%0 Journal Article
%T ¡®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
%A Carole Beighton
%A Christina Victor
%A Derek G Cook
%A Fay Hosking
%A Iain M Carey
%A Paula Manners
%A Steve DeWilde
%A Tess Harris
%J Journal of Intellectual Disabilities
%@ 1744-6309
%D 2019
%R 10.1177/1744629517723485
%X 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
%K intellectual disabilities
%K parent carers
%K PPI
%K public involvement
%K participatory inclusive research
%U https://journals.sagepub.com/doi/full/10.1177/1744629517723485