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Holding on to Normalcy and Overshadowed Needs: Family Caregiving at End of Life

Background. Caregivers in end-of-life care are at risk for health deterioration and decreased quality of life because of the many stressing factors involved in the caregiving role. Purpose. The purpose of this analysis is to come to understand the nature of occupation as experienced by family caregivers of dying patients at a residential hospice. Methods. Data from hospice residents, their family members, and the hospice staff was collected over a period of six months via participant observation, interviews, and document review. Findings. The themes “holding on to normalcy” and “overshadowed needs of caregivers” describe the complex and uncertain nature of family caregivers' occupation. Implications. Occupations of family caregivers reflected experiences of doing, being, belonging, and becoming. By looking through the lens of the caregiver, the findings of this study will help occupational therapists address the unique needs of the caregiver in end-of-life care.