Beighton Carole, Victor Christina, Carey Iain M, Hosking Fay, DeWilde Steve, Cook Derek G, Manners Paula, Harris Tess
St George's University of London, UK.
Brunel University London, UK.
J Intellect Disabil. 2019 Mar;23(1):78-96. doi: 10.1177/1744629517723485. Epub 2017 Aug 16.
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.
患者及公众参与在英国被视为健康研究不可或缺的一部分；然而，记录成年智障人士及其家长照顾者参与健康研究的研究却很稀少。通过小组访谈，本研究探讨了一组成年智障人士和一组家长照顾者对于他们协作/参与一项为期3年的研究的观点和经历，该研究探索了针对成年智障人士进行年度健康检查的有效性。主题分析确定了两组共有的五个关键主题；参与的真实性、共同协作、生成新的结果指标、研究结果的传播以及参与未来研究。尽管增加自信心是通过轶事报道而非分析得出，但也进行了讨论。这些群体独特的观点带来了研究团队之前未考虑到的见解，从而产生了为医疗保健实践提供参考的重要建议。
