• Kelli I Stajduhar, Dawn D Nickel, Wanda L Martin, and Laura Funk.
• Centre on Aging, University of Victoria, BC, Canada. kis@uvic.ca
• Soc Sci Med. 2008 Dec 1; 67 (11): 1789-97.

AbstractSince the inception of the modern hospice movement, the patient and family caregiver (FCG) have been considered the unit of care; family members are identified as 'clients' within palliative care philosophy. Little research has focused on how FCGs define their roles within the hospice palliative care (HPC) system. The aim of this study was to describe how FCGs of dying cancer patients view their roles in relation to the HPC system. Secondary analysis of interviews with 36 bereaved FCGs in Western Canada, guided by interpretive descriptive methods, found that FCGs perceived themselves as having two roles: client and co-worker. FCGs situated themselves as clients, where they actively sought help from the health care system. FCGs at times also perceived they had been situated as clients by health care providers, and were more resistant to accepting help. In other comments FCGs situated themselves as co-workers, seeking out an active role within the HPC team, whereas in other instances, felt they were situated as co-workers by a health care system with limited financial and human resources. Findings suggest that greater emphasis be placed on helping family members identify suitable interventions depending on how they view their roles within the HPC system. How we define family members in relation to the HPC system may also require reconsideration to reflect a more current conceptualization of realities in end-of-life care.

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