Emerging adulthood for young people with Duchenne muscular dystrophy: findings from user-led research in the UK

The topic of ‘transition to adulthood’ for young disabled people including young people with Duchenne muscular dystrophy (DMD) has been extensively researched in the UK. Findings over several decades point to challenges about employment, education and independence. Very little of this research has either foregrounded the views of young people themselves or been carried out by disabled researchers with lived experience. This user-led research used qualitative methods to explore ideas about emerging adulthood and the priorities of young people with DMD. In this study, a focus on confidence, navigating uncertainty and a nuanced approach to independence emerged as key factors. The focus on the medical continues to overshadow the social and relational and the paper makes a case for resisting and challenging medicalised understandings. The paper also reflects on the process, benefits and challenges of the user-led research approach.