让参与者、患者和公众参与青年心理健康研究,一切皆有可能

JCPP advances Pub Date : 2024-07-03 DOI:10.1002/jcv2.12258
M. Bakermans‐Kranenburg, Marinus H. van IJzendoorn
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引用次数: 0

摘要

青少年心理健康研究中的 "患者和公众参与"(PPI)旨在使研究更能满足与心理健康问题作斗争的青少年、他们的父母、心理健康专业人员和其他利益相关者的需求。青少年心理健康研究中的 "参与者和公众参与"(Patient and Public Involvement,PPI)的特点是否与作为转化必要条件的透明度和复制前提相一致?在此,我们针对这些问题,重新研究了最近两篇关于患者和公众参与的系统性综述中包含的 50 项患者和公众参与研究,这些研究的特点与患者和公众参与研究中的透明度、可复制性、可转化性和共同作者等问题相关。在纳入了患者和公众参与的青少年心理健康研究中,几乎有三分之二的研究将其结果转化为政策或实践,大部分是作为建议,但有时也通过传播(在线)干预措施。与此同时,绝大多数研究(70%)的作者还建议有必要进一步研究其结果,例如通过随机对照试验来验证其探索性研究的结果。只有四分之一的使用 PPI 的研究符合可复制性的条件,因此大多数 PPI 研究建议过早地转化结果。24%的研究指定了参与研究者的作者身份。在探索阶段,PPI "无所不能",以产生富有成果的假设。然而,PPI 研究结果的转化需要有一个坚实的、可重复结果的证据基础。在参与式行动研究中,研究与行动的激进融合似乎与可复制的、因而也是可转化的探究不相容。为参与式行动研究的代表指定共同作者往往与现行的作者资格准则相悖。在资助基金会要求在资助提案中加入参与式行动研究之前,需要从随机试验中获得更多关于参与式行动研究的转化影响的证据。
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Anything goes for participant, patient and public involvement in youth mental health research
Participant and Public Involvement in youth mental health research aims at making research more responsive to the needs of youth struggling with mental health issues, their parents, and mental health professionals and other stakeholders. Do characteristics of Patient and Public Involvement (PPI) in youth mental health research align with transparency and replication prerequisites as necessary conditions for translation? Relatedly, the question is addressed whether co‐authorship should be assigned to youth involved in the study.Here we address these questions re‐visiting 50 PPI studies included in two recent systematic reviews of PPI on characteristics that are pertinent to questions about transparency, replicability, translatability, and co‐authorship in PPI research.Almost two‐third of the studies on youth mental health incorporating PPI translate their results to policy or practice, mostly as recommendations but sometimes also by dissemination of (online) interventions. At the same time the authors of a substantial majority of the studies (70%) also suggest the need for further work on their results, for example, in randomized controlled trials to validate the outcome of their exploratory inquiry. Only a quarter of the studies using PPI met the conditions for replicability, thus a majority of the PPI studies suggest premature translation of results. Authorship to involved participants was assigned in 24% of the studies.“Anything goes” for PPI in an exploratory stage to generate fruitful hypotheses. Translation of the findings of PPI studies however require a firm evidence base of replicated results. Radical merging of research and action in participatory action research seems incompatible with replicable and therefore translatable inquiry. Assigning co‐authorship to PPI representatives is often at odds with current guidelines for authorship. More evidence from randomized trials on the translational impact of PPI is needed before grant foundations should require PPI in grant proposals.
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