All ETDs from UAB

Advisory Committee Chair

Marie Bakitas

Advisory Committee Members

Johnson Haynes, Jr

Sigrid Ladores

Wendy Landier

Dheeraj Raju

Document Type

Dissertation

Date of Award

2018

Degree Name by School

Doctor of Philosophy (PhD) School of Nursing

Abstract

A MIXED METHODS STUDY EVALUATING A PEDIATRIC TO ADULT CARE TRANSITION PROGRAM FOR SICKLE CELL DISEASE ARDIE VANESSA PACK-MABIEN SCHOOL OF NURSING ABSTRACT Sickle cell disease is a potentially life-threatening hereditary hematological disorder. Transition from pediatric to adult care is a challenging process for many adolescents and young adults with sickle cell disease. These challenges involve the adolescent, young adult, family caregiver, health care provider, and health care system. To address the challenges, a limited number of sickle cell centers have developed transition programs to facilitate the transition process. However, research on transition programs is sparse. To address this gap, a mixed methods study was conducted to evaluate transition program participation on successful transition in a purposeful convenience sample of adolescents and young adults at the University of South Alabama. Data was collected using questionnaires, survey instruments, focus groups, telephone interviews, and chart reviews and analyzed quantitatively, using descriptive and inferential statistical analytical methods, and qualitatively, using thematic and content analysis followed by data integration at the interpretative level. The quantitative results demonstrated a statistically significant moderate to strong relationship between the TRXANSITION Scale score and length of time spent in a transition program (r = .53, n = 35, p < .01) and transfer to adult care within 60 days post-termination of pediatric care for the AYA 19 years of age (r = .44, n = 10, p < .01). The qualitative results yielded one over-arching theme, participation in a transition program facilitates preparedness for the transfer to adult care supported by four sub-themes: 1) clarifying the process and providing support; 2) promoting knowledge of sickle cell disease, self-management, and financial obligations; 3) encouraging independence and taking responsibility for one’s own care; and 4) lessening emotional concerns and anxieties. The results from data integration were congruent, informative, and descriptive; participants also provided suggestions regarding what could improve preparedness for the transfer to adult care. The suggestions included peer mentoring, support groups, life lesson workshops, and hospital tours. The application of these findings to the transition program at the University of South Alabama have the potential for the refinement of the current program for a more effective process and improved transition experience. Findings could be utilized to generate hypotheses for future research. Key words: Sickle Cell Disease, Successful Transition, Adolescents and Young Adults, Transition Programs, Transfer to Adult Care, Mixed Methods

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