The world is turned upside down: How parents of children with spina bifida experience transition. A qualitative study

Abstract

The world is turned upside down: How parents of children with spina bifida experience transition. A qualitative study Abstract: Background: The coming of age of a child with spina bifida (SB) requires the transition from child-centred to adult-centred health care. This transition process (TP) calls for adjustments to the parental role, while health professionals assume a central position in accompanying the families. It is unclear how parents experience the TP in times of complex change and what support needs arise in the process. Aim: To understand the experiences of parents at different stages of the TP and derive the resulting support needs. Method: The qualitative study used semi-structured, guided interviews to explore the experiences of parents with a child with spina bifida before and during the transition process as well as after the transfer. The ten interviews were analysed using open and axial coding based on grounded theory according to Strauss & Corbin (1996). Results: The TP must be considered in the context of health as well as school and family. Parents experience the TP on a continuum of reorientation. This is accompanied by ambivalent feelings caused by the conflicting impulses of giving up responsibility and protecting their child. Conclusions: Health professionals should recognize the extent of change associated with the TP as well as parents' ambivalent feelings and support them accordingly. Continuous support, coordination and information by advanced professionals are important for parents' sense of security.