The inclusion of adults with intellectual disabilities in health research - challenges, barriers & opportunities: a mixed-method study among stakeholders in England

Background

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 in a random sample of National Institute for Health and Care Research (NIHR) studies conducted in 2019-2020. An online questionnaire (stage one) was sent to the selected studies lead investigators. An expert by experience panel of 25 people with intellectual disabilities (stage 2), discussed the stage one 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 intellectual disabilities. Of these, 45 (34.3%) study researchers provided feedback. Seven (20%) of the 34 studies which included people with intellectual disabilities gave feedback. Of all respondents over half felt their study had some relevance to people with intellectual disabilities. 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 & Delivery, Informed Consent, Resource allocation and Knowledge & Skills.

Conclusion

Health research continues to exclude people with intellectual disabilities. 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 intellectual disabilities want to be included in research, not only as participants but also through coproduction.