Transition in young adults with spina bifida: a qualitative study

BACKGROUND: Adolescents and young adults with spina bifida are an at-risk population because of the complexity of their condition, developmental stage and social challenges. The purpose of this qualitative study was to examine the transition to adulthood in young adults with spina bifida and to explore condition-related needs and life skills required during the transition process. METHODS: This qualitative study using narrative inquiry was part of a larger multi-site study of adaptation in young adults with spina bifida. Interviews were completed with 10 participants ranging in age from 18 to 25 years. The guided interview questions focused on specific dimensions of the transition experience related to the ecological model: self-management, independence and inner strength. RESULTS: Three themes capturing different dimensions of the young adults' transition experiences emerged in the analysis. The themes included: (1) Struggling for independence, (2) Limiting social interactions and experiences with stigma, and (3) Building inner strength. CONCLUSION: The qualitative study contributes to a better understanding of the challenges of transition to achieve self-management and social development for young adults with spina bifida. Findings in the life stories highlighted issues that necessitate increased advocacy and interventions from professionals within the health and social system.