Queer caregiving with older adults: A scoping review of the lived experiences of LGBTQ+ family and friend caregivers

Abstract

A growing LGBTQ+ population is accompanied by an increasing number of LGBTQ+ caregivers of older adults. However, the experiences and perspectives of LGBTQ+ caregivers remain poorly understood within health and social systems. Caregiving research has traditionally focused on heterosexual caregivers, often overlooking the distinct experiences of LGBTQ+ caregivers. This scoping review compiles literature that highlights the unique challenges, needs, and support systems required by LGBTQ+ caregivers. We used Arksey & O'Malley's five-step iterative scoping review methodology and identified relevant studies through a search of three electronic databases conducted on May 11, 2023. A total of 57 items were included in this review: 13 quantitative studies, 22 qualitative studies, 6 mixed methods studies, 2 scoping reviews, 1 literature review, and 13 grey literature records. Through a thematic synthesis, we identified five major themes: LGBTQ+ caregivers are highly active in providing informal care; queer caregiving has unique complexities; LGBTQ+ caregivers want to feel recognized and understood; LGBTQ+ caregivers are at high risk of becoming overwhelmed; and challenges navigating heteronormative health systems. This scoping review highlights the distinct experiences of LGBTQ+ family and friend caregivers and their specific support needs within their caregiving role. Findings from this review highlight the importance of healthcare professionals receiving comprehensive LGBTQ+ focused education to better understand and support LGBTQ+ caregivers. We emphasize the need of LGBTQ+ caregivers to feel recognized and understood within health systems, highlighting that this population of caregivers is at higher risk of becoming overwhelmed. Further research is needed to address the gaps in knowledge, provide effective interventions, and draft policies to support LGBTQ+ caregivers.