Beyond the Blood Disorder: Unlocking the Individual and Community Factors That Build Resilience in Adults with Sickle Cell

Abstract Objectives Sickle cell disease (SCD) is an inherited blood disorder affecting approximately 100,000 individuals in the United States, most of whom are Black. Although advances in pediatric care have improved survival, adults with SCD continue to experience high morbidity and mortality due to systemic barriers, limited specialty care, and inequitable resource distribution. While disparities are well-documented, less is known about how individual and community factors shape resilience. Methods This study analyzed 276 adults with SCD from a National Institute of Health dataset, using the Brief Resilience Scale as the outcome. Guided by Aday’s Framework, it examined various individual and community predictors using descriptive statistics, linear regression, as well as analyses of variance, and covariance Results Participants were predominantly Black/African American (97%), 55% were female, 73% reported household incomes below $60,000, and 54% used government-funded insurance. Significant predictors of resilience included physical function (p=.021), illness perception (p<.001), relationship stress (p<.001), provider communication (p=.038), healthcare satisfaction (p=.050), congregational support (p=.007), neighborhood stress (p=.011), and household income (p=.006). Conclusion To understand how resilience affects health outcomes in adults with SCD, it is essential first to understand how resilience develops. Ultimately, resilience stems from the interaction of individual, community, and structural factors, underscoring the need for interventions at multiple levels to improve health outcomes and quality of life in this population. These insights explain what enables this population to thrive despite adversity and what hinders their progress. They also show that focusing solely on individual adaptation is insufficient, highlighting the importance of external influences.