Children and young people’s experiences of participation in pediatric rehabilitation: a qualitative study

Introduction: Creating a healthcare system of justice requires a child-centered care where children and young people, regardless of disability, are allowed to participate in their own rehabilitation. The aim of this study was to explore children and young people’s experiences of participation in pediatric rehabilitation. Patients and methods: The study had a descriptive design with a qualitative content analysis approach. Interviews were conducted with 20 children (6-17 years old, 9 girls and 11 boys) and 8 young people (18-30 years old, 6 women and 2 men) with intellectual disabilities, physical disabilities or autism spectrum disorders. Results: Three categories emerged that reflected children and young people’s experiences of participation in pediatric rehabilitation: to be included; to be empowered; and to feel supported. To be included meant that children and young people are respected, listened to and involved in shared decision-making. To be empowered comprised autonomy, responsibility and understanding as essential aspects for participation. To feel supported meant that children and young people described their parents as facilitators for enabling participation by supporting communication and being a bridge between child and professionals. Conclusion: To increase participation, children need support in communication with the healthcare professionals in a way that they feel respected, empowered and able to be included in decisions concerning their own pediatric rehabilitation. This result constitutes an important step in the development of a forthcoming digital communication and decision tool, with the main objective to increase participation, for children with disabilities.