Science.gov

Sample records for illness chronic hiv

  1. 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

  2. A Multidimensional Conceptual Framework for Understanding HIV/AIDS as a Chronic Long-Term Illness

    ERIC Educational Resources Information Center

    Mitchell, Christopher G.; Linsk, Nathan L.

    2004-01-01

    New treatment advances have radically altered the course of HIV illness and created new challenges for HIV-affected individuals, families, and communities. This article provides a conceptual framework for understanding HIV in the multiple contexts of the client's culture, strengths, life course, and biomedical progression. The article concludes…

  3. A Multidimensional Conceptual Framework for Understanding HIV/AIDS as a Chronic Long-Term Illness

    ERIC Educational Resources Information Center

    Mitchell, Christopher G.; Linsk, Nathan L.

    2004-01-01

    New treatment advances have radically altered the course of HIV illness and created new challenges for HIV-affected individuals, families, and communities. This article provides a conceptual framework for understanding HIV in the multiple contexts of the client's culture, strengths, life course, and biomedical progression. The article concludes…

  4. A multidimensional conceptual framework for understanding HIV/AIDS as a chronic long-term illness.

    PubMed

    Mitchell, Christopher G; Linsk, Nathan L

    2004-07-01

    New treatment advances have radically altered the course of HIV illness and created new challenges for HIV-affected individuals, families, and communities. This article provides a conceptual framework for understanding HIV in the multiple contexts of the client's culture, strengths, life course, and biomedical progression. The article concludes with a discussion of HIV prevention and treatment adherence as key focal points for social workers and their clients.

  5. 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 ...

  6. The illness narratives of men involved in the criminal justice system: A study of health behaviors, chronic conditions and HIV/AIDS

    PubMed Central

    Valera, Pamela; Kratz, Molly

    2014-01-01

    Summary Former inmates encounter a variety of challenges when returning to their community, including poor health status and limited access to healthcare services. This qualitative study examined how former male inmates with chronic conditions perceived, understood, managed, and coped with their illnesses. Findings: The participants were Black and Puerto Rican, with a mean age of 47 years, who were interviewed within three years of their release. Participants reported at least one chronic condition, with 21 HIV-negative men using chaos narratives to depict their approach to disease management. Nine HIV-positive men used quest narratives to present their illnesses and were immediately linked to supportive services, enabling them to overcome the barriers to community reintegration. Applications: Health interventions in the area of forensic social work ought to focus on conducting Medicaid outreach and enrollment efforts prior to correctional facility discharge. PMID:25419175

  7. 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

  8. 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…

  9. 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…

  10. 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.

  11. 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"?

  12. 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, ...

  13. Income and employment of people living with combined HIV/AIDS, chronic mental illness, and substance abuse disorders.

    PubMed

    Conover, Christopher J; Arno, Peter; Weaver, Marcia; Ang, Alfonso; Ettner, Susan L

    2006-06-01

    This paper examines the labor market outcomes of HIV triply-diagnosed adults having a combination of HIV, mental illness and substance abuse problems. We sought to determine the sources of money income for HIV triply diagnosed adults (public or private), receipt of transfer income (e.g., welfare) and financial support from others. We further sought to ascertain their employment status and analyze the characteristics associated with full- and part-time employment. We use self-reported money income during the past 30 days and self-reported employment status. We calculate earnings losses due to illness by subtracting self-reported earnings from average earnings for all U.S. workers based on 5-year age and gender categories. We provide descriptive statistics to show how income and employment vary by patient characteristics and logistic regression analysis to examine correlates of income and employment. Average income is below the poverty level for single individuals, with more than two-thirds coming from public income sources. The likelihood of receiving disability/retirement income was lower among those with the worst mental health (RR=0.80; 95% CI=0.64, 0.97). Blacks were more likely than others to rely on public assistance (RR=1.24; 95% CI=1.02, 1.55) and married individuals were less likely (RR=0.60; 95% CI=0.41, 0.79). While most private income comes from employment, less than 15 percent of this population is employed full- or part-time. On a monthly basis, the average individual in our sample lost $2,726 in income when compared to the earnings of individuals of the same age and sex in the general population. The relative probability of current full-time/part-time employment was lower among females (RR=0.56; 95% CI=0.34, 0.83); such employment also was lower among those in the worst physical health (RR=0.39; 95% CI=0.26, 0.65) and those in moderate physical health (RR=0.55; 95% CI=0.34, 0.81) relative to those in the best physical health. This population

  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. '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.

  17. [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.

  18. 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

  19. Relationship of chronic hepatitis C infection to rates of AIDS-defining illnesses in a Canadian cohort of HIV seropositive individuals receiving highly active antiretroviral therapy.

    PubMed

    Raboud, J; Anema, A; Su, D; Klein, M B; Zakaryan, A; Swan, T; Palmer, A; Hosein, S; Loutfy, M R; Machouf, N; Montaner, J S G; Rourke, S B; Tsoukas, C; Hogg, R S; Cooper, C

    2012-01-01

    The influence of chronic hepatitis C virus (HCV) infection on the risk, timing, and type of AIDS-defining illnesses (ADIs) is not well described. To this end, rates of ADIs were evaluated in a Canadian cohort of HIV seropositive individuals receiving highly active antiretroviral therapy (HAART). ADIs were classified into 6 Centers for Disease Control and Prevention (CDC)-defined etiological subgroups: non-Hodgkin lymphoma, viral infection, bacterial infection, HIV-related disease, protozoal infection, and mycotic infection. Generalized estimating equation (GEE) Poisson regression models were used to estimate the effect of HCV on rates of ADIs after adjusting for covariates. Among 2,706 HAART recipients, 768 (28%) were HCV coinfected. Rates of all ADIs combined and of bacterial infection, HIV-related disease, and mycotic infection were increased in HCV-coinfected persons and among those with CD4 counts <200 cells/mm3 HCV was associated with an increased risk of ADIs (rate ratio [RR], 1.38; 95% CI, 1.01-1.88) and a 2-fold increased risk of mycotic infections (RR, 2.21; 95% CI, 1.35-3.62) in univariate analyses and after adjusting for age, baseline viral load, baseline CD4 count, and region of Canada. However, after further adjustment for HAART interruptions, HCV was no longer associated with an increased rate of ADIs overall (RR, 1.13; 95% CI, 0.80-1.59), but remained associated with an increased rate of mycotic infections (RR, 1.97, 95% CI, 1.08-3.61). Although HCV coin-fected individuals are at increased risk of developing ADIs overall, our analysis suggests that behavioral variables associated with HCV (including rates of retention on HAART), and not biological interactions with HCV itself, are primarily responsible.

  20. 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.

  1. Costs of care for people living with combined HIV/AIDS, chronic mental illness, and substance abuse disorders.

    PubMed

    Conover, Christopher J; Weaver, Marcia; Ang, Alfonso; Arno, Peter; Flynn, Patrick M; Ettner, Susan L

    2009-12-01

    To determine healthcare access and costs for triply diagnosed adults, we examined baseline data from the HIV/AIDS Treatment Adherence, Health Outcomes and Cost Study, a multi-site cohort study of HIV+ adults with co-occurring mental and substance abuse disorders conducted between 2000 and 2004. Baseline interviews were conducted with 1138 triply diagnosed adults in eight predominantly urban sites nationwide. A modified version of Structured Interview for DSM-IV Axis I Disorders (SCID) was used to assign Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) diagnoses for the preceding year. Utilization of a broad range of inpatient and outpatient services and medications over the preceding three months was patient-reported in face-to-face interviews. We then applied nationally representative unit costs to impute average monthly expenditures. We measured (poor) access to care during the three-month period by whether the patient had: (a) no outpatient medical visits; (b) at least one emergency room visit without an associated hospitalization; and (c) at least one hospitalization. At baseline, mean expenditures were $3880 per patient per month. This is nearly twice as high as expenditures for HIV/AIDS patients in general. Inpatient care (36%), medications (33%), and outpatient services (31%) each accounted for roughly one-third of expenditures. Expenditures varied by a factor of 2:1 among subgroups of patients, with those on Medicare or Medicaid, not in stable residences, or with poor physical health or high viral loads exhibiting the highest costs. Access to care was worse for women and those with low incomes, unstable residences, same-sex exposure, poor physical or mental health, and high viral loads. We conclude that HIV triply diagnosed adults account for roughly one-fifth of medical spending on HIV patients and that there are large variations in utilization/costs across patient subgroups. Realized access is good for many triply diagnosed

  2. 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…

  3. 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…

  4. 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…

  5. 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…

  6. 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.

  7. 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

  8. 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 -- ...

  9. 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…

  10. 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…

  11. 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

  12. A conceptual framework for understanding chronic pain in patients with HIV.

    PubMed

    Merlin, Jessica S; Zinski, Anne; Norton, Wynne E; Ritchie, Christine S; Saag, Michael S; Mugavero, Michael J; Treisman, Glenn; Hooten, W Michael

    2014-03-01

    Chronic pain is common in persons with HIV and is often associated with psychiatric illness and substance abuse. Current literature links psychiatric illness and substance abuse with worse HIV outcomes; however, the relationship of chronic pain, alone and in the context of psychiatric illness and substance abuse, to outcomes in HIV has not been described. To develop this new area of inquiry, we propose an adapted biopsychosocial framework specifically for chronic pain in HIV. This framework will describe these relationships and serve as a conceptual framework for future investigations.

  13. Many with Mental Illness Miss Out on HIV Tests

    MedlinePlus

    ... medlineplus.gov/news/fullstory_163139.html Many With Mental Illness Miss Out on HIV Tests Rates of infection ... Jan. 19, 2017 (HealthDay News) -- People with severe mental illness are only slightly more likely to be screened ...

  14. Utilization of mental health and substance abuse care for people living with HIV/AIDS, chronic mental illness, and substance abuse disorders.

    PubMed

    Weaver, Marcia R; Conover, Christopher J; Proescholdbell, Rae Jean; Arno, Peter S; Ang, Alfonso; Ettner, Susan L

    2008-04-01

    To examine the effects of race/ethnicity, insurance, and type of substance abuse (SA) diagnosis on utilization of mental health (MH) and SA services among triply diagnosed adults with HIV/AIDS and co-occurring mental illness (MI) and SA disorders. Baseline (2000 to 2002) data from the HIV/AIDS Treatment Adherence, Health Outcomes, and Cost Study. A multiyear cooperative agreement with 8 study sites in the United States. The Structured Clinical Interview for DSM-IV Axis I Disorders (SCID) was administered by trained interviewers to determine whether or not adults with HIV/AIDS had co-occurring MI and SA disorders. Subjects were interviewed in person about their personal characteristics and utilization of MH and SA services in the prior 3 months. Data on HIV viral load were abstracted from their medical records. Only 33% of study participants received concurrent treatment for MI and SA, despite meeting diagnostic criteria for both: 26% received only MH services, 15% received only SA services, and 26% received no services. In multinomial logistic analysis, concurrent utilization of MH and SA services was significantly lower among nonwhite and Hispanic participants as a group and among those who were not dependent on drugs and alcohol. Concurrent utilization was significantly higher for people with Veterans Affairs Civilian Health and Medical Program of the Uniformed Services (VA CHAMPUS) insurance coverage. Two-part models were estimated for MH outpatient visits and 3 SA services: (1) outpatient, (2) residential, and (3) self-help groups. Binary logistic regression was estimated for any use of psychiatric drugs. Nonwhites and Hispanics as a group were less likely to use 3 of the 5 services; they were more likely to attend SA self-help groups. Participants with insurance were significantly more likely to receive psychiatric medications and residential SA treatment. Those with Medicaid were more likely to receive MH outpatient services. Participants who were alcohol

  15. 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…

  16. Human rights, mental illness, and HIV: the Luthando Neropsychiatric HIV Clinic in Soweto, South Africa.

    PubMed

    Jonsson, Greg; Furin, Jennifer; Jeenah, Fatema; Moosa, M Y; Sivepersad, Reshmi; Kalafatis, Fran; Schoeman, Janine

    2011-12-15

    HIV is the leading infectious killer of adults in the world today and a majority of persons with HIV live in southern Africa. Mental illness is common among patients with HIV. Persons with HIV and mental illness, however, are often denied access to HIV treatment for a variety of reasons, including presumed non-adherence, potential drug interactions, and lack of coordinated care. The exclusion of the mentally ill from HIV care is a concerning human rights issue. This paper discusses some of the human rights issues in the care of patients with mental illness and HIV and describes a successful model for integrated care developed at the Luthando Neuropsychiatric HIV Clinic in Soweto, South Africa. The Luthando clinic has provided care to more than 500 patients and has been shown to be a successful model for other programs to improve HIV care among the mentally ill.

  17. 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

  18. [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.

  19. 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.

  20. 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

  1. 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)

  2. 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)

  3. 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)

  4. 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)

  5. 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…

  6. 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…

  7. 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

  8. 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.

  9. 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.

  10. 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…

  11. 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.

  12. HIV prevention advice for people with serious mental illness.

    PubMed

    Wright, Nicola; Akhtar, Athfah; Tosh, Graeme E; Clifton, Andrew V

    2016-09-09

    People with serious mental illness have rates of Human Immuno-deficiency Virus (HIV) infection higher than expected in the general population for the same demographic area. Despite this elevated prevalence, UK national strategies around sexual health and HIV prevention do not state that people with serious mental illness are a high risk group. However, a significant proportion in this group are sexually active and engage in HIV-risk behaviours including having multiple sexual partners, infrequent use of condoms and trading sex for money or drugs. Therefore we propose the provision of HIV prevention advice could enhance the physical and social well being of this population. To assess the effects of HIV prevention advice in reducing morbidity, mortality and preserving the quality of life in people with serious mental illness. We searched the Cochrane Schizophrenia Group's Trials Register (24 January 2012; 4 July 2016). We planned to include all randomised controlled trials focusing on HIV prevention advice versus standard care or comparing HIV prevention advice with other more focused methods of delivering care or information for people with serious mental illness. Review authors (NW, AC, AA, GT) independently screened search results and did not identify any studies that fulfilled the review's criteria. We did not identify any randomised studies that evaluated advice regarding HIV for people with serious mental illness. The excluded studies illustrate that randomisation of packages of care relevant to both people with serious mental illness and HIV risk are possible. Policy makers, clinicians, researchers and service users need to collaborate to produce guidance on how best to provide advice for people with serious mental illness in preventing the spread of HIV infection. It is entirely feasible that this could be within the context of a well-designed simple large randomised study.

  13. 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…

  14. 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…

  15. 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.

  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. 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

  18. Health Outcomes of HIV-Infected People with Mental Illness.

    PubMed

    Yehia, Baligh R; Stephens-Shield, Alisa J; Momplaisir, Florence; Taylor, Lynne; Gross, Robert; Dubé, Benoit; Glanz, Karen; Brady, Kathleen A

    2015-08-01

    Improving outcomes for people with HIV and mental illness will be critical to meeting the goals of the US National HIV/AIDS Strategy. In a retrospective analysis of the 2008-2010 cycles of the locally representative Philadelphia Medical Monitoring Project, we compared the proportions of HIV-infected adults with and without mental illness: (1) retained in care (≥2 primary HIV visits separated by ≥90 days in a 12-month period); (2) prescribed antiretroviral therapy (ART) at any point in a 12-month period; and (3) virally suppressed (HIV-1 RNA ≤200 copies/mL at the last measure in the 12-month period). Multivariable regression assessed associations between mental illness and the outcomes, adjusting for age, gender, race/ethnicity, insurance, alcohol abuse, injection drug use, CD4 count, and calendar year. Of 730 HIV-infected persons, representative of 9409 persons in care for HIV in Philadelphia, 49.0 % had mental illness. In adjusted analyses, there were no significant differences in retention (91.3 vs. 90.3 %; AOR 1.30, 95 % CI 0.63-2.56) and prescription of ART (83.2 vs. 88.7 %; AOR 0.79, 95 % CI 0.49-1.25) between those with and without mental illness. However, mentally ill patients were less likely to achieve viral suppression than those without mental illness (65.9 vs. 74.4 %; AOR 0.64, 95 % CI 0.46-0.90). These findings argue for the need to optimize ART adherence in this population.

  19. Health Outcomes of HIV-Infected People with Mental Illness

    PubMed Central

    Yehia, Baligh R.; Stephens-Shield, Alisa J.; Momplaisir, Florence; Taylor, Lynne; Gross, Robert; Dubé, Benoit; Glanz, Karen; Brady, Kathleen A.

    2015-01-01

    Improving outcomes for people with HIV and mental illness will be critical to meeting the goals of the US National HIV/AIDS Strategy. In a retrospective analysis of the 2008–2010 cycles of the locally representative Philadelphia Medical Monitoring Project, we compared the proportions of HIV-infected adults with and without mental illness: (1) retained in care (≥2 primary HIV visits separated by ≥90 days in a 12-month period); (2) prescribed antiretroviral therapy (ART) at any point in a 12-month period; and (3) virally suppressed (HIV-1 RNA ≤200 copies/mL at the last measure in the 12-month period). Multivariable regression assessed associations between mental illness and the outcomes, adjusting for age, gender, race/ethnicity, insurance, alcohol abuse, injection drug use, CD4 count, and calendar year. Of 730 HIV-infected persons, representative of 9409 persons in care for HIV in Philadelphia, 49.0 % had mental illness. In adjusted analyses, there were no significant differences in retention (91.3 vs. 90.3 %; AOR 1.30, 95 % CI 0.63–2.56) and prescription of ART (83.2 vs. 88.7 %; AOR 0.79, 95 % CI 0.49–1.25) between those with and without mental illness. However, mentally ill patients were less likely to achieve viral suppression than those without mental illness (65.9 vs. 74.4 %; AOR 0.64, 95 % CI 0.46–0.90). These findings argue for the need to optimize ART adherence in this population. PMID:25931243

  20. [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.

  1. 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

  2. Triple jeopardy for HIV: substance using Severely Mentally Ill Adults.

    PubMed

    Devieux, Jessy G; Malow, Robert; Lerner, Brenda G; Dyer, Janyce G; Baptista, Ligia; Lucenko, Barbara; Kalichman, Seth

    2007-01-01

    Severely Mentally Ill (SMI) adults have disproportionately high HIV seroprevalence rates. Abuse of alcohol and other substances (AOD) and lifetime exposure to trauma by others are particularly potent risk factors, which, in combination with psychiatric disabilities, create triple jeopardy for HIV infection. This study examined the predictive utility of demographic characteristics; history of physical, emotional, or sexual abuse; extent of drug and alcohol abuse; knowledge about HIV/AIDS; sexual self-efficacy; and condom attitudes toward explaining the variance in a composite of HIV high-risk behavior among 188 SMI women and 158 SMI men. History of sexual abuse, engaging in sexual activities while high on substances, and lower cannabis use were the most significant predictors of HIV sexual risk behaviors. Given the triple jeopardy for HIV risk in this population, a triple barreled approach that simultaneously addresses multiple health risks within an integrated treatment setting is warranted.

  3. "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

  4. 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

  5. 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

  6. 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.

  7. HIV/AIDS, chronic diseases and globalisation

    PubMed Central

    2011-01-01

    HIV/AIDS has always been one of the most thoroughly global of diseases. In the era of widely available anti-retroviral therapy (ART), it is also commonly recognised as a chronic disease that can be successfully managed on a long-term basis. This article examines the chronic character of the HIV/AIDS pandemic and highlights some of the changes we might expect to see at the global level as HIV is increasingly normalised as "just another chronic disease". The article also addresses the use of this language of chronicity to interpret the HIV/AIDS pandemic and calls into question some of the consequences of an uncritical acceptance of concepts of chronicity. PMID:21871074

  8. HIV/AIDS, chronic diseases and globalisation.

    PubMed

    Colvin, Christopher J

    2011-08-26

    HIV/AIDS has always been one of the most thoroughly global of diseases. In the era of widely available anti-retroviral therapy (ART), it is also commonly recognised as a chronic disease that can be successfully managed on a long-term basis. This article examines the chronic character of the HIV/AIDS pandemic and highlights some of the changes we might expect to see at the global level as HIV is increasingly normalised as "just another chronic disease". The article also addresses the use of this language of chronicity to interpret the HIV/AIDS pandemic and calls into question some of the consequences of an uncritical acceptance of concepts of chronicity.

  9. 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)

  10. 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.

  11. Explanatory Models and Illness Experience of People Living with HIV.

    PubMed

    Laws, M Barton

    2016-09-01

    Research into explanatory models of disease and illness typically explores people's conceptual understanding, and emphasizes differences between patient and provider models. However, the explanatory models framework of etiology, time and mode of onset of symptoms, pathophysiology, course of sickness, and treatment is built on categories characteristic of biomedical understanding. It is unclear how well these map onto people's lived experience of illness, and to the extent they do, how they translate. Scholars have previously studied the experience of people living with HIV through the lenses of stigma and identity theory. Here, through in-depth qualitative interviews with 32 people living with HIV in the northeast United States, we explored the experience and meanings of living with HIV more broadly using the explanatory models framework. We found that identity reformation is a major challenge for most people following the HIV diagnosis, and can be understood as a central component of the concept of course of illness. Salient etiological explanations are not biological, but rather social, such as betrayal, or living in a specific cultural milieu, and often self-evaluative. Given that symptoms can now largely be avoided through adherence to treatment, they are most frequently described in terms of observation of others who have not been adherent, or the resolution of symptoms following treatment. The category of pathophysiology is not ordinarily very relevant to the illness experience, as few respondents have any understanding of the mechanism of pathogenesis in HIV, nor much interest in it. Treatment has various personal meanings, both positive and negative, often profound. For people to engage successfully in treatment and live successfully with HIV, mechanistic explanation is of little significance. Rather, positive psychological integration of health promoting behaviors is of central importance.

  12. Explanatory Models and Illness Experience of People Living with HIV

    PubMed Central

    2016-01-01

    Research into explanatory models of disease and illness typically explores people’s conceptual understanding, and emphasizes differences between patient and provider models. However, the explanatory models framework of etiology, time and mode of onset of symptoms, pathophysiology, course of sickness, and treatment is built on categories characteristic of biomedical understanding. It is unclear how well these map onto people’s lived experience of illness, and to the extent they do, how they translate. Scholars have previously studied the experience of people living with HIV through the lenses of stigma and identity theory. Here, through in-depth qualitative interviews with 32 people living with HIV in the northeast United States, we explored the experience and meanings of living with HIV more broadly using the explanatory models framework. We found that identity reformation is a major challenge for most people following the HIV diagnosis, and can be understood as a central component of the concept of course of illness. Salient etiological explanations are not biological, but rather social, such as betrayal, or living in a specific cultural milieu, and often self-evaluative. Given that symptoms can now largely be avoided through adherence to treatment, they are most frequently described in terms of observation of others who have not been adherent, or the resolution of symptoms following treatment. The category of pathophysiology is not ordinarily very relevant to the illness experience, as few respondents have any understanding of the mechanism of pathogenesis in HIV, nor much interest in it. Treatment has various personal meanings, both positive and negative, often profound. For people to engage successfully in treatment and live successfully with HIV, mechanistic explanation is of little significance. Rather, positive psychological integration of health promoting behaviors is of central importance. PMID:26971285

  13. 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.

  14. 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.

  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. Illness Representations of HIV Positive Patients Are Associated with Virologic Success

    PubMed Central

    Leone, Daniela; Borghi, Lidia; Lamiani, Giulia; Barlascini, Luca; Bini, Teresa; d’Arminio Monforte, Antonella; Vegni, Elena

    2016-01-01

    Introduction: It is important for HIV positive patients to be engaged in their care and be adherent to treatment in order to reduce disease progression and mortality. Studies found that illness representations influence adherence through the mediating role of coping behaviors. However, no study has ever tested if patient engagement to the visits mediate the relationship between illness perceptions and adherence. This study aimed to explore illness representations of HIV positive patients and test the hypothesis that illness representations predict adherence through the mediating role of a component of behavioral engagement. Methods: HIV-positive patients treated with highly active antiretroviral therapy (HAART) for at least one year and presenting to a check-up visit were eligible to participate in the study. Patients completed the Illness Perception Questionnaire-Revised. Behavioral engagement was measured based on the patients’ clinical attendance to the check-up visits; adherence to HAART was measured by viral load. Undetectable viral load or HIV-RNA < 40 copies/ml were considered indexes of virologic success. Results: A total of 161 patients participated in the study. Most of them coherently attributed the experienced symptoms to HIV/HAART; perceived their condition as chronic, stable, coherent, judged the therapy as effective, and attributed their disease to the HIV virus and to their behavior or bad luck. The majority of patients (80.1%) regularly attended check-up visits and 88.5% of them reached virologic success. The mediation model did not show good fit indexes. However, a significant direct effect of two independent variables on virologic success was found. Specifically, the perception that the disease does not have serious consequences on patient’s life and the prevalence of negative emotions toward HIV were associated with virologic success. On the contrary, the patient’s perception that the disease has serious consequences on his/her life and

  20. Illness Representations of HIV Positive Patients Are Associated with Virologic Success.

    PubMed

    Leone, Daniela; Borghi, Lidia; Lamiani, Giulia; Barlascini, Luca; Bini, Teresa; d'Arminio Monforte, Antonella; Vegni, Elena

    2016-01-01

    Introduction: It is important for HIV positive patients to be engaged in their care and be adherent to treatment in order to reduce disease progression and mortality. Studies found that illness representations influence adherence through the mediating role of coping behaviors. However, no study has ever tested if patient engagement to the visits mediate the relationship between illness perceptions and adherence. This study aimed to explore illness representations of HIV positive patients and test the hypothesis that illness representations predict adherence through the mediating role of a component of behavioral engagement. Methods: HIV-positive patients treated with highly active antiretroviral therapy (HAART) for at least one year and presenting to a check-up visit were eligible to participate in the study. Patients completed the Illness Perception Questionnaire-Revised. Behavioral engagement was measured based on the patients' clinical attendance to the check-up visits; adherence to HAART was measured by viral load. Undetectable viral load or HIV-RNA < 40 copies/ml were considered indexes of virologic success. Results: A total of 161 patients participated in the study. Most of them coherently attributed the experienced symptoms to HIV/HAART; perceived their condition as chronic, stable, coherent, judged the therapy as effective, and attributed their disease to the HIV virus and to their behavior or bad luck. The majority of patients (80.1%) regularly attended check-up visits and 88.5% of them reached virologic success. The mediation model did not show good fit indexes. However, a significant direct effect of two independent variables on virologic success was found. Specifically, the perception that the disease does not have serious consequences on patient's life and the prevalence of negative emotions toward HIV were associated with virologic success. On the contrary, the patient's perception that the disease has serious consequences on his/her life and the

  1. 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.

  2. 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

  3. 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.

  4. 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; ...

  5. 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.

  6. 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…

  7. 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…

  8. 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…

  9. 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.

  10. 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

  11. 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.

  12. 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.

  13. 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.

  14. 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…

  15. 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…

  16. 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.

  17. 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.

  18. 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.

  19. Chronic pain disorders in HIV primary care: clinical characteristics and association with healthcare utilization.

    PubMed

    Jiao, Jocelyn M; So, Eric; Jebakumar, Jebakaran; George, Mary Catherine; Simpson, David M; Robinson-Papp, Jessica

    2016-04-01

    Chronic pain is common in HIV, but incompletely characterized, including its underlying etiologies, its effect on healthcare utilization, and the characteristics of affected patients in the HIV primary care setting. These data are needed to design and justify appropriate clinic-based pain management services. Using a clinical data warehouse, we analyzed one year of data from 638 patients receiving standard-of-care antiretroviral therapy in a large primary care HIV clinic, located in the Harlem neighborhood of New York City. We found that 40% of patients carried one or more chronic pain diagnoses. The most common diagnoses were degenerative musculoskeletal disorders (eg, degenerative spinal disease and osteoarthritis), followed by neuropathic pain and headache disorders. Many patients (16%) had multiple chronic pain diagnoses. Women, older patients, and patients with greater burdens of medical illness, and psychiatric and substance use comorbidities were disproportionately represented among those with chronic pain diagnoses. Controlling for overall health status, HIV patients with chronic pain had greater healthcare utilization including emergency department visits and radiology procedures. In summary, our study demonstrates the high prevalence of chronic pain disorders in the primary care HIV clinic. Colocated interventions for chronic pain in this setting should not only focus on musculoskeletal pain but also account for complex multifaceted pain syndromes, and address the unique biopsychosocial features of this population. Furthermore, because chronic pain is prevalent in HIV and associated with increased healthcare utilization, developing clinic-based pain management programs could be cost-effective.

  20. 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…

  1. 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…

  2. 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.

  3. 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.

  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. 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.

  7. 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.

  8. 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

  9. 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.

  10. 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

  11. 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…

  12. 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…

  13. HIV knowledge, stigma, and illness beliefs among pediatric caregivers in Ghana who have not disclosed their child's HIV status.

    PubMed

    Paintsil, Elijah; Renner, Lorna; Antwi, Sampson; Dame, Joycelyn; Enimil, Anthony; Ofori-Atta, Angela; Alhassan, Amina; Ofori, Irene Pokuaa; Cong, Xiangyu; Kyriakides, Tassos; Reynolds, Nancy R

    2015-01-01

    The majority of HIV-infected children in sub-Saharan Africa have not been informed of their HIV status. Caregivers are reluctant to disclose HIV status to their children because of concern about the child's ability to understand, parental sense of guilt, and fear of social rejection and isolation. We hypothesized that the low prevalence of pediatric HIV disclosure in Ghana is due to lack of accurate HIV information and high HIV stigma among caregivers. This is a preliminary analysis of baseline data of an HIV pediatric disclosure intervention study in Ghana ("Sankofa"). "Sankofa" - is a two-arm randomized controlled clinical trial comparing disclosure intervention plus usual care (intervention arm) vs usual care (control arm) at Korle-Bu Teaching Hospital (KBTH; control arm) and Komfo-Anokye Teaching Hospital (KATH; intervention arm). We enrolled HIV-infected children, ages 7-18 years who do not know their HIV status, and their caregivers. Baseline data of caregivers included demographic characteristics; Brief HIV Knowledge Questionnaire (HIV-KQ-18); Brief Illness Perception Questionnaire; and HIV Stigma Scale. Simple and multivariable linear regression analyses were used to assess the relationship between caregiver characteristics and HIV knowledge, stigma, and illness perception. Two hundred and ninety-eight caregivers were enrolled between January 2013 and July 2014 at the two study sites; KBTH (n = 167) and KATH (n = 131). The median age of caregivers was 41 years; 80.5% of them were female and about 60% of caregivers were HIV-positive. Seventy-eight percent of caregivers were self-employed with low household income. In both unadjusted and adjusted analyses, HIV negative status and lower level of education were associated with poor scores on HIV-KQ. HIV positive status remained significant for higher level of stigma in the adjusted analyses. None of the caregiver's characteristics predicted caregiver's illness perception. Intensification of HIV education in

  14. Chronic Morbidity Among Older Children and Adolescents at Diagnosis of HIV Infection

    PubMed Central

    Rylance, Jamie; Mujuru, Hilda; Nathoo, Kusum; Chonzi, Prosper; Dauya, Ethel; Bandason, Tsitsi; Simms, Victoria; Kranzer, Katharina; Ferrand, Rashida A.

    2016-01-01

    Background: Substantial numbers of children with HIV present to health care services in older childhood and adolescence, previously undiagnosed. These “slow-progressors” may experience considerable chronic ill health, which is not well characterized. We investigated the prevalence of chronic morbidity among children aged 6–15 years at diagnosis of HIV infection. Methods: A cross-sectional study was performed at 7 primary care clinics in Harare, Zimbabwe. Children aged 6–15 years who tested HIV positive following provider-initiated HIV testing and counseling were recruited. A detailed clinical history and standardized clinical examination was undertaken. The association between chronic disease and CD4 count was investigated using multivariate logistic regression. Results: Of the 385 participants recruited [52% female, median age 11 years (interquartile range 8–13)], 95% were perinatally HIV infected. The median CD4 count was 375 (interquartile range 215–599) cells per cubic millimeter. Although 78% had previous contact with health care services, HIV testing had not been performed. There was a high burden of chronic morbidity: 23% were stunted, 21% had pubertal delay, 25% had chronic skin disease, 54% had a chronic cough of more than 1 month-duration, 28% had abnormal lung function, and 12% reported hearing impairment. There was no association between CD4 count of <500 cells per cubic millimeter or <350 cells per cubic millimeter with WHO stage or these chronic conditions. Conclusions: In children with slow-progressing HIV, there is a substantial burden of chronic morbidity even when CD4 count is relatively preserved. Timely HIV testing and prompt antiretroviral therapy initiation are urgently needed to prevent development of chronic complications. PMID:27171738

  15. 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.

  16. 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

  17. Illness meanings of AIDS among women with HIV: merging immunology and life experience.

    PubMed

    Scott, Alison

    2009-04-01

    Little attention has been paid to illness meanings held by those with HIV in the presence of highly active antiretroviral therapy (HAART). This article illustrates how elucidating illness meanings might aid our understanding of HAART adherence and other important health behaviors. Using multiple qualitative methods, including in-depth interviews, free lists, and drawings, I explore meanings surrounding the concept of AIDS among women with HIV in New Orleans, Louisiana. Illness meanings of AIDS reflect the women's negotiation of physical, social, and emotional threats posed by HIV. HIV-positive women displace death and stigma away from an HIV diagnosis to an AIDS diagnosis, creating a sense of safety and normalcy for themselves. Women with AIDS diagnoses, however, struggle to construct illness meanings of AIDS that resist its association with ostracism and death. Drawings produced by the women provide rich insights and illustrate the value of drawings as a visual method in exploring illness meanings.

  18. 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,…

  19. 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…

  20. 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,…

  1. 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…

  2. 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…

  3. 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…

  4. 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…

  5. 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.

  6. 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…

  7. 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…

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

    ERIC Educational Resources Information Center

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

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

  9. Developing a Community-Based Definition of Needs for Persons Living with Chronic HIV.

    PubMed

    Sankar, Andrea; Luborsky, Mark

    2003-01-01

    With the advent of antiretroviral therapy, HIV has become a chronic illness for those who have access to the medication. But unlike our understanding of acute disease experience which can be grasped within parameters defined by categories of medical diagnosis and treatment, understanding the experience of chronic illness requires that we expand our analytic frame to include variables and perspectives created by the beliefs, behaviors, context, and culture of the participants. Drawing on focus groups conducted among African American, Hispanic, and white people with HIV in Detroit, Michigan, we show that expressions of needs related to the lived experience of HIV vary among racial and ethnic groups and between genders, resulting in an experientially distinct set of needs.

  10. Developing a Community-Based Definition of Needs for Persons Living with Chronic HIV

    PubMed Central

    Sankar, Andrea; Luborsky, Mark

    2014-01-01

    With the advent of antiretroviral therapy, HIV has become a chronic illness for those who have access to the medication. But unlike our understanding of acute disease experience which can be grasped within parameters defined by categories of medical diagnosis and treatment, understanding the experience of chronic illness requires that we expand our analytic frame to include variables and perspectives created by the beliefs, behaviors, context, and culture of the participants. Drawing on focus groups conducted among African American, Hispanic, and white people with HIV in Detroit, Michigan, we show that expressions of needs related to the lived experience of HIV vary among racial and ethnic groups and between genders, resulting in an experientially distinct set of needs. PMID:25530625

  11. 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.

  12. 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

  13. 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

  14. 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.

  15. 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.

  16. 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.

  17. [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.

  18. 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

  19. Factors Influencing The Delivery of HIV-Related Services to Severely Mentally Ill Individuals: The Provider’s Perspective

    PubMed Central

    Biradavolu, Monica; Jia, Yujiang; Withers, Keenan; Kapetanovic, Suad

    2015-01-01

    Objective Individuals with severe mental illnesses (SMI) are disproportionately vulnerable to HIV infection, but not consistently engaged in HIV-related services. To understand factors influencing implementation of HIV-related services to individuals with SMI, we conducted series of focus groups with multidisciplinary clinicians and staff serving individuals with SMI at outpatient, emergency, acute inpatient and chronic inpatient level of care. Method Six focus groups with 30 participants were conducted, audiotaped and transcribed. Our qualitative analysis drew on Grounded Theory. Utilizing nVivo Version 9, coding was conducted by the first and senior authors, inter-rater reliability verified by running Coding Comparison queries. Results The providers’ narratives highlighted 1) patient-related factors, 2) stigma and 3) administrative factors as themes particularly relevant to the delivery of HIV-related services to individuals with SMI. The reported relevance of these factors ranged across levels of care, from creating multiple barriers in the outpatient care, to relatively seamless and effective delivery of full continuum of HIV-related services in the chronic inpatient environment, where adequate structural support is provided. Conclusion Providers’ narratives suggest that effective delivery of HIV-related services for individuals with SMI requires sustained structural support that is coordinated across levels of psychiatric care, and tailored to individual patients’ needs. The narratives also suggest that such support is currently not available. PMID:26688187

  20. Neuroinflammation and Behavior in HIV-1 Transgenic Rats Exposed to Chronic Adolescent Stress

    PubMed Central

    Rowson, Sydney A.; Harrell, Constance S.; Bekhbat, Mandakh; Gangavelli, Apoorva; Wu, Matthew J.; Kelly, Sean D.; Reddy, Renuka; Neigh, Gretchen N.

    2016-01-01

    Highly active antiretroviral therapy (HAART) has improved prognosis for people living with HIV (PLWH) and dramatically reduced the incidence of AIDS. However, even when viral load is controlled, PLWH develop psychiatric and neurological disorders more frequently than those living without HIV. Adolescents with HIV are particularly susceptible to the development of psychiatric illnesses and neurocognitive impairments. While both psychiatric and neurocognitive disorders have been found to be exacerbated by stress, the extent to which chronic stress and HIV-1 viral proteins interact to impact behavior and relevant neuroinflammatory processes is unknown. Determination of the individual contributions of stress and HIV to neuropsychiatric disorders is heavily confounded in humans. In order to isolate the influence of HIV-1 proteins and chronic stress on behavior and neuroinflammation, we employed the HIV-1 transgenic (Tg) rat model, which expresses HIV-1 proteins with a gag and pol deletion, allowing for viral protein expression without viral replication. This Tg line has been characterized as a model of HAART-controlled HIV-1 infection due to the lack of viral replication but continued presence of HIV-1 proteins. We exposed male and female adolescent HIV-1 Tg rats to a mixed-modality chronic stress paradigm consisting of isolation, social defeat and restraint, and assessed behavior, cerebral vascularization, and neuroinflammatory endpoints. Stress, sex, and presence of the HIV-1 transgene impacted weight gain in adolescent rats. Female HIV-1 Tg rats showed decreases in central tendency during the light cycle in the open field regardless of stress exposure. Both male and female HIV-1 Tg rats exhibited decreased investigative behavior in the novel object recognition task, but no memory impairments. Adolescent stress had no effect on the tested behaviors. Microglia in female HIV-1 Tg rats exhibited a hyper-ramified structure, and gene expression of complement factor B was

  1. Neuroinflammation and Behavior in HIV-1 Transgenic Rats Exposed to Chronic Adolescent Stress.

    PubMed

    Rowson, Sydney A; Harrell, Constance S; Bekhbat, Mandakh; Gangavelli, Apoorva; Wu, Matthew J; Kelly, Sean D; Reddy, Renuka; Neigh, Gretchen N

    2016-01-01

    Highly active antiretroviral therapy (HAART) has improved prognosis for people living with HIV (PLWH) and dramatically reduced the incidence of AIDS. However, even when viral load is controlled, PLWH develop psychiatric and neurological disorders more frequently than those living without HIV. Adolescents with HIV are particularly susceptible to the development of psychiatric illnesses and neurocognitive impairments. While both psychiatric and neurocognitive disorders have been found to be exacerbated by stress, the extent to which chronic stress and HIV-1 viral proteins interact to impact behavior and relevant neuroinflammatory processes is unknown. Determination of the individual contributions of stress and HIV to neuropsychiatric disorders is heavily confounded in humans. In order to isolate the influence of HIV-1 proteins and chronic stress on behavior and neuroinflammation, we employed the HIV-1 transgenic (Tg) rat model, which expresses HIV-1 proteins with a gag and pol deletion, allowing for viral protein expression without viral replication. This Tg line has been characterized as a model of HAART-controlled HIV-1 infection due to the lack of viral replication but continued presence of HIV-1 proteins. We exposed male and female adolescent HIV-1 Tg rats to a mixed-modality chronic stress paradigm consisting of isolation, social defeat and restraint, and assessed behavior, cerebral vascularization, and neuroinflammatory endpoints. Stress, sex, and presence of the HIV-1 transgene impacted weight gain in adolescent rats. Female HIV-1 Tg rats showed decreases in central tendency during the light cycle in the open field regardless of stress exposure. Both male and female HIV-1 Tg rats exhibited decreased investigative behavior in the novel object recognition task, but no memory impairments. Adolescent stress had no effect on the tested behaviors. Microglia in female HIV-1 Tg rats exhibited a hyper-ramified structure, and gene expression of complement factor B was

  2. 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.…

  3. 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.…

  4. "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…

  5. 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…

  6. 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.

  7. 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.

  8. 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

  9. [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.

  10. [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.

  11. 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

  12. 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.

  13. 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.

  14. 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

  15. Maternal HIV illness and its impact on children well-being and development in Haiti

    PubMed Central

    Conserve, Donaldson F.; Eustache, Eddy; Oswald, Catherine M.; Louis, Ermaze; Scanlan, Fiona; Mukherjee, Joia S.; Surkan, Pamela J.

    2016-01-01

    Little is known about the impact of parental HIV illness on children’s well-being and development in the island nations of the Caribbean. Study objectives were to examine mothers’ experiences of impact of HIV illness on their children’s well-being and development in Haiti. Baseline interviews were conducted between 2006 and 2007 with 25 HIV-positive mothers as part of a larger study that examined the feasibility of a psychosocial support group intervention for HIV-affected youth and their caregivers in central Haiti. Interviews were transcribed verbatim and coded for topical themes by two investigators. Main themes related to impact of maternal HIV illness on children’s well-being were the lack of mothers’ physical strength to take care of their children, and their difficulties in providing housing and food for their children. Children’s school enrollment, attendance, and performance were also affected by their mother’s illness. Mothers reported that although their children were HIV-negative, children were distressed by HIV-related stigma that they and their mothers experienced. Findings suggest that children living in HIV-affected families in this region face disadvantages in nutritional, educational, and psychological outcomes. These considerations should be taken into account when designing interventions to support children living in HIV-affected families in this setting. PMID:28154475

  16. 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

  17. 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.

  18. HIV positive patients first presenting with an AIDS defining illness: characteristics and survival.

    PubMed Central

    Poznansky, M. C.; Coker, R.; Skinner, C.; Hill, A.; Bailey, S.; Whitaker, L.; Renton, A.; Weber, J.

    1995-01-01

    OBJECTIVES--To study the presentation and survival of patients who present with their first diagnosis of being HIV positive at the same time as their AIDS defining illness. DESIGN--Retrospective study of patients presenting with AIDS between 1991 and 1993. SETTING--Department of genitourinary medicine, St Mary's Hospital, London. MAIN OUTCOME MEASURES--AIDS defining illness at presentation and survival after diagnosis of AIDS. RESULTS--Between January 1991 and December 1993, 97 out of 436 patients (22%) presented with their first AIDS defining illness coincident with their first positive result of an HIV test (group B). The remaining 339 patients (78%) had tested positive for HIV-1 infection within the previous eight years and had consequently been followed up in clinics before developing their first AIDS defining illness (group A). The two groups of patients did not differ in age and sex distribution, risk factors for HIV-1 infection, nationality, country of origin, or haematological variables determined at the time of the AIDS defining illness. However, the defining illnesses differed between the two groups. Illnesses associated with severe immunodeficiency (the wasting syndrome, cryptosporidiosis, and cytomegalovirus infection) were seen almost exclusively in group A whereas extrapulmonary tuberculosis and Pneumocystis carinii pneumonia were more common in group B. The survival of patients in group B after the onset of AIDS was significantly longer than that of patients in group A as determined by Kaplan-Meier log rank analysis (P = 0.0026). CONCLUSIONS--Subjects who are HIV positive and present late are a challenge to the control of the spread of HIV infection because they progress from asymptomatic HIV infection to AIDS without receiving health care. The finding that presentation with an AIDS defining illness coincident with a positive result in an HIV test did not have a detrimental effect on survival gives insights into the effects of medical intervention on

  19. 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.

  20. HIV knowledge, stigma, and illness beliefs among pediatric caregivers in Ghana who have not disclosed their child's HIV status

    PubMed Central

    Paintsil, Elijah; Renner, Lorna; Antwi, Sampson; Dame, Joycelyn; Enimil, Anthony; Ofori-Atta, Angela; Alhassan, Amina; Ofori, Irene Pokuaa; Cong, Xiangyu; Kyriakides, Tassos; Reynolds, Nancy R.

    2015-01-01

    The majority of HIV-infected children in sub-Saharan Africa have not been informed of their HIV status. Caregivers are reluctant to disclose HIV status to their children because of concern about the child’s ability to understand, parental sense of guilt, and fear of social rejection and isolation. We hypothesized that the low prevalence of pediatric HIV disclosure in Ghana is due to lack of accurate HIV information and high HIV stigma among caregivers. This is a preliminary analysis of baseline data of an HIV pediatric disclosure intervention study in Ghana (“Sankofa”). “Sankofa” – is a two-arm randomized controlled clinical trial comparing disclosure intervention plus usual care (intervention arm) vs usual care (control arm) at Korle-Bu Teaching Hospital (KBTH; control arm) and Komfo-Anokye Teaching Hospital (KATH; intervention arm). We enrolled HIV-infected children, ages 7–18 years who do not know their HIV status, and their caregivers. Baseline data of caregivers included demographic characteristics; Brief HIV Knowledge Questionnaire (HIV-KQ-18); Brief Illness Perception Questionnaire; and HIV Stigma Scale. Simple and multivariable linear regression analyses were used to assess the relationship between caregiver characteristics and HIV knowledge, stigma, and illness perception. Two hundred and ninety-eight caregivers were enrolled between January 2013 and July 2014 at the two study sites; KBTH (n = 167) and KATH (n = 131). The median age of caregivers was 41 years; 80.5% of them were female and about 60% of caregivers were HIV-positive. Seventy-eight percent of caregivers were self-employed with low household income. In both unadjusted and adjusted analyses, HIV negative status and lower level of education were associated with poor scores on HIV-KQ. HIV positive status remained significant for higher level of stigma in the adjusted analyses. None of the caregiver’s characteristics predicted caregiver’s illness perception. Intensification of

  1. 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.

  2. 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.

  3. 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…

  4. 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

  5. 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.

  6. 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

  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. Increased Rates of Respiratory and Diarrheal Illnesses in HIV-Negative Persons Living With HIV-Infected Individuals in a Densely Populated Urban Slum in Kenya

    PubMed Central

    Wong, Joshua M.; Cosmas, Leonard; Nyachieo, Dhillon; Williamson, John M.; Olack, Beatrice; Okoth, George; Njuguna, Henry; Feikin, Daniel R.; Burke, Heather; Montgomery, Joel M.; Breiman, Robert F.

    2015-01-01

    Background Prolonged pathogen shedding and increased duration of illness associated with infections in immunosuppressed individuals put close human immunodeficiency virus (HIV)–negative contacts of HIV-infected persons at increased risk of exposure to infectious pathogens. Methods We calculated incidence and longitudinal prevalence (number of days per year) of influenzalike illness (ILI), diarrhea, and nonspecific febrile illness during 2008 from a population-based surveillance program in the urban slum of Kibera (Kenya) that included 1830 HIV-negative household contacts of HIV-infected individuals and 13 677 individuals living in exclusively HIV-negative households. Results For individuals ≥5 years old, incidence was significantly increased for ILI (risk ratio [RR], 1.47; P < .05) and diarrhea (RR, 1.41; P < .05) in HIV-negative household contacts of HIV-infected individuals compared with exclusively HIV-negative households. The risk of illness among HIV-negative persons was directly proportional to the number of HIV-infected persons living in the home for ILI (RR, 1.39; P < .05) and diarrhea (RR, 1.36; P < .01). We found no increased rates of illness in children <5 years old who lived with HIV-infected individuals. Conclusions Living with HIV-infected individuals is associated with modestly increased rates of respiratory and diarrheal infections in HIV-negative individuals >5 years old. Targeted interventions are needed, including ensuring that HIV-infected persons are receiving appropriate care and treatment. PMID:25722292

  9. 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.

  10. 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.

  11. The Role of Mental Health Services in Addressing HIV Infection Among Women With Serious Mental Illness.

    PubMed

    Seeman, Mary V

    2015-09-01

    This article reviews how mental health services can best prevent and treat HIV infection among women with serious mental illness. This is a selective narrative review of the recent literature on mental health services and HIV. The author used the terms "HIV," "serious mental illness," and "women" to search Google Scholar. Out of 500 relevant papers retrieved, 82 were included, based on their state-of-the-art findings. Women with serious mental illness at risk of HIV were found to be an especially vulnerable group. The evidence suggests that discussion of the modes of viral transmission reduces the risk of infection in this population, as do psychoeducation; long-term antipsychotic medication; adherence therapy; community treatment orders; prevention of domestic violence and homelessness; disbursement of financial entitlements; provision of psychotherapy and social support; cognitive rehabilitation; promotion of abstinence, monogamy, or reduction in the number of sexual partners; access to and training in the use of condoms; prophylaxis with vaginal microbicides and oral antiretroviral drugs; prompt diagnosis and treatment of sexually transmitted diseases; across-the-board offers of HIV testing; and preservation and monitoring of reproductive health. For HIV-positive individuals, comprehensive treatment measures have included prompt HIV treatment; long-term retention in care; supervision of medication adherence and drug interactions; rapid management of substance use disorders and all other comorbidities as well as drug side effects; and preclusion of professional stigmatization. There is now sufficient evidence to recommend effective combinations of strategies to prevent and treat HIV within mental health services.

  12. Needs for services reported by adults with severe mental illness and HIV.

    PubMed

    Young, Alexander S; Sullivan, Greer; Bogart, Laura M; Koegel, Paul; Kanouse, David E

    2005-01-01

    This study examined the needs of people with severe mental illness and HIV. Results were based on interviews and CD4 counts of 294 individuals who received services from the Los Angeles County or the New York City public mental health system. Common unmet needs included financial assistance, housing, and mental health care. Thirty percent of the participants reported that they had at least one basic need that was not being met. Unmet need was less common as HIV infection advanced and was similar in frequency to that found in the general population with HIV. People with severe mental illness and HIV may be benefiting from the special resources that are available for people with HIV.

  13. 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

  14. 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

  15. 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

  16. 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.

  17. 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.

  18. Substance use and HIV risk in a sample of severely mentally Ill Puerto Rican women.

    PubMed

    Loue, Sana; Sajatovic, Martha; Mendez, Nancy

    2011-08-01

    Latinos, and Puerto Ricans in particular, have been disproportionately impacted by HIV/AIDS. Severe mental illness (SMI) is associated with an increase in HIV risk. Relatively little research has focused on the role of SMI among Puerto Rican injection drug users (IDUs) and non-IDUs in susceptibility to and transmission of HIV and there are few published reports on HIV risk among Latina SMI. We conducted a longitudinal mixed methods study with 53 Puerto Rican women with schizophrenia, bipolar disorder, or major depression to examine the cultural context of HIV risk and HIV knowledge, beliefs, and behaviors among a larger study with Puerto Rican and Mexican women with serious mental illness (SMI). There was a high prevalence of past and current substance use and a high prevalence of substance use-associated HIV risk behaviors, such as unprotected sexual relations with an IDU. The violence associated with substance use frequently increased participants' HIV risk. Choice of substance of abuse depended on cost, availability, and use within the individual participant's network. Participants attributed their substance use to the need to relieve symptoms associated with their mental illness, ameliorate unpleasant feelings, and deaden emotional pain. HIV prevention interventions for poorer Puerto Rican women with SMI must target the individuals themselves and others within their networks if the women are to be supported in their efforts to reduce substance use-related risk. The content of any intervention must address past and current trauma and its relationship to substance use and HIV risk, as well as strategies to prevent HIV transmission.

  19. Treatment considerations for HIV-infected individuals with severe mental illness.

    PubMed

    Blank, Michael B; Himelhoch, Seth; Walkup, James; Eisenberg, Marlene M

    2013-12-01

    There has been a general recognition of a syndemic that includes HIV/AIDS and serve mental illnesses including schizophrenia, major depression, bipolar disorder, post-traumatic stress disorder, and others. The pathophysiology and direction of effects between severe mental illness and HIV infection is less clear however, and relatively little work has been done on prevention and treatment for people with these complex, co-occurring conditions. Here we present the most recent work that has been published on HIV and mental illness. Further, we describe the need for better treatments for "triply diagnosed persons"; those with HIV, mental illness, and substance abuse and dependence. Finally, we describe the potential drug-drug interactions between psychotropic medications and anti-retrovirals, and the need for better treatment guidelines in this area. We describe one example of an individually tailored intervention for persons with serious mental illness and HIV (PATH+) that shows that integrated community-based treatments using advanced practice nurses (APNs) as health navigators can be successful in improving health-related quality of life and reducing the burden of disease in these persons.

  20. Treatment Considerations for HIV-Infected Individuals with Severe Mental Illness

    PubMed Central

    Himelhoch, Seth; Walkup, James; Eisenberg, Marlene M.

    2013-01-01

    There has been a general recognition of a syndemic that includes HIV/AIDS and serve mental illnesses including schizophrenia, major depression, bipolar disorder, post-traumatic stress disorder, and others. The pathophysiology and direction of effects between severe mental illness and HIV infection is less clear however, and relatively little work has been done on prevention and treatment for people with these complex, co-occurring conditions. Here we present the most recent work that has been published on HIV and mental illness. Further, we describe the need for better treatments for “triply diagnosed persons”; those with HIV, mental illness, and substance abuse and dependence. Finally, we describe the potential drug-drug interactions between psychotropic medications and anti-retrovirals, and the need for better treatment guidelines in this area. We describe one example of an individually tailored intervention for persons with serious mental illness and HIV (PATH+) that shows that integrated community-based treatments using advanced practice nurses (APNs) as health navigators can be successful in improving health-related quality of life and reducing the burden of disease in these persons. PMID:24158425

  1. 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

  2. The syndemic illness of HIV and trauma: implications for a trauma-informed model of care.

    PubMed

    Brezing, Christina; Ferrara, Maria; Freudenreich, Oliver

    2015-01-01

    People living with HIV infection are disproportionately burdened by trauma and the resultant negative health consequences, making the combination of HIV infection and trauma a syndemic illness. Despite the high co-occurrence and negative influence on health, trauma and posttraumatic sequelae in people living with HIV infection often go unrecognized and untreated because of the current gaps in medical training and lack of practice guidelines. We set out to review the current literature on HIV infection and trauma and propose a trauma-informed model of care to target this syndemic illness. We searched PubMed, PsycINFO, and Cochrane review databases for articles that contained the following search terms: HIV AND either trauma (specifically violent trauma), PTSD, intimate partner violence (IPV), abuse, or trauma-informed care. Articles were limited to primary clinical research or metanalyses published in English. Articles were excluded if they referred to HIV-associated posttraumatic stress disorder or HIV-associated posttraumatic growth. We confirm high, but variable, rates of trauma in people living with HIV infection demonstrated in multiple studies, ranging from 10%-90%. Trauma is associated with (1) increased HIV-risk behavior, contributing to transmission and acquisition of the virus; (2) negative internal and external mediators also associated with poor health and high-risk HIV behavior; (3) poor adherence to treatment; (4) poor HIV-related and other health outcomes; and (5) particularly vulnerable special populations. Clinicians should consider using a model of trauma-informed care in the treatment of people living with HIV infection. Its adoption in different settings needs to be matched to available resources. Copyright © 2015 The Academy of Psychosomatic Medicine. Published by Elsevier Inc. All rights reserved.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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

  8. "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.

  9. 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…

  10. 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…

  11. 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…

  12. 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…

  13. 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.

  14. 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…

  15. 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…

  16. 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…

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

    ERIC Educational Resources Information Center

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

    2011-01-01

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

  18. Differentiating founder and chronic HIV envelope sequences

    PubMed Central

    Maher, Stephen; Mota, Talia; Suzuki, Kazuo; Kelleher, Anthony D.

    2017-01-01

    Significant progress has been made in characterizing broadly neutralizing antibodies against the HIV envelope glycoprotein Env, but an effective vaccine has proven elusive. Vaccine development would be facilitated if common features of early founder virus required for transmission could be identified. Here we employ a combination of bioinformatic and operations research methods to determine the most prevalent features that distinguish 78 subtype B and 55 subtype C founder Env sequences from an equal number of chronic sequences. There were a number of equivalent optimal networks (based on the fewest covarying amino acid (AA) pairs or a measure of maximal covariance) that separated founders from chronics: 13 pairs for subtype B and 75 for subtype C. Every subtype B optimal solution contained the founder pairs 178–346 Asn-Val, 232–236 Thr-Ser, 240–340 Lys-Lys, 279–315 Asp-Lys, 291–792 Ala-Ile, 322–347 Asp-Thr, 535–620 Leu-Asp, 742–837 Arg-Phe, and 750–836 Asp-Ile; the most common optimal pairs for subtype C were 644–781 Lys-Ala (74 of 75 networks), 133–287 Ala-Gln (73/75) and 307–337 Ile-Gln (73/75). No pair was present in all optimal subtype C solutions highlighting the difficulty in targeting transmission with a single vaccine strain. Relative to the size of its domain (0.35% of Env), the α4β7 binding site occurred most frequently among optimal pairs, especially for subtype C: 4.2% of optimal pairs (1.2% for subtype B). Early sequences from 5 subtype B pre-seroconverters each exhibited at least one clone containing an optimal feature 553–624 (Ser-Asn), 724–747 (Arg-Arg), or 46–293 (Arg-Glu). PMID:28187204

  19. Differentiating founder and chronic HIV envelope sequences.

    PubMed

    Murray, John M; Maher, Stephen; Mota, Talia; Suzuki, Kazuo; Kelleher, Anthony D; Center, Rob J; Purcell, Damian

    2017-01-01

    Significant progress has been made in characterizing broadly neutralizing antibodies against the HIV envelope glycoprotein Env, but an effective vaccine has proven elusive. Vaccine development would be facilitated if common features of early founder virus required for transmission could be identified. Here we employ a combination of bioinformatic and operations research methods to determine the most prevalent features that distinguish 78 subtype B and 55 subtype C founder Env sequences from an equal number of chronic sequences. There were a number of equivalent optimal networks (based on the fewest covarying amino acid (AA) pairs or a measure of maximal covariance) that separated founders from chronics: 13 pairs for subtype B and 75 for subtype C. Every subtype B optimal solution contained the founder pairs 178-346 Asn-Val, 232-236 Thr-Ser, 240-340 Lys-Lys, 279-315 Asp-Lys, 291-792 Ala-Ile, 322-347 Asp-Thr, 535-620 Leu-Asp, 742-837 Arg-Phe, and 750-836 Asp-Ile; the most common optimal pairs for subtype C were 644-781 Lys-Ala (74 of 75 networks), 133-287 Ala-Gln (73/75) and 307-337 Ile-Gln (73/75). No pair was present in all optimal subtype C solutions highlighting the difficulty in targeting transmission with a single vaccine strain. Relative to the size of its domain (0.35% of Env), the α4β7 binding site occurred most frequently among optimal pairs, especially for subtype C: 4.2% of optimal pairs (1.2% for subtype B). Early sequences from 5 subtype B pre-seroconverters each exhibited at least one clone containing an optimal feature 553-624 (Ser-Asn), 724-747 (Arg-Arg), or 46-293 (Arg-Glu).

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

    PubMed Central

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

    2015-01-01

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

  1. 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.

  2. 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

  3. 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.

  4. 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.

  5. 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,

  6. [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.

  7. 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

  8. 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.

  9. Acute HIV illness following blood transfusion in three African children.

    PubMed

    Colebunders, R; Greenberg, A E; Francis, H; Kabote, N; Izaley, L; Nguyen-Dinh, P; Quinn, T C; Van der Groen, G; Curran, J W; Piot, P

    1988-04-01

    Three children are described in whom pre-transfusion samples were HIV-seronegative and post-transfusional samples, obtained within 1 week after transfusion, were HIV-seropositive. Two of them developed a transient fever within 1 week of receiving the blood transfusion, and a transient generalized skin eruption which lasted for about 2 weeks. All three developed persistent generalized lymphadenopathy. One child developed a lumbar herpes zoster 7 months after transfusion. IgM Western blots demonstrated the presence of antibodies to protein bands p17, p24 and p55 in all three children. These three case reports suggest that children who receive a seropositive blood transfusion are at high risk for developing acute manifestations of HIV infection.

  10. Prevalence of HIV, hepatitis B, and hepatitis C in people with severe mental illness.

    PubMed Central

    Rosenberg, S D; Goodman, L A; Osher, F C; Swartz, M S; Essock, S M; Butterfield, M I; Constantine, N T; Wolford, G L; Salyers, M P

    2001-01-01

    OBJECTIVES: This study assessed seroprevalence rates of HIV, hepatitis B virus (HBV), and hepatitis C virus (HCV) among individuals with severe mental illness. METHODS: Participants (n = 931) were patients undergoing inpatient or outpatient treatment in Connecticut, Maryland, New Hampshire, or North Carolina. RESULTS: The prevalence of HIV infection in this sample (3.1%) was approximately 8 times the estimated US population rate but lower than rates reported in previous studies of people with severe mental illness. Prevalence rates of HBV (23.4%) and HCV (19.6%) were approximately 5 and 11 times the overall estimated population rates for these infections, respectively. CONCLUSIONS: Elevated rates of HIV, HBV, and HCV were found. Of particular concern are the high rates of HCV infection, which are frequently undetected. Individuals with HCV infection commonly fail to receive appropriate treatment to limit liver damage and unknowingly may be a source of infection to others. PMID:11189820

  11. 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…

  12. 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.

  13. HIV-Related Illnesses: Topics for Health Services Research.

    ERIC Educational Resources Information Center

    National Center for Health Services Research and Health Care Technology Assessment (DHHS/PHS), Rockville, MD.

    Topics addressed in this report were suggested at a meeting of staff from the National Center for Health Services Research and Health Care Technology Assessment (NCHSR) and other Public Health Service representatives held in 1988 to update the Public Health Service's plan for the prevention and control of human immunodeficiency virus (HIV).…

  14. Meaning of care for terminally Ill HIV-infected patients by HIV-infected peer caregivers in a simulation-based training program in South Korea.

    PubMed

    Kim, Sunghee; Shin, Gisoo

    2015-01-01

    The purpose of this study was to develop a simulation-based training program for people living with HIV (PLWH) as peer caregivers who would take care of terminally ill, HIV-infected patients. We used qualitative research methods and standardized patients to explore the meaning of caring for patients as peer caregivers. Study participants included 32 patients registered as PLWH at the South Korea Federation for HIV/AIDS. The meanings of peer caregiving were categorized into four dimensions: physical, psychological, relational, and economic. Our study had benefits in knowledge acquisition for caregivers as well as care recipients, empathy with HIV-infected care recipients, improvement in self-esteem and social participation, and financial self-sufficiency to enable independent living for caregivers. The simulation training program for PLWH peer caregivers for terminally ill HIV-infected patients demonstrated value, for both PLWH caregivers and terminally ill HIV-infected patients in South Korea, to improve the quality of care.

  15. 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.

  16. 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

  17. 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.

  18. 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…

  19. 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…

  20. HIV and chronic methamphetamine dependence affect cerebral blood flow.

    PubMed

    Ances, Beau M; Vaida, Florin; Cherner, Mariana; Yeh, Melinda J; Liang, Christine L; Gardner, Carly; Grant, Igor; Ellis, Ronald J; Buxton, Richard B

    2011-09-01

    Human immunodeficiency virus (HIV) and methamphetamine (METH) dependence are independently associated with neuronal dysfunction. The coupling between cerebral blood flow (CBF) and neuronal activity is the basis of many task-based functional neuroimaging techniques. We examined the interaction between HIV infection and a previous history of METH dependence on CBF within the lenticular nuclei (LN). Twenty-four HIV-/METH-, eight HIV-/METH+, 24 HIV+/METH-, and 15 HIV+/METH+ participants performed a finger tapping paradigm. A multiple regression analysis of covariance assessed associations and two-way interactions between CBF and HIV serostatus and/or previous history of METH dependence. HIV+ individuals had a trend towards a lower baseline CBF (-10%, p = 0.07) and greater CBF changes for the functional task (+32%, p = 0.01) than HIV- subjects. Individuals with a previous history of METH dependence had a lower baseline CBF (-16%, p = 0.007) and greater CBF changes for a functional task (+33%, p = 0.02). However, no interaction existed between HIV serostatus and previous history of METH dependence for either baseline CBF (p = 0.53) or CBF changes for a functional task (p = 0.10). In addition, CBF and volume in the LN were not correlated. A possible additive relationship could exist between HIV infection and a history of METH dependence on CBF with a previous history of METH dependence having a larger contribution. Abnormalities in CBF could serve as a surrogate measure for assessing the chronic effects of HIV and previous METH dependence on brain function.

  1. 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

  2. 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.

  3. Prevalence of HIV and chronic comorbidities among older adults

    PubMed Central

    Negin, Joel; Martiniuk, Alexandra; Cumming, Robert G.; Naidoo, Nirmala; Phaswana-Mafuya, Nancy; Madurai, Lorna; Williams, Sharon; Kowal, Paul

    2015-01-01

    Objectives Limited evidence is available on HIV, aging and comorbidities in sub-Saharan Africa. This article describes the prevalence of HIV and chronic comorbidities among those aged 50 years and older in South Africa using nationally representative data. Design The WHO’s Study of global AGEing and adult health (SAGE) was conducted in South Africa in 2007–2008. SAGE includes nationally representative cohorts of persons aged 50 years and older, with comparison samples of those aged 18–49 years, which aims to study health and its determinants. Methods Logistic and linear regression models were applied to data from respondents aged 50 years and older to determine associations between age, sex and HIV status and various outcome variables including prevalence of seven chronic conditions. Results HIV prevalence among adults aged 50 and older in South Africa was 6.4% and was particularly elevated among Africans, women aged 50–59 and those living in rural areas. Rates of chronic disease were higher among all older adults compared with those aged 18–49. Of those aged 50 years and older, 29.6% had two or more of the seven chronic conditions compared with 8.8% of those aged 18–49 years (P < 0.0001). When controlling for age and sex among those aged 50 and older, BMI was lower among HIV-infected older adults aged 50 and older (27.5 kg/m2) than in HIV-uninfected individuals of the same age (30.6) (P < 0.0001). Grip strength among HIV-infected older adults was significantly (P=0.004) weaker than among similarly-aged HIV-uninfected individuals. Conclusion HIV-infected older adults in South Africa have high rates of chronic disease and weakness. Studies are required to examine HIV diagnostics and treatment instigation rates among older adults to ensure equity of access to quality care, as the number and percentage of older adults living with HIV is likely to increase. PMID:22781177

  4. 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)

  5. 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.

  6. 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.

  7. 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.

  8. HIV risk behaviors among outpatients with severe mental illness in Rio de Janeiro, Brazil

    PubMed Central

    WAINBERG, MILTON L.; MCKINNON, KAREN; ELKINGTON, KATHERINE; MATTOS, PAULO E.; GRUBER MANN, CLAUDIO; DE SOUZA PINTO, DIANA; OTTO-SALAJ, LAURA; COURNOS, FRANCINE; AND THE INVESTIGATORS OF PRISSMA

    2008-01-01

    We conducted the first study to examine rates of sexual activity, sexual risk behaviors, sexual protective behaviors, injection drug use (IDU), needle sharing, and knowledge about HIV/AIDS among outpatients with severe mental illness (SMI) in Rio de Janeiro, Brazil. Using a measure with demonstrated reliability, we found that 42% of 98 patients engaged in vaginal or anal sex within the past three months. Comorbid substance use disorder was significantly associated with sexual activity. Only 22% of sexually active patients used condoms consistently, despite having better HIV knowledge than those who were sexually abstinent. Overall, 45% of patients reported not engaging in any HIV protective behaviors. There were no reports of drug injection. Adults with SMI in Brazil are in need of efficacious HIV prevention programs and policies that can sustain these programs within mental health treatment settings. PMID:18836542

  9. Surviving the impact of HIV-related illness in the Zambian business sector.

    PubMed

    Guinness, Lorna; Walker, Damian; Ndubani, Phillimon; Jama, John; Kelly, Paul

    2003-07-01

    The HIV epidemic in sub-Saharan Africa represents an obstacle to productive employment and economic development. Employers in the region are experiencing severe staff shortages, reduced productivity, and increased costs because of protracted ill health and death among their workforce. The scale of the problem has not been fully estimated and the extent to which it could be ameliorated by control measures including effective treatment of opportunistic infections is not well known. Employers and employees (n = 108) in seven Zambian firms were interviewed to assess direct and indirect costs of illness to the firms. Information was collected on diagnosis and treatment received, duration of illness, time off, and strategies adopted to compensate for absent workers using a combination of questionnaires, structured interviews and focus group discussions. The main causes of ill health were tuberculosis (TB) (46.8%), diarrhea (12.9%), and sexually transmitted diseases (STDs; 5.8%). Annual treatment costs to the firm ranged from Zambia Kwacha (K) 60,000 to 405,000 per person treated. Other firm costs included productivity losses because of ill health, paid sick leave, the cost of employee replacement, and funerals. Employees incurred K 67,773 on average per illness episode. The most common causes of ill health were those most frequently associated with HIV. They can be easily but were often ineffectively treated. Improving disease management would thus reduce wastage and costs both to employer and employee. The extent of the impact in these firms shows the need for the private sector to adopt a stronger role in prevention and care. Further research is required to assess what recommended treatment options might be, how they could be financed, and the extent of the economic impact of HIV on firms. This would foster the development of more appropriate responses to the epidemic in Zambia and the region as a whole.

  10. 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.

  11. 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.

  12. Plasma sphingolipids in HIV-associated chronic obstructive pulmonary disease

    PubMed Central

    Hodgson, Shane; Griffin, Timothy J; Reilly, Cavan; Harvey, Stephen; Witthuhn, Bruce A; Sandri, Brian J; Wendt, Chris H

    2017-01-01

    Introduction Chronic obstructive pulmonary disease (COPD) is a significant cause of morbidity in persons living with HIV (PLWH) and HIV appears to uniquely cause COPD, independent of smoking. The mechanisms by which HIV leads to COPD are not clear. The objective of this study was to identify metabolomic biomarkers and potential mechanistic pathways of HIV-associated COPD (HIV-COPD). Methods We performed case–control metabolite profiling via mass spectrometry in plasma from 38 individuals with HIV-COPD (cases), comparing to matched controls with/without HIV and with/without COPD. Untargeted metabolites of interest were identified with liquid chromatography with mass spectrometry (LC-MS/mass spectrometry (MS)), and targeted metabolomics for tryptophan (Trp) and kynurenine (Kyn) were measured by selective reaction monitoring (SRM) with LC-MS/MS. We used mixed-effects models to compare metabolite concentrations in cases compared with controls while controlling for relevant biological variables. Results We identified 1689 analytes associated with HIV-COPD at a false discovery rate (FDR) of 10%. In PLWH, we identified 263 analytes (10% FDR) between those with and without COPD. LC MS/MS identified Trp and 17 lipids, including sphingolipids and diacylglycerol. After adjusting for relevant covariates, the Kyn/Trp ratio measured by SRM was significantly higher in PLWH (p=0.022), but was not associated with COPD status (p=0.95). Conclusions There is a unique metabolite profile in HIV-COPD that includes sphingolipids. Trp metabolism is increased in HIV, but does not appear to independently contribute to HIV-COPD. Trial registration numbers NCT01810289, NCT01797367, NCT00608764. PMID:28409005

  13. 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

  14. 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

  15. Improving Knowledge about HIV and AIDS Among Persons with a Severe Mental Illness in India

    PubMed Central

    Chandra, Prabha S.; Krishna, V. A. S.; Carey, Michael P.

    2008-01-01

    Numerous studies conducted in developed countries demonstrate that persons living with a with severe mental illness (SMI) are at elevated risk for HIV infection. Fewer studies have addressed this topic in the developing world, and no study has evaluated the effects of a risk reduction intervention. Because risk reduction requires adequate knowledge regarding HIV-related transmission and prevention strategies, the current study sampled patients diagnosed with SMI in India and assessed (a) knowledge regarding HIV/AIDS, and (b) short-term retention of knowledge following HIV risk reduction education. Patients were assessed for HIV knowledge at baseline, received an HIV educational program, and then were re-assessed for their knowledge one and five days later. The results indicated a poor level of baseline knowledge, which improved following education; knowledge gains were sustained at five days. Men, and patients with college education, demonstrated better knowledge. However, significant gains in knowledge were observed among all patients regardless of gender, education, psychiatric diagnosis, and prior sexual risk behavior. The findings indicate that a brief, HIV-focused educational intervention can help to improve knowledge among Indian psychiatric patients. PMID:19079750

  16. 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.

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

    PubMed Central

    Goudge, Jane; Gilson, Lucy; Russell, Steven; Gumede, Tebogo; Mills, Anne

    2009-01-01

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

  18. [Chronic genital ulcerations and HIV infection: 29 cases].

    PubMed

    Gbery, I P; Djeha, D; Kacou, D E; Aka, B R; Yoboue, P; Vagamon, B; Sangare, A; Kanga, J M

    1999-01-01

    Genital ulcers are common manifestations of infectious disease. The incidence of genital ulcers featuring a chronic course has increased since the beginning of the AIDS epidemic. The purpose of this 18-month cross-sectional study was to determine the main infectious causes of chronic genital ulcers (CGU) and their correlation with HIV infection. A total of 29 patients with CGU defined as an ulcer showing no sign of healing after more than one month were studied. Mean age ranged from 24 to 54 years. The male-to-female sex ratio was 1:5. The etiology was herpes in 19 cases (65.5 p. 100), chancroid in 6 cases (20.6 p. 100), streptococcal infection in 2 cases (6.8 p. 100), Pseudomonas aeruginosa infection in 1 case (3.4 p. 100) and cutaneous amibiasis in 1 case (3.4 p. 100). Twenty-two patients (75.8 p. 100) presented HIV infection including 16 with HIV1 and 6 with HIV1 and HIV2. All patients with herpes were HIV-positive. Eighteen of these patients were in stage C3 of HIV infection. Genital herpes was the main etiology of UGC in patients with HIV infection (p < 0.001). Conversely chancroid was the main etiology in patients without HIV infection (p < 0.05). This finding suggests that herpetic CGU is highly suggestive of AIDS whereas chancroid CGU is not. Although syphilis is widespread in Africa, it was not a cause of CGU in this study. Search for herpes simplex virus or Haemophilus ducreyi in patients with CGU is an important criteria for presumptive diagnosis of AIDS in Africa.

  19. Respiratory syncytial virus in adults with severe acute respiratory illness in a high HIV prevalence setting.

    PubMed

    Moyes, Jocelyn; Walaza, Sibongile; Pretorius, Marthi; Groome, Michelle; von Gottberg, Anne; Wolter, Nicole; Haffejee, Sumayya; Variava, Ebrahim; Cohen, Adam L; Tempia, Stefano; Kahn, Kathleen; Dawood, Halima; Venter, Marietjie; Cohen, Cheryl; Madhi, Shabir A

    2017-10-01

    There are limited data on the epidemiology of respiratory syncytial virus (RSV) illness in HIV-infected adults or the elderly in Africa. We studied the epidemiology of RSV-associated severe acute respiratory illness (SARI) hospitalizations in adults in South Africa from 2009 through 2013. Individuals admitted to sentinel surveillance hospitals were investigated by respiratory tract swabs for RSV, using a multiplex real-time polymerase chain reaction assay. The incidence of RSV-associated SARI was calculated for the one site with population denominators. Of 7796 participants investigated, 329 (4%) tested positive for RSV. On multivariable analysis, HIV-infected individuals with RSV-associated SARI had greater odds of being in the age groups 18-44 and 45-64 years (odd ratios (OR) 26.3; 95% confidence interval (CI) 6.2-112.1 and OR 11.4; 95% CI 2.6-50.0) compared with those ≥65 years and being female (OR 2.7; 95% CI 1.4-5.4). The relative risk of hospitalization with RSV-associated SARI was 12-18 times higher in HIV infected individual compared to that of HIV-uninfected. The incidence of RSV-associated SARI was higher in HIV-infected individuals and those aged 65 years and older. Further studies are warranted to describe the disease association of RSV detected in adults with SARI. Copyright © 2017 The British Infection Association. All rights reserved.

  20. HIV chemotherapy

    NASA Astrophysics Data System (ADS)

    Richman, Douglas D.

    2001-04-01

    The use of chemotherapy to suppress replication of the human immunodeficiency virus (HIV) has transformed the face of AIDS in the developed world. Pronounced reductions in illness and death have been achieved and healthcare utilization has diminished. HIV therapy has also provided many new insights into the pathogenesis and the viral and cellular dynamics of HIV infection. But challenges remain. Treatment does not suppress HIV replication in all patients, and the emergence of drug-resistant virus hinders subsequent treatment. Chronic therapy can also result in toxicity. These challenges prompt the search for new drugs and new therapeutic strategies to control chronic viral replication.

  1. 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.

  2. 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)

  3. 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)

  4. 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)

  5. 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...

  6. 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...

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

    ERIC Educational Resources Information Center

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

    2015-01-01

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

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

    ERIC Educational Resources Information Center

    Jackson, Todd

    2009-01-01

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

  9. 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…

  10. 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…

  11. 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…

  12. 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…

  13. 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,…

  14. The work of negotiating HIV as a chronic condition: a qualitative analysis.

    PubMed

    Thompson, Lee; Abel, Gillian

    2016-12-01

    Living with human immunodeficiency virus (HIV) in the industrialised world has for over a decade been conceptualised as living with a chronic illness. People living with HIV now are amongst the first to live and age with the virus. Drawing on a qualitative longitudinal study in a low-incidence area in a low-incidence country, this paper investigates the nuanced ways that people negotiate this condition. While it has been argued that HIV is a condition like any other chronic disease, our thematic analysis reveals some similarities and particularities around living with the condition. In comparing themselves to others with the condition, high levels of diversity of experience were identified that extended well beyond length of time from diagnosis. In comparing their illness with other illnesses, the location, for example, of their specialist service within a clinic for those with acute sexually transmitted diseases was identified as problematic. The work involved in maintaining a coherent sense of self in the face of existing and shifting challenges as a result of their infection was a second strong theme. The final theme involved flux and flex work in the ways people sought to gain and maintain control over various aspects of their lives. All of these experiences are mediated by place; that is the experience is not the same as that of those who live where there is a much higher incidence of infection. The work involved in negotiating this condition in low-incidence environments deserves more attention, but aspects of these findings are significant in higher incidence contexts as well; in particular, passivity in face of infection as one ages and the potential for medication refusal as a means of maintaining control over life and death.

  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. Chronic Disease Self-Management by People With HIV.

    PubMed

    McDonald, Karalyn; Slavin, Sean; Pitts, Marian K; Elliott, Julian H

    2016-05-01

    As HIV has transitioned into a chronic disease, reappraisal of clinical management has occurred with chronic disease self-management (CDSM) as one possibility. However, despite extensive work on CDSM across a range of diseases, little attention has focused on psychosocial contexts of the lives of people for whom programs are intended. This article reports semi-structured interviews used to explore health practices and motivations of 33 people with HIV (PWHIV) in Australia. Within participants' accounts, different forms of subjectivity and agency emerged with implications for how they understood and valued health-related behaviors. Four themes arose: health support and disclosure, social support and stigma, employment/structure, and health decisions beyond HIV. The experience of stigma and its intersection with CDSM remains relatively un-chartered. This study found stigma shapes agency and engagement with health. Decisions concerning health behaviors are often driven by perceived social and emotional benefit embedded in concerns of disclosure and stigma.

  17. Effects of Growth Hormone in Chronically Ill Children

    ClinicalTrials.gov

    2006-02-01

    - Hurler Syndrome (MPS-1) With Short Stature and Muscle Wasting; - Cerebral Palsy With Muscle Wasting; - Juvenile Rheumatoid Arthritis With Muscle Wasting and Short Stature; - Crohn’s Disease; - HIV Infection.

  18. 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

  19. Drug insight: Testosterone and selective androgen receptor modulators as anabolic therapies for chronic illness and aging.

    PubMed

    Bhasin, Shalender; Calof, Olga M; Storer, Thomas W; Lee, Martin L; Mazer, Norman A; Jasuja, Ravi; Montori, Victor M; Gao, Wenqing; Dalton, James T

    2006-03-01

    Several regulatory concerns have hindered development of androgens as anabolic therapies, despite unequivocal evidence that testosterone supplementation increases muscle mass and strength in men; it induces hypertrophy of type I and II muscle fibers, and increases myonuclear and satellite cell number. Androgens promote differentiation of mesenchymal multipotent cells into the myogenic lineage and inhibit their adipogenic differentiation, by facilitating association of androgen receptors with beta-catenin and activating T-cell factor 4. Meta-analyses indicate that testosterone supplementation increases fat-free mass and muscle strength in HIV-positive men with weight loss, glucocorticoid-treated men, and older men with low or low-normal testosterone levels. The effects of testosterone on physical function and outcomes important to patients have not, however, been studied. In older men, increased hematocrit and increased risk of prostate biopsy and detection of prostate events are the most frequent, testosterone-related adverse events. Concerns about long-term risks have restrained enthusiasm for testosterone use as anabolic therapy. Selective androgen-receptor modulators that are preferentially anabolic and that spare the prostate hold promise as anabolic therapies. We need more studies to determine whether testosterone or selective androgen-receptor modulators can induce meaningful improvements in physical function and patient-important outcomes in patients with physical dysfunction associated with chronic illness or aging.

  20. Drug Insight: testosterone and selective androgen receptor modulators as anabolic therapies for chronic illness and aging

    PubMed Central

    Bhasin, Shalender; Calof, Olga M; Storer, Thomas W; Lee, Martin L; Mazer, Norman A; Jasuja, Ravi; Montori, Victor M; Gao, Wenqing; Dalton, James T

    2007-01-01

    SUMMARY Several regulatory concerns have hindered development of androgens as anabolic therapies, despite unequivocal evidence that testosterone supplementation increases muscle mass and strength in men; it induces hypertrophy of type I and II muscle fibers, and increases myonuclear and satellite cell number. Androgens promote differentiation of mesenchymal multipotent cells into the myogenic lineage and inhibit their adipogenic differentiation, by facilitating association of androgen receptors with β-catenin and activating T-cell factor 4. Meta-analyses indicate that testosterone supplementation increases fat-free mass and muscle strength in HIV-positive men with weight loss, glucocorticoid-treated men, and older men with low or low-normal testosterone levels. The effects of testosterone on physical function and outcomes important to patients have not, however, been studied. In older men, increased hematocrit and increased risk of prostate biopsy and detection of prostate events are the most frequent, testosterone-related adverse events. Concerns about long-term risks have restrained enthusiasm for testosterone use as anabolic therapy. Selective androgen-receptor modulators that are preferentially anabolic and that spare the prostate hold promise as anabolic therapies. We need more studies to determine whether testosterone or selective androgen-receptor modulators can induce meaningful improvements in physical function and patient-important outcomes in patients with physical dysfunction associated with chronic illness or aging. PMID:16932274

  1. Comparative Cost Analysis of Housing and Case Management Program for Chronically Ill Homeless Adults Compared to Usual Care

    PubMed Central

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

    2012-01-01

    Objective To assess the costs of a housing and case management program in a novel sample—homeless adults with chronic medical illnesses. Data Source The study used data from multiple sources: (1) electronic medical records for hospital, emergency room, and ambulatory medical and mental health visits; (2) institutional and regional databases for days in respite centers, jails, or prisons; and (3) interviews for days in nursing homes, shelters, substance abuse treatment centers, and case manager visits. Total costs were estimated using unit costs for each service. Study Design Randomized controlled trial of 407 homeless adults with chronic medical illnesses enrolled at two hospitals in Chicago, Illinois, and followed for 18 months. Principal Findings Compared to usual care, the intervention group generated an average annual cost savings of (−)$6,307 per person (95 percent CI: −16,616, 4,002; p = .23). Subgroup analyses of chronically homeless and those with HIV showed higher per person, annual cost savings of (−)$9,809 and (−)$6,622, respectively. Results were robust to sensitivity analysis using unit costs. Conclusion The findings of this comprehensive, comparative cost analyses demonstrated an important average annual savings, though in this underpowered study these savings did not achieve statistical significance. PMID:22098257

  2. 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

  3. 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.

  4. 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.

  5. Primary and secondary HIV prevention among persons with severe mental illness: recent findings

    PubMed Central

    Hobkirk, Andréa L.; Towe, Sheri L.; Lion, Ryan; Meade, Christina S.

    2016-01-01

    Persons with severe mental illness (SMI) have been disproportionately affected by the HIV epidemic, with higher rates of HIV prevalence and morbidity than the general population. Recent research has advanced our understanding of the complex factors that influence primary and secondary HIV prevention for those with SMI. Sex risk in this population is associated with socioeconomic factors (e.g., low income, history of verbal violence) and other health risk behaviors (e.g., substance use, no prior HIV testing). Several interventions are effective at reducing risk behavior, and reviews highlight the need for more well-controlled studies that assess long-term outcomes. Recent research has elucidated barriers that interfere with HIV treatment for SMI populations, including individual (e.g., apathy, substance use), social (e.g., stigma), and system factors (e.g., transportation, clinic wait times). Interventions that coordinate HIV care for individuals with SMI show promise as cost-effective methods for improving medication adherence and quality of life. PMID:26428958

  6. 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.

  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. 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…

  9. 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

  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. Negotiating risk: knowledge and use of HIV prevention by persons with serious mental illness living in supportive housing.

    PubMed

    Kloos, Bret; Gross, Steven M; Meese, Katharine J; Meade, Christina S; Doughty, Jhan D; Hawkins, Dietra D; Zimmerman, Susan O; Snow, David L; Sikkema, Kathleen J

    2005-12-01

    As a population, persons with serious mental illness (SMI) have an elevated risk for HIV infection. However, relatively little is known about how the risk of HIV has affected their lives, how persons with SMI evaluate their HIV risk, and what preventive measures they undertake. Furthermore, relatively little is known about community-based HIV prevention for persons with SMI as most interventions have been restricted to clinical settings. This report presents findings on the HIV-related experiences of persons with SMI living in supportive housing programs, one possible setting for implementing community-based HIV prevention with this population. The qualitative investigation interviewed 41 men and women living in five supportive housing programs. In-depth, qualitative interviews elicited discussion of research participants' (a) experiences with HIV, (b) knowledge about HIV and HIV prevention, (c) assessments of their own risk, (d) descriptions of how they apply their prevention knowledge, and (e) reports of barriers for HIV prevention. Research participants describe social networks that have substantial contact with persons affected by HIV. However, contrary to some expectations of persons with SMI, research participants report using HIV prevention knowledge in negotiating their risk of contracting HIV. The implications of these findings are discussed in terms of their relevance for implementing community-based HIV prevention for persons with SMI.

  16. Negotiating Risk: Knowledge and Use of HIV Prevention by Persons With Serious Mental Illness Living in Supportive Housing

    PubMed Central

    Kloos, Bret; Gross, Steven M.; Meese, Katharine J.; Meade, Christina S.; Doughty, Jhan D.; Hawkins, Dietra D.; Zimmerman, Susan O.; Snow, David L.; Sikkema, Kathleen J.

    2008-01-01

    As a population, persons with serious mental illness (SMI) have an elevated risk for HIV infection. However, relatively little is known about how the risk of HIV has affected their lives, how persons with SMI evaluate their HIV risk, and what preventive measures they undertake. Furthermore, relatively little is known about community-based HIV prevention for persons with SMI as most interventions have been restricted to clinical settings. This report presents findings on the HIV-related experiences of persons with SMI living in supportive housing programs, one possible setting for implementing community-based HIV prevention with this population. The qualitative investigation interviewed 41 men and women living in five supportive housing programs. In-depth, qualitative interviews elicited discussion of research participants’ (a) experiences with HIV, (b) knowledge about HIV and HIV prevention, (c) assessments of their own risk, (d) descriptions of how they apply their prevention knowledge, and (e) reports of barriers for HIV prevention. Research participants describe social networks that have substantial contact with persons affected by HIV. However, contrary to some expectations of persons with SMI, research participants report using HIV prevention knowledge in negotiating their risk of contracting HIV. The implications of these findings are discussed in terms of their relevance for implementing community-based HIV prevention for persons with SMI. PMID:16389505

  17. Systemic Effects of Inflammation on Health during Chronic HIV Infection

    PubMed Central

    Deeks, Steven G.; Tracy, Russell; Douek, Daniel C.

    2014-01-01

    Combination antiretroviral therapy for HIV infection improves immune function and eliminates the risk of AIDS-related complications, but does not restore full health. HIV-infected adults have excess risk of cardiovascular, liver, kidney, bone and neurologic diseases. Many markers of inflammation are elevated in HIV disease and strongly predictive of the risk of morbidity and mortality. A conceptual model has emerged to explain this syndrome of diseases where HIV-mediated destruction of gut mucosa leads to local and systemic inflammation. Translocated microbial products then pass through the liver, contributing to hepatic damage, impaired microbial clearance and impaired protein synthesis. Chronic activation of monocytes and altered liver protein synthesis subsequently contribute to a hypercoagulable state. The combined effect of systemic inflammation and excess clotting on tissue function leads to end-organ disease. Multiple therapeutic interventions designed to reverse these pathways are now being tested in the clinic. It is likely that knowledge gained on how inflammation affect health in HIV disease could have implications for our understanding of other chronic inflammatory diseases and the biology of aging. PMID:24138880

  18. 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…

  19. 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…

  20. 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…

  1. 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

  2. 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

  3. 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

  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. 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.

  9. 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.

  10. 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.

  11. Structured antiretroviral treatment interruptions in chronically HIV-1-infected subjects

    PubMed Central

    Ortiz, Gabriel M.; Wellons, Melissa; Brancato, Jason; Vo, Ha T. T.; Zinn, Rebekah L.; Clarkson, Daniel E.; Van Loon, Katherine; Bonhoeffer, Sebastian; Miralles, G. Diego; Montefiori, David; Bartlett, John A.; Nixon, Douglas F.

    2001-01-01

    The risks and benefits of structured treatment interruption (STI) in HIV-1-infected subjects are not fully understood. A pilot study was performed to compare STI with continuous highly active antiretroviral therapy (HAART) in chronic HIV-1-infected subjects with HIV-1 plasma RNA levels (VL) <400 copies per ml and CD4+ T cells >400 per μl. CD4+ T cells, VL, HIV-1-specific neutralizing antibodies, and IFN-γ-producing HIV-1-specific CD8+ and CD4+ T cells were measured in all subjects. STIs of 1-month duration separated by 1 month of HAART, before a final 3-month STI, resulted in augmented CD8+ T cell responses in all eight STI subjects (P = 0.003), maintained while on HAART up to 22 weeks after STI, and augmented neutralization titers to autologous HIV-1 isolate in one of eight subjects. However, significant decline of CD4+ T cell count from pre-STI level, and VL rebound to pre-HAART baseline, occurred during STI (P = 0.001 and 0.34, respectively). CD4+ T cell counts were regained on return to HAART. Control subjects (n = 4) maintained VL <400 copies per ml and stable CD4+ T cell counts, and showed no enhancement of antiviral CD8+ T cell responses. Despite increases in antiviral immunity, no control of VL was observed. Future studies of STI should proceed with caution. PMID:11687611

  12. Clinical manifestations and outcome in HIV-infected young infants presenting with acute illness in Durban, South Africa.

    PubMed

    Jeena, P M; Reichert, K; Adhikari, M; Popat, M; Carlin, J B; Weber, M W; Hamer, D H

    2011-01-01

    In young infants, early development of symptomatic HIV infection increases the risk of morbidity and mortality. A prospective study was conducted over a 1-year period in a region with a high burden of HIV in order to describe the clinical presentation of HIV infection in infants aged between 0 and 59 days on attendance at hospital and the factors associated with the need for urgent hospital management. Sick young infants presenting to the King Edward VIII Hospital, Durban between February 2003 and January 2004 were enrolled. After systematic evaluation by a primary health worker, an experienced paediatrician determined the primary diagnosis and need for urgent hospital management. Comparisons of these assessments were stratified by HIV status. Children were classified as HIV-uninfected (HIV ELISA-negative), HIV-exposed-but-uninfected (HIV ELISA-positive and HIV RNA PCR-negative), HIV-infected (HIV ELISA-positive and HIV viral load >400 copies/ml). Of 925 infants enrolled, 652 (70·5%) had their HIV status determined: 70 (10·7%) were HIV-infected, 271 (41·6%) HIV-exposed-but-uninfected, and 311 (47·7%) HIV-uninfected. Factors associated with an increased probability of being HIV-infected included if the mother had children from more than one sexual partner, if the infant had had contact with a tuberculosis-infected person or if the HIV-infected mother and/or her exposed infant failed to receive nevirapine prophylaxis. Signs of severe illness were more frequently encountered in HIV-infected than in HIV-exposed-but-uninfected infants, including the prevalence of chest in-drawing (20·3% vs 8·8%, p = 0·004) and severe skin pustules (18·6% vs 8·6%, p = 0·01). Among infants requiring urgent hospital management, observed or reported feeding difficulties and severe skin pustules were more common in HIV-infected than uninfected infants. More HIV-infected infants (12·9%) required hospitalisation than those who were HIV-exposed-but-uninfected (7·7%) or uninfected

  13. 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.

  14. 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

  15. Good or bad, ups and downs, and getting better: Use of personal health data for temporal reflection in chronic illness.

    PubMed

    Barbarin, Andrea M; Klasnja, Predrag; Veinot, Tiffany C

    2016-10-01

    Time is a central component of the experience of illness. Yet, little is known about how chronically ill patients and their family members use temporal information (i.e., information that is dependent on some measurement of time) to reflect upon the illness experience. The purpose of this study is to explore what temporal information chronically ill patients and their family members need, where they obtain it, and how they use it, along with related temporal reasoning processes and challenges. A series of five qualitative, semi-structured interviews were conducted during a two-year longitudinal study of 38 families (97 individuals) with at least one chronically ill member (HIV/AIDS or type 2 diabetes). Patients and family members had temporal information needs related to identifying: patient status; trends; optimal timing, optimal frequency, cause and effect; and what to expect. They used a wide range of information sources to meet these needs, including clinical test results, at-home health monitoring technologies, patient physical appearance and physical sensations, and information about other patients' experiences. Participants employed several forms of reasoning to reflect on temporal information: criteria reasoning (i.e., comparison to a standard), comparative reasoning (both to oneself in the past and to other people), cause-to-effects, effects-to-cause reasoning, conditional reasoning (i.e., if-then reasoning), and deductive reasoning. They used temporal information to carry out instrumental illness management, and to meet emotional and social needs. Patients and families confronted challenges in selecting relevant data, recognizing patterns in those data, and in drawing conclusions based on inferred patterns. Patients have six main temporal information needs, and they use a variety of information sources and reasoning strategies to meet these needs. They also confront important challenges in using temporal information. Based on our results, we offer design

  16. 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.

  17. If I Didn't Have HIV I'd Be Dead Now: Illness Narratives of Drug Users Living with HIV/AIDS

    PubMed Central

    Mosack, Katie E.; Abbott, Maryann; Singer, Merrill; Weeks, Margaret R.; Lucy, Rohena

    2010-01-01

    The purpose of this study was to illuminate the experiences of poor, urban HIV-positive drug users. Sixty participants were asked about HIV risk behaviors, the impact of HIV on their lives, religious beliefs, life plans, relationships, and work-related issues both prior to and since diagnosis. A theoretical framework was developed using Frank's (1995; 1998) Illness Narratives and Boss and Couden's (2002) Ambiguous Loss theories. Themes pertaining to both physical and emotional or spiritual dimensions were located within Benefit, Loss, or Status Quo orientations. The findings contribute to researchers' understanding of the HIV/AIDS illness experiences among the very marginalized and they have important implications for physical and mental health care professionals working with HIV-positive drug users. PMID:15802537

  18. Perceived Mental Illness Stigma and HIV Risk Behaviors Among Adult Psychiatric Outpatients in Rio de Janeiro, Brazil

    PubMed Central

    Elkington, Katherine S.; McKinnon, Karen; Mann, Claudio Gruber; Collins, Pamela Y.; Leu, Cheng-Shiun; Wainberg, Milton L.

    2009-01-01

    We examined the associations between perceived mental illness stigma and HIV risk and protective behaviors among adults with severe mental illness (SMI) in Rio de Janeiro, Brazil. We measured mental illness stigma across three domains (“Personal Experiences,” “Perceived Attractiveness,” and “Relationship Discrimination”), and examined the relationship between experiences of stigma in each domain and HIV risk and protective behaviors over the past three months in 98 outpatients with SMI. Those who reported greater “Relationship Discrimination” stigma were significantly more likely to be sexually active and to have unprotected sex; they were significantly less likely to report deliberately having fewer partners as a way to protect themselves from HIV. The role of stigma in unprotected sexual behavior should be examined further and considered in any HIV prevention intervention for people with SMI. PMID:19543974

  19. 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.

  20. 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.

  1. 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

  2. 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

  3. Clinical picture of primary HIV infection presenting as a glandular-fever-like illness.

    PubMed Central

    Gaines, H.; von Sydow, M.; Pehrson, P. O.; Lundbegh, P.

    1988-01-01

    The clinical symptoms and signs were assessed in 20 consecutive patients developing infection with the human immunodeficiency virus (HIV). All were male homosexuals and all presented with a glandular-fever-like illness. Changes in laboratory values were compared with findings in 40 HIV negative male homosexual controls. In the 10 patients for whom date of exposure to the virus could be established the incubation period was 11-28 days (median 14). One or two days after the sudden onset of fever patients developed sore throat, lymphadenopathy, rash, lethargy, coated tongue, tonsillar hypertrophy, dry cough, headache, myalgia, conjunctivitis, vomiting, night sweats, nausea, diarrhoea, and palatal enanthema. Twelve patients had painful, shallow ulcers in the mouth or on the genitals or anus or as manifested by oesophageal symptoms; these ulcers may have been the site of entry of the virus. During the first week after the onset of symptoms mild leucopenia, thrombocytopenia, and increased numbers of banded neutrophils were detected (p less than 0.0005). The mean duration of acute illness was 12.7 days (range 5-44). All patients remained healthy during a mean follow up period of 2.5 years. Heightened awareness of the typical clinical picture in patients developing primary HIV infection will alert the physician at an early stage and so aid prompt diagnosis and help contain the epidemic spread of AIDS. PMID:3146367

  4. 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

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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

  10. 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).

  11. Related or not? Development of spontaneous Creutzfeldt–Jakob disease in a patient with chronic, well-controlled HIV: A case report and review of the literature

    PubMed Central

    Babi, M-Alain; Kraft, Bryan D; Sengupta, Sweta; Peterson, Haley; Orgel, Ryan; Wegermann, Zachary; Lugogo, Njira L; Luedke, Matthew W

    2016-01-01

    Background: We report a novel case of a rare disease: spontaneous Creutzfeldt–Jakob disease in a patient with well-controlled HIV. We explore the relationship between spontaneous Creutzfeldt–Jakob disease and HIV. Case report: A 66-year-old man with long-standing, well-controlled HIV infection presented with 3 months of progressive, subacute neurocognitive decline. His symptoms included conceptual apraxia, apathy, memory impairment, and gait disturbance, and were initially attributed to depressive “pseudo-dementia.” Unfortunately, the patient’s symptoms rapidly progressed and he ultimately succumbed to his illness. Autopsy confirmed the clinical diagnosis of spontaneous Creutzfeldt–Jakob disease. Discussion: This case highlights spontaneous Creutzfeldt–Jakob disease as a rare terminal illness in the setting of well-controlled chronic HIV. To our knowledge, this is the first report of a patient with chronic and previously well-controlled HIV infection dying from a prion disease. Despite the very different epidemiology and pathophysiology of HIV and spontaneous Creutzfeldt–Jakob disease, this case does raise questions of whether certain host genetic factors could predispose to both conditions, albeit currently, there is no clear causal link between HIV and spontaneous Creutzfeldt–Jakob disease. PMID:27781099

  12. 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.

  13. 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.

  14. [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.

  15. 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

  16. 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.

  17. 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

  18. 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.

  19. 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

  20. 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

  1. 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.

  2. 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

  3. 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.

  4. [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.

  5. Perceived HIV stigma among children in a high HIV-prevalence area in central China: beyond the parental HIV-related illness and death.

    PubMed

    Lin, Xiuyun; Zhao, Guoxiang; Li, Xiaoming; Stanton, Bonita; Zhang, Liying; Hong, Yan; Zhao, Junfeng; Fang, Xiaoyi

    2010-05-01

    (1) Examine the psychometric properties of two parallel measures of HIV-related stigma (i.e., perceived public stigma and children's personal stigma against people living with HIV/AIDS [PLWHA]) among children affected by HIV/AIDS. (2) Examine whether expressions of stigma measures differ by child's sex, developmental stage, family socioeconomic status (SES), or orphanhood status (i.e., AIDS orphans, vulnerable children, and comparison children). (3) Examine the association between HIV-related stigma and children's psychosocial adjustments among these children. Cross-sectional data were collected from 755 AIDS orphans (children who had lost one or both their parents to AIDS), 466 vulnerable children who lived with HIV infected parents, and 404 comparison children who did not experience HIV-related illness and death in their families. The measures included perceived public stigma, personal stigma, depressive symptoms, loneliness, self-esteem, future expectations, hopefulness about the future, and perceived control over the future. Both stigma scales were positively associated with psychopathological symptoms (e.g., depression, loneliness) and negatively associated with psychosocial well-being (e.g., self-esteem, positive future expectation, hopefulness about future, and perceived control over the future). Both stigma measures contribute to children's psychosocial problems independent of their orphanhood status and other key demographic factors. Community-wide stigma reduction and psychological support should be part of the care efforts for children affected by AIDS. Stigma reduction efforts should not only target the stigma against PLWHA but also possible stigma against the entire community (e.g., villages) with a high prevalence of HIV/AIDS. The stigma reduction efforts also needs to be appropriate for children's age, gender, family SES, and AIDS experience in the family. Future research should explore individual and contextual factors such as social support, coping

  6. 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.

  7. 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.

  8. [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.

  9. 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.

  10. 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.

  11. 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

  12. 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.

  13. 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.

  14. 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

  15. 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

  16. 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.

  17. 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.

  18. 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.

  19. Care of HIV patients with chronic hepatitis B: updated recommendations from the HIV-Hepatitis B Virus International Panel.

    PubMed

    Soriano, Vincent; Puoti, Massimo; Peters, Marion; Benhamou, Yves; Sulkowski, Mark; Zoulim, Fabien; Mauss, Stefan; Rockstroh, Juergen

    2008-07-31

    Nearly 10% of the estimated 36 million people having HIV worldwide suffer from chronic hepatitis B virus (HBV) infection. The advent of new antiviral agents against HBV and the recent availability of improved molecular diagnostic tools have revolutioned the management of HIV/HBV coinfected patients. The present study represents an update of the current knowledge about HBV/HIV coinfection and an intent to provide practical advise about how to give the best care to HIV-infected persons with chronic hepatitis B.

  20. Screening for acute HIV infection in South Africa: finding acute and chronic disease

    PubMed Central

    Bassett, Ingrid V.; Chetty, Senica; Giddy, Janet; Reddy, Shabashini; Bishop, Karen; Lu, Zhigang; Losina, Elena; Freedberg, Kenneth A.; Walensky, Rochelle P.

    2010-01-01

    Background The yield of screening for acute HIV infection among general medical patients in resource-scarce settings remains unclear. Our objective was to evaluate a strategy of pooled HIV plasma RNA to diagnose acute HIV infection in patients with negative or discordant rapid HIV antibody tests in Durban, South Africa. Methods We prospectively enrolled patients with negative or discordant rapid HIV antibody tests from a routine HIV screening program in an outpatient department in Durban with an HIV prevalence of 48%. Study participants underwent venipuncture for pooled qualitative HIV RNA, and if positive, quantitative RNA, enzyme immunoassay and Western Blot (WB). Patients with negative or indeterminate WB and positive quantitative HIV RNA were considered acutely infected. Those with chronic infection (positive RNA and WB) despite negative or discordant rapid HIV tests were considered false negative rapid antibody tests. Results Nine hundred ninety-four participants were enrolled with either negative (N=976) or discordant (N=18) rapid test results. Eleven (1.1%, 95% CI: 0.6–2.0%) had acute HIV infection. Of the 994 patients, an additional 20 (2.0%, 95% CI: 1.3–.3.1%) had chronic HIV infection (false negative rapid test). Conclusions One percent of outpatients with negative or discordant rapid HIV tests in Durban, South Africa had acute HIV infection readily detectable through pooled serum HIV RNA screening. Pooled RNA testing also identified an additional 2% of patients with chronic HIV infection. HIV RNA screening has the potential to identify both acute and chronic HIV infections that are otherwise missed by standard HIV testing algorithms. PMID:20553336

  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 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.

  4. 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

  5. [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.

  6. 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.

  7. 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.

  8. 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.

  9. 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

  10. 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

  11. 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

  12. Chronic cavitary pulmonary histoplasmosis in a non-HIV and immunocompromised patient without overseas travel history.

    PubMed

    Jung, Eun Ju; Park, Dae Won; Choi, Jung-Woo; Choi, Won Suk

    2015-05-01

    Korea is not known as an endemic area for Histoplasma. However, we experienced a case of histoplasmosis in a person who had never been abroad. A 65-year-old female was admitted to the hospital for evaluation of multiple lung nodules. A computed tomography (CT) scan of the chest showed multiple ill-defined consolidations and cavitations in all lobes of both lungs. The patient underwent a CT-guided lung biopsy, and a histopathology study showed findings compatible with histoplasmosis. Based on biopsy results and clinical findings, the patient was diagnosed with chronic cavitary pulmonary histoplasmosis. The patient recovered completely following itraconazole treatment. This is the first case report of pulmonary histoplasmosis unconnected with either HIV infection or endemicity in Korea.

  13. 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…

  14. 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…

  15. 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…

  16. 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.

  17. 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…

  18. 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…

  19. 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…

  20. 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…

  1. 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…

  2. 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…

  3. 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…

  4. 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…

  5. 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…

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

    ERIC Educational Resources Information Center

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

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

  7. 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…

  8. 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,…

  9. 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…

  10. 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.

  11. 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…

  12. 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…

  13. 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…

  14. [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.

  15. 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.

  16. 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…

  17. 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…

  18. 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…

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

    ERIC Educational Resources Information Center

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

    2012-01-01

    Background: Youth with childhood-onset chronic illness (COCI) are at risk of poor educational attainment. Specific protective factors that promote college graduation in this population have not been studied previously. In this study, we examine the role protective factors during adolescence play in promoting college graduation among young adults…

  20. 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);…

  1. "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,…

  2. 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…

  3. 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…

  4. 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.

  5. 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.

  6. 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…

  7. 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…

  8. 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…

  9. 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…

  10. 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…

  11. 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…

  12. 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)

  13. 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

  14. "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,…

  15. 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,…

  16. 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,…

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

    ERIC Educational Resources Information Center

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

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

  18. 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…

  19. 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…

  20. 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.

  1. 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

  2. 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)

  3. 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

  4. 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

  5. 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.

  6. 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

  7. 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.

  8. 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…

  9. 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.

  10. 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…

  11. Hematopoietic Stem and Immune Cells in Chronic HIV Infection

    PubMed Central

    Zhang, Jielin; Crumpacker, Clyde

    2015-01-01

    Hematopoietic stem cell (HSC) belongs to multipotent adult somatic stem cells. A single HSC can reconstitute the entire blood system via self-renewal, differentiation into all lineages of blood cells, and replenishment of cells lost due to attrition or disease in a person's lifetime. Although all blood and immune cells derive from HSC, immune cells, specifically immune memory cells, have the properties of HSC on self-renewal and differentiation into lineage effector cells responding to the invading pathogens. Moreover, the interplay between immune memory cell and viral pathogen determines the course of a viral infection. Here, we state our point of view on the role of blood stem and progenitor cell in chronic HIV infection, with a focus on memory CD4 T-cell in the context of HIV/AIDS eradication and cure. PMID:26300920

  12. Screening for and Prevalence of HIV and Hepatitis C among an Outpatient Urban Sample of People with Serious Mental Illness and Co-Occurring Substance Abuse

    ERIC Educational Resources Information Center

    Himelhoch, Seth; Goldberg, Richard; Calmes, Christine; Medoff, Deborah; Slade, Eric; Dixon, Lisa; Gallucci, Gerard; Rosenberg, Stanley

    2011-01-01

    Background: To assess rates of screening and testing of HIV and HCV among those with serious mental illness and co-occurring substance use disorders. Methods: One hundred fifty-three people with serious mental illness and co-occurring substance use disorders completed measures and were screened for HIV and HCV. Results: Six percent were HIV…

  13. Screening for and Prevalence of HIV and Hepatitis C among an Outpatient Urban Sample of People with Serious Mental Illness and Co-Occurring Substance Abuse

    ERIC Educational Resources Information Center

    Himelhoch, Seth; Goldberg, Richard; Calmes, Christine; Medoff, Deborah; Slade, Eric; Dixon, Lisa; Gallucci, Gerard; Rosenberg, Stanley

    2011-01-01

    Background: To assess rates of screening and testing of HIV and HCV among those with serious mental illness and co-occurring substance use disorders. Methods: One hundred fifty-three people with serious mental illness and co-occurring substance use disorders completed measures and were screened for HIV and HCV. Results: Six percent were HIV…

  14. Unreported AIDS-defining opportunistic illnesses in persons reported with HIV-related severe immunosuppression.

    PubMed

    Lobato, M N; Klevens, R M; Li, J; Slutsker, L; Fleming, P L

    1999-09-01

    To better estimate the distribution of AIDS cases after the 1993 change in the case definition, we assessed the proportion of persons whose AIDS diagnosis was based on laboratory criteria for severe immunosuppression (CD4 count <200 cells/microl or <14%) and who also had an unreported opportunistic illness (OI) at the time of the CD4 report. Five U.S. reporting sites (Arizona; Los Angeles County, California; New Jersey; Oregon; and Washington State) reviewed AIDS cases reported between January 1 and June 30, 1993. From these sites, 3289 immunologic cases were reported; of these cases, 322 (9.8%; range, 1.6%-16.1%) were in persons who had an unreported OI. More of those who had an unreported OI were male, members of racial groups other than white, injection drug users, and had a CD4 count of <50 cells/microl at AIDS diagnosis. Because of recent advances in OI prophylaxis and treatment of HIV infection, studies monitoring HIV-related morbidity should assess the occurrence of OIs in a sample of persons reported with HIV and severe immunosuppression. Such assessment will ensure representative ascertainment of initial AIDS-defining OIs and thus improve the usefulness of the data for public health planning and the allocation of resources for patient care.

  15. Preliminary evidence for the integration of music into HIV prevention for severely mentally ill Latinas.

    PubMed

    Loue, Sana; Mendez, Nancy; Sajatovic, Martha

    2008-12-01

    Individuals with severe mental illness (SMI) may be at increased risk of HIV infection. Prevention programs designed specifically for SMI have relied primarily on principles of cognitive-behavior change theories delivered in a small group format and in venues and services utilized by SMI. Most intervention effects have not been shown to be sustainable over time. We report on our findings relating to the importance of music to Puerto Rican women with SMI and the implications for HIV prevention interventions with this population. We interviewed and shadowed over a 2-year period 53 women of Puerto Rican ethnicity between the ages of 18 and 50, residing in northeastern Ohio, who had been diagnosed with schizophrenia, bipolar disorder, or major depression. Nearly one-half of the participants listened to music regularly. Some reported that music was essential to their lives. Participants reported that music improved their mental and social well-being by facilitating expression and reflection of their emotions and increasing their energy levels. Music may affect the core negative symptoms and compensate for neuropsychological deficits in women with schizophrenia and related conditions by facilitating the articulation of emotion and allowing individuals to better attend to and potentially incorporate external activities into their lives. The use of music in HIV prevention efforts with SMI Latinas may facilitate their emotional expression and assist them in integrating the educative efforts into their life style choices.

  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. 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.

  1. 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

  2. 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.

  3. 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.

  4. 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.

  5. 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.

  6. 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

  7. 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.

  8. 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

  9. Perceived HIV stigma among children in a high HIV-prevalence area in central China: Beyond the parental HIV-related illness and death

    PubMed Central

    Lin, Xiuyun; Zhao, Guoxiang; Li, Xiaoming; Stanton, Bonita; Zhang, Liying; Hong, Yan; Zhao, Junfeng; Fang, Xiaoyi

    2010-01-01

    Objectives (1) examine the psychometric properties of two parallel measures of HIV-related stigma (i.e., perceived public stigma and children’s personal stigma against PLWHA) among these children; (2) examine whether expressions of stigma measures differ by child’s sex, developmental stage, family SES, or orphanhood status (i.e., AIDS orphans, vulnerable children, and comparison children); and (3) examine the association between HIV-related stigma and children’s psychosocial adjustments among these children. Methods Cross-sectional data were collected from 755 AIDS orphans (children who had lost one or both their parents to AIDS), 466 vulnerable children who lived with HIV-infected parents, and 404 comparison children who did not experience HIV-related illness and death in their families. The measures included perceived public stigma, personal stigma, depressive symptoms, loneliness, self-esteem, future expectations, hopefulness about the future, and perceived control over the future. Results Both stigma scales were positively associated with psychopathological symptoms (e.g., depression, loneliness) and negatively associated with psychosocial wellbeing (e.g., self-stigma, positive future expectation, hopefulness about future, and perceived control over the future). Both stigma measures contribute to children’s psychosocial problems independent of their orphanhood status and other key demographic factors. Conclusion Community-wide stigma reduction and psychological support should be part of the care efforts for children affected by AIDS. Stigma reduction efforts should not only target the stigma against PLWHA but also possible stigma against the entire community (e.g., villages) with a high prevalence of HIV/AIDS. The stigma reduction efforts also needs to be appropriate for children’s age, gender, family SES and AIDS experience in the family. Future research should explore individual and contextual factors such as social support, coping and attachment in

  10. 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

  11. 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

  12. Cortical consequences of HIV-1 Tat exposure in rats are enhanced by chronic cocaine

    PubMed Central

    Wayman, Wesley N.; Chen, Lihua; Persons, Amanda L.; Napier, T. Celeste

    2015-01-01

    The life span of individuals that are sero-positive for human immunodeficiency virus (HIV) has greatly improved; however, complications involving the central nervous system (CNS) remain a concern. While HIV does not directly infect neurons, the proteins produced by the virus, including HIV transactivator of transcription (Tat), are released from infected glia; these proteins can be neurotoxic. This neurotoxicity is thought to mediate the pathology underlying HIV-associated neurological impairments. Cocaine abuse is common among HIV infected individuals, and this abuse augments HIV-associated neurological deficits. The brain regions and pathophysiological mechanisms that are dysregulated by both chronic cocaine and Tat are the focus of the current review. PMID:25760043

  13. 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.

  14. Chronic Tobacco-Smoking on Psychopathological Symptoms, Impulsivity and Cognitive Deficits in HIV-Infected Individuals.

    PubMed

    Chang, Linda; Lim, Ahnate; Lau, Eric; Alicata, Daniel

    2017-09-01

    HIV-infected individuals (HIV+) has 2-3 times the rate of tobacco smoking than the general population, and whether smoking may lead to greater psychiatric symptoms or cognitive deficits remains unclear. We evaluated the independent and combined effects of being HIV+ and chronic tobacco-smoking on impulsivity, psychopathological symptoms and cognition. 104 participants [27 seronegative (SN)-non-Smokers, 26 SN-Smokers, 29 HIV+ non-Smokers, 22 HIV+ Smokers] were assessed for psychopathology symptoms (Symptom Checklist-90, SCL-90), depressive symptoms (Center for Epidemiologic Studies-Depression Scale, CES-D), impulsivity (Barratt Impulsiveness Scale, BIS), decision-making (The Iowa Gambling Task, IGT, and Wisconsin Card Sorting Test, WCST), and cognition (seven neurocognitive domains). Both HIV+ and Smoker groups had higher SCL-90 and CES-D scores, with highest scores in HIV+ Smokers. On BIS, both HIV+ and Smokers had higher Total Impulsiveness scores, with higher behavioral impulsivity in Smokers, highest in HIV+ Smokers. Furthermore, across the four groups, HIV+ Smokers lost most money and made fewest advantageous choices on the IGT, and had highest percent errors on WCST. Lastly, HIV+ had lower z-scores on all cognitive domains, with the lowest scores in HIV+ Smokers. These findings suggest that HIV-infection and chronic tobacco smoking may lead to additive deleterious effects on impulsivity, psychopathological (especially depressive) symptoms and cognitive dysfunction. Although greater impulsivity may be premorbid in HIV+ and Smokers, the lack of benefits of nicotine in chronic Smokers on attention and psychopathology, especially those with HIV-infection, may be due to the negative effects of chronic smoking on dopaminergic and cardio-neurovascular systems. Tobacco smoking may contribute to psychopathology and neurocognitive disorders in HIV+ individuals.

  15. 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.

  16. 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.

  17. Targeting type I interferon–mediated activation restores immune function in chronic HIV infection

    PubMed Central

    Zhen, Anjie; Rezek, Valerie; Youn, Cindy; Lam, Brianna; Chang, Nelson; Rick, Jonathan; Carrillo, Mayra; Martin, Heather; Kasparian, Saro; Syed, Philip; Brooks, David G.; Kitchen, Scott G.

    2016-01-01

    Chronic immune activation, immunosuppression, and T cell exhaustion are hallmarks of HIV infection, yet the mechanisms driving these processes are unclear. Chronic activation can be a driving force in immune exhaustion, and type I interferons (IFN-I) are emerging as critical components underlying ongoing activation in HIV infection. Here, we have tested the effect of blocking IFN-I signaling on T cell responses and virus replication in a murine model of chronic HIV infection. Using HIV-infected humanized mice, we demonstrated that in vivo blockade of IFN-I signaling during chronic HIV infection diminished HIV-driven immune activation, decreased T cell exhaustion marker expression, restored HIV-specific CD8 T cell function, and led to decreased viral replication. Antiretroviral therapy (ART) in combination with IFN-I blockade accelerated viral suppression, further decreased viral loads, and reduced the persistently infected HIV reservoir compared with ART treatment alone. Our data suggest that blocking IFN-I signaling in conjunction with ART treatment can restore immune function and may reduce viral reservoirs during chronic HIV infection, providing validation for IFN-I blockade as a potential therapy for HIV infection. PMID:27941243

  18. Targeting type I interferon-mediated activation restores immune function in chronic HIV infection.

    PubMed

    Zhen, Anjie; Rezek, Valerie; Youn, Cindy; Lam, Brianna; Chang, Nelson; Rick, Jonathan; Carrillo, Mayra; Martin, Heather; Kasparian, Saro; Syed, Philip; Rice, Nicholas; Brooks, David G; Kitchen, Scott G

    2017-01-03

    Chronic immune activation, immunosuppression, and T cell exhaustion are hallmarks of HIV infection, yet the mechanisms driving these processes are unclear. Chronic activation can be a driving force in immune exhaustion, and type I interferons (IFN-I) are emerging as critical components underlying ongoing activation in HIV infection. Here, we have tested the effect of blocking IFN-I signaling on T cell responses and virus replication in a murine model of chronic HIV infection. Using HIV-infected humanized mice, we demonstrated that in vivo blockade of IFN-I signaling during chronic HIV infection diminished HIV-driven immune activation, decreased T cell exhaustion marker expression, restored HIV-specific CD8 T cell function, and led to decreased viral replication. Antiretroviral therapy (ART) in combination with IFN-I blockade accelerated viral suppression, further decreased viral loads, and reduced the persistently infected HIV reservoir compared with ART treatment alone. Our data suggest that blocking IFN-I signaling in conjunction with ART treatment can restore immune function and may reduce viral reservoirs during chronic HIV infection, providing validation for IFN-I blockade as a potential therapy for HIV infection.

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

    PubMed Central

    Peltzer, Karl; Pengpid, Supa

    2016-01-01

    ABSTRACT The aim of this study was to explore the prevalence and relationship of anticipated chronic illness stigma among patients diagnosed with a variety of chronic diseases in three Southeast Asian countries (Cambodia, Myanmar and Vietnam). A cross-sectional survey was conducted in 4,803 adult chronic disease patients (mean age 49.3 years; SD=16.5) recruited systematically from health facilities. Overall, the results indicate that 20.7% of patients reported that for any of the 12 stigma items, they anticipated they were likely or very likely to experience chronic disease stigma. A multivariate analysis of sociodemographics revealed the following were associated with anticipated chronic disease stigma: older versus younger age, OR (odds ratio) = 0.71; 95% Confidence Interval (CI) [0.58, 0.87]; higher versus lower education, OR = 2.23; 95% CI [1.81, 2.75]; origin from Myanmar or Vietnam, being single, divorced or widowed, rural residence, and health status (having three or more chronic conditions versus having one chronic condition), OR = 1.93; 95% CI [1.58, 2.35]; lower versus higher quality of life, OR = 0.73; 95% CI [0.63, 0.85]); health risk behavior (physical inactivity, poor diet, current smoking, and problem drinking) and low versus medium or high medication adherence (OR = 0.69; 95% CI [0.55,0.86]). This study demonstrated the possible consequences of anticipated stigma on the health and behavior of people living with chronic diseases, and several factors for chronic disease stigma were identified that can help guide interventions to reduce chronic illness stigma in this population. PMID:28008198

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

    PubMed

    Peltzer, Karl; Pengpid, Supa

    2016-12-01

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

  1. Low health literacy: the impact on chronic illness management.

    PubMed

    Villaire, Michael; Mayer, Gloria

    2007-01-01

    Chronic disease affects 90 million American adults and disproportionately affects the elderly. Health literacy, or the ability to understand and apply information to care for oneself, is a challenge for the approximately 1 in 2 American adults who cannot read above a fifth-grade level. This article defines the problem of health literacy and provides useful information for case managers to better understand the scope of the problem and strategies for working with patients to ensure good communication. All settings. Raising awareness of the scope of low literacy among patients is critical for any practice. Implementing basic practices to ensure effective communication will increase the likelihood of patient compliance and successful outcomes. Keep key messages to patients to a minimum. Use the teach-back method with patients to ensure that they understand their care regimen and warning signs. Never ask, " Do you understand?" Ask patients to explain processes. Have your written patient education materials reviewed by a literacy expert to determine grade reading level. Materials should not be above a fifth-grade level, and should be culturally appropriate.

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

    PubMed

    Županić-Krmek; Sučić, Mirna; Bekić, Dinko

    2014-09-01

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

  3. Effectiveness of long-term acute care hospitalization in elderly patients with chronic critical illness

    PubMed Central

    Kahn, Jeremy M.; Werner, Rachel M.; David, Guy; Have, Thomas R. Ten; Benson, Nicole M.; Asch, David A.

    2012-01-01

    Background For patients recovering from severe acute illness, admission to a long-term acute care hospital (LTAC) is an increasingly common alternative to continued management in an intensive care unit. Objective To examine the effectiveness of LTAC transfer in patients with chronic critical illness. Research Design Retrospective cohort study in United States hospitals from 2002 to 2006. Subjects Medicare beneficiaries with chronic critical illness, defined as mechanical ventilation and at least 14 days of intensive care. Measures Survival, costs and hospital readmissions. We used multivariate analyses and instrumental variables to account for differences in patient characteristics, the timing of LTAC transfer and selection bias. Results A total of 234,799 patients met our definition of chronic critical illness. Of these, 48,416 (20.6%) were transferred to an LTAC. In the instrumental variable analysis, patients transferred to an LTAC experienced similar survival compared to patients who remained in an intensive care unit (adjusted hazard ratio = 0.99, 95% CI: 0.96 to 1.01, p=0.27). Total hospital-related costs in the 180 days following admission were lower among patients transferred to LTACs (adjusted cost difference = -$13,422, 95% CI: -26,662 to -223, p=0.046). This difference was attributable to a reduction in skilled nursing facility admissions (adjusted admission rate difference = -0.591 (95% CI: -0.728 to -0.454, p <0.001). Total Medicare payments were higher (adjusted cost difference = $15,592, 95% CI: 6,343 to 24,842, p=0.001). Conclusions Patients with chronic critical illness transferred to LTACs experience similar survival compared with patients who remain in intensive care units, incur fewer health care costs driven by a reduction in post-acute care utilization, but invoke higher overall Medicare payments. PMID:22874500

  4. Treatment interruption in chronically HIV-infected patients with an ultralow HIV reservoir.

    PubMed

    Calin, Ruxandra; Hamimi, Chiraz; Lambert-Niclot, Sidonie; Carcelain, Guislaine; Bellet, Jonathan; Assoumou, Lambert; Tubiana, Roland; Calvez, Vincent; Dudoit, Yasmine; Costagliola, Dominique; Autran, Brigitte; Katlama, Christine

    2016-03-13

    To investigate the potential for combination antiretroviral therapy (cART)-free remission following analytic treatment interruption (ATI) in chronically HIV-infected patients with ultralow cell-associated DNA. Pilot study of patients (pts) with plasma viral load (pVL) less than 50 copies/ml for more than 2 years on cART, CD4 above 500 cells/μl, CD4/CD8 above 0.9, CD4 nadir above 300 cells/μl and HIV-DNA below 100 copies/10 peripheral blood mononuclear cells (PBMCs), undergoing treatment interruption. Ultrasensitive pVL, CD4 cell count, triplicate HIV-DNA were measured at D0, W2, W4, and every 4 weeks off-ART until W48 and at W4, W12 and W24 after ART resumption (RxR). RxR occurred in case of pVL rebound above 400 copies/ml or CD4 above 400 cells or HIV-related clinical event. The primary endpoint was the percentage of patients who did not reach RxR criteria at W24. Individuals were to be enrolled in three cohorts of five. Enrolment in cohort 2 began if at least one of five patients from cohort 1 remained in success at W8. Cohort 3 did not start. Ten patients were enrolled, with median (range) CD4 1118 cells/μl (608-1494), CD4/CD8 2.1 (1.4-2.6), HIV-DNA 66 copies/10 PBMC (<66-66) at screening, viral suppression of 4.9 years (2.9-8.3), CD4 nadir 495 cells/μl (330-739). One patient remained off-ART up to W48. Viral rebound occurred in nine of 10 patients at W2 (2 patients), W4 (6 patients) and W12 (one patient). pVL was resuppressed on cART at W4 (8 patients) and W12 (one patient). HIV DNA returned to baseline values within a median of 12 weeks following RxR. In a highly selected population of 10 patients with chronic HIV infection, an excellent immune status, durable virological suppression and ultralow reservoir, the success rate of ATI was 10% (95% confidence interval 0.3-44.5%) and nine of 10 patients had prompt rebound of plasma viremia. Resumption of ART led to return to baseline cell-associated total DNA.

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

    PubMed

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

    2016-02-01

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

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

    PubMed Central

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

    2010-01-01

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

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

    PubMed

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

    2015-09-01

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

  8. From threat to gradual lifestyle changes: Iranians' experiences with chronic illnesses.

    PubMed

    Vahedparast, H; Mohammadi, E; Ahmadi, F

    2017-09-01

    This study aimed to explore and describe the experience of making a healthy lifestyle change among the patients with chronic illness. Despite the existence of different evidence on the critical role of lifestyle in the prevention and management of chronic diseases, many people face challenges in terms of starting and maintaining a healthy lifestyle. A descriptive qualitative study with in-depth semi-structured interviews was carried out in 2015 in Iran. Thirty-four patients with common chronic illnesses were invited to the study using purposive sampling. The collected data were analysed by content analysis. The main themes were: trying to remove the perceived threat, considering and trying to do physical activities, considering and planning for a healthy diet, striving to manage stress and having gradual acceptance of new habits and coping with them. The participants were selected from among those with chronic illness. However, there is also a need to assess the family and healthcare providers' perspectives. The perceived threat of the disease plays an important role in the process of changing to a healthy lifestyle in Iranian with chronic illnesses. It is necessary for healthcare providers, especially nurses, to use this threat as a golden opportunity to accelerate changes in patients' behaviours. Findings may help policy makers become aware of the need for nurses to create community-based nursing in Iran. Community nurses can remind patients of perceived threats to their health to motivate them for continued healthy behaviours. Therefore, nursing curricula should be revised and educational programs utilise a community-based health approach. © 2016 International Council of Nurses.

  9. Comparability of health service use by veterans with multisymptom illness and those with chronic diseases.

    PubMed

    Gwini, Stella M; Forbes, Andrew B; Sim, Malcolm R; Kelsall, Helen L

    2017-02-01

    To compare health service utilization and disability claims among military personnel with multisymptom illness (MSI) (but no chronic diseases), those with chronic disease(s) and those without MSI or chronic diseases. MSI is also known as Gulf War illness. Cohort study. Australia. In total, 1288 participants of a Gulf War veterans' study conducted in 2000-2003 (Wave-1) were followed up in 2011-2012 (Wave-2), aged on average 40 years. About 160 had MSI, 217 had chronic disease(s) and 911 had neither chronic disease(s) nor MSI. At Wave-2, the cohort was linked to the national Medicare and Department of Veterans' Affairs (DVA) databases to obtain health service utilization and disability claims data recorded between 2001 and 2012. The likelihood of visiting a general practitioner (GP) (risk ratio [RR] = 1.04, 95% confidence interval [CI] = 0.92, 1.19) or visiting a specialist medical doctor (RR = 0.83; 95% CI = 0.54, 1.28) or hospitalizations (RR = 0.89; 95% CI = 0.61, 1.29) or) in the 12 months preceding Wave-2 or successfully claiming for DVA disability compensation (RR = 1.13; 95% CI = 0.86, 1.47) was similar for personnel with MSI and those with chronic disease(s). However, GP consultations, hospitalizations, specialist doctor consultations and disability claims were significantly higher among those with MSI than those without MSI/chronic diseases. Health service use and disability claims by personnel with MSI were comparable to those with chronic disease(s), but were in excess of those without MSI/chronic diseases. Hence recognition of the high health service use by personnel with MSI is important to ensure adequate provision of health services.

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

    PubMed Central

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

    2009-01-01

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

  11. Profound metabolic, functional, and cytolytic differences characterize HIV-specific CD8 T cells in primary and chronic HIV infection

    PubMed Central

    Mbitikon-Kobo, Florentin-Martial; Goulet, Jean-Philippe; Peretz, Yoav; Shi, Yu; Van Grevenynghe, Julien; Procopio, Francesco Andrea; Boulassel, Mohamad Rachid; Routy, Jean-Pierre; Chomont, Nicolas; Haddad, Elias K.; Sekaly, Rafick-Pierre

    2012-01-01

    Immediate-early host-virus interactions that occur during the first weeks after HIV infection have a major impact on disease progression. The mechanisms underlying the failure of HIV-specific CD8 T-cell response to persist and control viral replication early in infection are yet to be characterized. In this study, we performed a thorough phenotypic, gene expression and functional analysis to compare HIV-specific CD8 T cells in acutely and chronically infected subjects. We showed that HIV-specific CD8 T cells in primary infection can be distinguished by their metabolic state, rate of proliferation, and susceptibility to apoptosis. HIV-specific CD8 T cells in acute/early HIV infection secreted less IFN-γ but were more cytotoxic than their counterparts in chronic infection. Importantly, we showed that the levels of IL-7R expression and the capacity of HIV-specific CD8 T cells to secrete IL-2 on antigenic restimulation during primary infection were inversely correlated with the viral set-point. Altogether, these data suggest an altered metabolic state of HIV-specific CD8 T cells in primary infection resulting from hyperproliferation and stress induced signals, demonstrate the discordant function of HIV-specific CD8 T cells during early/acute infection, and highlight the importance of T-cell maintenance for viral control. PMID:22955926

  12. Intra-Facility Linkage of HIV-Positive Mothers and HIV-Exposed Babies into HIV Chronic Care: Rural and Urban Experience in a Resource Limited Setting

    PubMed Central

    Mugasha, Christine; Kigozi, Joanita; Kiragga, Agnes; Muganzi, Alex; Sewankambo, Nelson; Coutinho, Alex; Nakanjako, Damalie

    2014-01-01

    Introduction Linkage of HIV-infected pregnant women to HIV care remains critical for improvement of maternal and child outcomes through prevention of maternal-to-child transmission of HIV (PMTCT) and subsequent chronic HIV care. This study determined proportions and factors associated with intra-facility linkage to HIV care and Early Infant Diagnosis care (EID) to inform strategic scale up of PMTCT programs. Methods A cross-sectional review of records was done at 2 urban and 3 rural public health care facilities supported by the Infectious Diseases Institute (IDI). HIV-infected pregnant mothers, identified through routine antenatal care (ANC) and HIV-exposed babies were evaluated for enrollment in HIV clinics by 6 weeks post-delivery. Results Overall, 1,025 HIV-infected pregnant mothers were identified during ANC between January and June, 2012; 267/1,025 (26%) in rural and 743/1,025 (74%) in urban facilities. Of these 375/1,025 (37%) were linked to HIV clinics [67/267(25%) rural and 308/758(41%) urban]. Of 636 HIV-exposed babies, 193 (30%) were linked to EID. Linkage of mother-baby pairs to HIV chronic care and EID was 16% (101/636); 8/179 (4.5%)] in rural and 93/457(20.3%) in urban health facilities. Within rural facilities, ANC registration <28 weeks-of-gestation was associated with mothers' linkage to HIV chronic care [AoR, 2.0 95% CI, 1.1–3.7, p = 0.019] and mothers' multi-parity was associated with baby's linkage to EID; AoR 4.4 (1.3–15.1), p = 0.023. Stigma, long distance to health facilities and vertical PMTCT services affected linkage in rural facilities, while peer mothers, infant feeding services, long patient queues and limited privacy hindered linkage to HIV care in urban settings. Conclusion Post-natal linkage of HIV-infected mothers to chronic HIV care and HIV-exposed babies to EID programs was low. Barriers to linkage to HIV care vary in urban and rural settings. We recommend targeted interventions to rapidly improve linkage to

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

    PubMed

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

    2015-07-01

    The upward trend of chronic illness in working age populations calls for better understanding of the difficulties chronically ill people face with workforce participation. Existing research focuses primarily on physical limitations and employer attitudes about chronic illness. Here we use a space-time approach to illuminate the importance of negotiating logistical challenges and embodied rhythms when balancing work and chronic illness. We draw from time geography and rhythmanalysis in analysing interviews from a qualitative case study of 26 individuals living with chronic kidney disease in Australia. Difficulties with paid work arise from: (1) competition for space-time resources by employers and health services; (2) arrhythmias between the body, work and health services; and (3) the absence of workplace rhythms on which to 'hook' health activities. Implications for workplaces and health services design are discussed. Copyright © 2015 Elsevier Ltd. All rights reserved.

  14. Latent toxoplasmosis is associated with neurocognitive impairment in young adults with and without chronic HIV infection.

    PubMed

    Ene, L; Marcotte, T D; Umlauf, A; Grancea, C; Temereanca, A; Bharti, A; Achim, C L; Letendre, S; Ruta, S M

    2016-10-15

    We evaluated the impact of latent toxoplasmosis (LT) on neurocognitive (NC) and neurobehavioural functioning in young adults with and without chronic HIV infection, using a standardised NC test battery, self-reported Beck Depression Inventory, Frontal System Behavior Scale, MINI-International Neuropsychiatric Interview and risk-assessment battery. 194 young adults (median age 24years, 48.2% males) with chronic HIV infection (HIV+) since childhood and 51 HIV seronegative (HIV-) participants were included. HIV+ individuals had good current immunological status (median CD4: 479 cells/μl) despite a low CD4 nadir (median: 93 cells/μl). LT (positive anti-Toxoplasma IgG antibodies) was present in one third of participants. The impairment rates in the HIV- with and without Toxo were not significantly different (p=0.17). However, we observed an increasing trend (p<0.001) in impairment rates with HIV and LT status: HIV-/LT- (6.1%); HIV-/LT+ (22%), HIV+/LT- (31%), HIV+/LT+ (49%). In a multivariable analysis using the entire study group there were main effects on cognition for HIV and also for LT. Within the HIV+ group LT was associated with worse performance globally (p=0.006), in memory (p=0.009), speed of information processing (p=0.01), verbal (p=0.02) and learning (p=0.02) domains. LT was not associated with depressive symptoms, frontal systems dysfunction or risk behaviors in any of the groups. HIV participants with lower Toxoplasma antibody concentration had worse NC performance, with higher GDS values (p=0.03) and worse learning (p=0.002), memory (p=0.006), speed of information processing (p=0.01) T scores. Latent Toxoplasmosis may contribute to NC impairment in young adults, including those with and without chronic HIV infection.

  15. A randomized trial of a nursing intervention for HIV disease management among persons with serious mental illness.

    PubMed

    Blank, Michael B; Hanrahan, Nancy P; Fishbein, Martin; Wu, Evan S; Tennille, Julie A; Ten Have, Thomas R; Kutney-Lee, Ann M; Gross, Robert; Hines, Janet M; Coyne, James C; Aiken, Linda H

    2011-11-01

    The heightened risk of persons with serious mental illness to contract and transmit HIV is recognized as a public health problem. Persons with HIV and mental illness may be at risk for poor treatment adherence, development of treatment-resistant virus, and worse outcomes. The objective of this study was to test the effectiveness of a community-based advanced practice nurse (APN) intervention (PATH, Preventing AIDS Through Health) to promote adherence to HIV and psychiatric treatment regimens. Community-dwelling HIV-positive participants with co-occurring serious mental illnesses (N=238) were recruited from community HIV provider agencies from 2004 to 2008 to participate in the randomized controlled trial. Participants in the intervention group (N=128) were assigned an APN who provided community-based care management at a minimum of one visit per week and coordinated clients' medical and mental health care for one year. Viral load and CD4 cell count were evaluated at baseline and 12 months. Longitudinal models for continuous log viral load showed that compared with the control group, the intervention group exhibited a significantly greater reduction in log viral load at 12 months (d=-.361 log 10 copies per milliliter, p<.001). Differences in CD4 counts from baseline to 12 months were not statistically significant. This project demonstrated the effectiveness of community-based APNs in delivering a tailored intervention to improve outcomes of individuals with HIV and co-occurring serious mental illnesses. Persons with these co-occurring conditions can be successfully treated; with appropriate supportive services, their viral loads can be reduced.

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

    PubMed

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

    2016-09-28

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

  17. Attentional and interpretive bias towards illness-related information in chronic fatigue syndrome: A systematic review.

    PubMed

    Hughes, Alicia; Hirsch, Colette; Chalder, Trudie; Moss-Morris, Rona

    2016-11-01

    Chronic fatigue syndrome (CFS) is characterized by severe and debilitating fatigue. Studies based on self-report measures suggest negative illness representations, related symptom interpretations, and heightened symptom focusing are maintaining factors of fatigue. This study reviews studies which have investigated these cognitive biases using experimental methods, to (1) review the evidence for information processing biases in CFS; (2) determine the nature of these biases, that is the stages cognitive biases occur and for what type of stimuli; and (3) provide directions for future methodologies in this area. Studies were included that measured attention and interpretation bias towards negative and illness-related information in people with CFS and in a comparison group of healthy controls. PubMed, Ovid, CINAHL, PsycINFO, Web of Science, and EThOS were searched until December 2014. The evidence for cognitive biases was dependent on the methodology employed as well as the type and duration of the stimuli presented. Modified Stroop studies found weak evidence of an attentional bias in CFS populations, whereas visual-probe studies consistently found an attentional bias in CFS groups for health-threatening information presented for 500 ms or longer. Interpretative bias studies which required elaborative processing, as opposed to a spontaneous response, found an illness-related interpretive bias in the CFS group compared to controls. Some people with CFS have biases in the way they attend to and interpret somatic information. Such cognitive processing biases may maintain illness beliefs and symptoms in people with CFS. This review highlights methodological issues in experimental design and makes recommendations to aid future research to forge a consistent approach in cognitive processing research. Statement of contribution What is already known on this subject? Studies based on self-report measures suggest negative illness representations, related symptom

  18. Lived experiences and illness representation of Taiwanese patients with late-stage chronic kidney disease.

    PubMed

    Wu, Chia-Chen; Lin, Chiu-Chu; Hsieh, Hsiu-Fang; Chang, Shu-Chen

    2016-12-01

    This qualitative study was designed to identify patients' experiences and perceptions related to living with late-stage chronic kidney disease. Interviews were held for 15 patients with late-stage chronic kidney disease from two medical centers in Taiwan. Five themes were identified using content analysis: experiencing moderate to severe symptoms and signs; tracing back to causes; realizing the long-term, irreversible nature of the disease; facing the consequence of unavoidable deterioration; and coping with the disease. The findings present the special lived experiences of Taiwanese chronic kidney disease patients and highlight the need for healthcare providers to assess patients' illness representation before offering interventions for patients coping with chronic kidney disease. © The Author(s) 2015.

  19. Sepsis Pathophysiology, Chronic Critical Illness, and Persistent Inflammation-Immunosuppression and Catabolism Syndrome.

    PubMed

    Mira, Juan C; Gentile, Lori F; Mathias, Brittany J; Efron, Philip A; Brakenridge, Scott C; Mohr, Alicia M; Moore, Frederick A; Moldawer, Lyle L

    2017-02-01

    To provide an appraisal of the evolving paradigms in the pathophysiology of sepsis and propose the evolution of a new phenotype of critically ill patients, its potential underlying mechanism, and its implications for the future of sepsis management and research. Literature search using PubMed, MEDLINE, EMBASE, and Google Scholar. Sepsis remains one of the most debilitating and expensive illnesses, and its prevalence is not declining. What is changing is our definition(s), its clinical course, and how we manage the septic patient. Once thought to be predominantly a syndrome of over exuberant inflammation, sepsis is now recognized as a syndrome of aberrant host protective immunity. Earlier recognition and compliance with treatment bundles has fortunately led to a decline in multiple organ failure and in-hospital mortality. Unfortunately, more and more sepsis patients, especially the aged, are suffering chronic critical illness, rarely fully recover, and often experience an indolent death. Patients with chronic critical illness often exhibit "a persistent inflammation-immunosuppression and catabolism syndrome," and it is proposed here that this state of persisting inflammation, immunosuppression and catabolism contributes to many of these adverse clinical outcomes. The underlying cause of inflammation-immunosuppression and catabolism syndrome is currently unknown, but there is increasing evidence that altered myelopoiesis, reduced effector T-cell function, and expansion of immature myeloid-derived suppressor cells are all contributory. Although newer therapeutic interventions are targeting the inflammatory, the immunosuppressive, and the protein catabolic responses individually, successful treatment of the septic patient with chronic critical illness and persistent inflammation-immunosuppression and catabolism syndrome may require a more complementary approach.

  20. Five-Year Survival of Children With Chronic Critical Illness in Australia and New Zealand.

    PubMed

    Namachivayam, Siva P; Alexander, Janet; Slater, Anthony; Millar, Johnny; Erickson, Simon; Tibballs, James; Festa, Marino; Ganu, Subodh; Segedin, Liz; Schlapbach, Luregn J; Williams, Gary; Shann, Frank; Butt, Warwick

    2015-09-01

    Outcomes for children with chronic critical illness are not defined. We examined the long-term survival of these children in Australia and New Zealand. All cases of PICU chronic critical illness with length of stay more than 28 days and age 16 years old or younger in Australia and New Zealand from 2000 to 2011 were studied. Five-year survival was analyzed using Kaplan-Meir estimates, and risk factors for mortality evaluated using Cox regression. All PICUs in Australia and New Zealand. Nine hundred twenty-four children with chronic critical illness. None. Nine hundred twenty-four children were admitted to PICU for longer than 28 days on 1,056 occasions, accounting for 1.3% of total admissions and 23.5% of bed days. Survival was known for 883 of 924 patients (95.5%), with a median follow-up of 3.4 years. The proportion with primary cardiac diagnosis increased from 27% in 2000-2001 to 41% in 2010-2011. Survival was 81.4% (95% CI, 78.6-83.9) to PICU discharge, 70% (95% CI, 66.7-72.8) at 1 year, and 65.5% (95% CI, 62.1-68.6) at 5 years. Five-year survival was 64% (95% CI, 58.7-68.6) for children admitted in 2000-2005 and 66% (95% CI, 61.7-70) if admitted in 2006-2011 (log-rank test, p = 0.37). After adjusting for admission severity of illness using the Paediatric Index of Mortality 2 score, predictors for 5-year mortality included bone marrow transplant (hazard ratio, 3.66; 95% CI, 2.26-5.92) and single-ventricle physiology (hazard ratio, 1.98; 95% CI, 1.37-2.87). Five-year survival for single-ventricle physiology was 47.2% (95% CI, 34.3-59.1) and for bone marrow transplantation 22.8% (95% CI, 8.7-40.8). Two thirds of children with chronic critical illness survive for at-least 5 years, but there was no improvement between 2000 and 2011. Cardiac disease constitutes an increasing proportion of pediatric chronic critical illness. Bone marrow transplant recipients and single-ventricle physiology have the poorest outcomes.

  1. [Self-management support in chronic illness: history, concept and challenges].

    PubMed

    Haslbeck, Jörg W; Schaeffer, Doris

    2007-04-01

    Self-management in chronic illness has been discussed internationally for some time now. It has become increasingly important in German speaking countries as well. During the last years programs for self-management support have been developed with good progress. At the same time self-management has turned into a collective term. This article aims at clarifying terms and discussing aspects of definitions and concepts of self-management. Furthermore, it presents the tasks of self-management support and discusses needs for further discussion and action. The main focus of this article is on the importance of self-management support in dealing with chronic illness--one of the most important areas of its application.

  2. Research needs and strategies to establish best practices and cost effective models for chronic critical illness.

    PubMed

    Carson, Shannon S

    2012-06-01

    Past research in chronic critical illness has been effective in defining the population and identifying unique aspects of their outcomes and resource needs, but there has been little research focused on interventions to improve outcomes. This review discusses some research priorities that could have immediate impact on patient outcomes. General topics include prevention or limiting the incidence of chronic critical illness; specific topics related to patient management, such as interventions for weaning, rehabilitation, nutrition or infections; and methods to enhance communication and end-of-life care. In addition to specific patient management interventions, further comparative effectiveness research on care settings is indicated, considering the expected growth in the patient population and the substantial resource needs. 2012 Daedalus Enterprises

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

    PubMed Central

    Gilleard, Chris; Higgs, Paul

    2014-01-01

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

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

    PubMed Central

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

    2016-01-01

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

  5. 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.

  6. [More consideration to dietary protein in the nutrition of chronically ill adults with tendency to weight loss].

    PubMed

    Sauerwein, H P; Romijn, J A

    1999-04-24

    Weight loss is an independent risk factor for mortality in chronically ill weight-losing patients. Hunger strikers and chronically ill patients die after a weight loss of about 40%; weight loss is strongly correlated with loss of lean body mass. Lean body mass is determined by protein synthesis and protein breakdown. Increased supply of amino acids diminishes loss of lean body mass. It is advisable to increase the protein content of the diet of chronically ill weight-losing patients to the level that maximally stimulates protein synthesis, i.e. 1.5 g protein/kg/day.

  7. Poverty and chronic illness in early childhood: a comparison between the United kingdom and Quebec.

    PubMed

    Nikiéma, Béatrice; Spencer, Nick; Séguin, Louise

    2010-03-01

    Our goal was to examine the association between poverty, in the first and fourth years of life and cumulatively in the first and fourth years of life, and the health of children in the fourth year of life in the UK Millennium Cohort Study and in the Quebec Longitudinal Study of Child Development (QLSCD). Data from the UK Millennium Cohort Study of 14 556 children and from the QLSCD of 1950 children were analyzed. Comparable measures of poverty were households in receipt of the safety-net benefit: income support in the United Kingdom and social welfare in Quebec. Three parent-reported health indicators were examined: asthma attack, long-standing illness, and limiting long-standing illness by the fourth year of life. Associations were explored with logistic regression modeling controlling for child characteristics and maternal education. Poverty only in the first year of life significantly increased the risk of asthma attacks and limiting long-standing illness in the fourth year of life among UK children; trends were in the expected direction in the QLSCD but did not reach statistical significance. Poverty in the fourth year of life only significantly increased the risk of all 3 outcomes for UK children but not for Quebec children. For children experiencing poverty in both the first and fourth years of life, the risks for all 3 outcomes also increased in the United Kingdom, whereas only the risk of limiting long-standing illness increased in Quebec. Adjustment for confounding had little effect on the increased risks associated with poverty. These findings suggest that experience of poverty at various times in early childhood increases the risk of asthma attacks and chronic illness in the fourth year of life; however, they also indicate that poverty at different stages of the early childhood life course may have different effects on chronic illness in different country settings.

  8. Chronic illness and functional limitation in Ontario children: findings of the Ontario Child Health Study.

    PubMed Central

    Cadman, D; Boyle, M H; Offord, D R; Szatmari, P; Rae-Grant, N I; Crawford, J; Byles, J

    1986-01-01

    The Ontario Child Health Study (OCHS) was based on interviews of 1869 Ontario families who were selected by means of a stratified, multistaged sampling method from the 1981 census of Canada. Its primary purpose was to determine the prevalence and distribution of mental health problems in Ontario children aged 4 to 16 years and their families, but it also allowed an estimate of other significant medical conditions and provided an overview of these children's use of health care, education and social services. Our results are based on questionnaire responses concerning 3294 children. Limitation of function without a chronic illness or medical condition was reported in 1.9%, the converse in 14.0%, and a chronic illness or medical condition with limitation of function in 3.7%. When the three groups are considered together, 19.6% of Ontario children had a chronic health problem. Children of lower socioeconomic status were much more likely to have chronic health problems. Overall, children with chronic health problems were more likely to use physician, special education, social and mental health services. These findings have implications for those who provide services for children, plan community programs or train professionals in caring for children. PMID:3756702

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

    PubMed

    Vijayasingham, Lavanya

    2017-01-01

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

  10. The meaningfulness of time; Narratives of cancer among chronically ill older adults

    PubMed Central

    Hannum, Susan M.; Rubinstein, Robert L.

    2015-01-01

    This study, using ethnographically-based interviews, sought to describe how chronically ill older adults experience a new cancer diagnosis and the effects of this on their interpretations of personal health, aging, and the future. Three semi-structured interviews were conducted with each of the fifteen informants. We asked questions that explored the individual's life history, chronic illness occurrence, and direct experiences with cancer. Interviews were structured to provide social and historical contexts to enhance our understanding of the informants’ illness narratives. Interview transcripts were analyzed thematically to describe how individuals described the cancer experience, its meaning, and its consequences. One of the major findings of our study was the role of cancer in disrupting individual biography, an interruption that fragmented time into three distinct segments: the Recalled Past, the Existent Present, and the Imagined Future. We highlight three main themes around the experience of illness-related time: (a) disruption found in individual biographical accounts as a result of fragmented time dimensions; (b) altered projections of a continuous sense of self into the future; and (c) modified treatment decisions resulting from a perceived altered life course and the finitude of advancing age. We further introduce the concept of Anomalous Time as a permutation of time central to individual experiences of cancer. Implications for how older adults understood their cancer and individual reactions relevant to seeking care are discussed. PMID:26880601

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

    PubMed

    Radcliffe, Eloise; Lowton, Karen; Morgan, Myfanwy

    2013-09-01

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

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

    PubMed Central

    Shamsaei, Farshid; Cheraghi, Fatemeh; Esmaeilli, Ravanbakhsh

    2015-01-01

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

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

    PubMed Central

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

    2015-01-01

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

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

    PubMed

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

    2013-02-01

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

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

    PubMed Central

    2013-01-01

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

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

    PubMed Central

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

    2011-01-01

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

  17. The validity of the Substance Abuse and Mental Illness Symptom Screener (SAMISS) in people living with HIV/AIDS in primary HIV care in Cape Town, South Africa.

    PubMed

    Breuer, Erica; Stoloff, Kevin; Myer, Landon; Seedat, Soraya; Stein, Dan J; Joska, John A

    2014-06-01

    Given the high prevalence of HIV in South Africa and co-morbid mental disorders in people living with HIV/AIDs (PLWHA) we sought to validate a brief screening tool in primary HIV care. 366 PLWHA were recruited prior to combination anti-retroviral treatment (CART) initiation from two primary health HIV clinics. A mental health nurse administered a socio-demographic questionnaire and the Mini Neuropsychiatric Interview (MINI) and a lay counsellor administered the Substance and Mental Illness Symptom Screener (SAMISS). Using the MINI, 17 % of participants were identified with either depression, anxiety disorders or adjustment disorder and 18 % with substance or alcohol abuse/dependence. The sensitivity and specificity of the SAMISS was 94 % (95 % CI: 88-98 %) and 58 % (95 % CI: 52-65 %) respectively, with the alcohol component (sensitivity: 94 %; specificity: 85 %) performing better than the mental illness component of the SAMISS (sensitivity: 97 %; specificity: 60 %). The specificity of the tool improved when the cut-off for the mental illness component was increased. The SAMISS may provide a useful first tier screening tool for common mental disorders in primary care for PLWHA.

  18. Specialists understanding of the health care preferences of chronically ill adolescents.

    PubMed

    Britto, Maria T; Slap, Gail B; DeVellis, Robert F; Hornung, Richard W; Atherton, Harry D; Knopf, Jennifer M; DeFriese, Gordon H

    2007-04-01

    Doctors must understand patients' priorities to create an effective treatment partnership. Little is known about whether subspecialist pediatricians understand chronically ill adolescents' preferences. A survey was conducted of 155 adolescents with chronic illnesses and 52 subspecialty physicians recruited from the same clinics of a children's hospital. Adolescents and physicians rated the importance that adolescents place on items relating to quality of care and physician-patient communication styles using a previously validated measure. For quality of care items, rank order correlation between physicians and patient responses was high (r = .63, p < .001) and both rated pain management items as most important. Physicians underestimated the importance adolescents placed on communicating with the physician as a friend and medical-technical aspects of care. For communication items, physicians' responses were significantly different than adolescents for 13 of 17 items. Except for three items pertaining to autonomy, physician and patient responses were in the same direction, but adolescent responses were less extreme. Physicians understood the importance of pain management to adolescents with chronic illnesses, but overestimated their desired level of autonomy. Asking adolescents for their preferences may be the first step in improving adolescents' experience of care.

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

    PubMed Central

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

    2012-01-01

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

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

    PubMed

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

    2012-08-15

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

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

    PubMed

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

    2017-03-01

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

  2. The Relation of Illness Perceptions to Stress, Depression, and Fatigue in Patients with Chronic Lymphocytic Leukemia

    PubMed Central

    Maddocks, Kami; Andersen, Barbara L.

    2016-01-01

    Objective Chronic lymphocytic leukemia (CLL) is the most prevalent adult leukemia and is incurable. The course and treatment of CLL is unique and characterized by repeated cycles of treatment, stable disease, and relapse. Utilizing a Self-Regulatory Model framework (Leventhal et al., 1980), we examined the relationship between patients’ illness perceptions and cancer-specific stress, depression, and fatigue. Our aim was to test illness perceptions as predictors of these outcomes when variance due to disease and treatment variables was controlled. Design Data were collected on 147 patients with relapsed/refractory CLL as they entered a phase-II clinical trial of an investigational medication at a university affiliated, National Cancer Institute designated comprehensive cancer center. Main outcome measures Cancer-specific stress, depressive symptoms, and fatigue interference. Results Hierarchical multiple regression was used. Consequences and emotional representation were related to all outcomes (ps <.01). Illness concern was related to cancer-specific stress (p <.01), and identity was related to fatigue interference (p <.01). All relationships were observed while controlling for number of previous CLL therapies received. Conclusion Illness perceptions are related to cancer-specific stress, depressive symptoms, and fatigue interference in relapsed/refractory CLL. Interventions targeted at restructuring maladaptive illness perceptions may have clinical benefit in this population. PMID:26982998

  3. Risk of developing specific AIDS-defining illnesses in patients coinfected with HIV and hepatitis C virus with or without liver cirrhosis.

    PubMed

    d'Arminio Monforte, Antonella; Cozzi-Lepri, Alessandro; Castagna, Antonella; Antinori, Andrea; De Luca, Andrea; Mussini, Cristina; Caputo, Sergio Lo; Arlotti, Massimo; Magnani, Giacomo; Pellizzer, Gianpietro; Maggiolo, Franco; Puoti, Massimo

    2009-08-15

    There are few data concerning the risk of specific opportunistic diseases in patients with and without hepatitis C virus (HCV) infection. We evaluated the correlation between the occurrence of different AIDS-defining illnesses (ADIs) and chronic HCV infection or HCV-related liver cirrhosis in a large Italian cohort of human immunodeficiency virus (HIV)-infected subjects. Subjects were stratified into 2 groups: patients without HCV coinfection and with persistently normal aminotransferase levels and patients with HCV coinfection. The patients with HCV coinfection were stratified according to the diagnosis of liver cirrhosis. The incidences of new ADIs were calculated as the number of events per 1000 person-years of follow-up. The rates in the 2 groups were compared using a Poisson regression model adjusted for potential confounders. We observed a total of 496 ADIs among 5397 patients with 25,105 person-years of follow-up (50% tested positive for HCV). HCV coinfection was associated with increased risk of developing an ADI (adjusted relative rate [ARR], 2.61; 95% confidence interval [CI], 1.88-3.61), specifically bacterial infection (ARR, 3.15; 95% CI, 1.76-5.67), HIV-related disease (ARR, 2.68; 95% CI, 1.03-6.97), and mycotic disease (ARR, 3.87; 95% CI, 2.28-6.59) but not non-Hodgkin lymphoma (ARR, 0.88; 95% CI, 0.22-3.48). The rate of mycotic infection, bacterial infection, toxoplasmosis, and HIV-related ADI among patients with cirrhosis were significantly higher than that among HIV-monoinfected patients, and the risk was greater than that estimated for HCV antibody-positive patients without cirrhosis. HIV-related bacterial and mycotic infections are strongly associated with positive HCV serostatus and HCV-related cirrhosis. Clinicians should take into account these data when making decisions on initiation of antiretroviral therapy for HCV-coinfected individuals.

  4. Variations in Patients' Assessment of Chronic Illness Care across Organizational Models of Primary Health Care: A Multilevel Cohort Analysis

    PubMed Central

    Lévesque, Jean-Frédéric; Feldman, Debbie Ehrmann; Lemieux, Valérie; Tourigny, André; Lavoie, Jean-Pierre; Tousignant, Pierre

    2012-01-01

    Purpose: To measure patients' assessment of chronic illness care and its variation across primary healthcare (PHC) models. Methods: We recruited 776 patients with diabetes, heart failure, arthritis or chronic obstructive pulmonary disease from 33 PHC clinics. Face-to-face interviews, followed by a telephone interview at 12 months, were conducted using the Patient Assessment of Chronic Illness Care (PACIC). Multilevel regression was used in the analysis. Results: The mean PACIC score was low at 2.5 on a scale of 1 to 5. PACIC scores were highest among patients affiliated with family medicine groups (mean, 2.78) and lowest for contact models (mean, 2.35). Patients with arthritis and older persons generally reported a lower assessment of chronic care. Conclusion: Family medicine groups represent an integrated model of PHC associated with higher levels of achievement in chronic care. Variations across PHC organizations suggest that some models are more appropriate for improving management of chronic illness. PMID:23968619

  5. HIV illness representation as a predictor of self-care management and health outcomes: a multi-site, cross-cultural study.

    PubMed

    Reynolds, N R; Eller, L Sanzero; Nicholas, P K; Corless, I B; Kirksey, K; Hamilton, M J; Kemppainen, J K; Bunch, E; Dole, P; Wantland, D; Sefcik, E; Nokes, K M; Coleman, C L; Rivero, M; Canaval, G E; Tsai, Y F; Holzemer, W L

    2009-04-01

    Research has shown that the perceptions that form the cognitive representation of an illness (illness representation) are fundamental to how persons cope with illness. This study examined the relationship of illness representation of HIV with self-care behavior and health outcomes. Data were collected at 16 sites in the United States, Taiwan, Norway, Puerto Rico and Colombia via survey. HIV seropositive participants (n = 1,217, 31% female, 38% African-American/Black, 10% Asian/Pacific Islander and 26% White/Anglo) completed measures of illness representation based on the commonly accepted five-component structure: identity, time-line, consequences, cause, and cure/controllability (Weinman et al. 1996, Psychology and Health, 11, 431-445). Linear regression analyses were conducted to investigate relationships among illness representation, self-care behaviors and quality-of-life outcomes. Components of illness representation were associated with self-care and health outcomes, indicating that the cognitive representation of HIV has consequences for effective illness management. For example, perception that there is little that can be done to control HIV was significantly associated with fewer and less effective self-care activities (F = 12.86, P < .001) and poorer health function in the domain of quality-of-life (F = 13.89, P < .001). The concept of illness representation provides a useful framework for understanding HIV symptom management and may be useful in directing development of effective patient-centered interventions.

  6. HIV Risk Behavior among Delinquent and Mentally Ill Teens: Case Manager Perspectives

    ERIC Educational Resources Information Center

    Smith, Michael D.; Seal, David Wyatt; Hartley, Shannon

    2006-01-01

    An HIV knowledge survey and qualitative interview were administered to 20 case managers in community-based programs for troubled youth to assess HIV knowledge and their perception of client HIV risk behaviors. Participants had good HIV knowledge. Case managers perceived client youth to be at high risk for HIV infection due to unsafe sexual…

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

    PubMed

    Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo; Husted, Gitte R

    2017-01-01

    This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient-doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns.

  8. Deciding in the dark: advance directives and continuation of treatment in chronic critical illness.

    PubMed

    Camhi, Sharon L; Mercado, Alice F; Morrison, R Sean; Du, Qingling; Platt, David M; August, Gary I; Nelson, Judith E

    2009-03-01

    Chronic critical illness is a devastating syndrome for which treatment offers limited clinical benefit but imposes heavy burdens on patients, families, clinicians, and the health care system. We studied the availability of advance directives and appropriate surrogates to guide decisions about life-sustaining treatment for the chronically critically ill and the extent and timing of treatment limitation. Prospective cohort study. Respiratory Care Unit (RCU) in a large, tertiary, urban, university-affiliated, hospital. Two hundred three chronically critically ill adults transferred to RCU after tracheotomy for failure to wean from mechanical ventilation in the intensive care unit. None. We interviewed RCU caregivers and reviewed patient records to identify proxy appointments, living wills, or oral statements of treatment preferences, resuscitation directives, and withholding/withdrawal of mechanical ventilation, nutrition, hydration, renal replacement and vasopressors. Forty-three of 203 patients (21.2%) appointed a proxy and 33 (16.2%) expressed preferences in advance directives. Do not resuscitate directives were given for 71 patients (35.0%). Treatment was limited for 39 patients (19.2%). Variables significantly associated with treatment limitation were proxy appointment prior to study entry (time of tracheotomy/RCU transfer) (odds ratio = 6.7, 95% confidence interval [CI], 2.3-20.0, p = 0.0006) and palliative care consultation in the RCU (OR = 40.9, 95% CI, 13.1-127.4, p < 0.0001). Median (interquartile range) time to first treatment limitation was 39 (31.0-45.0) days after hospital admission and 13 (8.0-29.0) days after RCU admission. For patients dying after treatment limitation, median time from first limitation to death ranged from 3 days for mechanical ventilation and hydration to 7 days for renal replacement. Most chronically critically ill patients fail to designate a surrogate decision-maker or express preferences regarding life-sustaining treatments

  9. Partial Escape of HIV-1 from Cytotoxic T Lymphocytes during Chronic Infection

    PubMed Central

    Dagarag, Mirabelle; Khan, Basim; Ali, Ayub; Yang, Otto O.

    2012-01-01

    Viral mutational escape from CD8+ cytotoxic T lymphocytes (CTLs) is typically considered to be a dichotomous process and uncommon during chronic HIV-1 infection. Ex vivo passaging of HIV-1 from persons with chronic infection, however, revealed the evolution of many fixed substitutions within and around CTL-targeted regions, with an associated increase in replicative capacity. This indicates an evolution of mutations during chronic HIV-1 infection that trade replicative fitness for incomplete evasion of CTLs, or “partial escape.” PMID:22553321

  10. Preventing HIV among U.S. women of color with severe mental illness: perceptions of mental health care providers working in urban community clinics.

    PubMed

    Agénor, Madina; Collins, Pamela Y

    2013-01-01

    Given their knowledge of the behavioral issues related to psychiatric illness, mental health care providers are in a unique position to help prevent HIV among women with severe mental illness (SMI). We conducted in-depth interviews with providers at two New York City community clinics. We identified three major, interrelated themes pertaining to HIV prevention among women of color with SMI. Interventions that address the barriers that clinicians face in discussing sex, sexuality, and HIV with patients and train providers in the cultural considerations of cross-cultural mental health care are needed to help prevent HIV among women of color with SMI.

  11. What is a chronic disease? The effects of a re-definition in HIV and AIDS.

    PubMed

    Clarke, A

    1994-08-01

    HIV disease has recently come to be defined as a chronic disease from both policy and clinical points of view. This paper investigates the meaning and some possible implications of the redefinition. The first section examines the features identifiable from medical texts used to define a disorder as either acute or chronic and explores some of the implications of the definition on patterns of care. In particular, different types of doctor-patient relationship are examined. The second section looks at the categorisation of HIV disease using these textbook definitions, finding that HIV is most appropriately labelled as chronic. The next section uses the clinical definitions to look at two conditions for comparison with HIV; testicular cancer and multiple sclerosis. In the fourth section the policy re-definition of HIV is investigated and one of the potential effects of a policy redefinition is discussed--a change in the extent to which services are centralised. The paper concludes that the policy and clinical communities confuse the picture of HIV disease as a chronic condition. There are strong parallels between care for people with HIV disease and care delivered for an acute condition. It therefore seems likely that the policy redefinition of the disease as chronic may not be entirely adequate to use as a current model for investigating or planning patterns of care in HIV disease.

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

    PubMed

    Pinquart, M

    2013-03-01

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

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

    PubMed

    Thille, Patricia H; Russell, Grant M

    2010-10-01

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

  14. What motivates Australian health service users with chronic illness to engage in self‐management behaviour?

    PubMed Central

    Jowsey, Tanisha; Pearce‐Brown, Carmen; Douglas, Kirsty A.; Yen, Laurann

    2011-01-01

    Abstract Context  Health policy in Australia emphasizes the role of health service users (HSU) in managing their own care but does not include mechanisms to assist HSUs to do so. Objective  To describe motivation towards or away from self‐management in a diverse group of older Australians with diabetes, chronic heart failure (CHF) or chronic obstructive pulmonary disease (COPD) and suggest policy interventions to increase patient motivation to manage effectively. Design  Content and thematic analyses of in‐depth semi‐structured interviews. Participants were asked to describe their experience of having chronic illness, including experiences with health professionals and health services. Secondary analysis was undertaken to expose descriptions of self‐management behaviours and their corresponding motivational factors. Participants  Health service users with diabetes, COPD and/or CHF (N = 52). Results  Participant descriptions exposed internal and external sources of motivation. Internal motivation was most often framed positively in terms of the desire to optimize health, independence and wellness and negatively in terms of avoiding the loss of those attributes. External motivation commonly arose from interactions with family, carers and health professionals. Different motivators appeared to work simultaneously and interactively in individuals, and some motivators seemed to be both positive and negative drivers. Conclusion  Successful management of chronic illness requires recognition that the driving forces behind motivation are interconnected. In particular, the significance of family as an external source of motivation suggests a need for increased investment in the knowledge and skill building of family members who contribute to care. PMID:22070529

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

    PubMed Central

    Wongtongkam, Nualnong

    2016-01-01

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

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

    PubMed

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

    2016-01-01

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

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

    PubMed

    Nuño-Solinís, Roberto

    2014-01-01

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

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

    PubMed Central

    2010-01-01

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

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

    PubMed

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

    2014-10-01

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

  20. Demographic and clinical predictors of unplanned hospital utilisation among chronically ill patients: a prospective cohort study.

    PubMed

    Mallitt, Kylie-Ann; Kelly, Patrick; Plant, Natalie; Usherwood, Tim; Gillespie, James; Boyages, Steven; Jan, Stephen; Leeder, Stephen

    2015-04-03

    In urban Australia, patients with serious and continuing illnesses make frequent use of hospital emergency department (ED) services. However, the risk factors for hospital utilisation among the broad population of people with chronic illness are not well known. The aim of this study was to assess the predictors of hospital utilisation (either inpatient admissions or ED visits) in a cohort of 308 patients with chronic illness. We studied patients with serious and continuing chronic illnesses presenting to an ED in a large periurban hospital in western Sydney, Australia, between 2010 and 2013. ED presentations and hospital admissions were observed over two years. Multivariate negative-binomial regression analyses were used to identify risk factors for the number of presentations to hospital. The main risk factors for hospital utilisation were having a live-in carer, and a history of hospital utilisation. Having a live-in carer was associated with an increase in number of ED presentations by 88% (RR 1.88; 95% CI 1.41-2.51), and of admissions by 116% (RR 2.16; 95% CI 1.61-2.92). Seventy-seven percent of hospital utilisation in the cohort was attributable to carer status. Each additional ED presentation that a person had in the 12 months prior to the study led to an increased risk of an ED presentation in the follow-up period by 6% (RR = 1.06, 95% CI = 1.03-1.08). Between 20% and 25% of variability in hospital utilisation in the cohort was attributable to the number of hospital admissions or ED presentations in the previous 12 months. Patients with a live-in carer and with a history of hospital utilisation are at high risk for future hospital use.