Living with Crouzon syndrome: transition from childhood to adulthood

Abstract

Objective. The aim of this qualitative investigation is to study the subjective experiences of transition from childhood to adulthood in individuals with Crouzon syndrome. Material and methods. Telephone interviews were carried out with eight informants and data were analysed according to grounded theory. Results. A core category emerged labelled facing barriers when developing self-image, which illuminates the different barriers the child had to face when trying to develop a self-image during the transition from childhood to adulthood. Facing barriers should not be confused with the actual barriered development. These barriers are further illuminated in five descriptive categories. Conclusions. These children face a variety of stressful barriers when developing their self-image during the transition from childhood to adulthood. The produced psychological outcome seems to be related to a complex interaction among multiple variables, including variables related to the individual with Crouzon syndrome, treatment variables, parent and family variables and social variables. © 2012 Copyright Nordic Network on Disability Research.