van Schelven Femke, van der Meulen Eline, Kroeze Noortje, Ketelaar Marjolijn, Boeije Hennie
Netherlands Institute for Health Services Research, Utrecht, The Netherlands.
JongPIT Foundation, Amsterdam, The Netherlands.
Res Involv Engagem. 2020 Sep 30;6:59. doi: 10.1186/s40900-020-00234-1. eCollection 2020.
Young people with a chronic condition are increasingly involved in doing research and developing tools and interventions that concern them. Working together with patients is called Patient and Public Involvement (PPI). We know from the literature that PPI with young people with a chronic condition can be challenging. Therefore, it is important that everyone shares their lessons learned from doing PPI.We want to share our lessons learned from a large program, called Care and Future Prospects. This program helps young people with a chronic condition to, for example, go to school or to find a job. It funded numerous projects that could contribute to this. In all projects, project teams collaborated with young people with a chronic condition.We asked young people with a chronic condition and project teams about their experiences with PPI. Project teams wrote reports, were interviewed, and filled out a tool called the Involvement Matrix. Young people filled out a questionnaire.In the article, we present our lessons learned. Examples are: it is important to involve young people with a chronic condition from the start of a project and everyone involved in a project should continuously discuss their responsibilities. We provide practical tips on how young people with a chronic condition and project teams can do this. A tip for young people is, for example: 'discuss with the project team what you can and want to do and what you need'. An example of a tip for project teams is: 'Take time to listen attentively to the ideas of young people'.
The Patient and Public Involvement (PPI) of young people with a chronic condition receives increasing attention in policy and practice. This is, however, not without its challenges. Consequently, calls have been made to share lessons learned during PPI practice.We share our lessons learned from a large participatory program, called Care and Future Prospects. This program aims to improve the social position of young people aged 0-25 with a physical or mental chronic condition by funding participatory projects. We have drawn our lessons from 33 of these projects, using four data sources. One data source provided information from the perspective of young people with a chronic condition, i.e. questionnaires. Three data sources contained information from the perspectives of project teams, i.e. project reports, case studies of projects and Involvement Matrices. For most of the projects, we have information from multiple data sources.We have combined the findings derived from all four data sources. This resulted in multiple lessons learned about PPI with young people with a chronic condition. Those lessons are divided into six themes, including practicalities to take into account at the start, involvement from the start, roles and responsibilities, support, flexibility and an open mind, and evaluation of process and outcomes.The lessons learned have taught us that meaningful PPI requires effort, time and resources from both young people and project teams, from the beginning to the end. It is important to continuously discuss roles and responsibilities, and whether these still meet everyone's needs and wishes. Our study adds to previous research by providing practical examples of encountered challenges and how to deal with them. Moreover, the practical tips can be a valuable aid by showing young people and project teams what concrete actions can support a successful PPI process.
患有慢性病的年轻人越来越多地参与到与他们相关的研究以及工具和干预措施的开发中。与患者合作被称为患者及公众参与（PPI）。我们从文献中了解到，与患有慢性病的年轻人进行患者及公众参与可能具有挑战性。因此，每个人分享他们在患者及公众参与方面的经验教训非常重要。我们想分享我们从一个名为“关爱与未来前景”的大型项目中学到的经验教训。该项目帮助患有慢性病的年轻人，例如上学或找工作。它资助了许多有助于此的项目。在所有项目中，项目团队都与患有慢性病的年轻人合作。我们询问了患有慢性病的年轻人和项目团队关于他们在患者及公众参与方面的经历。项目团队撰写报告、接受采访并填写了一个名为“参与矩阵”的工具。年轻人填写了一份问卷。在本文中，我们展示了我们学到的经验教训。例如：从项目一开始就让患有慢性病的年轻人参与进来很重要，并且参与项目的每个人都应该不断讨论他们的职责。我们提供了关于患有慢性病的年轻人和项目团队如何做到这一点的实用建议。给年轻人的一个建议是，例如：“与项目团队讨论你能做什么、想做什么以及你需要什么”。给项目团队的一个建议示例是：“花时间认真倾听年轻人的想法”。
患有慢性病的年轻人的患者及公众参与（PPI）在政策和实践中受到越来越多的关注。然而，这并非没有挑战。因此，有人呼吁分享在患者及公众参与实践中吸取的经验教训。我们分享我们从一个名为“关爱与未来前景”的大型参与式项目中学到的经验教训。该项目旨在通过资助参与式项目来改善0至25岁患有身体或精神慢性病的年轻人的社会地位。我们从这些项目中的33个项目中吸取了经验教训，使用了四个数据源。一个数据源从患有慢性病的年轻人的角度提供信息，即问卷。三个数据源包含从项目团队的角度的信息，即项目报告、项目案例研究和参与矩阵。对于大多数项目，我们有来自多个数据源的信息。我们综合了从所有四个数据源得出的结果。这产生了关于与患有慢性病的年轻人进行患者及公众参与的多个经验教训。这些经验教训分为六个主题，包括开始时要考虑的实际情况、从一开始就参与、角色和职责、支持、灵活性和开放的心态以及对过程和结果的评估。吸取的经验教训告诉我们，有意义的患者及公众参与从始至终都需要年轻人和项目团队付出努力、时间和资源。不断讨论角色和职责以及它们是否仍然满足每个人的需求和愿望很重要。我们的研究通过提供遇到的挑战及应对方法的实际例子，为先前的研究增添了内容。此外，这些实用建议通过向年轻人和项目团队展示哪些具体行动可以支持成功的患者及公众参与过程，可能会成为一种有价值的帮助。
