Barriers to healthcare for people with a learning disability from ethnic minority backgrounds: perspectives of self-advocates and carers.

Problem

Existing literature has reported that people with a learning disability from ethnic minority backgrounds experience inequalities in relation to health outcomes and healthcare. A mixed-methodology project was conducted which aimed to identify the barriers to healthcare that are experienced by this population. One component of this project involved conducting experience-based co-design (EBCD) workshops to explore the factors which contribute to these disparities in healthcare and to better understand how such inequalities can be reduced.

Approach

The findings of a systematic review were taken to a group of 'experts by experience'. These were presented to participants to ascertain how lived experiences relate to academic findings and to consider ways in which care could be improved. Twenty participants (13 self-advocates, 5 family carers and 2 support workers) contributed to three workshops. People who could not attend the workshops provided their thoughts about the themes with the research team. The workshops were audio recorded, transcribed and thematically analysed.

Findings

Sub-themes were generated from 8 core themes. These cores themes included discrimination, COVID-19, community and family networks and transitional care. Our findings suggest that people from ethnic minority backgrounds with a learning disability experience disparities in healthcare. Reported barriers to responsive and inclusive care included: a lack of effective communication resulting from a failure by clinicians to modify their communication style, a lack of easy read information and a lack of information during periods of transition. In culmination, these experiences led to some carers fearing for the future for their loved ones. Some participants experienced discrimination, however due to the intersectional nature of discrimination, recognising and understanding the source was difficult. People reported instances of reasonable adjustments not being adhered to. Some participants provided personal experiences of services where they acknowledged that they may have been treated differently due to their ethnic background. Examples discrimination included being spoken to in a distasteful or derogatory way, being denied access to treatment that was deemed to be beneficial or being prompted to pay for services which were expected to be free. People also reported a lack of culturally appropriate support services and self-advocacy groups.

Consequences

The intersection of disability and ethnicity results in compounded discrimination. Such discrimination exacerbates inequalities in access and experiences of healthcare for people with a learning disability from ethnic minority backgrounds. However, recognising and understanding the source of discrimination can be difficult for people. These disparities can be reduced by clinicians having effective communication and an enhanced understanding of learning disability. Understanding an individual’s needs from the first point of contact is important for the allocation of resources.