Abstract

Background: Little is known about how COVID-19 has influenced the role of family caregivers in advance care planning (ACP).Objectives: To explore the experiences of family caregivers and ACP in the United States during the COVID-19 pandemic.Design: Exploratory sequential mixed-methods design of caregiver characteristics and pandemic response to ACP.Settings/Subjects: Family caregivers of care recipients with varied caregiving needs (dementia, mental illness, etc.).Measurements: Quantitative survey was done of fixed-choice questions of 82 caregivers. Semistructured qualitative telephone interviews were performed of a subsample of participants (n = 28).Results: Some (19%) of family caregivers revisited or updated advance directives of care recipients and/or had some type of contingency plan (33%) if they were to become ill. We identified three barriers caregivers faced during the pandemic that may have limited their engagement with ACP.Conclusions: Family caregivers need education regarding ACP and specific resources that can guide and support them through the process of ACP, for both themselves and care recipients.

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