title: Exploring family communication about sickle cell disease in adolescence.
abstract: Sickle cell disease (SCD) is a lifelong disorder that involves progressive organ damage and requires ongoing medical attention to prevent and treat episodic acute complications. Children with SCD need ongoing monitoring and extra attention that may be stressful to family members. Communication within families can help resolve family stress and may be associated with medical follow-up and management of SCD. Focus groups were conducted with 12 African American families to explore the communication that occurred within and outside of the family from the perspectives of adolescents with SCD, siblings, and parents. Factors that influence family communication were explored. The extended family was an important social network and resource to adolescents, siblings, and parents. Family member knowledge of SCD was an important factor that influenced communication about SCD; adolescents and parents communicated more easily than siblings and also reported having more knowledge of SCD than siblings. Future research focusing on the knowledge of immediate and extended family members and their recognition of their contribution to the child with SCD is recommended.
authors.affiliation: College of Nursing, University of Tennessee Health Science Center, Memphis, TN 38105, USA. jgraff@uthsc.edu
authors.forename: J Carolyn
authors.initials: JC
authors.lastname: Graff
authors.forename: Jane
authors.initials: J
authors.lastname: Hankins
authors.forename: Rebecca J
authors.initials: RJ
authors.lastname: Graves
authors.forename: Kimberly Y
authors.initials: KY
authors.lastname: Robitaille
authors.forename: Ruth
authors.initials: R
authors.lastname: Roberts
authors.forename: Katherine
authors.initials: K
authors.lastname: Cejda
authors.forename: Belinda T
authors.initials: BT
authors.lastname: Hardy
authors.forename: Margery
authors.initials: M
authors.lastname: Johnson
authors.forename: Jerlym S
authors.initials: JS
authors.lastname: Porter
mesh_terms: D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell / Q000451:nursing / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D002648:Child; D003142:Communication; D005190:Family / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male