Living with Duchenne Muscular Dystrophy: Relational Autonomy and Decision‐Making

Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring their thoughts on making a decision to participate in medical research. This article focuses on one of the key findings, discussing how the participants identified their parents as carers, spokespersons and advisors. The term ‘relational autonomy’ encapsulates these co‐operative relationships, illustrating how they can help young people living with a degenerative disability to exercise some agency and autonomy. The boys and their families have demonstrated how disabled children who are physically dependent can be supported by their parents, without compromising independence.