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Part 2: Home based family caregiving at the end of life: a comprehensive review of published qualitative research (1998 - 2008)
Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ
Palliative Medicine. 2010;26(6):594-607.
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Abstract
Family caregivers are crucial for supporting home death. We reviewed published qualitative research on home-based family caregiving at end of life (1998–2008), synthesizing key findings and identifying gaps where additional research is needed. Multiple databases were searched and abstracts reviewed for a focus on family caregiving and palliative care; full articles were reviewed to extract data for this review. In total, 105 articles were included. Findings are presented in the following areas: the caregiving experience and contextual features; supporting family caregivers at end of life; caregiving roles and decision-making; and rewards, meaning and coping. We noted a lack of definitional clarity; a reliance on interview methods and descriptive, thematic analyses, and a relative lack of diversity of patient conditions. Research needs are identified in several areas, including the bereavement experience, caregiver ambivalence, access to services, caregiver meaning-making, and relational and contextual influences on family caregiving at end of life