Purpose 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.
Design and 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.
Conclusion: 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.
Practical Implications: Interventions can utilize technology, social media, and advertisement campaigns.
Additionally, support groups for patientswith SCDmay help decrease stigma and validate patients' experiences.
© 2016 Elsevier Inc. All rights reserved.