Informal Caregivers of Cancer Patients: Perceptions About Preparedness and Support During Hospice Care

Abstract

This study examined the perceptions of preparedness and support of informal caregivers of hospice oncology patients. Respondents included coresiding, proximate, and long-distance caregivers. Thematic analysis was used to analyze the qualitative data from 2 caregiver surveys, one administered prior to the care recipient's death and another completed 3 months postdeath. Respondents (N = 69) interpreted preparedness broadly and identified multiple sources of support including hospice personnel, family, friends, neighbors, and spiritual beliefs. Additionally, informational support, such as education, information, and enhanced communication were considered essential for preparing and supporting caregivers. Implications for social work research and practice are provided.

Keywords:

• death
• dying
• bereavement
• family caregiving
• perceptions

Acknowledgments

This research was guided by the practice experience of both authors, who, in addition to conducting research on end-of-life care, have worked as hospice social workers in Florida. This experience exposed them to many family caregivers providing care in the home, and from a distance. This study was supported by a doctoral fellowship through the John A. Hartford Foundation. Dr. Cagle's efforts were also supported, in part, by a T-32 training grant from the National Institute on Aging (NIA; grant number 2T32AG000272-06A2) and a McGrath-Morris fellowship and residency. The authors would like to thank Maggie Clifford, MSW, and the reviewers for their help with preparing this article.