Pearson Helen, Bell Carol, Cox Karl, Kayum Catherine, Knox Leona, Gibson Faith, Myall Michelle, Darlington Anne-Sophie, Potter Emma, Bird Nicholas
School of Health Sciences, University of Southampton, Southampton, UK.
The Oak Centre for Children and Young People, The Royal Marsden NHS Foundation Trust, Sutton, Surrey, UK.
Res Involv Engagem. 2024 Aug 9;10(1):87. doi: 10.1186/s40900-024-00620-z.
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.
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.
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.
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.
患者及公众参与（PPI）研究被广泛认为是实现成功且有影响力研究的关键。尽管有此共识，但关于如何在整个研究周期中进行并应用有意义的PPI，以及如何应对博士生等研究人员所面临的挑战，尤其是在研究敏感话题时，相关报道有限。本文为初次接触PPI的研究人员提供见解和实例，内容涉及积极PPI的影响，以及在一项针对丧亲父母和照料者的儿科博士研究中建立和发展PPI小组的建议。
PPI以研究周期为依据。使用GRIPP2简表清单报告PPI情况。该研究由英国国家卫生与保健研究所资助。
PPI通过参与研究设计、招募、研究网站和品牌的共同设计，以及为应对新冠疫情而进行的伦理修订以增加参与度，从而提升了研究。文献综述扩展至纳入PPI咨询阶段，小组成员参与了数据分析。灵活的方法使参与在整个研究过程中迭代发展，从而带来了改进研究设计和结果的变化。
本文丰富了关于将PPI纳入博士研究，特别是在儿科领域与丧亲父母和照料者合作开展研究的有限知识库。采用适应性方法满足个体PPI需求、建立信任和尊重的伙伴关系、创造研究的共同所有权和投入，是成功实施PPI的关键要素。
