Objective

Patient and public involvement (PPI) is an essential ethical component in mental health research, and represents a major opportunity to improve translational mental health research. The goals of this review were to (1) provide a comprehensive overview of empirical research focusing on PPI of children and young people (CYP) in mental health research studies; (2) evaluate the results with CYP and parents of those affected; and (3) derive recommendations for PPI of CYP in future mental health research studies.

Methods

Based on an extensive literature review following the PRISMA guidelines, studies including CYP (age range: 0–21 years) in mental health research were identified and examined along a two-part analysis process considering their usability for mental health research. The conclusions drawn from the studies concerning CYP involvement were summarized and recommendations derived.

Results

Overall, 19 articles reported PPI of CYP (age range: 10–26 years) in mental health research and were included for further analyses. The integrated studies differed in the type of PPI, and in the way the participation and involvement processes were presented.

Conclusion

Progress has been made in engaging CYP in mental health research, but there is a need for international standards, operationalization, and evaluation measures. Future research should go beyond merely reporting the PPI process itself. It should clearly indicate how and to what extent feedback from these PPI members was incorporated throughout the research process.

中文翻译：

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系统评价：儿童和青少年患者和公众参与心理健康研究

客观的

患者和公众参与（PPI）是心理健康研究的重要伦理组成部分，也是改进转化性心理健康研究的重要机会。本综述的目标是 (1) 全面概述心理健康研究中针对儿童和青少年 (CYP) 的 PPI 的实证研究；(2) 与CYP和受影响者的父母一起评估结果；(3) 在未来的心理健康研究中得出对 CYP 的 PPI 的建议。

方法

根据 PRISMA 指南进行的广泛文献综述，考虑到心理健康研究的可用性，通过两部分分析过程确定并检查了心理健康研究中包括 CYP（年龄范围：0-21 岁）在内的研究。总结了有关 CYP 参与的研究得出的结论并提出了建议。

结果

总体而言，有 19 篇文章报告了心理健康研究中 CYP（年龄范围：10-26 岁）的 PPI，并被纳入进一步分析。综合研究的不同之处在于 PPI 的类型以及参与和参与过程的呈现方式。

结论

CYP 参与心理健康研究已取得进展，但仍需要国际标准、可操作性和评估措施。未来的研究不应仅仅报告 PPI 过程本身。它应该清楚地表明这些 PPI 成员的反馈如何以及在多大程度上被纳入整个研究过程。