Journeying from Nirvana with mega-mums and broken hearts: The complex dynamics of transition from paediatric to adult settings

Abstract

Continuity of care and equity of access to appropriate adult health care is an ongoing challenge for young people with chronic health problems, the majority of whom have lived with their condition since birth or early childhood. While much has been written on transition, the contribution of the relationships among all involved in the process requires more attention. The aim of this paper is to increase understanding of the complexity underpinning the process of transition for young people with chronic illnesses/disabilities.

Method: Unstructured interviews were used to capture the experiences of individuals from the three major groups involved in transition - young people, their families and health care professionals. The methods used in analysing the data drew on critical creativity, an approach that employs creative processes in analysing qualitative material to allow for individual expression and interpretation of meaning.

Results: The six major themes identified highlighted the need for planning of transition well ahead of the event, consideration of the young person's life outside of their illness, the central role of the mother within the process, fundamental and profound differences between paediatric and adult care, the sense of paediatric care as special, and the reality of grief and loss for many involved in the transition process.

Conclusion: Innovative and creative approaches are required to both understand and work with the complex dynamics at play when young people transition to adult health services.