Working with care leavers and young people still in care: ethical issues in the co-development of a participatory recordkeeping app
Working with care leavers and young people still in care: ethical issues in the co-development of a participatory recordkeeping app
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DOI：
10.1007/s10502-023-09425-7
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发表时间：
2023-09-27
期刊：
影响因子：
1.1
通讯作者：
Lomas，Elizabeth
中科院分区：
文献类型：
--
作者：
Williams，Peter;Shepherd，Elizabeth;Lomas，Elizabeth
社会研究的一个重要因素是研究参与者的道德待遇。本文概述了有关的一项研究（MIRRA：记忆，身份，权利的记录访问），开发了一个“参与式记录保存系统规范”的年轻人在照顾的伦理问题。研究小组与队列成员（13-17岁）和有护理经验的成年人合作。它一般性地讨论了需要伦理考虑的各种因素，如知情同意，匿名，避免伤害，以及需要使参与者及其同行受益。它接着描述了小组如何处理这些问题。特别是年轻人和“照顾”的参与者所需的道德措施进行了探讨。这些包括需要通过，首先，一个成年的看门人，一个代表每个照顾组织的方法，然后，在组织内，一个社会工作者或照顾者。这极大地限制了招募，因为这些成年人往往拒绝与年轻人接触。清单概述，来自'Gillick能力测试'，以评估能力，给予'知情同意'，愿意看门人/照顾者考虑。然后，本文讨论了如何参与者信息表开发的年轻队列，强调需要这样做，咨询适当的专业人士，出版的指南和潜在的参与者自己。在考虑了参与者可能面临的风险和利益后，本文得出结论，认为招募和参与这一群体的道德问题很复杂，需要更多的官僚主义、耐心和灵活性，但可能会带来巨大的回报。
An important element of social research is the ethical treatment of research participants. This paper outlines the ethical issues pertaining to a study (MIRRA: Memory-Identity-Rights in Records-Access) that developed a ‘participatory recordkeeping system specification’ for young people in care. The research team worked with members of the cohort themselves (aged 13–17 years) and care-experienced adults. It discusses in general terms the various elements that require ethical consideration, such as informed consent, anonymity, avoiding harm, and needing to benefit the participants and their peers. It goes on to describe how such issues were approached by the team. The particular ethical measures required for the young and ‘cared-for’ participants are explored. These included the need to work through, first, an adult gatekeeper—a representative of each care organisation approached—and then, within the organisation, a social worker or care-giver. This greatly limited recruitment, as these adults often vetoed contact with the young people themselves. A checklist is outlined, derived from the ‘Gillick Test of Competence’ to assess capacity to give ‘informed consent’, for willing gatekeepers/carers to consider. The article then addresses how the Participant Information Sheets were developed for the young cohort, emphasising the need to do this by consulting appropriate professionals, published guidelines and the potential participants themselves. After considering the possible risks and benefits to participants, the paper concludes by suggesting that ethical issues around recruitment and participation of this cohort are complex and require much additional bureaucracy, patience and flexibility—but can be immensely rewarding.