Culturally adaptive healthcare for people with a learning disability from an ethnic minority background: a qualitative synthesis

Abstract

Background
People with a learning disability face health inequality. Those from ethnic minority backgrounds with a learning disability face ‘double discrimination’ as members of two marginalised groups.

Methods
This codesigned review consolidated the evidence on the healthcare experiences of individuals and their carers from ethnic minority backgrounds with a learning disability. Three electronic databases were searched for UK studies from January 1990 to June 2022. Qualitative data from 28 studies were analysed using thematic framework analysis.

Findings
There was an overarching theme of ‘culture, choice and conflicts of control’, which related to the variable preferences for involvement in healthcare decisions. Cultural and individual factors impacted upon experience, with themes relating to ‘misunderstanding and mistrust’, ‘discrimination and stigma’, ‘isolation’, ‘feelings of shame and blame’, ‘burdens of care’ and ‘carer wellbeing’. Factors associated with healthcare-seeking and care provision are described in the themes ‘triangles of care’, ‘community networks’ and ‘adaptive communication’.

Conclusions
People from ethnic minority backgrounds with learning disability experience complex barriers which influence their healthcare experiences. Recognising and understanding discrimination can be difficult for people with a learning disability. Carers face challenges which influence their own wellbeing. Services need to be responsive to individual cultural contexts, while addressing potential conflicts of control.

Accessible summary
People with a learning disability from ethnic minority backgrounds experience problems using healthcare services and poorer health.

This review compared findings from 28 UK studies which explored the healthcare experiences of people with a learning disability from ethnic minority backgrounds, and their carers.

Patients and carers had different preferences in how they wanted to be involved in their healthcare, which were often unmet by healthcare services.

Services should be responsive to the needs of individuals from different ethnic minority backgrounds with a learning disability, and their carers.