Examining the perspectives of family members involved in the delivery of palliative care at home

Abstract

This ethnographic study examined the social context of home-based palliative caregiving. Data were composed of observation field notes, interviews, and textual documents, and were analyzed using constant comparative methods. Findings show that home-based palliative caregiving resulted in life-enriching experiences for many caregivers. However, assumptions about dying at home and health care reforms resulted in some caregivers feeling "pressured" to provide home care, and consequently, left them feeling their obligations to care were exploited by the health care system. Shifts toward providing care closer to home not only changed caregivers, but also changed the home setting where palliative care was provided. Findings indicate a need for interventions designed to improve support for caregivers at home, and to explore how assumptions influence and sometimes drive the provision of home health care.