Experiences of Social Care Among People With Intellectual Disabilities From Minority Ethnic Communities in the UK: A Rapid Review.
Naomi L Jacobs, Francesca Ribenfors, Christopher Hatton and 2 others
PMID 42463436WHAT IT FOUND
Adults with intellectual disabilities from minority ethnic communities face the same service barriers as everyone else, compounded by racism, language barriers and services that ignore religious and cultural needs.
Families often get less extended family support than staff assume. Only 19 small studies exist.
Key findings
01People with intellectual disabilities and their families from minority ethnic communities face similar barriers to accessing social care as people from majority communities, but these are compounded by additional disadvantages linked to ethnicity, disability and, in some studies, gender.
02Services often did not meet people's cultural and religious needs. Participants described being denied culturally appropriate food, a lack of support for religious practices and personal care routines, little interest from staff in their cultural backgrounds and few diverse materials, and said this affected their wellbeing and could mean losing cultural identity and community connections.
03The assumption that minority ethnic families look after their own was not borne out. Several studies found extended family support was limited or absent, and that shared family care could be a response to inadequate services rather than a cultural choice.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
There was no risk of bias assessment of any included study, so the review could not weigh the studies by quality. The evidence base is thin: 19 studies, mostly small qualitative work, seven with 15 or fewer participants. The authors describe the field as underdeveloped. Almost no research examined how well services actually deliver culturally competent care, so most recommendations come from what people said was missing rather than from tested changes to practice. Coverage is uneven. Nine studies focused on South Asian communities, and no studies looked at Jewish or Gypsy, Roma or Traveller communities, so the findings cannot be assumed to apply across all minority ethnic groups. The perspectives of people with profound and multiple intellectual disabilities are nearly absent, and eight studies collected no data from people with intellectual disabilities at all, relying instead on family carers or professionals. Many studies recruited through statutory services, so people who have disengaged from services, often those with the poorest experiences, are likely underrepresented. The review is UK-only and limited to publications from 2009 onwards, so it may not transfer to other health and social care systems.
Declared interests
Funded by the National Institute for Health and Care Research Research for Social Care programme (grant NIHR206547). The authors declare no conflicts of interest and state that the views expressed are their own, not those of the NIHR or the Department of Health and Social Care. No commercial involvement is reported.
The easy way to misread this
Do not read this as evidence that cultural competence training, or any other change to a service, works. No study in this review tested an intervention, and the review found almost no research on how well services actually deliver culturally competent care. The recommendations come from what service users and families said was missing, drawn from 19 mostly small qualitative studies.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →