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'I'm sure we made it a better study…': Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study.

Beighton, C; Victor, C; Carey, IM; Hosking, F; DeWilde, S; Cook, DG; Manners, P; Harris, T (2017) 'I'm sure we made it a better study…': Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study. J Intellect Disabil. p. 1744629517723485. ISSN 1744-6309 https://doi.org/10.1177/1744629517723485
SGUL Authors: Carey, Iain Miller

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Abstract

Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups' unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice.

Item Type: Article
Additional Information: © The Author(s) 2017 This article is distributed under the terms of the Creative Commons Attribution 4.0 License (http://www.creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Keywords: PPI, intellectual disabilities, parent carers, participatory inclusive research, public involvement, Rehabilitation, 1110 Nursing, 1303 Specialist Studies In Education
SGUL Research Institute / Research Centre: Academic Structure > Population Health Research Institute (INPH)
Journal or Publication Title: J Intellect Disabil
ISSN: 1744-6309
Language: eng
Dates:
DateEvent
16 August 2017Published Online
6 July 2017Accepted
Publisher License: Creative Commons: Attribution 4.0
Projects:
Project IDFunderFunder ID
12/64/154National Institute for Health Researchhttp://dx.doi.org/10.13039/501100000272
PubMed ID: 28812949
Go to PubMed abstract
URI: http://openaccess.sgul.ac.uk/id/eprint/109085
Publisher's version: https://doi.org/10.1177/1744629517723485

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