We Know What We Are Talking about: Experiences of Young People with a Chronic Condition Involved in a Participatory Youth Panel and Their Perceived Impact

There is a growing recognition that research and implementation projects should be carried out with or by young people with chronic conditions, instead of about or for them. The current study aimed to explore how young people with chronic conditions experience their involvement in a participatory youth panel. This panel was a structural part of a three-year program addressing the social position of young people with chronic conditions in the Netherlands. It hosted 45 research and implementation projects to improve the social position of young people with chronic conditions in five areas: care, school, work, sport, and personal strength. Output from these projects were, for example, a tool to improve self-management, an evidence-based method to facilitate the transition to adult-care, and a digital platform about performing physical activity with a disability. During the program, six focus groups consisting of four to eleven panel members were conducted. The transcripts were analysed using the principles of thematic analysis. The results show panel members took part in multiple projects and activities, such as assessing project applications, evaluating the progress of projects and organizing a political lobby. They were enthusiastic about their role in the panel. The structural nature of the panel enabled them to achieve personal growth and professionalization of their participation. Consequently, panel members experienced an increasing impact on the program and separate projects, and on national politics. Therefore, it is suggested that a structural form of participation, such as a participatory panel, is suitable to facilitate meaningful participation of young people with chronic conditions.

Automated summary

The study aimed to explore the experience of young people with chronic conditions in a participatory youth panel, showing that they were enthusiastic and engaged in activities such as assessing project applications, evaluating project progress, and organizing political lobbying activities. The structural nature of the panel facilitated personal growth and professionalization of participation, leading to an increasing impact on the program, separate projects, and national politics.