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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.
- 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