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Transitioning Adolescents and Young Adults with Spina Bifida to Adult Healthcare: Initial Findings from a Model Program

Authors

  • Kathleen J. Sawin PhD, CPNP-PC, FAAN,

    Corresponding author
    1. Self Management Science Center, College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI, USA
    2. Research Chair in the Nursing of Children, Children's Hospital of Wisconsin, Milwaukee, WI, USA
    • Correspondence

      Kathleen J. Sawin, PhD, CPNP-PC, FAAN, Professor, Center Scientist, Self Management Science Center, College of Nursing, University of Wisconsin-Milwaukee, Box 413, Cunningham Hall, Milwaukee, WI 53201-0413.

      E-mail: sawin@uwm.edu

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  • Karen Rauen MSN, RN, BCIA-C,

    1. APN Spina Bifida Research, CDC Registry Project, Children's Hospital of Wisconsin, Milwaukee, WI, USA
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  • Tera Bartelt MS, RN, PCNS-BC,

    1. Spina Bifida Program, Children's Hospital of Wisconsin, Milwaukee, WI, USA
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  • April Wilson DPT, BS,

    1. Doctors Hospital of Augusta, Augusta, GA, USA
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  • R. Corey O'Connor MD, FACS,

    1. Department of Urology, Medical College of Wisconsin, Milwaukee, WI, USA
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  • William P. Waring III MD,

    1. Department of Physical Medicine and Rehabilitation, Medical College of Wisconsin, Milwaukee, WI, USA
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  • Merle Orr MD

    1. Department of Physical Medicine and Rehabilitation, Medical College of Wisconsin, Milwaukee, WI, USA
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Abstract

Purpose

The Spina Bifida Transition Project (SBTP) was developed by partners from pediatric and adult health care settings using existing best practice information in an effort to transition adolescents to adult health care providers. The purpose of this manuscript is to present the results of an initial evaluation of the SBTP from the adolescent/young adult (AYA) and family perspective.

Design and Methods

Qualitative evaluation data were obtained from telephone interviews with 40 individuals (24 AYA and 16 parents representing 28 families) two-three weeks after initial adult clinic visits using a semi-structured interview guide.

Findings

Interview analysis yielded six overall themes: Positive experience, Developing Trust, Unexpected Benefits, Communication, Potential Worries, and Suggestions for Improvement. The study supported both the effectiveness of the SBTP as well as patient desire for earlier initiation of transition activities

Conclusion and Clinical Relevance

SBTP is well-received by participants and their parents and may be useful model for other chronic health conditions.

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