Respite-A Coping Strategy for Family Caregivers
ABSTRACT The caregiver respite experience is seen as one way to moderate the negative consequences of caregiving. From an interpretivist research orientation, this study explored how 10 family caregivers of persons with dementia experienced respite. From a coping theoretical perspective, the caregiver respite experience is discussed as a process of "getting out" of the caregiver world, and is linked to avoidance strategies of emotion-focused coping. The following three phases within the coping dimension of the respite experience were found: caregivers recognizing their need to get out of the caregiver world, giving themselves permission to actually get out from it temporarily, and having the appropriate social support resources available to facilitate the getting out. The critical practice and research implications linked to caregivers' ability to acknowledge their need for respite are described.
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ABSTRACT: This paper is a report of a study to describe the meaning of quality of life for caregivers of patients with Alzheimer's disease and to identify factors that affect their quality of life. The burden for informal caregivers and change in their quality of life can lead to patients being placed in nursing homes. Factors found to worsen caregivers' quality of life include strained finances, poor family functioning, difficult patient behaviour, financial burdens and the amount of time caregivers spend caring for family members with Alzheimer's disease. A hermeneutic phenomenological design was used to study 32 informal caregivers of patients with Alzheimer's disease. Data were collected using interviews between November 2004 and June 2005. Caregivers associated good quality of life with serenity, tranquility, psychological well-being, freedom, general well-being, good health and good financial status. Factors that caregivers said improved their quality of life were good health of the patient, independence from the patient, and more help in caregiving. Factors that worsened their quality of life were worries about the future and progression of the patient's illness and stress. Our findings may help healthcare professionals have a deeper understanding of the meaning caregivers give to quality of life and thereby aid in the design of strategies to maintain or improve quality of life. Intervention research is needed for caregivers in countries where this has not yet been performed. Researchers should also investigate whether different types of caregivers (spouse, adult child and friend) have different needs or problems.Journal of Advanced Nursing 02/2008; 61(2):222-31. DOI:10.1111/j.1365-2648.2007.04494.x · 1.69 Impact Factor
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ABSTRACT: The aim of this study was to review research literature over the past 10 years on respite care for people affected by severe mental illness; and identify key implications for nursing practice in provision of respite care for family caregivers of people with severe mental illness. Family caregivers play an important role in health care, but need regular breaks to maintain their own health and well-being. Respite care is one of the few services available with a primary focus on supporting family caregivers. In most developed countries the notion of respite care as an extension of the health care service has been embraced, evidenced by a growing body of literature in health and health-related disciplines. An initial literature search was undertaken using the key words "respite", "short-term care", "shared care" and "day care" in major electronic databases for nursing, psychiatry, psychology and sociology literature between 1967 and 2002, identifying 704 articles. Closer examination of the literature from 1993 to 2002 on gaps and trends in respite care for people affected by severe mental illness was conducted. This is discussed in the context of the broader literature, particularly on dementia, where the mainstream research on respite care is found. The majority of family caregiving studies identified a need for greater quality, quantity, variety and flexibility in respite provision, and the literature has remained largely silent in relation to those affected by severe mental illness. There are contradictory findings on outcomes of respite care services and a lack of controlled empirical studies and evaluative research on effectiveness. Respite care is beneficial for caregivers, there is significant unmet need in provision of services for the mentally ill, and greater flexibility and the needs of caregivers should be recognised and addressed.Journal of Advanced Nursing 03/2005; 49(3):297-306. DOI:10.1111/j.1365-2648.2004.03287.x · 1.69 Impact Factor
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ABSTRACT: Decision aids are often used to assist individuals confronted with a diagnosis of a serious illness to make decisions about treatment options. However, they are rarely utilised to help those with chronic or age related conditions to make decisions about care services. Decision aids should also be useful for carers of people with decreased decisional capacity. These carers' choices must balance health outcomes for themselves and for salient others with relational and value-based concerns, while relying on information from health professionals. This paper reports on a study that both developed and pilot tested a decision aid aimed at assisting carers to make evaluative judgements of community services, particularly respite care. A mixed method sequential study, involving qualitative development and a pilot randomised controlled trial, was conducted in Tasmania, Australia. We undertook 13 semi-structured interviews and three focus groups to inform the development of the decision aid. For the randomised control trial we randomly assigned 31 carers of people with dementia to either receive the service decision aid at the start or end of the study. The primary outcome was measured by comparing the difference in carer burden between the two groups three months after the intervention group received the decision aid. Pilot data was collected from carers using interviewer-administered questionnaires at the commencement of the project, two weeks and 12 weeks later. The qualitative data strongly suggest that the intervention provides carers with needed decision support. Most carers felt that the decision aid was useful. The trial data demonstrated that, using the mean change between baseline and three month follow-up, the intervention group had less increase in burden, a decrease in decisional conflict and increased knowledge compared to control group participants. While these results must be interpreted with caution due to the small sample size, all intervention results trend in a direction that is beneficial for carers and their decisional ability. Mixed method data suggest the decision aid provides decisional support that carers do not otherwise receive. Decision aids may prove useful in a community health services context. ISRCTN: ISRCTN32163031.BMC Medical Informatics and Decision Making 03/2012; 12:21. DOI:10.1186/1472-6947-12-21 · 1.50 Impact Factor