Youth patient and public involvement in health research in the Netherlands: experiences from a multi-stakeholder interview study
Year: 2025
Type: article
Abstract: While patient and public involvement in health research is becoming gradually more common, there is still only limited involvement from children and adolescents. Especially in funded (health) research, youth has been found to be a hard to reach and vulnerable group. Previous literature argues that a responsive approach is needed. To obtain more insights into how such an approach can be perpetuated in funded health research projects, this study evaluated the experiences with youth involvement in health research from a multi-stakeholder perspective. Youth involvement was evaluated in eight projects of six subsidy programs for health research. The RE-AIM model was used as an evaluation framework. This framework is useful to evaluate interventions on multiple levels (both on an individual and setting level), which makes it very applicable to a multi-stakeholder evaluation. For the evaluation, 24 in-depth interviews with seven program managers, six committee members, ten researchers, and six youth participants were performed. In the programs, approaches were used that are responsive to the context of the young participants such as a diverse, indirect and personal engagement approaches. Yet, difficulties in adapting to the needs of youth remain to exist due to the inflexible structure of the funded research process and limited time to explore diverse participation activities at multiple moments. As a result, the engagement of youth with a migration background or disability, were impeded. To successfully implement youth patient and public involvement within funded health research, subsidy providers should allocate the necessary resources to create space for being responsive to the needs of young people. Patient and public involvement in health research is becoming gradually more common. However, the involvement of children and adolescents is still limited. Previous research found that a more responsive approach is needed to include youth. To understand what such an approach may look like, this study was conducted. In this study we evaluated the experiences of four stakeholder groups with youth involvement in health research. These groups are: (1) managers of subsidy programs of the funding agencies, (2) committee members who review proposals of research projects, (3) researchers and, (4) youth participants that are involved in the research studies. To do this, we spoke with 29 people: seven program managers, six committee members, ten researchers, and six youth participants. Results showed that these people are mainly positive about youth patient and public involvement in health research. They also told us that it is challenging to involve youth. Existing procedures do not fit the needs of youth participants. To successfully include young people and children in health research, new structures of subsidy programs are needed. The needs and (busy) life of youth need to be taken as a starting point. These structures need to be tailored specifically to include youth rather than trying to fit youth patient and public involvement in existing structures. To accomplish this, sufficient resources should be made available to all stakeholders.
Institutions: Erasmus University Rotterdam, Vrije Universiteit Amsterdam
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,590
Funder: Vrije Universiteit Amsterdam
OpenAlex ID: W4408963580