The mission of the Chronicity Areas of Excellence (AoE) is to advance and disseminate knowledge and to influence public policy related to living well with chronic health concerns.
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  1. Families and heart transplantation: Reversing the trajectory of end stage heart disease. [Download]

    Title: Families and heart transplantation: Reversing the trajectory of end stage heart disease.
    Creator: Young, L. E.
    Description: Family caregiving is central in the heart transplant (HT) process. METHOD: Using a constructivist grounded theory approach, study data were collected from 12 health professionals and 15 families in which one member was a HT recipient throughout three phases of the HT process. FINDINGS: Our interpretations suggest that family caregiving contributes to \"reversing the downward trajectory\" of end stage heart disease. This impacts the health of caregivers and disrupted family life. In some families, this caregiving work contributed to a smooth and uncomplicated recovery, while for others caregiving work was demanding and prolonged, or their loved one succumbed. Families reported that access to system-level supports for family caregiving varied. CONCLUSION: Family caregiving is an important factor in a successful recovery from HT. To ensure effective family caregiving, support should be available to family members in this role across all stages of the HT process.
    Subjects: heart transplantation, grounded theory, family, family caregiving
    Date Created: 2010
  2. Field testing the WHOQOL-100 in Canada. [Download]

    Title: Field testing the WHOQOL-100 in Canada.
    Creator: Molzahn, A. E.
    Description: The purpose of this project was to test the WHOQOL-100, an instrument for assessing quality of life (QOL), developed to facilitate cross-cultural comparison. The instrument was tested with a convenience sample of 144 people.The mean age of participants was 58 years and 41% were female.Test-retest reliability was .86 for the physical domain, .78 for the psychological domain, .91 for independence, .87 for social relationships, .77 for environment, and .60 for spirituality. Consistency reliability was .77 for physical, .79 for psychological, .89 for independence, .71 for social relationships, .80 for environment, and .89 for spirituality/ personal beliefs. Correlations of the various domains with other instruments, including the SF-36, the Self-Anchoring Striving Scale, and the Visual Analogue Scale for Pain, supported the convergent validity of the instrument.The instrument was able to discriminate between healthy and ill populations, providing support for construct validity.
    Subjects: measurement, quality of life
    Date Created: 2006
  3. Exercise programs for people with dementia [Download]

    Title: Exercise programs for people with dementia
    Creator: Forbes, D
    Description: Background In future, as the population ages, the number of people in our communities suffering with dementia will rise dramatically. This will not only affect the quality of life of people with dementia but also increase the burden on family caregivers, community care, and residential care services. Exercise is one lifestyle factor that has been identified as a potential means of reducing or delaying progression of the symptoms of dementia. Study characteristics This review evaluated the results of 17 trials (search dates August 2012 and October 2013), including 1,067 participants, that tested whether exercise programs could improve cognition (which includes such things as memory, reasoning ability and spatial awareness), activities of daily living, behaviour and psychological symptoms (such as depression, anxiety and agitation) in older people with dementia. We also looked for effects on mortality, quality of life, caregivers' experience and use of healthcare services, and for any adverse effects of exercise. Key findings There was some evidence that exercise programs can improve the ability of people with dementia to perform daily activities, but there was a lot of variation among trial results that we were not able to explain. The studies showed no evidence of benefit from exercise on cognition, psychological symptoms, and depression. There was little or no evidence regarding the other outcomes listed above. There was no evidence that exercise was harmful for the participants. We judged the overall quality of evidence behind most of the results to be very low. Conclusion Additional well-designed trials would allow us to enhance the quality of the review by investigating the best type of exercise program for people with different types and severity of dementia and by addressing all of the outcomes.
    Subjects: Dementia, Motor Activity, Depression, Exercise Therapy, Cognition
  4. Individual determinants of home-care nursing and housework assistance. [Download]

    Title: Individual determinants of home-care nursing and housework assistance.
    Creator: Forbes, D.A.
    Description: The purpose of this study was to examine individual determinants of use of publicly funded home-care nursing and housework assistance by Canadians 18 years and older from 1994 to 1999. Andersen and Newman's Behavioural Model of Health Services Use guided the selection of variables, analyses, and interpretation of the findings. Descriptive, correlation, and multiple logistic regression analyses were completed in each of the first 3 cross-sectional cycles of Statistics Canada's National Population Health Surveys. The determinants of use of housework assistance were older age, female, living alone, lower income, activity restriction, needing help with housework, not hospitalized in the previous year, and having at least 1 chronic condition. The determinants for home nursing tended to be the opposite of those for housework assistance. Between 1994 and 1999, use of housework assistance appeared to decrease and use of nursing services appeared to remain relatively stable. The findings underscore the need to target these 2 discrete subgroups of home-care users and ensure that funding is directed at support services as well as nursing services.
    Subjects: home care services, age factors, geriatric nursing
    Date Created: 2003
  5. Hope against hope: Exploring the hopes and challenges of rural female caregivers of persons with advanced cancer. [Download]

    Title: Hope against hope: Exploring the hopes and challenges of rural female caregivers of persons with advanced cancer.
    Creator: Williams, A.
    Description: Background This paper focuses on the qualitative component of a study evaluating a hope intervention, entitled Living with Hope Program (LWHP), designed to foster hope in female caregivers of family members living with advanced cancer. The purpose of this research is to share, in the form of a story, the experiences of rural female caregivers caring for family members with advanced cancer, focusing on what fosters their hope. Hope is a psychosocial and spiritual resource that has been found to help family caregivers live through difficult transitions and challenges. Methods Twenty-three participants from rural Western Canada completed daily journal entries documenting their hopes and challenges. Cortazzi’s (2001) method of narrative analysis was used to analyze the data, which was then transcribed into a narrative entitled ‘hope against hope.’ Results The journal entries highlighted: the caregivers’ hopes and what fostered their hope; the various challenges of caregiving; self-care strategies, and; their emotional journey. Hope was integrated throughout their entire experience, and ‘hope against hope’ describes how hope persists even when there is no hope for a cure. Conclusions This research contributes to the assessment of caregiver interventions that impact hope and quality of life, while illustrating the value of a narrative approach to both research and practice. Journaling may be particularly valuable for rural caregivers who are isolated, and may lack direct professional and peer support. There is an opportunity for health professionals and other providers to foster a relationship of trust with family caregivers, in which their story can be told openly and where practitioners pay closer attention to the psychosocial needs of caregivers.
    Subjects: hope, palliative and end of life care, caregiving, rural nursing, narrative research
    Date Created: 2013
  6. Engaging Hope [Download]

    Title: Engaging Hope
    Creator: Duggleby, W.
    Description: This video reflects the hope experience of male spouses of women with breast cancer. It was funded by Canadian Breast Cancer Foundation - Prairies/NWT.
    Subjects: Hope