Describing perceived racial bias among youth with sickle cell disease

Abstract

Objectives: Sickle cell disease (SCD) predominately affects Black Americans. This is the first study of its kind to describe the racial bias experiences of youth with SCD and their reactions to these experiences. Methods: Participants were 20 youth with SCD (ages 13-21 years) who were asked to describe any racial bias events they experienced, as recorded on the Perception of Racism in Children and Youth measure (PRaCY). Interviews were recorded, transcribed, and analyzed by two independent raters using a conventional content analysis approach. Results: All participants reported at least one incident of racial bias. Content analysis of racial bias events (n ¼ 104) yielded 4 categories and 12 subcategories as follows: Perpetrator (Peers, Authority Figures, and General Public), Type of Racial Bias (Explicit, Implicit), Behavioral Reaction (Approach, Avoidant), and Emotional Response (Dysphoria, Anger, Unconcerned, Inferior, Anxious). Discussion: This study provides a description of racial bias experiences within community and medical settings and highlights the need for further evaluation of the impact of racial bias among youth with SCD.