In 2013, the Cambridge Clinical Research Facility (CCRF) set up a Children’s Non-Executive Research Board to advise on service and facility development and research involving children and young people (CYP). In 2015, the Children’s Experiences of Engaging in Research study (CHEER) was conceived to explore the Children’s Board as a patient and public involvement initiative. To explore the views of CYP, staff and parents involved in the Children’s Board with the view to describe their experiences of the selected mechanism of involvement (Children’s Board) within the context of operation (CCRF). A qualitative descriptive methodology involving qualitative content analysis of semi-structured interviews was used to derive descriptive summaries of the interview data. Interviews were carried out with staff (n = 5), children (n = 2) and parents (n = 2) who participated in the first or second Children’s Board meetings. Twelve descriptive summaries emerged: (1) CCRF ‘role’ perspective (2) purpose, remit and future direction (3) aspirations (4) learning as reciprocation (5) regular meetings, contact and feedback (6) expectation setting and ground rules (7) culture of PPI (8) surprise, underestimation and self-selection (9) reciprocity, incentivisation and participation (10) practicalities, timing and barriers (11) parental roles (12) event structure. These highlighted the importance of selecting the right mechanism of involvement in relation to context for involvement and the reductive biases adults and healthcare providers may unconsciously hold. Both of these aspects may affect the efficacy of PPI endeavours with CYP. Mechanisms by which CYP are involved in research should be considered from the outset; taking into consideration both the setting and contextual features. Contextual and process factors important in the adult PPI realm were generally observed in this PPI initiative with CYP; however further research is required to explore unconscious biases and reductive perceptions in adult facilitators.

中文翻译：

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“一群非常棒的人做事”——对儿童和年轻人的耐心和公众参与努力的定性描述性研究

2013 年，剑桥临床研究机构 (CCRF) 成立了儿童非执行研究委员会，就涉及儿童和青少年 (CYP) 的服务和设施开发和研究提供建议。2015 年，儿童参与研究的经历 (CHEER) 被设想为探索儿童委员会作为一项患者和公众参与倡议。探讨参与儿童委员会的 CYP、员工和家长的意见，以描述他们在运营 (CCRF) 的背景下选择的参与机制（儿童委员会）的经验。使用涉及半结构化访谈的定性内容分析的定性描述方法来得出访谈数据的描述性摘要。与工作人员（n = 5）进行了访谈，参加第一次或第二次儿童委员会会议的儿童 (n = 2) 和父母 (n = 2)。出现了 12 个描述性摘要：(1) CCRF“角色”视角 (2) 目的、职权范围和未来方向 (3) 抱负 (4) 学习互惠 (5) 定期会议、联系和反馈 (6) 期望设定和基本规则 ( 7) PPI 文化 (8) 惊喜、低估和自我选择 (9) 互惠、激励和参与 (10) 实用性、时机和障碍 (11) 父母角色 (12) 事件结构。这些强调了选择与参与环境相关的正确参与机制的重要性，以及成人和医疗保健提供者可能无意识地持有的减少偏见。这两个方面都可能影响 PPI 努力与 CYP 的效果。应该从一开始就考虑CYP参与研究的机制；考虑到环境和上下文特征。在 CYP 的 PPI 倡议中，普遍观察到在成人 PPI 领域中重要的背景和过程因素；然而，需要进一步的研究来探索成人协助者的无意识偏见和还原性认知。