Why do we continue to exclude the most vulnerable in our society in diabetes research and education? Addressing the challenges presented by people with intellectual disability

Abstract

Abstract People with an intellectual disability are more likely to develop diabetes compared to their non‐disabled peers. There has been a history of exclusion of people with an intellectual disability from diabetes research and education: we must now challenge this from a human rights perspective. In challenging these perceptions, we must identify the ethical and methodological reasons for exclusion and offer practical solutions to these challenges.These barriers to inclusion focus on three core areas. Firstly, individual factors concerning the person with the disability (can the person give their own informed consent, can the person read/write, completion of self‐report measures?). Secondly, factors concerning the methodology and design of the research study (can studies recruit the numbers needed, can people with intellectual disability understand/accept randomisation?). And, thirdly, system/organisational factors pertaining to the enablers/barriers to engaging in and completing research studies (buy‐in from senior managers, staff acting as gatekeepers, maternalistic attitudes held by gatekeepers, fidelity of intervention delivery).This Janet Kinson paper will explore these intentional and unintentional exclusion criteria that are so often applied to people with an intellectual disability in research trial studies. This paper will dispel the myths and offer solutions for including people with an intellectual disability in diabetes research and education. Using the UK national diabetes structured education programme, DESMOND, this paper will highlight the types of reasonable adjustments that can be made to adapt this programme suitable for adults with an intellectual disability: called DESMOND‐ID. This paper will demonstrate how, with reasonable adjustments, this newly‐adapted DESMOND‐ID education programme then can be tested within a National Institute for Health and Care Research clinical randomised control trial across the UK investigating the programme's clinical and cost‐effectiveness. Copyright © 2024 John Wiley & Sons.