Involving Service Users with Intellectual Disability in Research: Experiences from the STOP Diabetes Study

Abstract

The involvement of service users (people who use health and social care services) in research is central to UK policies, is an integral component of many research funding programs and improves the quality and uptake of research. People with intellectual disability are often excluded from research involvement. The purpose of this article is to describe how adult service users with intellectual disability were involved in the early stages of a diabetes screening study conducted in Leicestershire, UK. People who volunteered were involved in five key areas: publicity, study documentation and process development, acceptability of measures, recruitment of research staff, and training of staff. Service users helped with logo selection, publicity materials, designing art work, raising awareness of the study, study documents, rehearsing clinics, and recruiting and training research staff. Our findings demonstrate that with careful planning adults with intellectual disability can meaningfully be involved and benefit from involvement in research. We look forward to continued involvement with service users with intellectual disability in future research studies.

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

“…203 In line with previous service user initiatives, the impact of involving service users in the research study is difficult to quantify. 204,205 We feel that involvement of service users improved the quality of, and recruitment for, our study, but we do not know what would have happened had we not involved them, and there are no similar studies in the UK on which to draw comparisons.…”

“…203 The initial education development work has previously been presented at the Diabetes UK Professional Conference in March 2015. 332 Similarly, the screening study was presented at the 2016 Diabetes UK Professional Conference.…”

Type 2 diabetes and glucose intolerance in a population with intellectual disabilities: the STOP diabetes cross‐sectional screening study

“…The integration of a multi‐disciplinary team, consisting of experienced researchers and ID healthcare professionals, enabled the successful development and conduct of the STOP Diabetes screening programme. This multi‐disciplinary approach allowed for sharing of knowledge and best practice, and was complemented by service user involvement, particularly in the early stages of developing and trialling study procedures/processes (Tyrer et al ).…”

Analyzing Roles, Barriers, and Supports of Co‐researchers in Inclusive Research

“…Carrying out research requires paying attention to different processes: the problem statement, research hypothesis, planning, information gathering, and data analysis among others (Pallisera et al, 2017). Supporting these processes in the framework of inclusive research involves facilitating the participation of people with disabilities on each of those steps (Tuffrey- Wijne, Bernal, Hubert, Butler, & Hollins, 2009;Tyrer et al, 2017). Yet, international literature barely offers suggestions on how to orient these processes (Abell et al, 2007;Strnadová et al, 2014).…”