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

Abstract

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.