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

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.

The mouth and dis/ability.

Our aims in this paper are threefold. First, to understand how the mouth reveals the kinds of human beings that are de/valued in specific national locations and in global discourses with special attention on disability. Second, to subject the mouth to analysis from critical disability studies, specifically, an approach we describe as dis/ability studies. Third, to ask how the mouth might work as a site of resistance for disabled people. The paper begins by providing an introduction to critical disability studies, a perspective that foregrounds disability as the primary focus for thinking through the ways in which the body and society are shaped together. We move in this literature review towards a dis/ability studies approach that recognises the simultaneous processes of disablism (the exclusion of people with impairments) and ableism (the system by which standards of human autonomy and capability are made as key indicators of human worth). We then analyse the mouth in relation to pathologisation, human enhancement and resistance. We conclude with some final thoughts on the offerings of a dis/ability studies approach to those of interested with the intersections of the mouth and society.