Grant: Operating Grant

"Family empowerment" is the process of involving family members in the care of the patient, for instance in personal care tasks and decision-making, thereby enhancing their sense of control. The particular ways this happens in practice, however, is unclear. In this 2 year study, we are examining how home care nurses practice family empowerment in their interactions with dying (palliative) patients and families, and comparing this to how they practice it with patients and families that are not palliative. We will also observe family members' experiences of their interactions with home care nurses, as well as how patients' expectations (e.g., a desire to stay at home) impact these experiences. Some research to date indicates that not all individuals are comfortable with empowerment approaches, although this remains to be confirmed in palliative situations. For instance, the stress of coping with a family member's terminal illness may increase a desire to place trust in health care professionals; in addition, home care nurses may be less likely to download responsibilities to palliative families (who may be seen as more vulnerable). To answer our questions, we will analyze data from observations of the delivery of home-based care nursing services (150 hours in total), supplemented by interviews with 15 observed home care practitioners, 15 family members and 10 patients. This research can help improve home care nursing practice with patients and families, enhancing its effectiveness and ensuring that it provides appropriate kinds of support tailored to individual needs. To promote this goal, we will also include debriefing discussion groups with home care nurses and decision-makers/nursing leaders.