The Transitioning From Pediatric to Adult Inflammatory Bowel Disease Services: A Qualitative Study of Adolescents and Their Parents

Abstract

Background: Inflammatory bowel disease (IBD) often has its onset during late childhood and adolescence, a time of significant change. Young people may be required to transition from a pediatric to an adult IBD service during this time. The transition from pediatric to adult services can be a high-risk period for poor outcomes for emerg-ing adults with IBD. We seek to understand the concerns of patients and carers during this period. Methods: Semi-structured interview and interpretative phenomenological analysis were used to explore the experiences of 16 young persons and 10 of their parents during transition. Results: The narrative analysis reflected the importance of three as-pects of transition to the young people and their parents during transi-tion. The process of adjusting to illness, parents letting go, and the young person “growing up” were key themes. Conclusion: In addition to patient needs, parental grief and adjust-ment may be easily overlooked in the transition period: children who only recently needed intensive parental care and involvement may now be seeking higher degrees of autonomy. These findings indicate a role for including psychological interventions addressing the well-being of parents in transition programs.