Grant: CIHR Fellowship

The shift in health care towards health promoting approaches to delivery has implications for ideas about appropriate family roles and responsibilities, including when an individual is terminally ill. Family members tend to be viewed as "care partners" who will be empowered through training and education designed to involve them in the care of the dying person at home. The general tendency is to assume that health promotion and responsibility are beneficial for and welcomed by everyone, yet some research suggests that not all individuals desire greater responsibility. This needs to be confirmed with research specifically including family members of dying (palliative) individuals; such research needs to include knowledge of how health promotion is put into practice by home care nurses (HCNs) working with these families. This research will examine "family responsibility" in home-based palliative care. Specifically: a) how is "family responsibility" understood in policy and practice documents? b) how is 'family responsibility' understood and practiced by HCNs? c) how is "family responsibility" understood by those caring for a dying family member (FCGs)? This 3 year project will involve in-depth interviews with 25 home care nurse - palliative family caregiver pairs. FCG interviews will explore their understandings and experiences of 'family responsibility' and related health promotion concepts. HCNs will be interviewed about their understandings of family responsibility, and how they put health promotion into practice. Policy and practice documents used in home health/palliative care will also be examined to gain broader knowledge of the context of HCN practice. This research can help improve HCN practice, enhancing its effectiveness and ensuring that it provides appropriate kinds of support tailored to individual FCG needs; this can improve the experiences of and outcomes for FCGs in palliative situations.