Faculty of Health, Social Care and Medicine, Edge Hill University, Ormskirk, United Kingdom.
Faculty of Health, Public Health Institute, Liverpool John Moores University, Liverpool, United Kingdom.
PLoS One. 2021 Jun 9;16(6):e0252774. doi: 10.1371/journal.pone.0252774. eCollection 2021.
There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research.
Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made.
A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people's involvement in PPIE was limited.
Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.
人们越来越关注如何让儿童和年轻人参与患者和公众参与和投入（PPIE）健康研究。然而，关于报告参与或排除在 PPIE 之外的儿童和年轻人、用于让他们参与 PPIE 的报告方法以及参与 PPIE 的原因以及由此产生的结果，相对较少存在强有力的证据。我们进行了范围界定审查，以确定、综合和呈现文献中关于与健康相关研究中的儿童和年轻人的患者和公众参与和投入活动的已知信息。
通过在 Scopus、Medline、CINAHL、Cochrane 和 PsychInfo 数据库中搜索，并手动检查参考文献和灰色文献，确定了相关研究。使用经过改编的患者和公众参与指南（GRIPP2）作为框架来整理数据。两位审查员独立筛选文章，并一致做出决策。
通过文献搜索共确定了 9805 条参考文献（去除重复项后），其中有 233 篇全文文章符合纳入标准。该综述共纳入了 2000 年至 2019 年期间发表的 40 项研究。该综述揭示了与儿童 PPIE 报告质量的模糊性，在报告人口统计学和健康状况方面较为明确。综述发现，儿童和年轻人通常参与研究的多个阶段，但他们在 PPIE 中的参与程度也存在很大差异。对儿童和年轻人参与 PPIE 的影响的评估也很有限。
咨询、参与和参与都可以为儿童和年轻人提供有价值的方式来参与研究，参与的程度、目的和影响由儿童和年轻人自己决定。然而，需要谨慎做出决策，以确保其适合背景、环境和重点，从而实现预期的 PPIE 影响。应改进研究中 PPIE 的评估和报告。这将帮助研究人员和资助者更好地了解儿童和年轻人对健康研究的 PPIE 的益处、挑战和影响。
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