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“我确信我们让这项研究变得更好了……”:智障成年人以及患者和公众参与健康研究中的家长照顾者的经历。

'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.

作者信息

Beighton Carole, Victor Christina, Carey Iain M, Hosking Fay, DeWilde Steve, Cook Derek G, Manners Paula, Harris Tess

机构信息

St George's University of London, UK.

Brunel University London, UK.

出版信息

J Intellect Disabil. 2019 Mar;23(1):78-96. doi: 10.1177/1744629517723485. Epub 2017 Aug 16.

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.

摘要

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。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1058/6383106/1701af92ed18/10.1177_1744629517723485-fig1.jpg

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