title: Caregiver Perspectives of Stigma Associated With Sickle Cell Disease in Adolescents.
abstract: Patients and families affected by various medical conditions report experiencing health-related stigma, which contributes to detrimental physical, psychological, and social outcomes. Sickle cell disease (SCD) is a genetic disorder that affects 89,000 individuals in the United States and is often associated with negative stereotypes and incorrect assumptions. The present study explored the perception of stigma as reported by caregivers of adolescents with SCD.
  
  
  METHODS
  Focus groups were conducted with 20 caregivers of patients with SCD. Focus groups were audio recorded and transcribed. The data were coded independently by two authors, and then reviewed conjointly until consensus was reached.
  
  
  RESULTS
  Caregivers reported the perception of stigma in academic, medical, community, and family settings. They also reported internalized stigma including negative feelings toward having a child with SCD, feeling upset with others, and seeing negative emotions in their child due to SCD. Caregivers reported a general lack of knowledge about SCD across settings.
  
  
  CONCLUSIONS
  These results demonstrated that stigma may affect individuals with SCD across multiple settings. These results also highlighted areas for intervention, with a focus on increasing communication and education toward medical providers, schools, and communities.
  
  
  CONCLUSIONS
  Interventions can utilize technology, social media, and advertisement campaigns. Additionally, support groups for patients with SCD may help decrease stigma and validate patients' experiences.
authors.affiliation: The Children's Hospital of Philadelphia, Philadelphia PA. Electronic address: wesleyk@email.chop.edu.
authors.forename: Kimberly M
authors.initials: KM
authors.lastname: Wesley
authors.affiliation: The University of Mississippi, Oxford MS.
authors.forename: Mimi
authors.initials: M
authors.lastname: Zhao
authors.affiliation: St. Jude Children's Research Hospital, Memphis TN.
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Carroll
authors.affiliation: St. Jude Children's Research Hospital, Memphis TN.
authors.forename: Jerlym S
authors.initials: JS
authors.lastname: Porter
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000755:Anemia, Sickle Cell / Q000451:nursing* / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D015331:Cohort Studies; D005260:Female; D017144:Focus Groups; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D010465:Perception; D011788:Quality of Life; D018570:Risk Assessment; D057545:Social Stigma; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D014481:United States
keywords: Adolescent; Caregiver; Health-related stigma; Sickle cell disease; Stigma