The influence of perceived racial bias and health-related stigma on quality of life among children with sickle cell disease

Abstract

Objectives: Individuals with sickle cell disease (SCD) experience significant health problems that may result in unpredictable pain episodes and frequent healthcare utilization. Disparities in clinical care may contribute to health-related stigma and racial bias for this majority African-American/Black population. There is less known about the influence of health-related stigma and racial bias on the health-related quality of life (HRQOL) of children with SCD. In the present study, we assessed these relationships and identified differences across demographic factors (i.e., age, gender). Design: Data was collected from African American children with SCD aged 8 -16 years (57% male, 63% HbSS). Children completed the Childhood Stigma Scale (adapted for SCD), the Child Perceptions of Racism in Children and Youth scale, and the Pediatric Quality of Life Inventory Sickle Cell Disease Module. Caregivers provided demographic information. Results:In the first regression model, health-related stigma (p = .007) predicted HRQOL, but neither age nor gender were significant predictors. In the second regression model, age (p = .03) predicted HRQOL, but neither gender nor racial bias were significant predictors. Of interest, there was a significant interaction between age, gender, and racial bias (p = .02). Specifically, older girls who reported high levels of perceived racial bias had poorer HRQOL. Conclusions:Our study highlights the need for increased awareness about the effects of health-related stigma and racial bias on HRQOL for children with SCD, particularly for older girls who endorse racial bias. Our findings will guide future stigma and bias reduction interventions that may meet the needs of older girls with SCD.

Pain-related stigma as a social determinant of health in diverse pediatric pain populations

“…Emerging evidence indicates that pediatric populations may experience similar implicit biases among healthcare providers ( 37 ), but some of the research is mixed. These findings have revealed that while medical providers held implicit attitudes that Black Americans and men were more pain-tolerant than others, their decision-making did not consistently differ based on patient's race and gender ( 14 , 22 ). While these findings suggest that provider bias may not routinely impact clinical decision-making, this conclusion is inconsistent with the documentation of pediatric pain patients' experiences of inequities in healthcare settings ( 6 , 14 , 22 ).…”

“…The role of unconscious or automatically occurring attitudes of others, known as implicit biases, as a contributor to pain-related stigma in pediatric pain is less known. However, research on implicit biases of observers may be pivotal in understanding disparities in pain care ( 22 , 23 ). However, relatively few empirical studies have examined the extent to which observer biases may account for disparities in how pediatric pain is assessed and treated.…”

Imputing Race and Ethnicity

“…For example, care providers have been shown to underestimate and undertreat the physical pain felt by Black people 25. Those with chronic illnesses face additional stigma that worsens their quality of life 26…”

Starting with I: Combating Anti-Blackness in Libraries

“…4 Those with the disease experience discrimination, dismissal, and overpolicing in healthcare settings due to its specific commonness among people of African and Middle Eastern descent. 2,5,6 Floyd is one victim of an extensive history of persecution, mistreatment, and unjust murder of Black people in the U.S. and across the world. The subsequent release of the video footage of Floyd's death, initially via social media, led to a fever pitch in the international outcry against oppression, racism, and police brutality, which had been building after the murders of Botham Jean, Atatiana Jefferson, Ahmaud Arbery, and many others.…”