Preston Jennifer, Biglino Giovanni, Harbottle Victoria, Dalrymple Emma, Stalford Helen, Beresford Michael W
Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK.
Bristol Medical School, University of Bristol, Bristol, UK.
Res Involv Engagem. 2023 Jul 31;9(1):61. doi: 10.1186/s40900-023-00477-8.
The active involvement of patients and the public in the design and delivery of health research has been increasingly encouraged, if not enforced. Knowledge of how this is realised in practice, especially where children and young people (CYP) are concerned, is limited, partly due to the low level of reporting of patient and public involvement (PPI) in general. The aim of this work was to assess how researchers funded by the National Institute for Health and Care Research (NIHR) report the involvement of CYP in the design and conduct of child health research to better understand the opportunities offered to CYP, and the realities of involvement in practice.
A participation matrix, analysis framework and accompanying tools were adapted from existing frameworks, including a child-rights informed framework, the Guidance for Reporting Involvement of Patients and the Public Checklist Short Form (GRIPP2SF), and NIHR reporting expectations. Child-focused research reports were identified from the NIHR Journals Library, including any interventional or observational study involving CYP aged 0-< 24 years. In two co-design workshops with healthcare professionals and CYP, we tested and refined the participation matrix, analysis framework and accompanying tools.
Only thirty-two NIHR reports out of 169 (19%) were identified as relevant and included reporting of PPI with CYP. We identified significant variability in the way PPI with CYP was reported. Only 4/32 (12%) reports fully met NIHR (and GRIPP2SF) reporting criteria. Only 3/32 (9%) reports formally evaluated or self-reflected on PPI activities with CYP, whilst 15/32 (47%) provided minimal information about CYP involvement. The most common approach to involving CYP (23/32, 72%) was through the medium of existing groups or networks.
Despite the NIHR's commitment to increase the quality, transparency, and consistency of reporting PPI, the reporting of involvement with CYP remains sub-optimal. Neglecting to report key details of involvement methods and impacts deprives the research community of knowledge to advance the field of delivering 'meaningful' PPI with CYP. Practical guidance on how researchers can report the processes and outputs of CYP involvement more rigorously may help child health researchers to involve them more meaningfully. This research offers practical tools informed by CYP to aid the reporting process.
患者和公众积极参与健康研究的设计与实施，即便未被强制要求，也日益受到鼓励。关于在实践中如何实现这一点，尤其是涉及儿童和青少年（CYP）时，相关知识有限，部分原因是总体上患者和公众参与（PPI）的报告水平较低。这项工作的目的是评估由英国国家卫生与保健研究所（NIHR）资助的研究人员如何报告CYP参与儿童健康研究的设计和实施情况，以便更好地了解为CYP提供的机会以及参与实践的实际情况。
参与矩阵、分析框架及配套工具改编自现有框架，包括一个基于儿童权利的框架、《患者和公众参与报告指南简表》（GRIPP2SF）以及NIHR的报告期望。从NIHR期刊库中识别以儿童为重点的研究报告，包括任何涉及0至<24岁CYP的干预性或观察性研究。在与医疗专业人员和CYP共同开展的两次协同设计研讨会上，我们对参与矩阵、分析框架及配套工具进行了测试和完善。
在169份报告中，仅32份（19%）被确定为相关报告，其中包括CYP参与PPI的报告。我们发现报告CYP参与PPI的方式存在显著差异。只有4/32（12%）的报告完全符合NIHR（及GRIPP2SF）的报告标准。只有3/32（9%）的报告对与CYP相关的PPI活动进行了正式评估或自我反思，而15/32（47%）的报告提供的关于CYP参与情况的信息极少。让CYP参与的最常见方式（23/32，72%）是通过现有团体或网络。
尽管NIHR致力于提高PPI报告的质量、透明度和一致性，但关于CYP参与情况的报告仍不尽如人意。忽视报告参与方法和影响的关键细节，使研究界无法获取推动与CYP开展“有意义”的PPI领域发展的知识。关于研究人员如何更严格地报告CYP参与过程和成果的实用指南，可能有助于儿童健康研究人员更有意义地让他们参与进来。本研究提供了以CYP为依据的实用工具，以协助报告过程。
