Analyse des logiques d’action de familles autour de la transition aux soins adultes de leur enfant atteint d’une condition chronique complexe grave

Abstract

As modern medicine has advanced, a new phenomenon has begun to emerge: the survival beyond adolescence of children with complex, life-threatening chronic conditions. The broad objective of this study, whose results are reported here, is to better recognize and understand how these children and their families experience the transition from pediatric to adult care. Data were collected by way of semi-directed interviews with 10 parents and one youth from eight families in Québec. The analysis, based on certain concepts of the sociology of social experience (Dubet, 1994), underscores the fact that parents and youth experience significant losses – both tangible and symbolic – in the transition process, and that these losses threaten their identity and sense of belonging. Searching for suitable new services, programs, or environments is experienced as a struggle against numerous obstacles that forces them to resort to various strategies. For some, the solidarity experienced through projects designed to improve the living conditions of families in these situations helped them overcome a sense of alienation.

Keywords

• youth
• complex chronic condition
• adult care
• sociology of experience
• logic of action