4.4 Article

Relational Experiences of Family Caregivers Providing Home-Based End-of-Life Care

Journal

JOURNAL OF FAMILY NURSING
Volume 18, Issue 4, Pages 491-516

Publisher

SAGE PUBLICATIONS INC
DOI: 10.1177/1074840712462134

Keywords

cancer; end-of-life care; palliative; family caregiving; home; families experiencing life-shortening illness

Funding

  1. Canadian Institutes of Health Research (CIHR) [PEP67460]

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The multiple relationships involved in home-based end-of-life care have received little systematic analysis. As part of a focused ethnographic study examining client-caregiver-provider relational care experiences within the sociocultural context of home-based end-of-life care, this article describes the provision of end-of-life care to older adults with advanced cancer from the perspective of family caregivers. Data were collected through in-depth interviews (n = 16) with 4 family caregivers and participant observations in each of the 4 households over a 6- to 8-month period. Family caregiving in home-based end-of-life care was portrayed in this study as 3 dialectical relational care experiences: (1) prioritizing care recipient needs-ignoring own needs, (2) feeling connected-feeling isolated, and (3) juggling to manage-struggling to survive. Study findings suggest that the sociocultural context of end-of-life care is not conducive to quality care and provide several insights for future directions in nursing practice, policy, and research.

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