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Co‐production with “vulnerable” groups: Balancing protection and participation

机译:与“弱势”群体的联合制作:保护与参与之间的平衡

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Background and aim This paper explores the tension between participation and protection at a time when professionals are encouraged to engage patients and citizens in both the “R” (research) and the “D” (development) of services. Concerns to protect groups perceived as “vulnerable” can mean that not everyone is afforded the same opportunity to participate. Methods Our data draw on the literature and secondary analysis of a study designed to explore the experiences of young peoples' transitions from health and social care to adult services. In seeking ethics approval, tensions between protection and participation were evident, and once the study was concluded, we reviewed group and individual interview transcripts, team email correspondence, and research notes. We considered aspects of participation, co‐production, involvement, and research design in relation to the ethics concerns raised. Findings In terms of privacy and confidentiality, young people were skilled at setting their own boundaries. Whilst young people leaving foster and residential care are frequently perceived as vulnerable, those in our study asserted their agency and desire to be “visible.” Some experienced conditions aimed at protecting their confidentiality or safety as oppressive. Conclusion The risk reduction strategies that often underpin ethics approval processes can also carry risks. Limiting opportunities to play a part in research for people who may already be excluded on age, health, language, or other grounds reduces the range of lay knowledge on which we can draw, limits generalisability, and potentially adds to damaging social exclusion. Learning how to participate effectively is a life skill.
机译:背景和目的本文探讨了在鼓励专业人员使患者和公民参与服务的“ R”(研究)和“ D”(发展)时,参与与保护之间的张力。对保护被视为“弱势”群体的关注可能意味着并非每个人都获得了参与的机会。方法我们的数据基于文献和对一项旨在探索年轻人从健康和社会护理到成人服务过渡的研究的二级分析。在寻求伦理学批准时,保护和参与之间的紧张关系显而易见,一旦研究结束,我们将审查小组和个人访谈笔录,团队电子邮件信函和研究记录。我们考虑了与提出的道德问题相关的参与,共同生产,参与和研究设计等方面。调查结果在隐私和保密性方面,年轻人熟练地设定了自己的界限。尽管年轻人通常被视为离开寄养和寄宿家庭的弱势群体,但我们研究中的年轻人却断言自己的代理人和渴望“可见”的愿望。一些有经验的条件旨在保护其机密性或压迫性。结论通常作为道德批准流程基础的降低风险策略也可能带来风险。限制可能因年龄,健康,语言或其他原因而被排除在研究之外的人们参与研究的机会,减少了我们可以借鉴的专业知识的范围,限制了一般性,并有可能增加破坏性的社会排斥。学习如何有效参与是一种生活技能。

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