Research Paper
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

This abstract was presented at the Bloorview Research Institute Research Day, Nov. 2015.
https://doi.org/10.1016/j.dhjo.2016.05.009Get rights and content

Abstract

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.

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

References (20)

  • J. Binks et al.

    What do we really know about the transition to adult-centred health care? A focus on cerebral palsy and spina bifida

    Arch Phys Med Rehabil

    (2007)
  • S. Parker et al.

    Updated national birth prevalence estimates for selected birth defects in the United States, 2004-2006

    Birth Defects Res Clin Mol Teratol

    (2010)
  • L. Kelly et al.

    Adolescent development and family functioning in youth with spina bifida

    J Pediatr Rehabil Med

    (2008)
  • B. Kalyanaram et al.

    Transition of care and treatment of the adult spina bifida patient

    Current Bladder Dysfunct Rep

    (2014)
  • G. Liptak et al.

    Youth with spina bifida and transitions: health and social participation in a nationally represented sample

    J Pediatr

    (2010)
  • R. Bowman et al.

    Spina bifida outcome: a 25-year prospective

    Pediatr Neurosurg

    (2011)
  • S. Kingsnorth et al.

    Implementation of the LIFEspan Model of transition care across pediatric and adult rehabilitation providers

    Int J Child Adolesc Health

    (2011)
  • I. Tsybina et al.

    Longitudinal evaluation of transition services: outcome evaluation protocol

    BMC Pediatr

    (2012)
  • A. Cox et al.

    Transition of care to an adult spina bifida clinic: patient perspectives and medical outcomes

    J Urol

    (2011)
  • K. Steinbeck et al.

    Transitioning chronic illness: who is going where?

    J Paediatr Child Health

    (2008)
There are more references available in the full text version of this article.

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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.

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