The aims of this collaborative, interdisciplinary research project are to understand and describe the psychological impact of the announcement of a rare, serious disease present since birth and detected in the context of the systematic neonatal screening (DNS), in terms of the parents' experience, but also on the part of the medical team, in order to improve its process and the support it provides for the announcement of the diagnosis.
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Psychological process linked to the announcement of inherited metabolic disease for the parents
Timeframe: 4 and a half months
Psychological impact of the announcement of an inherited metabolic disease on the doctors' experience
Timeframe: 2 hours
Measuring awareness of inherited metabolic diseases detected by midwives
Timeframe: 1 hour