Délicates transitions

Abstract

Nous avons mené une étude qualitative par entretiens individuels et collectifs (focus groups) auprès de jeunes (de 16 à 25 ans) touchés par une anomalie chromosomique (trisomie 21, microdélétion 22q11.2 associée au syndrome vélo-cardio-facial, ou microdélétion 7q11.23 associée au syndrome de Williams-Beuren) et de leurs familles, afin de comprendre les obstacles à la participation sociale qu’ils rencontrent lors du passage à l’âge adulte. Confrontés à de nombreuses contraintes pour développer des liens sociaux diversifiés et pour trouver une place sociale, professionnelle ou non, après la scolarité, ces jeunes semblent attribuer la plus grande importance à une dynamique relationnelle positive en dehors de l’espace familial, dont ils continuent toutefois de souhaiter la protection. A qualitative study was performed in the South of France among young people (16-25 years) affected by chromosomal anomalies: Down, velo-cardio-facial, or Williams-Beuren syndromes. We conducted interviews with them and with their parents to understand the obstacles to social participation that they most frequently face when becoming adults. Once their education comes to an end, young adults with developmental anomalies face several difficulties to develop and keep diversified social ties and to find their place in society, be it with a stable job – either in the ordinary working environment or in sheltered employment – or by attending occupational workshops. While parents are mostly concerned with finding a professional place for their children, the latter seem to especially value opportunities for satisfactory relational dynamics outside of the protective frame of the family. Nevertheless, a wish for familial protection keeps coexisting with their wish for independence.