Stigma among youth with sickle cell disease in community and medical settings: a scoping review

Sickle cell disease (SCD), the most common genetic disorder in the United States, disproportionately affects Black individuals. A major aspect of SCD is the experience of vaso-occlusive episodes, a feature often characterized by debilitating pain which may necessitate emergency department (ED) visits. In the ED, adults with SCD often experience discrimination due to intersecting identities of race and disease status. Considerably less is known about experiences of discrimination for youth with SCD. This review aims to: (1) critically examine available research on the experiences of discrimination and stigma among youth with SCD in the United States, (2) describe measures currently used to assess pediatric stigma and/or discrimination, and (3) identify gaps in the literature to guide research.

We conducted a scoping review using a modified version of the Preferred Reporting Items for Systematic Review (PRISMA) and Meta-Analyses guidelines. Data were searched from database inception to May 2023. Initially, 285 articles were retrieved; after duplicate removal, 214 articles remained.

Reports of stigma varied by informant (i.e., caregiver, youth, or providers), method (i.e., qualitative or quantitative), and measure.

A better understanding of experiences of stigma and discrimination across development for youth with SCD is needed. Research aimed at reducing stigma and discrimination and its consequences in youth with SCD is warranted to enhance quality of life and improve health outcomes.