Perspectives of young people with neuromotor disabilities on shared digital portals in paediatric rehabilitation: A descriptive–interpretive qualitative study

AIM: To explore how adolescents and young adults with neuromotor disabilities perceive shared digital health portals as tools to support self-management of their rehabilitation and integrated care. METHOD: We conducted a descriptive-interpretive qualitative study using semi-structured interviews with 24 participants aged 11 to 23 years undergoing rehabilitation. Participants were recruited nationally through patient and family associations and rehabilitation networks, using purposive maximum variation sampling. An interdisciplinary team analysed the data using a hybrid inductive-deductive thematic approach grounded in self-determination theory. RESULTS: Participants viewed portals as enablers of integrated rehabilitation, aligning interventions across health care, home, and school according to individual needs. Features supporting competence, such as progress tracking and tailored resources, were valued for balancing rehabilitation with daily life. To foster autonomy, participants emphasized involvement in rehabilitation decisions, personalized feedback, control over information sharing, and inclusive features. Portals were also seen as a means to strengthen professionals' understanding and enhance connections with families and peers. Priorities included accessibility, adaptable designs, and customizable privacy settings. Concerns involved guilt-inducing feedback, excessive monitoring, and reduced in-person interactions. INTERPRETATION: Young people with disabilities see shared portals as valuable for supporting self-determination and integrated care. Co-designing flexible, inclusive, and trustworthy tools with young people may strengthen coordinated, empowering rehabilitation experiences.