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

Jerlym S. Porter, Joyce Graff, Alana D. Lopez, Jane S. Hankins

Research output: Contribution to journalArticle

16 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)158-167
Number of pages10
JournalJournal of Pediatric Nursing
Volume29
Issue number2
DOIs
StatePublished - Mar 1 2014

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Transition to Adult Care
Sickle Cell Anemia
Caregivers
Siblings
Medication Adherence
Disease Management
Focus Groups
African Americans
Pediatrics

All Science Journal Classification (ASJC) codes

  • Pediatrics

Cite this

Transition From Pediatric to Adult Care in Sickle Cell Disease : Perspectives on the Family Role. / Porter, Jerlym S.; Graff, Joyce; Lopez, Alana D.; Hankins, Jane S.

In: Journal of Pediatric Nursing, Vol. 29, No. 2, 01.03.2014, p. 158-167.

Research output: Contribution to journalArticle

Porter, Jerlym S. ; Graff, Joyce ; Lopez, Alana D. ; Hankins, Jane S. / Transition From Pediatric to Adult Care in Sickle Cell Disease : Perspectives on the Family Role. In: Journal of Pediatric Nursing. 2014 ; Vol. 29, No. 2. pp. 158-167.
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