Thanks to the continuous advances in medicine, healthcare services have been drastically improved for children with Spina Bifida in many countries. However, once these children become young adults, the access to a comprehensive healthcare service becomes very fragmented and they no longer have the “one-stop-shopping” alternative for a multidisciplinary care. Besides, the transition from childhood into young adulthood is a delicate period for most teens but for teens with Spina Bifida, the challenge can be even greater as they evolve from:
- Children to adults with specific needs
- Pediatric care to adult health care
- School environment to work sphere
- Family life to independent life
- Home to community living
The International Federation for Spina Bifida and Hydrocephalus advocates for a comprehensive healthcare system throughout the lifespan of people with Spina Bifida. Moreover, IF suggests that adolescents with Spina Bifida and their families should prepare for the transition very early in the childhood phase, although this may vary depending on the child’s cognitive and physical capacities and their family supports. The transition itself should be steady and flexible. The child’s multidisciplinary care team may aid in the process by preparing comprehensive, up-to-date documents detailing the required medical care, including information about medications, surgery, therapies, and recommendations. Families and parents have a big role in insuring a good transition process. A bigger dependence on others (mainly parents) may hinder the adolescent's self-management of health-related activities, such as catheterization, bowel management, and taking medications. As part of the transition process, it is crucial to let the child/adolescent to manage his daily tasks by his/her own. It is also beneficial to begin discussions at an early age about educational and vocational goals, independent living, and community involvement.
In September 2011, IF organised a workshop on access to multidisciplinary care for adults with Spina Bifida. You can access the presentations in this page.