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Abstract：
BACKGROUND: Patient and public involvement (PPI) in research is widely acknowledged as essential to achieving successful and impactful research. Despite this acknowledgement, there are limited reports on how to approach and apply meaningful PPI throughout the research cycle and how to address challenges for researchers such as doctoral students, particularly when undertaking research on sensitive topics. This paper provides insights and examples for researchers new to PPI, on the impact of active PPI and recommendations for building and developing a PPI group in a paediatric focused doctoral research study with bereaved parents and carers.
METHODS: PPI was informed by the research cycle. The GRIPP2 short-form checklist was used to report PPI. The research was funded by the National Institute for Health and Care Research.
RESULTS: PPI enhanced the research through input into the study design, recruitment, co-design of the study website and branding; and ethics amendments to increase participation in response to the COVID-19 pandemic. The literature review was extended to incorporate a PPI consultation phase and members contributed to data analysis. A flexible approach enabled involvement to develop iteratively throughout the research study, resulting in changes being made to enhance the study design and outcomes.
CONCLUSIONS: This paper contributes to the limited knowledge base on embedding PPI into a doctoral research study and within the paediatric setting specifically working in partnership with bereaved parents and carers. Employing an adaptive approach to meet individual PPI needs, building a trusting and respectful partnership, creating shared ownership and investment in the research, are essential components to successful PPI.
Involving patients and the public in research provides the opportunity to develop meaningful outcomes that are relevant to the population being studied. Despite the benefits of patient and public involvement in research, guidelines that support researchers in doing so, lack detail on how to do this effectively. This is particularly important for those new to research such as doctoral students, who have so much to learn in developing a research study. Different approaches and applications to involvement are also likely to be needed depending on the population being studied. There are limited published papers on examples of how doctoral students have engaged and involved patients and the public in the context of their studies, and specifically within the children’s setting, working in partnership with bereaved parents and carers, or those with seriously ill children. This paper offers examples and insights for those new to research in how to involve patients and the public throughout the research cycle. Specifically undertaking research in a sensitive subject of a particular childhood cancer which has poor outcomes and how to incorporate and evaluate successful patient and public involvement in their research activities such as study design and analysis of the results. Parent and carer reflections on their experiences of being involved are also reported and researcher recommendations for approaching and working with a patient and public group are described.
METHODS: PPI was informed by the research cycle. The GRIPP2 short-form checklist was used to report PPI. The research was funded by the National Institute for Health and Care Research.
RESULTS: PPI enhanced the research through input into the study design, recruitment, co-design of the study website and branding; and ethics amendments to increase participation in response to the COVID-19 pandemic. The literature review was extended to incorporate a PPI consultation phase and members contributed to data analysis. A flexible approach enabled involvement to develop iteratively throughout the research study, resulting in changes being made to enhance the study design and outcomes.
CONCLUSIONS: This paper contributes to the limited knowledge base on embedding PPI into a doctoral research study and within the paediatric setting specifically working in partnership with bereaved parents and carers. Employing an adaptive approach to meet individual PPI needs, building a trusting and respectful partnership, creating shared ownership and investment in the research, are essential components to successful PPI.
Involving patients and the public in research provides the opportunity to develop meaningful outcomes that are relevant to the population being studied. Despite the benefits of patient and public involvement in research, guidelines that support researchers in doing so, lack detail on how to do this effectively. This is particularly important for those new to research such as doctoral students, who have so much to learn in developing a research study. Different approaches and applications to involvement are also likely to be needed depending on the population being studied. There are limited published papers on examples of how doctoral students have engaged and involved patients and the public in the context of their studies, and specifically within the children’s setting, working in partnership with bereaved parents and carers, or those with seriously ill children. This paper offers examples and insights for those new to research in how to involve patients and the public throughout the research cycle. Specifically undertaking research in a sensitive subject of a particular childhood cancer which has poor outcomes and how to incorporate and evaluate successful patient and public involvement in their research activities such as study design and analysis of the results. Parent and carer reflections on their experiences of being involved are also reported and researcher recommendations for approaching and working with a patient and public group are described.
摘要：
背景：研究中的患者和公众参与（PPI）被广泛认为是实现成功和有影响力的研究的关键。尽管有这样的承认,关于如何在整个研究周期中接近和应用有意义的PPI以及如何应对博士生等研究人员的挑战的报告有限，特别是在研究敏感话题时。本文为PPI的新研究人员提供了见解和范例，关于活跃PPI的影响以及在一项针对失去亲人的父母和照顾者的儿科重点博士研究中建立和发展PPI小组的建议。
方法：PPI由研究周期通知。GRIPP2简短清单用于报告PPI。该研究由国家健康与护理研究所资助。
结果：PPI通过输入研究设计来增强研究，招募,共同设计研究网站和品牌；以及道德操守修正案，以增加应对COVID-19大流行的参与度。文献综述已扩展到纳入PPI咨询阶段，成员为数据分析做出了贡献。灵活的方法使参与能够在整个研究过程中迭代发展，导致进行更改以增强研究设计和结果。
结论：本文有助于将PPI嵌入到博士研究研究中以及与失去亲人的父母和照顾者合作的儿科环境中的知识基础有限。采用自适应方法来满足个人PPI需求，建立信任和尊重的伙伴关系，在研究中创造共同的所有权和投资，是成功PPI的重要组成部分。
让患者和公众参与研究提供了一个机会来制定与被研究人群相关的有意义的结果。尽管患者和公众参与研究有好处，支持研究人员这样做的指导方针，缺乏关于如何有效地做到这一点的细节。这对于像博士生这样的新研究人员来说尤其重要，在开展一项研究中，他们有很多东西要学。根据所研究的人群，也可能需要不同的参与方法和应用。关于博士生如何在他们的研究背景下参与和参与患者和公众的例子，发表的论文有限，特别是在儿童的环境中，与失去亲人的父母和照顾者合作，或者那些有重病孩子的人。本文为新研究人员提供了如何在整个研究周期中让患者和公众参与研究的示例和见解。专门在特定儿童癌症的敏感主题中进行研究，该主题具有不良结果，以及如何纳入和评估成功的患者和公众参与其研究活动，例如研究设计和结果分析。还报告了父母和照顾者对参与经历的反思，并描述了与患者和公共团体接触和合作的研究人员建议。
方法：PPI由研究周期通知。GRIPP2简短清单用于报告PPI。该研究由国家健康与护理研究所资助。
结果：PPI通过输入研究设计来增强研究，招募,共同设计研究网站和品牌；以及道德操守修正案，以增加应对COVID-19大流行的参与度。文献综述已扩展到纳入PPI咨询阶段，成员为数据分析做出了贡献。灵活的方法使参与能够在整个研究过程中迭代发展，导致进行更改以增强研究设计和结果。
结论：本文有助于将PPI嵌入到博士研究研究中以及与失去亲人的父母和照顾者合作的儿科环境中的知识基础有限。采用自适应方法来满足个人PPI需求，建立信任和尊重的伙伴关系，在研究中创造共同的所有权和投资，是成功PPI的重要组成部分。
让患者和公众参与研究提供了一个机会来制定与被研究人群相关的有意义的结果。尽管患者和公众参与研究有好处，支持研究人员这样做的指导方针，缺乏关于如何有效地做到这一点的细节。这对于像博士生这样的新研究人员来说尤其重要，在开展一项研究中，他们有很多东西要学。根据所研究的人群，也可能需要不同的参与方法和应用。关于博士生如何在他们的研究背景下参与和参与患者和公众的例子，发表的论文有限，特别是在儿童的环境中，与失去亲人的父母和照顾者合作，或者那些有重病孩子的人。本文为新研究人员提供了如何在整个研究周期中让患者和公众参与研究的示例和见解。专门在特定儿童癌症的敏感主题中进行研究，该主题具有不良结果，以及如何纳入和评估成功的患者和公众参与其研究活动，例如研究设计和结果分析。还报告了父母和照顾者对参与经历的反思，并描述了与患者和公共团体接触和合作的研究人员建议。
