The healthcare experiences of LGBTQ people with intellectual and developmental disabilities in the United States: A scoping review

Abstract

Lesbian, gay, bisexual, transgender, and queer (LGBTQ) people and people with intellectual and developmental disabilities (IDD) each face multiple systems of oppression (e.g., cissexism, ableism) that produce interpersonal, institutional, and environmental barriers to accessing healthcare services. For people with intersecting LGBTQ and IDD identities, these barriers coalesce to further restrict access to healthcare, worsening quality of health and health disparities. This scoping review explores the experiences of LGBTQ people with IDD and the barriers and facilitators they encounter when accessing care within the U.S. healthcare system. Identification of barriers and facilitators can inform multi-level intervention targets including provider knowledge, skills, and attitudes and advocacy strategies for environmental and systems-level change. A registered protocol guided the search for peer-reviewed and grey literature sources published before November 24, 2024. Sources included LGBTQ people with IDD and reported on experiences accessing and navigating healthcare services. Twenty-one articles were included in the review. The Behavioral-Ecological Framework of Healthcare Access and Navigation informed mapping of findings. Articles primarily described personal and provider factors (n = 17) that impact access to care and the healthcare environment (n = 14), while fewer described social environments (n = 7). Little attention has been paid to the built environment. Barriers included patient-provider communication challenges, difficulty finding competent providers, and the complexity of navigating healthcare systems. Facilitators included supportive social networks, affirming and accommodating providers, and healthcare policies that reduce healthcare costs and offer legal protection.