Barriers to Healthcare for People With a Learning Disability From Ethnic Minorities: Perspectives of Self-Advocates and Carers

Abstract

Background

People with a learning disability from ethnic minorities experience barriers in their access to healthcare services and poorer health outcomes. This study aimed to explore the factors that contribute to these barriers and to better understand how they can be reduced.

Methods

Twenty ‘experts by experience’ took part in experience-based co-design workshops to ascertain how lived experiences related to findings from a co-designed scoping review. Audio recordings were transcribed and analysed using framework analysis.

Findings

Self-advocates and carers experienced discrimination within a range of healthcare settings; however, recognising and understanding the source was difficult. Many people reported a lack of reasonable adjustments or support services that considered their ethnic identities. Participants also experienced isolation and stigma within their own family and community networks. Access to healthcare was adversely affected by COVID-19. Many people were unaware of the Learning Disability Register and there was insufficient support when transitioning between healthcare services.

Conclusions

Services can be improved by effective communication, continuity of care and an enhanced understanding of the experiences of learning disability across different ethnic groups. Understanding an individual's needs and preferences from the first point of contact is important for the allocation of resources.