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Abstract

The literature identifies several issues in the pediatric transition, such as the lack of coordination between pediatric and adult settings and young patients who are not exercising independence in the self-management of their disease. The objective of this study is to explore the potential for a pediatric transition program in gastroenterology, introducing an accompanying patient program to support the transition. A qualitative case study was conducted, including semi-structured focus groups and individual interviews with each group involved in the pediatric transition between two centres in Quebec. A thematic analysis of the collected data was performed using QDA Miner v5.1. In addition to the barriers documented in the literature, such as patients’ poor knowledge of their disease, developmental immaturity and low level of independence, our analysis found that adolescents appear to be quite indifferent to their disease and to the transition. Once they are in an adult health centre, they develop an awareness of the disease’s impact on their lives and would appreciate having support from a peer. In contrast, parents experience considerable anxiety before this transition, and would like to be in contact with other parents. Professionals, for their part, are open to the idea of establishing a peer support program to fill certain gaps in how transfers are organized. One way to improve the transition, as suggested by our respondents, is to set up a peer support program that should evolve over time, being initially implemented for the parents and then for the young adults.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)

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