PLAIN ENGLISH SUMMARY Paediatric Intensive Care (PIC) provides care to extremely ill children. Research in this area can be difficult because children are often too sick to discuss being involved in a study and parents are too upset about their child to think about taking part. This makes it even more important that research is well designed. We conducted a review of the literature about involving patients and the public (PPI) in PIC research. We wanted to know what PPI has taken place, who had been consulted and how this was undertaken. We reviewed the titles and abstracts of 4717 papers but found only 4 relevant papers. Three of the papers had consulted with parents of children who had been on PIC but only one study had spoken directly to a child themselves. The studies had used a number of different methods to invite people to take part but there did not appear to be one solution. All of the studies thought PPI was good for the development of their research but none of them had tried to measure what had changed as a result. There are difficulties associated with carrying out PPI in the PIC setting. Researchers need to share more of their experiences, positive and negative, so we can try to identify the best ways of carrying out PPI in PIC studies. This will help ensure that research studies are designed which address the needs and concerns of children and their parents. ABSTRACT Introduction Involving the public in health care research is reported to enhance the quality, appropriateness, acceptability and relevance to patients and the public (INVOLVE, Briefing notes for researchers, 2012; Staniszewska et al., Int J Technol Assess Health Care 274:391-9, 2011). Conducting research with children and young people is regarded as challenging and this makes it even more important that the research is well designed and understands the perspective of the child and family. We conducted a narrative literature review of the Patient and Public Involvement (PPI) literature, in the context of Paediatric Intensive Care (PIC). Our aims were to identify what PPI activity has taken place, with whom researchers engaged and what outcomes they reported. Method Electronic databases Medline, CINAHL and Embase (January 2000- June 2016) were searched using the search terms patient and public involvement and consultation. Participants were defined as child, parent, paediatric or pediatric and the context as intensive or critical care. Papers were excluded where activity reflected 'participants' as research subjects. Included papers were reviewed using the GRIPP checklist to appraise the quality of reporting. Results The search strategy identified 4717 abstracts. Seventeen papers were reviewed in full and four papers were included, all of which are case studies, describing a consultation approach. None of the papers described PPI as a multi-stage process. Only one study engaged with a former PIC patient and the majority of those consulted did not have any PIC experience. Activity was reported as being of benefit but there was no measurement of the impact of PPI. Conclusion There are numerous challenges associated with the conduct of research in PIC. It is therefore essential that the perspective of children, young people and their parents have been considered in the design of trials. However, there are few published accounts of PPI within the PIC context and the accounts that exist highlight issues about who to approach and when, and a lack of clarity about the best ways to engage with them. Research Ethics Committees and funding bodies expect to see evidence of PPI in research applications and we need to develop our understanding of what contributes towards successful PPI in this context.

中文翻译：

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患者和公众参与儿科重症监护研究：考虑、挑战和促进因素。

简明英语摘要 儿科重症监护 (PIC) 为重病儿童提供护理。这方面的研究可能很困难，因为孩子们通常病得太重，无法讨论参与研究，而父母对孩子的参与感到不安，无法考虑参与。这使得精心设计的研究变得更加重要。我们对涉及患者和公众 (PPI) 参与 PIC 研究的文献进行了回顾。我们想知道 PPI 发生了什么，咨询了谁以及如何进行。我们审查了 4717 篇论文的标题和摘要，但只找到了 4 篇相关论文。其中三篇论文咨询了参加 PIC 的孩子的父母，但只有一项研究直接与孩子本人交谈。这些研究使用了多种不同的方法来邀请人们参与，但似乎没有一种解决方案。所有的研究都认为 PPI 有利于他们的研究发展，但没有一个人试图衡量结果发生了什么变化。在 PIC 设置中执行 PPI 存在一些困难。研究人员需要分享更多他们的经验，无论是积极的还是消极的，因此我们可以尝试确定在 PIC 研究中进行 PPI 的最佳方法。这将有助于确保设计的研究能够解决儿童及其父母的需求和担忧。摘要 引言 据报道，让公众参与医疗保健研究可以提高质量、适当性、可接受性以及与患者和公众的相关性（INVOLVE，研究人员简报，2012；Staniszewska et al., Int J Technol Assess Health Care 274:391-9, 2011)。对儿童和青少年进行研究被认为具有挑战性，这使得研究设计得当并理解儿童和家庭的观点变得更加重要。我们在儿科重症监护 (PIC) 的背景下对患者和公众参与 (PPI) 文献进行了叙述性文献回顾。我们的目标是确定发生了哪些 PPI 活动、研究人员与谁合作以及他们报告了哪些结果。方法 使用检索词患者和公众参与和咨询检索电子数据库 Medline、CINAHL 和 Embase（2000 年 1 月至 2016 年 6 月）。参与者被定义为儿童、父母、儿科或儿科，背景为重症监护或重症监护。活动反映“参与者”作为研究对象的论文被排除在外。使用 GRIPP 检查表对纳入的论文进行审查，以评估报告的质量。结果 检索策略确定了 4717 篇摘要。对 17 篇论文进行了全面审查，并纳入了 4 篇论文，它们都是案例研究，描述了一种咨询方法。没有一篇论文将 PPI 描述为一个多阶段过程。只有一项与前 PIC 患者进行的研究，并且大多数被咨询的人没有任何 PIC 经验。活动被报告为有益，但没有衡量 PPI 的影响。结论 在 PIC 中进行研究存在许多挑战。因此，儿童的观点至关重要，在设计试验时考虑了年轻人及其父母。然而，在 PIC 的背景下，很少有关于 PPI 的公开报道，并且现有的报道突出了与谁和何时联系的问题，以及与他们互动的最佳方式缺乏明确性。研究伦理委员会和资助机构希望在研究应用中看到 PPI 的证据，我们需要加深对在这种情况下促成 PPI 成功的因素的理解。