Perspectives of school-work transitions among youth with spina bifida, their parents and health care providers

Abstract

Purpose Youth with disabilities encounter many challenges in finding employment and transitioning to post-secondary education. In this article, we explore the nature of school-work transitions for youth with spina bifida, which few studies have previously addressed. Method We conducted in-depth interviews with 44 participants (nine youth and 12 young adults with spina bifida, 11 parents and 12 clinicians). We analyzed our data using a qualitative content analysis approach. Results We identified several enablers to school-work transitions, including professional support, social support and school accommodations. Lacking such support created several challenges for youth with spina bifida. We also identified several barriers to school-work transitions, including lack of education and information on finances, housing and transportation; discrimination and stigma; and challenges coping with spina bifida at school and work. Conclusions Although some supports are available, youth with spina bifida encounter many challenges in transitioning to post-secondary education and employment. With clinicians at the helm, efforts should be put in place within the health and social services system to better prepare youth, as they transition to adulthood, to become connected to appropriate information and resources to help them to succeed in their school and employment goals.

Implications for Rehabilitation

• Youth with spina bifida encounter many challenges in transitioning to post-secondary education or work. Clinicians, educators and parents should continue to support youth with spina bifida in choosing their vocations, setting career goals and developing career plans.

• Starting from a young age, parents, clinicians and educators should help youth with spina bifida prepare for school work transitions by fostering their independence, life skills and self-management of spina bifida-related symptoms.

• Clinicians and educators should help connect youth with spina bifida to appropriate information and resources to support their school-work transitions, including information on finances, housing, transportation, school accommodations and employment supports.

Keywords:

• Hydrocephalus
• myelomeningocele
• post-secondary
• qualitative
• support
• vocational rehabilitation

Acknowledgements

We would like to thank the participants who took part in this study and also the research assistance from Heather Cruickshank and Melissa Fellin and the volunteers within the TRAIL lab.

Disclosure statement

The Toronto Central Local Health Integration Network provided part of the funding for this research. The first author is supported through a career award from the Ontario Ministry of Research and Innovation.