Table 1.
Project descriptions
| Case study project | Description |
|---|---|
| Care and future prospects (CFP)a | The Youth Panel CFP was a panel of young partners by experience, founded to advise the CFP program in the Netherlands on which projects to subsidise to help young people with a chronic health condition. The CFP panel continued to expand its work and influence to improve the social position of young people with chronic health disorders in five areas: care, school, work, sport and empowerment. Today, the panel merged into a foundation, JongPIT, which is completely managed by (young) experts by experience. |
| Participation in Perspective (PiP) Project | Youth with lived experience of cerebral palsy, known as Ambassadors, were involved in various stages of the PiP research project that aimed to understand the experiences and stories of adolescents with cerebral palsy about participation and autonomy in the context of school, work, sports and care. |
| BrothErs and Sisters involvement in health care TranSition for youth with Brain-based disabilities (BEST SIBS) Study | Young adult siblings as members of the Sibling Youth Advisory Council (SibYAC) have been involved in the design and execution phase of a qualitative BEST SIBS Study, which aims to understand the roles and responsibilities of siblings and have a brother or sister with a neurodisability. |
| READiness in Youth fOR transition Out of pediatric Care Brain-Based Disabilities (READYorNot™ BBD) Project | The Patient and Family Advisory Council (PFAC), comprised of both youth and parents, was developed to partner in the READYorNot™ BBD Project, a patient-oriented research project. The project aims to develop and evaluate the effectiveness of the MyREADY Transition™ BBD App to empower youth during their transition from pediatric to adult health care. |
| Voice, Inclusion, Participation, Empowerment, Research (VIPERS) Projectb | Disabled youth, known as Vipers, co-led and delivered the VIPER Research Project that aimed to examine the participation of disabled children and young people in decision-making at a strategic level within services across England. |
| Research into Practice: Skilled Team with Ambition, Rights and Strength (RIP:STARS) Project | The RIP:STARS Project is a disabled young people co-led research collective which undertakes research studies to inform policy and practice concerning the rights of disabled children and young people both nationally and internationally. Young people involved in this project referred to themselves as the RIP:STARS. |
aThe CFP Panel have merged in 2020 with the Ervaringskenniscentrum Jong & Perspectief and All of Me in JongPIT. JongPIT’s mission is to make it possible for all young people (15–30 years old) in the Netherlands with a chronic condition to fully participate in society.
bWhile the VIPERS Project has been completed, young partners from the VIPERS Project developed the idea and concept for the research that has been carried forward with the RIP:STARS Project.