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The Gerontologist Advance Access published online on August 3, 2009
The Gerontologist, doi:10.1093/geront/gnp116
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© The Author 2009. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oxfordjournals.org.

End-of-Life Caregiver's Perspectives on their Role: Generative Caregiving

Linda R. Phillips, PhD, RN, FAAN1,2 and Pamela G. Reed, PhD, RN, FAAN3

2 School of Nursing, University of California-Los Angeles
3 College of Nursing, University of Arizona, Tucson

1 Address correspondence to Linda R. Phillips, PhD, RN, FAAN, 700 Tiverton Avenue, Factor Building #5-133A, Los Angeles, CA 90095. E-mail: lrphillips{at}sonnet.ucla.edu


  Abstract

Purpose: To describe caregivers’ constructions of their caregiving role in providing care to elders they knew were dying from life-limiting illnesses. Design and Methods: Study involved in-depth interviews with 27 family caregivers. Data were analyzed using constant comparative analysis. Results: Four categories were identified: centering life on the elder, maintaining a sense of normalcy, minimizing suffering, and gift giving. Generative caregiving was the term adopted to describe the end-of-life (EOL) caregiving role. Generative caregiving is situated in the present with a goal to enhance the elder’s present quality of life, but also draws from the past and projects into the future with a goal to create a legacy that honors the elder and the elder–caregiver relationship. Implications: Results contribute to our knowledge about EOL caregiving by providing an explanatory framework and setting the caregiving experience in the context of life-span development.

Keywords: Informal caregiving, Death and dying, End-of-life care

Received April 10, 2009; Accepted July 6, 2009

Decision Editor: Nancy Schoenberg, PhD


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