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The Self-Management and Transition-to-Adulthood Program at the University of North Carolina: Lessons Learned (and Still Learning)

Citation

Ferris, Marie E.; Ferris, Michael T.; Viall, Carolyn; Stewart, Heather D.; Fenton, Nicole; Haberman, Cara; Iglesia, Edward A.; Hancock, Lauren E.; Harward, Donna H.; & Gilleskie, Donna B., et al. (2012). The Self-Management and Transition-to-Adulthood Program at the University of North Carolina: Lessons Learned (and Still Learning).. Wood, David; Reiss, John G.; Ferris, Maria E.; Edwards, Linda R.; & Merrick, Joav (Eds.) (pp. 297-310). New York: Nova Science Publishers, Inc..

Abstract

The University of North Carolina’s Self-management and Transition to Adulthood with Rx=Therapies Program (UNC STARx) has gained experience in this field since 2006. This chapter describes the program’s evolution from a nephrology-centric intervention to an institution-wide, interdisciplinary program that addresses multiple conditions. We illustrate the lessons and insights informed by youth with chronic conditions/disabilities, as well as their parents, health providers, and community partners across the continuum of health care transition (HCT). Specifically, these lessons related to program sustainability, including the importance of a dedicated program coordinator; inter- and intra-institutional collaboration to validate tools that promote and assess patient self-management skills and HCT; strategies to improve youth, provider (pediatric and adult-focused) and parent communication; and the important role for peer volunteers (in person or through social media), are shared. The UNC STARx Program’s collaboration has produced IRB-approved tools that promote communication between youth with chronic conditions and providers, while outlining customized interventions based on the patient’s level of knowledge and skill mastery. Two private foundations provided initial funding for these efforts, and the program now has become an institution-wide collaborative funded primarily by the North Carolina Children’s Hospital. The UNC STARx partners include youth with chronic conditions and disabilities, families, and researchers from several disciplines and institutions in our state, across the country, and internationally. Our innovative program holds great promise and it already appears to improve health outcomes and quality of life for youth and their families (based on participation rate and user satisfaction both at >95%). Our lessons from the field may assist other institutions as they strive to improve the health outcomes of adolescents and young adults through evidence-based and cost-effective interventions.

Reference Type

Book Section

Year Published

2012

Series Title

Pediatrics, Child and Adolescent Health

Author(s)

Ferris, Marie E.
Ferris, Michael T.
Viall, Carolyn
Stewart, Heather D.
Fenton, Nicole
Haberman, Cara
Iglesia, Edward A.
Hancock, Lauren E.
Harward, Donna H.
Gilleskie, Donna B.
O’Neill, James
Imperial, Robert
Ko, Zion
Benton, Mary H.
Doan, May
Bickford, Kristi
Detwiler, Randy
Andreoni, Kenneth
Mahan, John D.
Smith, Zachary
Hooper, Stephen R.
Gibson, Keisha L.