Hood, A;
Crosby, L;
Lebensburger, J;
Madan-Swain, A;
Rumble, D;
Trost, Z;
(2019)
Older female children experience poorer quality of life when levels of perceived racial bias are high.
Presented at: 14th Annual Academy of Sickle Cell and Thalassaemia conference (ASCAT 2019), London, UK.
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Abstract
Background: Individuals with sickle cell disease (SCD) experience significant health problems that result in unpredictable pain episodes and frequent healthcare utilization. Disparities in clinical care and emergency room visits in which medical providers mistrust the severity of reported pain symptoms may contribute to health-related stigma. In addition to stigma related to seeking care for acute pain, racism is a source of stigma with associated systemic inequities for this majority Black population. There is currently limited research into the effects of health-related stigma and racial bias on the underserved SCD population; however, the small body of research has found barriers to healthcare utilization, greater pain burden, and increased emotional distress. There is little known about the influence of health-related stigma and racial bias on quality of life (QOL) of children with SCD. The present study assessed these relationships, and additionally, we sought to understand whether there were differences in this relationship with regards to demographic factors (e.g., age, gender). / Methods: Data was collected from African-American children with SCD aged 8 - 16 years (57% male, 63% HbSS) who received care at a medical center in the United States. Sixty-three percent of children were receiving chronic transfusion therapy or pheresis and 37% were receiving hydroxyurea therapy. Children completed the Childhood Stigma Scale (adapted for SCD), the Child Perceptions of Racism in Children and Youth scale (PRaCY), and the Pediatric Quality of Life Inventory for SCD (PedsQL). Caregivers provided demographic information. / Results: We first assessed whether age, gender, and health-related stigma predicted QOL and demonstrated a significant overall model, F(7, 22) = 4.59, p = .003, r = .46. Health-related stigma (p = .007) predicted QOL, but neither age or gender were significant predictors. The next model assessed whether age, gender, and racial bias predicted QOL and demonstrated a significant overall model, F(7, 22) = 4.59, p < .001, r = .52. Specifically, age (p = .03), but neither gender or racial bias were significant predictors. Of interest, there was a significant interaction between age, gender, and racial bias (p = .02), which indicated that males generally had higher QOL that did not differ as a function of racial bias or age. Similarly, females who reported low levels of racial bias had higher QOL that did not differ as a function of age. In contrast, females who reported high levels of racial bias had QOL that differed as a function of age. Specifically, older female children who reported high levels of perceived racial bias had poorer QOL (see Figure 1).
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