Jayes Mark, Moulam Liz, Meredith Stuart, Whittle Helen, Lynch Yvonne, Goldbart Juliet, Judge Simon, Webb Edward, Meads David, Hemsley Bronwyn, Murray Janice
Manchester Metropolitan University, Manchester, United Kingdom.
Barnsley Hospital NHS Foundation Trust, Barnsley, United Kingdom.
Qual Health Res. 2021 Jun;31(7):1260-1274. doi: 10.1177/1049732321994791. Epub 2021 Feb 28.
In this study, we aimed to identify processes that enabled the involvement of a person with complex speech and motor disorders and the parent of a young person with these disorders as co-researchers in a U.K. research project. Semi-structured individual and focus group interviews explored participants' experiences and perceptions of public involvement (PI). Sixteen participants were recruited, with representation from (a) the interdisciplinary project team; (b) academics engaged in discrete project activities; (c) individuals providing organizational and operational project support; and (d) the project's two advisory groups. Data were analyzed using Framework Analysis. Five themes were generated: (a) the challenge of defining the co-researcher role; (b) power relations in PI; (c) resources used to enable PI; (d) perceived benefits of PI; and (e) facilitators of successful PI. Our findings provide new evidence about how inclusive research teams can support people with complex speech and motor disorders to contribute meaningfully to co-produced research.
在本研究中，我们旨在确定能让患有复杂言语和运动障碍的人与患有这些障碍的年轻人的父母作为联合研究人员参与英国一个研究项目的过程。半结构化的个人访谈和焦点小组访谈探讨了参与者对公众参与（PI）的经历和看法。招募了16名参与者，他们分别来自：（a）跨学科项目团队；（b）从事离散项目活动的学者；（c）提供项目组织和运营支持的个人；以及（d）该项目的两个咨询小组。使用框架分析法对数据进行了分析。生成了五个主题：（a）定义联合研究人员角色的挑战；（b）公众参与中的权力关系；（c）用于实现公众参与的资源；（d）公众参与的感知益处；以及（e）成功的公众参与的促进因素。我们的研究结果为包容性研究团队如何支持患有复杂言语和运动障碍的人对共同开展的研究做出有意义的贡献提供了新的证据。
