Reducing Provider Stigma in Sickle Cell Disease Through a Community-Led Intervention Across Clinical Settings
Stamatia Vorri, Mai Nguyen Mintz, Melanie M Aviles, Muhammad Ali Lak, Dina Abdelhamid, Rick Zong, Linda Bulone, Kenneth A Rivlin,Abstract
Background
Provider stigma toward people living with sickle cell disease (SCD) is a well-documented contributor to poor pain management, eroded trust, and adverse outcomes. Although community engagement in research has traditionally been advisory, Community Advisory Boards (CABs) are uniquely positioned to identify and address stigma embedded in clinical practice. In a project initially designed to test whether experiential learning improves clinical trial literacy among CAB members, the CAB identified provider stigma as its highest priority and designed—and with resident support implemented—an educational intervention to address it. CAB members emphasized that “our pain is not believed” and that patients are labeled “drug seekers,” reflecting persistent themes in the literature. This study evaluated whether a CAB-designed, resident-implemented intervention could improve provider attitudes toward people living with SCD and whether effects differed across three clinical microcultures: inpatient residents at two hospitals and emergency department (ED) providers at one hospital.
Methods
We used a pre/post design involving inpatient residents at Site 1 (Pediatrics and Internal Medicine, N = 37), ED providers at Site 1 (N = 16), and inpatient Internal Medicine residents at Site 2 (N = 24). The CAB-designed intervention included a patient-narrated video, review of stigmatizing versus neutral clinical documentation, and a facilitated discussion focused on SCD pain management. Provider attitudes were measured using the validated General Perceptions About SCD Patients Scale. Baseline group differences were assessed using ANOVA; within-group change using paired t-tests; and between-group differences in change using ANOVA.
Results
The CAB-designed intervention significantly improved provider attitudes across all clinical settings. All groups demonstrated improvement on the highest CAB-priority item—belief in patients’ pain. Providers in all settings were less likely to interpret “appearing comfortable while in severe pain” as drug-seeking (p < 0.001). Both inpatient groups showed improvement on the item “requests specific narcotic.” Patterns of change varied by clinical microculture. Inpatient Site 1 demonstrated broad gains, improving in 11 of 14 negative-attitude items (p < 0.0001). Inpatient Site 2 showed improvement primarily in positive-attitude items (3 of 4; p = 0.001). ED providers showed fewer changes, consistent with lower baseline stigma and a floor effect.
Conclusions
A CAB-led intervention reduced provider stigma across diverse clinical contexts, with patterns of change reflecting local clinical microcultures rather than intervention failure. Baseline attitudes and care environments appear to shape which dimensions of stigma are most modifiable. Building on these findings, the CAB is collaborating with graduate medical education leadership, including the Designated Institutional Official (DIO), to embed stigma-focused experiential learning into residency training, signaling early institutional uptake of a community-led intervention. This study demonstrates that community members can move beyond advisory roles to serve as investigators—identifying priorities, designing interventions, and catalyzing practice-relevant change to advance equity in SCD care.