Exploring the relationship between health-related stigma and perceived discrimination among adults with sickle cell disease

Abstract Introduction Health related stigma and perceived discrimination are distinct yet interconnected psychosocial stressors that significantly affect the lived experience of adults with sickle cell disease (SCD). Both stressors have been independently linked to depressive symptoms, insomnia, greater pain interference, and reduced self-efficacy for self-care. Although previous research has demonstrated that both health-related stigma and perceived discrimination independently contribute to adverse outcomes, little is known about their association among individuals with SCD. The purpose of this study was to examine the relationship between health-related stigma and perceived discrimination in adults living with SCD. Methods This study employed a cross-sectional, correlational analysis to examine the relationship between health-related stigma and perceived discrimination among 171 adults with SCD (mean age = 36, SD = 11, 61% female, 97% Black/African American). Participants with moderate to severe chronic pain were originally recruited from the University of Illinois Hospital Sickle Cell Clinic. Stigma was measured using the 11-item Measure of Sickle Cell Stigma (MoSCS), a self-report instrument developed specifically for adults with SCD. Perceived discrimination was assessed using the 9-item Perceived Discrimination Scale (PDS). Given the non-normal distribution of the data, Spearman's rank correlation was used to examine the association between stigma and perceived discrimination. Results The sample was predominantly single (74%), married or partnered (22%), with smaller proportions divorced or separated (3%) and widowed (2%). Most participants reported having either some college education (47%) or high school or less education (42%). Annual income was reported as 10, 000–30, 000 by 41%, less than 10, 000 by 38%, and more than 30, 000 by 22%. The overall mean score on the PDS was 1. 95 (SD = 1. 02), with the highest-rated item being “People act as if they are better than you” (M = 2. 51, SD = 1. 25). For the MoSCS, the overall mean was 1. 49 (SD = 1. 56), with the highest-rated item, “I am very careful whom I tell that I have sickle cell” (M = 2. 51, SD = 1. 98), reflecting high disclosure concern. A significant moderate positive correlation was found between perceived discrimination and stigma (rho = 0. 47, p. 001). Further, EDS was significantly and positively correlated with all MoSCS subscales, with the strongest correlation observed with social exclusion (rho= 0. 46), followed by internalized stigma (rho = 0. 42), disclosure concerns (rho = 0. 34), and expected discrimination (rho = 0. 30) (all p. 001). Conclusion Findings demonstrate a significant, moderate positive linear association between perceived discrimination and stigma among adults living with SCD. The strongest relationship was observed between discrimination and social exclusion underscoring how everyday discriminatory experiences may reinforce feelings of being socially marginalized. These results highlight the need for holistic care that includes psychosocial support and targeted interventions to address both stigma and perceived discrimination in this population to improve overall well-being and support effective self-management.