Young people with childhood-onset motor disabilities face unique challenges in understanding and managing their condition. This study explored how they learnt about their condition.
A descriptive qualitative study was conducted in 2023-2024 at a Swiss paediatric neurorehabilitation unit. Ten participants aged 15-24 years were recruited through purposive sampling, representing diverse conditions and socio-educational backgrounds. Inductive thematic analysis was conducted on interview transcripts.
Four themes emerged. First, learning paths revealed that participants gradually acquired knowledge about their condition. Early explanations often involved parents and visual aids, with moments of awareness and evolving information needs shaping their learning over time. Second, building blocks of understanding showed that knowledge was constructed through interactions with physicians, therapists, parents, peers and the Internet. Third, interacting with healthcare professionals highlighted the importance of trust and continuity in relationships with healthcare professionals to support learning. Last, improving the learning process suggested strategies such as dedicated consultations for recapping information during adolescence and increasing disability awareness in schools.
Young people with motor disabilities require information and support tailored to their individual learning needs. Adapting these resources could enhance their understanding of their condition, supporting the development of their autonomy and self-advocacy within healthcare.