谁应该决定儿童和青少年参与健康研究？肯尼亚农村地区儿童和成年人的观点。
Who should decide about children's and adolescents' participation in health research? The views of children and adults in rural Kenya.
机构信息
Kenya Medical Research Institute (KEMRI) Wellcome Trust Research Institute, PO Box 230, Kilifi, 80108, Kenya.
Centre for Tropical Medicine and Global Health, Nuffield Department of Medicine, Oxford University, Peter Medawar Building, South Parks Road, Oxford, OX13SY, UK.
出版信息
BMC Med Ethics. 2019 Jun 14;20(1):41. doi: 10.1186/s12910-019-0375-9.
BACKGROUND
International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Strong calls have been made for the active involvement of children and adolescents in developing research proposals and policies, including in decision-making about research participation. Much evidence and debate on this topic has focused on high-income settings, while the greatest health burdens and research gaps occur in low-middle income countries, highlighting the need to take account of voices from more diverse contexts.
METHODS
Between January and March 2014, 56 community representatives and secondary school students were involved in eight group discussions to explore views on the acceptability of involving children and adolescents in research, and how these groups should be involved in decision-making about their own participation. Discussions were voice-recorded and transcriptions analyzed using Framework Analysis, combining deductive and inductive approaches.
RESULTS
Across these discussions, the idea of involving children and adolescents in decision-making about research participation was strongly supported given similar levels of responsibility carried in everyday life; existing capacity that should be recognized; the opportunity for learning involved; varying levels of parental control; and generational shifts towards greater understanding of science for adolescents than their parents. Joint decision-making processes were supported for older children and adolescents, with parental control influenced by perceptions of the risks involved in participation.
CONCLUSIONS
Moves towards more active involvement of children and adolescents in planning studies and in making decisions about their participation are supported by these findings from Kenya. Important emerging considerations include the need to take account of the nature of proposed studies and prevailing attitudes and understanding of research in identifying children's and adolescents' roles. More research is needed to expand diversity and develop approaches to joint assent and consent processes that would fairly represent children's and adolescents' wishes and interests, towards their long term benefit.
背景
国际研究指南逐渐转向更加积极主动地将儿童和青少年纳入健康研究，以认识到需要更多基于证据的治疗方法。强烈呼吁儿童和青少年积极参与制定研究提案和政策，包括参与有关研究参与的决策。关于这个主题的大量证据和辩论都集中在高收入环境中，而最大的健康负担和研究差距出现在中低收入国家，这凸显了需要考虑来自更多不同背景的声音。
方法
2014 年 1 月至 3 月期间，有 56 名社区代表和中学生参与了 8 组讨论，探讨了让儿童和青少年参与研究的可接受性，以及这些群体应如何参与关于他们自己参与的决策。讨论内容被录音并使用框架分析进行转录分析，结合了演绎和归纳方法。
结果
在这些讨论中，鉴于日常生活中承担的类似责任、应该承认的现有能力、所涉及的学习机会、不同程度的父母控制以及青少年对科学的理解比他们的父母更广泛等因素，让儿童和青少年参与研究参与决策的想法得到了强烈支持。对于年龄较大的儿童和青少年，支持共同决策过程，但父母的控制受到参与所涉及风险的看法的影响。
结论
这些来自肯尼亚的发现支持了让儿童和青少年更积极地参与规划研究以及对其参与做出决策的举措。重要的新出现的考虑因素包括需要根据研究的性质以及对研究的态度和理解来确定儿童和青少年的角色。需要进行更多研究以扩大多样性，并制定联合同意和同意程序的方法，以公平地代表儿童和青少年的愿望和利益，以促进他们的长期利益。
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