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Research Article| Volume 29, ISSUE 2, P158-167, March 2014

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Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role

  • Jerlym S. Porter, PhD, MPH
    Jerlym S. Porter
    Correspondence
    Corresponding author: Jerlym S. Porter, PhD, MPH.
    Contact
    Affiliations
    St. Jude Children's Research Hospital, Memphis, TN
    Search for articles by this author
  • J. Carolyn Graff, PhD, RN
    J. Carolyn Graff
      Affiliations
      University of Tennessee Health Science Center, Memphis, TN
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    • Alana D. Lopez, PhD
      Alana D. Lopez
        Affiliations
        St. Jude Children's Research Hospital, Memphis, TN
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      • Jane S. Hankins, MD, MS
        Jane S. Hankins
          Affiliations
          St. Jude Children's Research Hospital, Memphis, TN
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        Published:November 04, 2013DOI:https://doi.org/10.1016/j.pedn.2013.10.002
        Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role
        Previous ArticleVariation in Antibiotic Susceptibility of Uropathogens by Age Among Ambulatory Pediatric Patients
        Next ArticleAdvancing Adolescent Maternal Development: A Grounded Theory
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            Transition from pediatric to adult care poses challenges for adolescents with sickle cell disease (SCD). This study explored the transition perspectives of adolescents with SCD, their siblings, and caregivers. Focus groups were conducted with 12 African American families. Adolescents, siblings, and caregivers demonstrated awareness of transition and need for disease management responsibility. Siblings' and caregivers' concerns included adolescent medication adherence. Family concerns included leaving the pediatric environment and adult providers' lack of knowledge. Families recommended more transition preparation opportunities. Family members' perspectives are valuable in informing transition planning. Family-focused interventions designed to prepare and support families during transition are necessary.

            Key words

            • Sickle cell disease
            • Transition to adult care
            • Qualitative methods
            • Family perspective
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            Publication history

            Published online: November 04, 2013

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            DOI: https://doi.org/10.1016/j.pedn.2013.10.002

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            © 2014 Elsevier Inc. Published by Elsevier Inc. All rights reserved.

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