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

Sawin, Kathleen J. PhD, CPNP-PC, FAAN1,2; Rauen, Karen MSN, RN, BCIA-C3; Bartelt, Tera MS, RN, PCNS-BC4; Wilson, April DPT, BS5; O'Connor, Corey R. MD, FACS6; Waring, William P. III MD7; Orr, Merle MD7

doi: 10.1002/rnj.140
FEATURE
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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.

1Self Management Science Center, College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI, USA

2Research Chair in the Nursing of Children, Children's Hospital of Wisconsin, Milwaukee, WI, USA

3APN Spina Bifida Research, CDC Registry Project, Children's Hospital of Wisconsin, Milwaukee, WI, USA

4Spina Bifida Program, Children's Hospital of Wisconsin, Milwaukee, WI, USA

5Doctors Hospital of Augusta, Augusta, GA, USA

6Department of Urology, Medical College of Wisconsin, Milwaukee, WI, USA

7Department of Physical Medicine and Rehabilitation, Medical College of Wisconsin, Milwaukee, WI, USA

Accepted 11 November 2013

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

© 2015 Association of Rehabilitation Nurses.
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