This study took place from November 2017 to December 2018. Via telephone interviews and their responses to questionnaires, 10 parents were interviewed, the majority of respondents being mothers (9 and 1 father). These parents each had a child with Duchenne muscular dystrophy (diagnosed 10 years before the study, at an average age of 4.5 years). All the siblings consisted of 19 other unaffected children, aged 8 to 17 years at the time of diagnosis or entry into the study.
These interviews focused on assessing the diagnostic experience for parents, the preparation and process for disclosing the disease announcement to siblings, and the emotional aspects underlying this announcement.
The analysis of the comments collected from the families revealed several aspects related to the announcement of the disease to the siblings:
- the difficulty in obtaining information useful for preparing this announcement, from the health professionals making the diagnosis; this gap forces parents to look for information by themselves on the Internet or from other sources such as patient associations;
- the importance of peer support to discuss how to reveal the announcement: this help comes from patient associations which both provide the space to discuss this issue (Facebook groups for example or face to face) and informational materials that help to better understand the disease and its stages;
- a gradual process of announcing to siblings, most often starting soon after the diagnosis is announced to parents, but sometimes later. Information is given little by little, during open discussions;
- a gradual assimilation by the siblings of the information from the announcement, but sometimes also the breaking of the reality of the disease of which they had not perceived the seriousness which updates the announcement, for example during stages such as the loss of walking ability ;
- a desire to maintain open discussions with siblings on the issue of the disease, even if the announcement process is complicated by the emotional intensity of the context.