A mixed methods examination of processes underlying disease management in pediatric Sickle Cell disease
OA Version
Citation
Abstract
Sickle Cell Disease (SCD) is a serious lifelong chronic illness which disproportionately affects Black/African American individuals. Hallmark SCD features include significant pain, life-threatening complications, and frequent hospitalizations. Effective SCD management during childhood critically improves health outcomes across the life course; however, current research fails to account for how disease management processes differ across developmental and socioeconomic contexts. This multi-study, mixed-methods dissertation explored processes underlying disease management in pediatric SCD, with specific emphases on the roles of medical decision-making and social determinants of health (SDoH) across childhood and adolescence. Twenty-seven parents/primary caregivers of children ages 0-12 with SCD (Study 1) and 39 adolescents with SCD ages 13-17 and parents from 18 families (Studies 2 and 3) completed semi-structured qualitative interviews exploring SCD management. Families in Studies 2 and 3 also completed quantitative measures of SDoH and perceived stress. Across all studies, participants were primarily Black/African American/Afro-Latino (≥89%) and publicly insured (>50%). Study 1 qualitatively characterized processes and priorities underlying caregivers’ decision-making when managing SCD during childhood. Caregivers prioritized preventing and/or mitigating SCD symptoms when managing SCD. Caregivers’ active engagement in disease management, disease knowledge acquisition, and (mis)trust of medical providers further informed their medical decision-making. Study 2 qualitatively explored how caregivers shift SCD management responsibilities to youth during adolescence. Fear of being underprepared for the transition to adult care influenced the initiation of responsibility-sharing. Gradually sharing SCD management responsibilities fostered adolescents’ sense of self-efficacy and self-advocacy skills, which were considered critical for transition readiness. Study 3 employed a convergent mixed-methods design to characterize how adolescent- and caregiver-reported SDoH and perceived stress influence SCD management during adolescence. In general, housing (e.g., proximity to SCD-related care) and caregivers’ employment (e.g., flexibility and benefits) influenced SCD management and exacerbated perceived stress. Families who reported more risk for adverse SDoH (i.e., housing instability, food insecurity, and/or utility shut-off) felt the impacts of housing and employment on their SCD management most acutely. Together, findings highlight how multi-system level interventions that promote disease knowledge and youth self-efficacy, cultivate trusting family-provider relationships, and address adverse SDoH may improve care and outcomes for youth and families managing pediatric SCD.
Description
2025
License
Attribution-NonCommercial-NoDerivatives 4.0 International