Spencer Bethan, Hugh-Jones Siobhan, Cottrell David, Pini Simon
University of Leeds, Leeds Institute of Health Sciences, Leeds, UK.
School of Psychology, University of Leeds, Leeds, UK.
Res Involv Engagem. 2023 Oct 12;9(1):91. doi: 10.1186/s40900-023-00496-5.
Evidence suggests resources and services benefit from being developed in collaboration with the young people they aim to support. Despite this, patient and public involvement and engagement (PPIE) with young people is often tokenistic, limited in engagement and not developmentally tailored to young people. Our paper aims to build knowledge and practice for meaningfully engaging with young people in research design, analysis and as research participants.
We report the participatory processes from the INSCHOOL project, examining long-term health conditions and schooling among 11-18 year olds. Young people were consulted at the inception of the project through a hospital-based youth forum. This began a partnership where young people co-designed study documents, informed the recruitment process, developed creative approaches to data collection, participated in pilot interviews, co-analysed the qualitative data and co-presented results.
PPIE advisors, participants and researchers all benefitted from consistent involvement of young people throughout the project. Long-term engagement allowed advisors and researchers to build rapport and facilitated openness in sharing perspectives. PPIE advisors valued being able to shape the initial aims and language of the research questions, and contribute to every subsequent stage of the project. Advisors co-designed flexible data collection methods for the qualitative project that provided participants with choices in how they took part (interviews, focus groups, written tasks). Further choice was offered through co-designed preparation activities where participants completed one of four creative activities prior to the interview. Participants were therefore able to have control over how they participated and how they described their school experiences. Through participatory analysis meetings advisors used their first-hand experiences to inform the creation of themes and the language used to describe these themes. PPIE in every stage of the process helped researchers to keep the results grounded in young people's experience and challenge their assumptions as adults.
Young people have much to offer and the INSCHOOL project has shown that researchers can meaningfully involve young people in all aspects of research. Consistent PPIE resulted in a project where the voices of young people were prioritised throughout and power imbalances were reduced, leading to meaningful participant-centred data.
有证据表明，与目标服务对象——年轻人合作开发资源和服务会带来益处。尽管如此，与年轻人的患者及公众参与和介入（PPIE）往往只是形式上的，参与度有限，且并非根据年轻人的发展特点量身定制。我们的论文旨在积累知识并付诸实践，以便在研究设计、分析以及招募年轻人作为研究参与者的过程中，与他们进行有意义的互动。
我们报告了“在校”项目的参与过程，该项目研究11至18岁青少年的长期健康状况和学业情况。在项目启动时，通过医院的青年论坛咨询了年轻人的意见。由此开启了一种合作关系，年轻人共同设计研究文件，为招募过程提供信息，开发创新的数据收集方法，参与试点访谈，共同分析定性数据并共同展示结果。
PPIE顾问、参与者和研究人员都从年轻人在整个项目中的持续参与中受益。长期参与使顾问和研究人员能够建立融洽的关系，并促进了观点分享的开放性。PPIE顾问重视能够塑造研究问题的初始目标和语言，并为项目的后续每个阶段做出贡献。顾问们共同为定性项目设计了灵活的数据收集方法，为参与者提供了参与方式的选择（访谈、焦点小组、书面任务）。通过共同设计的准备活动提供了更多选择，参与者在访谈前完成四项创意活动之一。因此，参与者能够掌控自己的参与方式以及如何描述他们的学校经历。通过参与式分析会议，顾问们利用他们的第一手经验为主题的创建以及描述这些主题的语言提供信息。过程各阶段的PPIE帮助研究人员使结果基于年轻人的经验，并挑战他们作为成年人的假设。
年轻人能提供很多有价值的东西，“在校”项目表明研究人员可以让年轻人有意义地参与研究的各个方面。持续的PPIE促成了一个在整个过程中优先考虑年轻人声音并减少权力不平衡的项目，从而产生了以参与者为中心的有意义数据。
