Sickle Cell disease is a blood inherited disease that gravely affects patient quality of life and life expectancy. Due to America’s history and long-standing system of racial injustice, sickle cell patients are often mistreated, neglected, and healthcare is unattainable. Social attitudes and racism towards youth with sickle cell disease further exacerbate these issues.
A study was conducted with a group of 20 youth participants, ages 13- 21 years of age, diagnosed with sickle cell disease. Information was gathered via interviews with the youth, and 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 4 categories and 12 subcategories, including Perpetrator (Peers, Authority, Public), Type of Racial Bias (Explicit, Non-Explicit), Behavioral Reaction (Approach, Avoid), and Emotional Response (Dysphoria, Anger, Unconcerned, Inferior, Anxious). These interviews revealed that all 20 of the youth participants with sickle cell disease 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 sickle cell disease are not spared this injustice. These racial inequalities must be acknowledged and examined for the progress of society. There is also a need for educational, medical, and social program implementation that could improve life for youth with sickle cell disease. Further studies are needed to evaluate the effects of racism on sickle cell youth and how fewer racial bias could reduce the burden on these patients.