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

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...

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Published inJournal of pediatric nursing Vol. 29; no. 2; pp. 158 - 167
Main Authors Porter, Jerlym S., Graff, J. Carolyn, Lopez, Alana D., Hankins, Jane S.
Format Journal Article
LanguageEnglish
Published United States Elsevier Inc 01.03.2014
W.B. Saunders Company/JNL
Subjects
Adolescent
Adolescents
Adult
Adults
African Americans
Anemia, Sickle Cell - nursing
Anemia, Sickle Cell - therapy
Caregivers
Carers
Child
Disease management
Families & family life
Family Health
Family perspective
Female
Focus Groups
Humans
Male
Middle Aged
Nursing
Paediatrics
Pediatric Nursing
Pediatrics
Qualitative methods
Qualitative research
Siblings
Sickle cell anaemia
Sickle cell disease
Transition to adult care
Transition to Adult Care - organization & administration
Transitions
Young Adult
United States > US
Transition to adult care
Qualitative methods
Family perspective
Sickle cell disease
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Summary: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.
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ISSN:0882-5963
1532-8449
DOI:10.1016/j.pedn.2013.10.002