Adolescent and young adult patients as co-researchers: A scoping review.
Adolescent and young adult patients as co-researchers: A scoping review.
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DOI：
10.1111/hex.13266
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发表时间：
2021-08
期刊：
影响因子：
--
通讯作者：
Aujoulat I
中科院分区：
文献类型：
--
作者：
Fløtten KJØ;Guerreiro AIF;Simonelli I;Solevåg AL;Aujoulat I
作为一个旨在评估医院青少年过渡计划的研究项目的一部分，我们问自己，关于涉及青少年患者作为共同研究者的研究的伦理和方法学挑战，我们知道些什么。我们综述的目的是总结经验证据，并确定有关年轻患者参与合作研究的知识差距。我们通过检索MEDLINE、EMBASE、PsychINFO、AMED进行了范围审查。我们发现有报告称，年轻患者在研究项目的任何阶段都积极参与合作研究，尽管他们通常不会参与每个阶段。将年轻患者纳入合作研究人员需要大量资源和时间。让年轻患者参与共同研究有助于实现他们的参与权，并可能提高研究的相关性。对年轻的合作研究人员的好处包括赋权，技能建设和提高自尊。很少有作者详细介绍涉及年轻合作研究人员时的伦理考虑。纳入的文章均未讨论法律的考虑因素。没有列出建议清单，但可以从条款中推断出建议。在将年轻患者纳入共同研究人员时，需要时间、资金和灵活性。知识差距涉及将弱势群体纳入共同研究者的法律的和伦理困境。需要更多地思考什么是有意义的参与，以及在这方面参与意味着什么。这篇综述是医院青年理事会参与讨论重点领域和方法的研究项目的一部分。
As part of a research project aimed at evaluating a hospital‐based adolescent transition programme, we asked ourselves what is known about the ethical and methodological challenges of research involving adolescent patients as co‐researchers. The aim of our review was to summarize empirical evidence and identify knowledge gaps about the involvement of young patients as co‐researchers. We conducted a scoping review through searches in MEDLINE, EMBASE, PsychINFO, AMED. We found reports of young patients being actively engaged as co‐researchers in any stage of a research project, although commonly they were not involved in every stage. Including young patients as co‐researchers is resource demanding and time‐consuming. Involving young patients as co‐researchers contributes to the fulfilment of their right to participation and may improve the relevance of research. Benefits for the young co‐researcher include empowerment, skills building and raised self‐esteem. Few authors go into detail about ethical considerations when involving young co‐researchers. None of the included articles discuss legal considerations. No lists of recommendations are given, but recommendations can be deduced from the articles. There is need for time, funding and flexibility when including young patients as co‐researchers. Knowledge gaps concern legal and ethical dilemmas of including a vulnerable group as co‐researchers. More reflection is needed about what meaningful participation is and what it entails in this context. This review is part of a research project where the hospital youth council has been involved in discussions of focus area and methods.
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