Research PaperYouth and parents' experiences of a new inter-agency transition model for spina bifida compared to youth who did not take part in the model
Section snippets
Study design
Using a descriptive qualitative design,14 we conducted in-depth semi-structured interviews with 32 participants over the phone or in person. Our objectives were to: (1) understand youth and parents' experiences of participating in the new transition model; and (2) understand the transition experience of young adults with spina bifida who have not taken part in the model. We conducted the study in an urban area in Ontario, Canada, where children typically transfer from pediatric to adult health
Results
Youth and parents reported experiencing structural, relational, and personal enablers and barriers to transition under the new spina bifida transition model. We discuss and compare their experiences to those of young adults with spina bifida who did not take part in the model. Representative quotes of enablers and barriers are illustrated in Table 1, Table 2. For the sake of clarity, we have presented the barriers and enablers separately; however, in reality they inherently overlap. For
Discussion
Our findings show that a new transition model for youth with spina bifida is beginning to address some of the barriers commonly associated with transfer to adult health care among youth with disabilities.6, 8 Youth and parents who were participating in the new model reported receiving more co-ordinated care to address the health and transfer needs of youth with spina bifida, compared to young adults who had transitioned from the pediatric clinic to adult health care before the new model was
Conclusions
Youth and parents who participated in the new transition model felt supported by health care providers at the pediatric rehabilitation hospital. They noted the benefits of gradually transferring responsibility for managing health care from parents to youth. They also suggested the new model would help them move to adult health care more easily. However, some gaps exist in the new model, and further development is needed—especially to link health service providers to youth who live outside of
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Disclosure: The authors report no conflicts of interest.
The Toronto Local Health Integration Network provided the funding for the evaluation of this program.