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.
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.
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
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
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.