Publicatie

Publication date

Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program.

Schelven, F. van, Meulen, E. van der, Kroeze, N., Ketelaar, M., Boeije, H. Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program. Research Involvement and Engagement: 2020, 6(59)
Read online
Background
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.
Aim
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.
What did we do
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.
Findings
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’.