title: Transition from pediatric to adult care in sickle cell disease: perspectives on the family role.
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.
authors.affiliation: St. Jude Children's Research Hospital, Memphis, TN. Electronic address: jerlym.porter@stjude.org.
authors.forename: Jerlym S
authors.initials: JS
authors.lastname: Porter
authors.affiliation: University of Tennessee Health Science Center, Memphis, TN.
authors.forename: J Carolyn
authors.initials: JC
authors.lastname: Graff
authors.affiliation: St. Jude Children's Research Hospital, Memphis, TN.
authors.forename: Alana D
authors.initials: AD
authors.lastname: Lopez
authors.affiliation: St. Jude Children's Research Hospital, Memphis, TN.
authors.forename: Jane S
authors.initials: JS
authors.lastname: Hankins
mesh_terms: D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell / Q000451:nursing / Q000628:therapy*; D017028:Caregivers; D002648:Child; D005192:Family Health; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D010371:Pediatric Nursing; D060305:Transition to Adult Care / Q000458:organization & administration; D055815:Young Adult
keywords: Family perspective; Qualitative methods; Sickle cell disease; Transition to adult care