A co-produced systematic review about barriers to healthcare in people with a learning disability from ethnic minority populations

Problem

It is well documented that people with a learning disability face inequalities in their access to care, experience of care and health outcomes. Those from an ethnic minority background with a learning disability face a ‘double discrimination’, experiencing barriers to healthcare from two sources as members of two marginalised groups. Robertson et al. (2019) conducted a systematic review looking at research about health inequalities for people with a learning disability from ethnic minority backgrounds and found limited evidence relating to health outcomes. We aimed to expand upon Robertson et al. (2019)’s review by incorporating the perspectives of a working group of people with lived experiences to our analysis. This is part of a wider project about healthcare for people from an ethnic minority background with a learning disability.

Approach

We used an experience-based co-design (EBCD) approach with people with lived experience guiding the review process. We focused the review on research relating to access, experience and outcomes: research that explores issues around accessing appropriate services, research that describes experiences of healthcare services and research that documents health (mental and physical) outcomes in people with a learning disability from ethnic minority backgrounds. Using this framework, we used an EBCD approach to focus our analysis on issues that were pertinent to members of the working group. Three electronic databases were searched for original UK-based studies published in English from 1st January 1990 (Prospero registration ID: CRD42022347318). We used NVivo to thematically analyse the papers meeting our inclusion criteria which were found through database and manual searches.

Findings

We screened 5,770 records by title and abstract. 531 full text articles were reviewed, of which 84 were deemed eligible to be included in the review. 10 papers were added through a manual search. We found 16 papers which gave evidence on health outcomes (12/16 of mental health outcomes). For the thematic analysis, we explored themes co-produced with the working group: these were discrimination, community and family networks, COVID-19, digital access, transitional care and the learning disability register. We found limited evidence of the themes generated by the working group, suggesting these are under researched topics despite being important to people with a learning disability from ethnic minority backgrounds. We identified groups which were underrepresented in the literature (e.g., Jewish, Traveller communities). We found issues throughout the literature in how ethnicity is conceptualised – many studies used broad groupings such as ‘Asian’ without further specification, discounting heterogeneity within this. Many studies failed to conduct ethnicity specific analyses.

Consequences

Our findings suggest that the research on barriers to healthcare for people with a learning disability from ethnic minority backgrounds is limited in several ways. The topics explored in the literature do not reflect issues that are pertinent to people with a learning disability from ethnic minority backgrounds.