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UBC Theses and Dissertations

When a desired home death does not occur : family caregiver experiences Topf, Lorrianne


Despite a preference among Canadians to die at home, the majority of expected deaths in British Columbia occur away from home. This qualitative research based on interpretive description (Thorne, 2008) examined the experiences of bereaved family caregivers (FCGs) when a desired home death did not occur and happened in either the hospital or in a hospice. The purpose of the study was to enhance the understanding of FCGs experiences in managing end-of-life care at home to guide the development of more effective approaches to hospice palliative care. Eighteen bereaved family members of persons who died of cancer were recruited. Data collection involved semi-structured, audio-recorded interviews that were transcribed. Analysis occurred concurrently with data collection. Field notes and reflective journaling guided and documented the interpretive process and aided in the analytical process. Unwavering commitment to the promise FCGs made to care for their family member at home until death underpinned FCG experiences. These promises, however, were challenged by a lack of preparedness for caregiving, difficulty with accessing professional support and information, and frustration with the inadequate help they received. The physical, emotional and relational toll FCGs experienced and the impact of unexpected events prevented desired home deaths, and resulted in significant distress and guilt. FCGs were still struggling to live with their deep regret several months to 17 years after their promises were broken. Although the death of their family member was described as peaceful; the death could not be described as a good death. The study findings provide direction for the provision of care as hospice palliative care is increasingly shifted into homes and caregiving responsibilities handed over to family members. Adequate resources and supports must be in place and accessible at the time they are needed by FCGs to enhance quality of life for dying family members and ameliorate negative effects on FCG health.

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