"Ride the Wave and Keep Your Head Above It": An Exploratory Study of Social Support and Advocacy Among Black/African American Caregivers of Adult Sickle Cell Disease Patients

Abstract

Each year, an estimated 300,000 babies are born globally with Sickle Cell Disease (SCD), a chronic, inherited blood disorder that disproportionately affects individuals of African descent. In the United States, SCD occurs in approximately 1 in every 365 Black or African American (B/AA) births. While advances in pediatric care have improved early survival, adults with SCD face ongoing complications, fragmented care, and systemic neglect. Within this context, caregivers of adults with SCD (CASPs) perform critical yet underrecognized roles, navigating daily emotional, logistical, and advocacy labor in health systems that rarely acknowledge their presence or needs. This qualitative study investigates how CASPs across the United States interpret, negotiate, and communicate support within relational, cultural, and institutional systemsGuided by Social Support Theory (SST), particularly through Goldsmith’s Normative Approach and Social Cognitive Theory (SCT), the study centers the lived experiences of 19 B/AA CASPs and uses an inductive, phronetic approach (Tracy, 2020) to analyze in-depth, semi-structured interviews. Six themes organize the findings: caregiving burden as constant tension; navigating support and evaluating help; cultural and relational caregiving norms; systemic and environmental barriers; caregiver advocacy and efficacy; and gaps and opportunities for better support. Participants described support as not passively received but communicatively evaluated, resisted, or redefined based on cultural fit, relational trust, and timing. Appraisal support, especially from peers, as central to caregiver confidence, while systemic barriers like institutional fragmentation and transportation inequities reshaped how support was accessed and interpreted. A revised conceptual framework depicts support as a dynamic, co-constructed process shaped by behavioral adaptation and normative expectations. The study offers practical implications for caregiver-informed interventions, particularly during care transitions, and extends theoretical understanding of SST, SCT, and normative approaches by showing how support is culturally situated and communicatively enacted. CASPs in this study operate as silent warriors, asserting care, co-constructing meaning, and resisting systems that often overlook them.