Relational experiences of family caregivers providing home-based end-of-life care

J Fam Nurs. 2012 Nov;18(4):491-516. doi: 10.1177/1074840712462134. Epub 2012 Sep 27.

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged
  • Anthropology, Cultural
  • Caregivers*
  • Family Nursing
  • Female
  • Humans
  • Interpersonal Relations
  • Male
  • Middle Aged
  • Neoplasms / therapy
  • Terminal Care*