Retaining Family Identity: Lived Experience of Caregiving in the Black Community

Abstract

Aimed at exploring the lived experiences of family caregivers of care recipients in the Black community, this study uses Heideggerian phenomenology to elucidate the meaning of caregiving as defined from the lived experiences of the caregivers themselves. Using a nonprobability purposive design, 12 caregivers from the Black community were interviewed to examine their cultural and lived experiences of caring for family members with Alzheimer’s Disease or Related Dementia (ADRD). Six main themes related to the caregiving role and experience were identified. These themes coalesced to generate a major theme of Maintaining a Family Identity. While the experience of caregiving was expressed as emotionally difficult, family caregiver’s cultural backgrounds emphasized a responsibility to provide care. This led to an ambivalent perception of formal support. Utilization of formal support to address caregiving difficulties was considered acceptable when it was in line with caregivers’ need to retain a sense of familial responsibility and consistency of identity. Gaining further insight into cultural factors associated with the caregiving experience included the need for increased sensitivity in providing services that addressed the psychoemotional stress that can arise from Black caregivers’ dilemma in attempting to maintain familial identity. Attention to the familial relationship within the Black community will assist policymakers, researchers, and practitioners to develop services that caregivers in the Black community consider acceptable, accessible, and effective in enhancing their caregiving experiences.