Abstract
Family care partners (FCP) of persons living with dementia provide extensive care and experience significant stress. Hospice nurses and social workers seldom receive training to help FCP. This article describes the development and pilot testing of Enhancing Dementia Instruction and Tool in Home Hospice Care (EDITH-HC). This intervention provides 1) instructional videos for clinicians about dementia-specific end-of-life care and 2) a worksheet for clinicians and FCP to complete together to identify and address FCP stressors and concerns. EDITH-HC development involved co-developing and revising draft intervention materials based on two rounds of structured input from FCP (n = 10), hospice nurses and social workers (n = 5), and research/content experts (n = 4); and a single-arm pilot test of the intervention to assess initial feasibility and acceptability (n = 13). Initial pilot testing indicates the intervention is feasible and acceptable. A larger randomized pilot study to determine feasibility and acceptability is underway.
Published Version
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