Hospice Care: Art and Science Evaluating Primary Caregiver Perceptions

ABSTRACT

This study retrospectively explored perceptions of hospice care by 47 family primary caregivers (PCGs) before, during, and after terminal care in four community based hospice programs. Results suggest that PCGs were more satisfied with hospice services when they were better informed by hospice staff, in areas where they had relatively high expectations for service and perceived needs. These areas were medical and emotional services as opposed to spiritual and social-environmental services. Also, PCGs appeared to prefer that hospice staff provide information which increased options for receiving medical and emotional support directly rather than being instructed about how to attain such support through more self-reliant means. Study findings generally confirm that PCGs are both givers and takers of care, but that they do not use the full range of hospice services. Implications and recommendations for advocates of community based hospices are discussed.

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Notes on contributors

Larry W. Foster

Larry W. Foster, PhD, is a post-graduate student in children and families clinical services in health care at the Massachusetts General Hospital Institute of Health Professions in Boston. He also serves on the Professional Liaison Committee, National Hospice Organization. A report of this research was made at the Annual Meeting of the National Hospice Organization, November 1985. The author wishes to acknowledge participating Michigan hospice programs in the study: Good Samaritan Hospice Care, Battle Creek; Hospice of Muskegon County; Hospice of Greater Grand Rapids; and Hospice of Holland. Special thanks are given to David Dush, Penelope Marshall, Sharon Olson, and Gail Sevin for their editorial comments.