Co-producing ethics guidelines together with people with learning disabilities
Co-producing ethics guidelines together with people with learning disabilities
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DOI：
10.1111/bld.12590
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发表时间：
2024-03-08
影响因子：
1.5
通讯作者：
Wood，Toni Ann
中科院分区：
文献类型：
--
作者：
Bottomley，Mary;Bradley，Jodie;Wood，Toni Ann
我们是一个由临床、学术和倡导研究人员组成的研究团队，有学习障碍和没有学习障碍，致力于人性化医疗（为学习障碍人士）项目。该项目致力于寻找和分享改善学习障碍者生活的医疗保健实践。作为我们进入国家卫生服务研究网站进行实地调查的伦理申请的一部分，我们与有学习障碍的研究人员一起编写了共同制定研究伦理的指导原则。在本文中，我们介绍了这些参与性道德良好实践指南，并对我们的合作进行了反思。方法探讨制定《参与性伦理良好实践指南》。这些指南是在与我们的整个研究团队（包括基于倡导的组织研究人员、临床研究人员和大学研究人员）的在线合作生产会议期间制定的。在本指南的制定过程中，我们考虑了同意、理解研究和理解研究方法。研究结果我们提出了与学习障碍人士共同进行研究的十条指导方针。结论研究结果对学习障碍研究人员、大学和临床研究人员、资助者以及研究治理工作人员（如伦理委员会和大学研究部门）有一定的帮助。
BackgroundWe are a research team of clinical, academic and advocacy‐based researchers with and without learning disabilities, working on theHumanising Healthcare(for people with learning disabilities) project. The project is dedicated to finding and sharing healthcare practices that enhance the lives of people with learning disabilities. As part of our ethics applications to access National Health Service study sites for fieldwork, we worked together to write guiding principles for co‐producing research ethics with researchers with learning disabilities. In this paper, we introduce these Participatory Ethics Good Practice Guidelines and reflect on our collaboration.MethodsWe reflect on developing the Participatory Ethics Good Practice Guidelines. These guidelines were developed during online co‐production meetings with our full research team, including advocacy‐based organisation researchers, clinical researchers and university researchers. We considered consent, understanding research, and understanding research methods during the development of these Guidelines.FindingsWe present ten guidelines for co‐producing research with people with learning disabilities.ConclusionsOur findings may be helpful to researchers with learning disabilities, university and clinical researchers, funders, and those who work in research governance (e.g., ethics committees and university research departments).