Confianza, vigilancia y responsabilización: cambios en el desarrollo de la autonomía en las familias que viven con un adolescente que padece de fibrosis quística

Abstract

A growing number of families with an adolescent who has cystic fibrosis can now envisage their child making the transition from adolescence to adulthood. Limited research has been conducted to date regarding the nature of the interactions between adolescents and their parents during the development of the adolescent's independence. The aim of this qualitative case study was to explore the experience of families with an adolescent who has cystic fibrosis, at the pre-transfer stage from a paediatric clinic to adult care. A systemic framework was used to get a better understanding of this phenomenon. Semi-directed interviews with seven families were conducted and a content analysis was performed. Features of the development of autonomy are characterised by three dimensions of the parental experience: (a) confidence that must be established between the adolescent and the parent, (b) adolescent's gradual increase of responsibility and (c) parent's supervision of the adolescent. This study gives new information on parental experience as regards the development of autonomy in adolescents who have cystic fibrosis. The results underline the importance of taking parental experience into consideration in order to support families in the development of the adolescent's autonomy.