Supporting Diverse Family Caregivers: Key Stakeholder Perspectives.

Abstract

This study aimed to understand the perspectives of key stakeholders regarding strategies for better supporting culturally and ethnically diverse family caregivers, aiming to incorporate them into the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Advisory Council's proposed National Strategy. The Strategy, published in 2022, identified priority actions to support the growing population of people providing unpaid care to people of all ages with disabilities, with a goal of improving the health and well-being of both the family caregiver and the person receiving support. Researchers conducted extensive outreach to purposively diverse stakeholder organizations, using six stakeholder strategy sessions with representatives from 42 groups in December 2020 to identify preliminary themes. During July-October 2021, 17 key informant interviews and 16 stakeholder listening sessions were held, involving 103 different organizations. Qualitative data analysis using an inductive approach was used to identify key themes. A significant issue for diverse caregivers is widespread lack of self-identification as caregivers, which is tied to a lack of awareness of potentially helpful services and supports; culturally appropriate outreach is critical to ensure access to services, as well as access to centralized resources and funding for community- and faith-based organizations. A community health worker model was recommended. Tailored activities, involving trusted community- and faith-based groups, as well as investments in caregiver- and culturally-specific supports, are critical for reaching the diverse family caregivers who most need supports. Raising awareness of caregiving among and taking advantage of the expertise of professionals working with diverse communities is also crucial.