The Experience of Transition to Adulthood for Youth with a Neurological Condition

Abstract

(41st Biennial Convention) Background. The lifespan of young adults with neurological conditions such as spina bifida (SB) has increased as a result of effective health management in developed countries. As young adults with SB live longer, their healthcare needs evolve and are dependent upon successful transition experiences. The purpose of this study was to examine the transition to adulthood in young adults with SB and identify opportunities for interventions to improve health outcomes. Methods. This qualitative study using narrative inquiry was part of a larger multi-site study. Interviews were completed on 10 participants with SB ranging in age from 18-25 years. The guided interview questions focused on specific dimensions of the transition experience: (1) self-management and (2) independence. Results. Four themes capturing different dimensions of the particiants' experiences emerged in the analysis. The themes included: 1) Struggling for independence, 2) Limited social interactions and stigma, 3) Building inner strength, and 4) Tailoring care. Conclusion. The study contributes to a better understanding of the challenges of transition to achieve self-management and social development for young adults with SB. Findings in the life stories highlighted issues that necessitate increased advocacy and interventions from professionals within the health and social system. Even though the incidence of SB in the USA is the highest in the Hispanic population, we know little about these youths' experience. Need for research and opportunities to tailor care to this popuation will be described.