“I'm sure we made it a better study…” Parent carers’ and adults with intellectual disabilities’ experiences of patient and public involvement in a health research study

Abstract

Patient and public involvement (PPI) 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 three 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.