Dispositif pluridisciplinaire d'accompagnement des enfants et de leur famille depuis l'annonce diagnostique d'une forme sévère d'hémophilie

The diagnosis announcement of a severe hereditary bleeding disorder in a child has a traumatic impact on the psychological functioning of his parents. The familial organization will change and it set up the beginning of a long-term relationship between the family and the caregivers. Over the past few years, an innovative therapeutic support has been implemented at the Haemophilia Treatment Centre (HTC) in Marseille to guide parents and children in the management of the disease. This program is based on a multidisciplinary device: medical and paediatric nurse support, psychological support, therapeutic education program, talking group, workshops on psychomotor development. The French Haemophilia Society is part of this support especially on the therapeutic education program. Twenty-one children have participated to a pilot study based on developmental and psychological issues, as well as parents and children's quality of life assessment, to evaluate the relevance of the support. The encouraging results on psychomotor development and psychological functioning of the children, quality of life of the children and their parents tend to recommend the extension of this kind of diagnosis announcement support including the psychologist at a key place in a comprehensive care centre for haemophilia.