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Title: Involving service users with intellectual disability in research: experiences from the STOP Diabetes Study
Authors: Tyrer, Freya C.
Dunkley, A. J.
Spong, R.
Gangadharan, S. K.
Bhaumik, S.
Khunti, K.
First Published: 8-Sep-2016
Publisher: Wiley-Blackwell
Citation: Journal of Policy and Practice in Intellectual Disabilities 2016
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.
DOI Link: 10.1111/jppi.12176
ISSN: 1741-1122
eISSN: 1741-1130
Embargo on file until: 18-Sep-2018
Version: Post-print
Status: Peer-reviewed
Type: Journal Article
Rights: Copyright © International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc. This is the peer reviewed version of the following article: Journal of Policy and Practice in Intellectual Disabilities 2016, which has been published in final form at This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.
Description: The file associated with this record is under a 24-month embargo from publication in accordance with the publisher's self-archiving policy, available at The full text may be available through the publisher links provided above.
Appears in Collections:Published Articles, Dept. of Health Sciences

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