• Mélanie Vachon.
• Psychology Department, Université du Québec à Montréal, Montréal, Québec, Canada.
• J Palliat Med. 2020 Dec 1; 23 (12): 1613-1618.

Abstract Background: An essential component of palliative care (PC) is providing psychological and existential support to the family caregivers. However, there is scant research on the existential journeys of family caregivers throughout the disease trajectory and beyond. Objective: This study aimed to obtain a deep understanding of the existential journeys of family caregivers from prognosis notification until after the death. Setting/Participants: A purposive sample of 22 caregivers of terminally ill family members who had died was recruited at a PC bereavement program in Canada and participated to qualitative phenomenological interviews. Data Collection: Interpretative phenomenological analysis was used to analyze the data derived from in-depth interviews. Results: The participants' existential journeys can be described by three dynamic dimensions: (1) from avoidance to integration of death, (2) from meaninglessness to meaningfulness, and (3) from transformation to transmission. The findings highlight the importance to family caregivers of having opportunities to share their experiences as a way to progress on the existential journey. Conclusions: PC should extend beyond the death of the loved one and expand to include existential aspects of the caregiving experience.

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