Abstract
PURPOSE: The purpose of this study was to use qualitative interviews to understand the experiences of adult women with sickle cell disease (SCD) through daily life and navigating the healthcare system. METHODS: We conducted semi-structured interviews with reproductive-aged women with SCD and performed thematic analysis. RESULTS: We analyzed interviews from 20 participants. Our data demonstrated three overarching themes: perceptions of disease, transitions of care, and stigma and bias. Participants identified feelings of both empowerment and powerlessness from SCD that evolved over time and globally impacted their lives. The transition from pediatric to adult care was a vulnerable period, both surrounding changes in disease character and challenges transitioning healthcare systems. Finally, participants faced discrimination and prejudice within SCD care, which manifested as disvaluing of their own disease expertise or perpetuation of a "drug-seeking" stereotype. In the context of this bias, some participants prioritized seeking same-race providers. CONCLUSION: Experiences with SCD contribute significantly to daily quality of life in women with SCD, and ongoing care gaps exist in relation to their disease. Within our population, SCD as a physical and mental stressor requiring interdisciplinary support should not be underestimated. More robust systems to support the transition from pediatric to adult care are also necessary, both on a healthcare institution level and to support patients' engagement in their care. Finally, provider education and training on anti-racist practice and both recognizing and eliminating bias are essential to improving care of SCD patients. Possible interactions between sex, gender, and race in the experience of SCD warrant further exploration.