Sickle cell disease (SCD) is an inherited hemoglobinopathy that significantly affects the quality of life and life expectancy of Black Americans. Due to America’s longstanding systemic racism, patients with SCD are often neglected and mistreated because of the color of their skin, and adequate healthcare is unattainable. Social attitudes and racism towards Black youth with SCD further exacerbate these issues.
A study was conducted with a group of 20 Black youth participants, ages 13 to 21 years of age, diagnosed with SCD. Information was gathered via interviews with the youth. They were asked to describe any racial bias they had experienced. Interviews were recorded, transcribed, and analyzed by two separate individuals using a conventional content analysis approach.
The content analysis divided the racial bias events into four categories and twelve subcategories, including perpetrator (peers, authority, public), type of racial bias (explicit, implicit), behavioral reaction (approach, avoidant), and emotional response (dysphoria, anger, unconcerned, inferior, anxious). These interviews revealed that all 20 of the youth participants with SCD had experienced at least one incident of racial bias.
From the information provided in these interviews, we can determine that racism is a deep-rooted issue in American society, and youth with SCD are not spared this injustice. These racial inequalities must be acknowledged and examined in research and clinical practice for SCD disparities to be rectified and for health equity to be achieved. There is also a need for the implementation of educational, medical, and social programs that could improve quality of life and life expectancy for Black youth with SCDÂ [1].
Source:
[1] Wakefield, E. O., Pantaleao, A., Popp, J. M., Dale, L. P., Santanelli, J. P., Litt, M. D., & Zempsky, W. T. (2018). Describing Perceived Racial Bias Among Youth With Sickle Cell Disease. Journal of Pediatric Psychology, 43(7), 779–788. https://doi.org/10.1093/jpepsy/jsy015