Caregiver Burden and its Limitations in Describing Black Caregivers’ Experience

Purpose of Review: For Black caregivers, existing literature suggests that caregiving experience is complex. The purpose of this review is to synthesize the literature on popular conceptual models of and instruments used to measure caregiver burden and highlight the existing gaps in our understanding of caregiver burden, with a focus on Black caregivers. Recent Findings: Although the definition of caregiver burden has undergone several iterations throughout the years, it primarily centers on the effect of stressors. From a conceptual perspective, the existing caregiver burden models tend to focus on the characteristics of the caregiver and care recipient themselves and the relationship between them. The models offer little reflection on macro-level social determinants, such as racism, ageism, sexism, and classism, and their impact on caregiving. Traditionally, caregiver burden has been measured by the Zarit Burden Interview. Despite its usage, little research has been conducted to test the reliability and validity of the 22-item ZBI in racial and ethnic caregiver populations, traditionally underrepresented in research. Studies have indicated that Black caregivers describe their caregiving experience as challenging but natural, suggesting that burden may not be a resonating construct. Summary: The literature assumes that caregivers experience burden, leaving little space for other experiences or emotions, such as joy, reward, and closeness. Black caregivers may not ascribe the same meaning to the construct of caregiver burden as other caregiver groups. To address this theoretical limitation, we must consider caregiving as an experience that each individual caregiver expresses in unique ways, including but not limited to physically, mentally, spiritually, socially, and financially.