Use of a book to disclose a diagnosis of Duchenne muscular dystrophy to a young child: A pilot study

Abstract

Disclosing the diagnosis of Duchenne muscular dystrophy, a progressive genetic disease, to children requires taking the time to talk with them and to identify the emotions that they experience on a daily basis. At the Reference Center for Neuromuscular Diseases of Children in Marseille, to accompany the disclosure of the diagnosis to the child, we have created a book to facilitate communication and dialog in the parent–child relationship.A single-center and prospective study was conducted of nine children and nine families to evaluate the usefulness of this tool. The results show that the book was appreciated by families and mainly recommended by children and their parents. Children's understanding of the disease improved, especially for the 6–8-year-old age group. The children's mental state was better at school after using the tool. The book offered them support to express their mood. As an accompaniment, this mediator tool helps parents and children alike. Caregivers use it as a support for the children to have a place to share their thoughts and emotions, from the very beginning of the follow-up. It helps build the child–parent–caregiver triad.