Abstract
Background Despite advancements in Sickle Cell Disease (SCD) treatment, systems of care continue to neglect the critical role of caregivers of adults with SCD (CASPs), particularly Black/African American (B/AA) caregivers who disproportionately shoulder this burden in the United States (Haywood et al., 2014; Jenerette & Brewer, 2011; Telfair et al., 2004). Limited attention has been directed toward the complex, sustained caregiving roles undertaken by CASPs, most often caring for their loved ones, such as siblings, spouses, adult children, or aging parents with SCD (Carson & McFarlane, 2025; Riffin et al., 2017; Sabota et al., 2014). Guided by Social Support Theory (SST) and Social Cognitive Theory (SCT), this study centers the experiences of CASPs to illuminate the structural and communicative gaps that hinder access to culturally responsive, sustainable support. Drawing on these public health and health communication frameworks, we examine how caregivers perceive unmet needs and articulate grounded recommendations for caregiver-centered change or recommendations (House, 1981; Bandura, 2001; Goldsmith, 2004, 2015).
Method Using a phronetic iterative approach (Tracy, 2020), this qualitative study draws on in-depth, semi-structured interviews with 19 CASPs who self-identify as B/AA across the United States. Participants, who include parents (n = 12), spouses (n = 1), grandparents (n = 1), grandchildren (n = 1), and adult children (n = 4), were recruited through purposive and snowball sampling from SCD clinics, community networks, and online support spaces. Interviews explored caregiving roles, experiences with formal and informal support systems, and reflections on unmet needs and recommendations for improved care. All interviews were audio-recorded, transcribed verbatim, and analyzed using iterative coding in NVivo. The data were first open-coded and then refined into axial categories using a constant comparative approach. We organized codes around emergent domains of support gaps and caregiver-suggested interventions. Additionally, we employed reflexive memoing and thematic saturation strategies to ensure analytic rigor and trustworthiness. Special attention was given to emergent communicative challenges and support gaps voiced in response to questions about emotional burden, institutional interaction, and caregiving needs.
Results Four major domains of unmet need emerged: (1) the institutional invisibility of CASPs in healthcare and policy systems; (2) misalignment between available services and caregivers' lived, culturally situated realities; (3) the emotional and cognitive toll of informational labor and advocacy; and (4) the underutilized potential of community-based and peer-led support networks. CASPs repeatedly described themselves as unrecognized actors in care coordination, excluded from discharge planning, overlooked in provider communication, and left without culturally appropriate emotional or mental health resources. Informational support was often absent, requiring caregivers to serve as translators, historians, and advocates within fragmented systems. Many described feeling “exhausted but invisible,” emotionally depleted from caregiving labor that was both indispensable and disregarded.
At the same time, caregivers expressed clear visions for what caregiver-centered support could look like. These included caregiver liaisons in clinical settings, culturally relevant mental health services, regional support hubs, and peer mentorship grounded in lived experience. Participants consistently called for interventions that validate their expertise, reduce structural burdens, and promote continuity and trust across care settings. Across interviews, CASPs framed support as relational recognition through? being meaningfully included in the care process.
Conclusion To sustainably support Black/African American caregivers of adults with SCD, institutional systems must integrate culturally attuned, caregiver-informed communication strategies. Participants articulated clear, experience-driven solutions that emphasize the need for accessible mental health services, effective care coordination, and increased visibility in healthcare planning. Effective interventions must move beyond clinical efficiency and center caregivers' emotional labor, narrative legitimacy, and structural marginalization. By addressing these support gaps, institutions can improve both caregiver and patient outcomes across the SCD continuum.
