Department of Integrated Care and Health Promotion, Akershus University Hospital, Lørenskog, Norway.
International Network of Health Promotion Hospitals and Health Services (HPH), Taskforce on Children & Adolescents (HPH-CA), Trento, Italy.
Health Expect. 2021 Aug;24(4):1044-1055. doi: 10.1111/hex.13266. Epub 2021 May 15.
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.
作为一项旨在评估医院青少年过渡项目的研究项目的一部分，我们提出了一个问题，即研究涉及青少年患者作为共同研究者时，存在哪些伦理和方法学挑战。我们的综述旨在总结关于年轻患者作为共同研究者参与研究的实证证据，并确定知识空白。
我们通过在 MEDLINE、EMBASE、PsychINFO 和 AMED 中进行搜索，开展了范围性综述。
我们发现有报道称，年轻患者在研究项目的任何阶段都积极参与作为共同研究者，尽管他们通常不会参与每个阶段。让年轻患者作为共同研究者参与研究需要大量的资源和时间。让年轻患者作为共同研究者参与研究有助于实现他们的参与权，并可能提高研究的相关性。年轻共同研究者的获益包括增强权能、技能培养和提高自尊心。很少有作者详细讨论涉及年轻共同研究者时的伦理考虑。没有一篇文章讨论法律考虑。
没有列出建议，但可以从文章中推断出建议。让年轻患者作为共同研究者参与研究需要时间、资金和灵活性。知识空白涉及将弱势群体作为共同研究者所涉及的法律和伦理困境。需要进一步思考在这种情况下，什么是有意义的参与，以及它需要什么。
本次综述是医院青年理事会参与重点领域和方法讨论的研究项目的一部分。
