Exploring the experiences of young people with Spina Bifida, with their parents, about the education they have received on self-management

Abstract

Background: Spina Bifida (SB) is a congenital neural tube defect characterized by the incomplete closure of the spinal column during embryonic development. Due to developments in paediatric medical care since the 1970s, approximately 85% of individuals with SB live into adulthood. As a result, education provided to adolescents for transition became important the aim of this service evaluation is to explore and assess the education provided to adolescents with SB to help them prepare for self-management of their conditions as well to provide recommendations for improving the future delivery of services. Methods: Five semi-structured interviews were conducted with adolescents along with their parents accessing Spina Bifida Services at the Great Ormond Street Hospital (GOSH) NHS Foundation Trust during the months of June and July 2024. These interviews were then analysed using framework analysis to identify common themes of self-management experiences. Results: Four primary framework themes emerged from the analysis: Self-reported medical problems, experiences of self-management education, factors influencing implementation of self-management, and service evaluation. Conclusion: This service evaluation found that fear and lack of confidence in adolescents’ readiness for self-management were the main barriers identified in the transition process. Early and individualised transition education would be helpful to reassure adolescents and their caregivers. Framework themes developed in this service evaluation could be utilized for the development of an evaluation questionnaire for the transition service provided. Future research could include participants from more varied ethnicities to broaden the results in the data and its implications.