treatment options for individuals with both CRS and a concomitant immune defect. There is a high prevalence of CRS in individuals with CVID and selective IgA deficiency. While many reports describe IgG subclass deficiency in individuals with CRS, the clinical relevance of this is unclear. Specific antibody deficiency may play a more significant role in the pathogenesis of refractory CRS. Screening for a primary immunodeficiency should be part of the diagnostic workup of refractory CRS, as its identification may allow for more effective long-term therapeutic options.

  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. Copyright © 2014 Elsevier España, S.L. All rights reserved.

  11. Antibody deficiency in chronic rhinosinusitis: Epidemiology and burden of illness

    PubMed Central

    Ocampo, Christopher J.

    2013-01-01

    Background: A subset of patients with chronic rhinosinusitis (CRS) has refractory disease. The risk factors for refractory CRS include atopy, a disrupted mucociliary transport system, medical conditions affecting the sinonasal tract mucosa, and immunodeficiency. Methods: We review four primary immunodeficiencies reported in individuals with CRS: common variable immune deficiency (CVID), selective IgA deficiency, IgG subclass deficiency, and specific antibody deficiency. We also review treatment options for individuals with both CRS and a concomitant immune defect. Results: There is a high prevalence of CRS in individuals with CVID and selective IgA deficiency. While many reports describe IgG subclass deficiency in individuals with CRS, the clinical relevance of this is unclear. Specific antibody deficiency may play a more significant role in the pathogenesis of refractory CRS. Conclusion: Screening for a primary immunodeficiency should be part of the diagnostic workup of refractory CRS, as its identification may allow for more effective long-term therapeutic options. PMID:23406598

  12. Subjective concepts of chronically ill patients using distant healing.

    PubMed

    Güthlin, Corina; Anton, Andreas; Kruse, Jan; Walach, Harald

    2012-03-01

    Distant healing procedures consist of benevolent intentions, often taking the form of prayers for a patient. Despite inconclusive evidence regarding distant healing, prayers are a widespread health-related technique. We studied subjective concepts of distant healing in 17 patients suffering from chronic fatigue syndrome and multiple chemical sensitivity who were given distant healing during a randomized controlled trial. We applied reconstructive interview analysis when analyzing the results. The overall theme was the tension between mainstream medicine and the immaterial healing procedure. Several components highlighted this tension: (a) patterns of legitimizing the use of distant healing, (b) distant healing and the social setting, (c) integrating distant healing into their belief system, and (d) reconstruction of effects by means of hindsight. The interviews showed that patients felt the need to legitimize having tried distant healing. They had to bear the full ambiguity of biomedicine being in competition with distant healing, though also experiencing distant healing as giving support.

  13. Is the clock ticking for terminally ill patients in Israel? Preliminary comment on a proposal for a bill of rights for the terminally ill.

    PubMed

    Barilan, Y M

    2004-08-01

    This paper presents and discusses a recent Israeli proposal to legislate on the rights of the dying patient. A gap exists between elitist biases of the committee proposing the law, and popular values and sentiments. The proposed law divides the dying patients into two groups: "those who wish to go on living" and "those who wish to die". The former will have a right to life prolonging extraordinary care. It is not clear who would foot the bill for this care. Also it is hard to see how this munificence could fail to discriminate against all other patients. Both the secular ethicists and the rabbis involved in drawing up the proposal accepted the assumption that it is good for some terminal patients to die. The rabbis objected, however, to direct and active interventions that shorten life. The solution arrived at was to install timers in the ventilators so as to allow them to expire automatically unless the patient wishes for their resetting.

  14. Complementary and alternative medical therapy utilization by people with chronic fatiguing illnesses in the United States

    PubMed Central

    Jones, James F; Maloney, Elizabeth M; Boneva, Roumiana S; Jones, Ann-Britt; Reeves, William C

    2007-01-01

    Background Chronic fatiguing illnesses, including chronic fatigue syndrome (CFS), pose a diagnostic and therapeutic challenge. Previous clinical reports addressed the utilization of health care provided to patients with CFS by a variety of practitioners with other than allopathic training, but did not examine the spectrum of complementary and alternative medicine (CAM) therapies used. This study was designed to measure CAM therapy use by persons with fatiguing illnesses in the United States population. Methods During a random-digit dialing survey to estimate the prevalence of CFS-like illness in urban and rural populations from different geographic regions of the United States, we queried the utilization of CAM including manipulation or body-based therapies, alternative medical systems, mind-body, biologically-based, and energy modalities. Results Four hundred forty fatigued and 444 non-fatigued persons from 2,728 households completed screening. Fatigued subjects included 53 persons with prolonged fatigue, 338 with chronic fatigue, and 49 with CFS-like illness. Mind-body therapy (primarily personal prayer and prayer by others) was the most frequently used CAM across all groups. Among women, there was a significant trend of increasing overall CAM use across all subgroups (p-trend = 0.003). All categories of CAM use were associated with significantly poorer physical health scores, and all but one (alternative medicine systems) were associated with significantly poorer mental health scores. People with CFS-like illness were significantly more likely to use body-based therapy (chiropractic and massage) than non-fatigued participants (OR = 2.52, CI = 1.32, 4.82). Use of body-based therapies increased significantly in a linear trend across subgroups of non-fatigued, prolonged fatigued, chronic fatigued, and CFS-like subjects (p-trend = 0.002). People with chronic fatigue were also significantly more likely to use body-based therapy (OR = 1.52, CI = 1.07, 2.16) and mind

  15. Does trust in health care influence the use of complementary and alternative medicine by chronically ill people?

    PubMed Central

    van den Brink-Muinen, A; Rijken, PM

    2006-01-01

    Background People's trust in health care and health care professionals is essential for the effectiveness of health care, especially for chronically ill people, since chronic diseases are by definition (partly) incurable. Therefore, it may be understandable that chronically ill people turn to complementary and alternative medicine (CAM), often in addition to regular care. Chronically ill people use CAM two to five times more often than non-chronically ill people. The trust of chronically ill people in health care and health care professionals and the relationship of this with CAM use have not been reported until now. In this study, we examine the influence of chronically ill people's trust in health care and health care professionals on CAM use. Methods The present sample comprises respondents of the 'Panel of Patients with Chronic Diseases' (PPCD). Patients (≥25 years) were selected by GPs. A total of 1,625 chronically ill people were included. Trust and CAM use was measured by a written questionnaire. Statistical analyses were t tests for independent samples, Chi-square and one-way analysis of variance, and logistic regression analysis. Results Chronically ill people have a relatively low level of trust in future health care. They trust certified alternative practitioners less than regular health care professionals, and non-certified alternative practitioners less still. The less trust patients have in future health care, the more they will be inclined to use CAM, when controlling for socio-demographic and disease characteristics. Conclusion Trust in future health care is a significant predictor of CAM use. Chronically ill people's use of CAM may increase in the near future. Health policy makers should, therefore, be alert to the quality of practising alternative practitioners, for example by insisting on professional certification. Equally, good quality may increase people's trust in public health care. PMID:16848897

  16. Epidemiology and treatment of depression in patients with chronic medical illness

    PubMed Central

    J. Katon, Wayne.

    2011-01-01

    There is a bidirectional relationship between depression and chronic medical disorders. The adverse health risk behaviors and psychobiological changes associated with depression increase the risk for chronic medical disorders, and biological changes and complications associated with chronic medical disorders may precipitate depressive episodes. Comorbid depression is associated with increased medical symptom burden, functional impairment, medical costs, poor adherence to self-care regimens, and increased risk of morbidity and mortality in patients with chronic medical disorders. Depression may worsen the course of medical disorders because of its effect on proinflammatory factors, hypothalamic-pituitary axis, autonomic nervous system, and metabolic factors, in addition to being associated with a higher risk of obesity, sedentary lifestyle, smoking, and poor adherence to medical regimens. Both evidence-based psychotherapies and antidepressant medication are efficacious treatments for depression. Collaborative depression care has been shown to be an effective way to deliver these treatments to large primary care populations with depression and chronic medical illness. PMID:21485743

  17. Risk factors for respiratory syncytial virus illness among patients with chronic obstructive pulmonary disease.

    PubMed

    Mehta, Jyotsna; Walsh, Edward E; Mahadevia, Parthiv J; Falsey, Ann R

    2013-06-01

    Respiratory syncytial virus (RSV), although not typically considered an important pathogen in adults, may cause acute exacerbation of chronic obstructive pulmonary disease (COPD). It is unclear which COPD patients are at highest risk for developing serious RSV illness. Our objective was to identify risk factors for RSV illness among adult patients with COPD. We conducted a pooled analysis of data from COPD patients in 2 previously published longitudinal studies that examined RSV infection in high risk adults for ≤ 2 RSV seasons. Risk factors for RSV illness studied included age, sex, race, smoking status, exposure to children, home oxygen use, inhaled or oral steroid use, instrumental activities of daily living scores, and co-morbid conditions. Outcomes studied included symptomatic and medically attended RSV illness. Logistic regression was used to identify significant risk factors for RSV illness among older adults with COPD. Among 379 patients with COPD, the rate of symptomatic RSV illness was 11.1% (42/379); almost half (20/42) of whom required medical attention. In multivariable analyses, congestive heart failure (odds ratio [OR] = 4.18; 95% CI: 1.38, 12.69) and exposure to children (OR = 2.38; 95% CI: 1.03, 5.51) were risk factors for symptomatic RSV illness. Congestive heart failure (OR = 4.16; 95% CI: 1.02, 17.01) was the only significant risk factor for developing medically attended RSV illness. Exposure to children and congestive heart failure are risk factors for RSV illness among adult patients with COPD. Future prospective, well-designed studies are needed to corroborate these findings and examine other risk factors, including history of exacerbations.

  18. Factors associated with recurrent hospitalization in chronically ill children and adolescents.

    PubMed

    Kelly, A F; Hewson, P H

    2000-02-01

    To determine factors associated with recurrent hospitalization in children with chronic illnesses in the Barwon Region. Patients with four or more admissions to the Geelong Hospital children's ward over a 12-month period were identified. Their records were reviewed and the opinions of involved staff (medical, nursing, psychiatry, psychology, and social work) were sought. Multidisciplinary discussions were held to identify factors precipitating or maintaining the need for hospitalization. The numbers, illnesses and profiles of those admitted recurrently were compared with the data from the Barwon Paediatric Consultation Profile from the same period, and with those patients seen by the local counselling service for young people with chronic illnesses. Twenty-seven children had four or more admissions over the 12 months; these represent 0.05% of the child population regionally, or 2% of those with chronic illness. They account for 8.7% of hospital admissions and 16% of inpatient days. Two-thirds (18/27) had major psychosocial issues largely responsible for their admissions. A checklist was formulated of important medical, family, social, psychological, developmental, and institutional considerations. The most frequently identified psychosocial issues were medical dependency, psychological or medical problems affecting other family members, family and medical disparity regarding the treatment agenda, the lack of more intensive community supports, and medical controversy regarding best management. Ongoing medicalization and medical dependency, driven both by staff and families, can perpetuate recurrent hospitalization. Further awareness and training in these issues and development of community resources will be necessary if this process is to be changed.

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

    PubMed

    Vélez-Vélez, Esperanza; Bosch, Ricardo J

    2016-04-01

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

  20. Proposal for Development of EBM-CDSS (Evidence-based Clinical Decision Support System) to Aid Prognostication in Terminally Ill Patients

    DTIC Science & Technology

    2012-10-01

    R. Rhodes, and S. Connor, Timing of Referral to Hospice and Quality of Care : Length of Stay and Bereaved Family Members’ Perceptions of the Timing...Support (EBM-CDSS) system and make it available at the point of care to improve prognostication of the life expectancy of terminally ill patients to...of the life expectancy in terminally ill patients to improve referral of patients to hospice at the point of care . In addition, the EBM-CDSS will be