Back to Search Start Over

'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.

Authors :
Beighton C
Victor C
Carey IM
Hosking F
DeWilde S
Cook DG
Manners P
Harris T
Source :
Journal of intellectual disabilities : JOID [J Intellect Disabil] 2019 Mar; Vol. 23 (1), pp. 78-96. Date of Electronic Publication: 2017 Aug 16.
Publication Year :
2019

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.

Details

Language :
English
ISSN :
1744-6309
Volume :
23
Issue :
1
Database :
MEDLINE
Journal :
Journal of intellectual disabilities : JOID
Publication Type :
Academic Journal
Accession number :
28812949
Full Text :
https://doi.org/10.1177/1744629517723485