Understanding barriers to transition from pediatric to adult care among young adults with sickle cell disease to develop a transition mentor program.

Adrienne S. Viola, Kristine Levonyan-Radloff, Richard Drachtman, Jerlym Porter, Beth Savage, Amanda Kaveney, Ashwin Sridharan, Cristine Delnevo, Elliot Coups, Katie A. Devine

Research output: Contribution to journalArticlepeer-review

Abstract

Objective: Patients with sickle cell disease require lifelong comprehensive care, necessitating patient compliance with primary care appointments, specialty clinical visits, medications, transfusions, and regular health maintenance. As patients transition from pediatric care to adult care, they are at risk for lapses in care that can result in serious complications, making the period of transition a medically vulnerable time. The goal of this study was to use formative interviews to identify targets for a mentoring intervention to improve transition outcomes. Methods: Ten young adults preparing to transition and 10 young adults within 10 years of their transition (ages 18–30 years) completed a semistructured interview. Interviews were analyzed using template thematic analysis, with the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) framework as the a priori thematic framework. Results: Themes were consistent with the SMART framework components. Young adults identified self-advocacy, provider communication, and disease knowledge as important targets for intervention. Participants were receptive to having a medical student as a mentor and also viewed it as an opportunity to educate health professionals. Conclusions: The SMART framework and patient interviews were useful in designing a transition mentor program to meet the needs of patients with sickle cell disease. Future research will evaluate the feasibility of this program. (PsycInfo Database Record (c) 2021 APA, all rights reserved) This study describes the development of a transition mentor program for young adults with sickle cell disease informed by a formative needs assessment and the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework. These methods are generalizable to future transition intervention development in pediatric psychology. (PsycInfo Database Record (c) 2021 APA, all rights reserved)

Original languageEnglish (US)
Pages (from-to)68-81
Number of pages14
JournalClinical Practice in Pediatric Psychology
Volume9
Issue number1
DOIs
StatePublished - Mar 2021

All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health
  • Developmental and Educational Psychology
  • Clinical Psychology
  • Applied Psychology

Keywords

  • adolescent and young adult
  • needs assessment
  • qualitative methods
  • sickle cell disease
  • transition

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