Psychosocial Burden of Childhood Sickle Cell Disease on Family Members and Caregivers, Homa Bay, Kenya.

Abstract

Objective To characterize the types and magnitude of family burden present in caregivers and families who have a child with Sickle Cell Disease (SCD) in Kenya; to identify demographic and disease-specific predictors of caregiver burden. Methods Primary caregivers (N = 103) of children diagnosed with SCD completed surveys assessing multiple domains of caregiver quality of life, parental adjustment related to child illness, mental health, and financial burden. Descriptive statistics characterize caregiver burden and linear regressions models assess associations. Results On indicators of quality of life (QOL), caregivers report problems across most domains assessed included their daily activities and their physical, social, cognitive, and emotional well-being. Daily Activities emerged as most burdensome. On indicators of parental adjustment to chronic illness, guilt and worry emerged as the largest concern, though they also experience long-term uncertainty and sorrow and anger; they reported relatively high levels of emotional resources. Financial burden was high; caregivers reported moderate to major loss in revenue and financial benefits due to the time spent caring for the child. Linear regression analyses revealed that financial burden was a significant predictor of all negative outcomes. Conclusions Results provide preliminary evidence that Kenyan caregivers of children with SCD experience difficulties across multiple domains of functioning and that financial struggles are associated with most psychosocial outcomes. Results can begin to guide intervention needs and opportunities.