Involvement of adolescents living with Duchenne muscular dystrophy in their own health and care.

This report is based on a socio-anthropological study with children and adolescents aged 6 to 15 years old living with Duchenne muscular dystrophy. Conducted in France between 2019 and 2020, this ethnographic research was based on observations of multidisciplinary hospital consultations and a series of interviews with young patients, their parents and healthcare professionals. Our study examined the negotiation of care between children and adults during social interactions in clinical consultations. The research findings show how young patients oppose and resist acts of care and help shape the ways in which healthcare professionals act towards their bodies. Despite the asymmetry of age and health relationships with adults, children and adolescents demonstrate capabilities in the management of their health, well-being and bodies, and in their participation in the decision-making process.