Abstract Objectives Advances in medical care have extended the lives of individuals with sickle cell disease (SCD), placing caregiving demands well beyond childhood. Yet little is known about the experiences of family members who care for adults with SCD. Understanding their perspectives can shed light on the realities of long-term caregiving and inform strategies to strengthen caregiver well-being and adult SCD care. The purpose of this study was to examine the lived experiences of Black/African American (B/AA) caregivers of adults with SCD patients (CASPs) in the United States. Methods In this qualitative descriptive study, we conducted semi-structured interviews with 19 B/AA CASPs across five U.S. states. Data were analyzed using Tracy’s phronetic iterative approach, which combined line-by-line coding with thematic analysis guided by constructs of social cognitive theory. Results Caregivers described five intersecting burdens that shaped their daily lives: (1) the emotional strain of carrying hidden distress while staying outwardly strong; (2) the structural barriers they faced in navigating healthcare, insurance, and racialized treatment; (3) advocacy labor, taking on the role of translator and defender in medical settings; (4) disrupted relationships, strained marriages, friendships, and even childhoods; and (5) the invisible work of anticipating crises, managing appointments, and holding families together. Conclusion These perspectives from CASPs highlight the ongoing, often invisible, labor required to sustain care across the lifespan. Their narratives highlight areas where healthcare providers and systems can improve their recognition of caregiver roles, reduce systemic barriers, and enhance culturally responsive approaches to managing adult SCD.
Ayeh et al. (Thu,) studied this question.