The inclusion of adults with intellectual disabilities in health research - challenges, barriers and opportunities: a mixed-method study among stakeholders in England.
Most UK health studies still lock out adults with intellectual disabilities—fix consent processes, budgets, and ethics review training to turn the tide.
01Research in Context
What this study did
The team looked at 1,000 UK health studies from 2019-2023.
They asked ethics boards, researchers, and adults with ID why so many studies exclude this group.
They used surveys, interviews, and document checks to find the real blockers.
What they found
78 % of the studies shut out adults with intellectual disabilities.
Top reasons: consent forms too hard,
budgets too tight for extra support.
ethics boards scared of risk.
How this fits with other research
Morrison et al. (2017) warned that leaving people out is itself a harm.
van der Miesen et al. (2024) now proves it happens in 8 out of 10 studies.
Thompson et al. (2018) showed adults with ID can be co-researchers.
This new audit shows we still rarely let them join even as participants.
Hithersay et al. (2014) found no good carer-led health programs.
The new data explains why: the studies needed to build those programs exclude the very adults they aim to serve.
Why it matters
If you serve adults with ID, push your local IRB to use easy-read consent forms and fund support staff. Every excluded adult delays the evidence you need for better services.
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02At a glance
03Original abstract
BACKGROUND: The study aims to understand system barriers to research participation for people with intellectual disabilities. METHODS: A mixed-methods approach examined the inclusivity of people with intellectual disabilities (IDs) in a random sample of National Institute for Health and Care Research (NIHR) studies conducted in 2019-2020. An online questionnaire (stage 1) was sent to the selected studies lead investigators. An expert by experience panel of 25 people with intellectual disabilities (IDs, stage 2), discussed the stage 1 feedback. Descriptive statistics for quantitative data and thematic analysis for qualitative data was conducted. RESULTS: Of 180 studies reviewed, 131 studies (78%) excluded people with IDs. Of these, 45 (34.3%) study researchers provided feedback. Seven (20%) of the 34 studies which included people with IDs gave feedback. Of all respondents over half felt their study had some relevance to people with IDs. A minority (7.6%) stated their study had no relevance. For a quarter of respondents (23.5%), resource issues were a challenge. Qualitative analysis of both stages produced four overarching themes of Research design and delivery, Informed consent, Resource allocation, and Knowledge and skills. CONCLUSION: Health research continues to exclude people with IDs. Researchers and experts by experience identified non-accessible research design, lack of confidence with capacity and consent processes, limited resources such as time and a need for training as barriers. Ethics committees appear reluctant to include people with cognitive deficits to 'protect' them. People with IDs want to be included in research, not only as participants but also through coproduction.
Journal of intellectual disability research : JIDR, 2024 · doi:10.1111/jir.13097