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 emerging 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 aspects of transition to the young people and their parents during transition. 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 adjustment 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.