Transitioning of young people (with longterm illnesses) from child to adult healthcare services,

Abstract

Purpose: To obtain a comprehensive understanding of the experiences of young people and their families transitioning from child to adult healthcare services in Ireland, and to identify factors associated with smooth and successful transitions. Methods: Semi - structured interviews were cond ucted with young people aged 14 - 25 years with one of three conditions (type 1 diabetes, cystic fibrosis, or congenital heart disease) (n=50), their parents (n=37), and healthcare professionals (n=34). Ethical approval was granted by ethics committees at Tr inity College Dublin and the hospital sites. The data were analysed using thematic analysis and managed with Nvivo(version 10). Results: Transition was experienced on a continuum from smooth to traumatic. Adjusting to environmental and cultural difference s in adult healthcare services was overwhelming for some young people and their families, while others welcomed the young person’s enhanced responsibility and autonomy. The negotiation of healthcare management roles between young people, parents, and new h ealthcare professionals was a complex and dynamic process. Inadequate communication prior to transition and discordant familial relationships impacted negatively on the transition experience. Smooth transitions were experienced where young people had devel oped adequate self - care and self - efficacy skills; families had positive attitudes, emotions, and beliefs regarding transition; there was effective information - sharing and communication; and where staff were sensitive to the patient journey and the shared i llness ownership felt by young people and their families. Conclusions: The transition from child to adult healthcare services is a complex, dynamic process strongly influenced by information - sharing practices and shared decision - making. Facilitators of s mooth transitions should be incorporated into healthcare practices and policies.