Youth and Parents' Experiences of a New Inter-agency Transition Model for Spina Bifida Compared to Youth Who Did Not Take Part in the Model

Background: Young adults with spina bifida are underserved in health care and are at risk as they transition to adult health care. A pediatric rehabilitation hospital and an adult community health center partnered to help address this gap. Although some research has explored general transition experiences of youth with disabilities, little is known about their experiences in a transition model that involves an inter-agency partnership, continuous, age-appropriate, and client-centered care.

Objective: To explore youth and parent experiences of a new transition model for youth with spina bifida, compared to the experiences of young adults with spina bifida who did not participate in the model.

Methods: Using a descriptive, qualitative design involving a thematic analysis we conducted semi-structured interviews with 32 participants (9 youth, 11 parents, 12 young adults).

Results: Most youth and parents in our sample who took part in the new model felt supported by pediatric providers and benefitted from gradually transferring responsibility from parents to youth. They also reported experiencing challenges, including lack of support from primary care providers and lack of clarity about the new model. Many young adults who did not take part in the model reported receiving some transition-related thought support from pediatric specialists, parents, and in some cases, primary care providers. However, they also reported experiencing gaps in their continuity of care and needed more support with employment, relationships, finances, and housing.

Conclusions: Our findings show the new transition model for youth with spina bifida can help enhance participants' transition experiences and preparation for adulthood. However, the model needs further development to address the varied abilities and support needs of youth with spina bifida.