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Who should decide about children's and adolescents' participation in health research? The views of children and adults in rural Kenya.
BMC Medical Ethics ( IF 2.7 ) Pub Date : 2019-06-14 , DOI: 10.1186/s12910-019-0375-9
Vicki Marsh 1, 2 , Nancy Mwangome 1 , Irene Jao 1 , Katharine Wright 3 , Sassy Molyneux 1, 2 , Alun Davies 1, 2
Affiliation  

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.

中文翻译:

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人的看法。

背景技术由于认识到需要更多的循证治疗,国际研究指南已经朝着越来越积极地将儿童和青少年纳入健康研究的方向。人们强烈呼吁儿童和青少年积极参与制定研究建议和政策,包括参与有关研究参与的决策。关于这一主题的许多证据和辩论都集中在高收入环境上,而最大的健康负担和研究差距出现在中低收入国家,这突出了需要考虑来自更多不同背景的声音。方法:2014年1月至2014年3月,56名社区代表和中学生参加了八次小组讨论,以探讨关于让儿童和青少年参与研究的可接受性的观点,以及这些小组应如何参与其自身参与的决策。讨论进行了录音,并使用框架分析法,结合了演绎法和归纳法,对转录进行了分析。结果在所有这些讨论中,考虑到日常生活中承担的责任水平相似,大力支持让儿童和青少年参与有关研究参与的决策。应承认的现有能力;参与学习的机会;不同程度的父母控制;以及世代相传的转变,使青少年对科学的理解比对父母的理解更为深刻。支持对年龄较大的儿童和青少年进行联合决策程序,并且父母对父母的控制受到对参与风险的认识的影响。结论肯尼亚的这些调查结果支持了儿童和青少年更积极地参与计划研究以及就他们的参与做出决策。新出现的重要考虑因素包括在确定儿童和青少年的角色时,必须考虑拟议研究的性质以及对研究的普遍态度和理解。需要开展更多的研究,以扩大多样性,并开发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,从而实现其长期利益。
更新日期:2019-06-14
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