Care of Black Children with Sickle Cell Disease: Fathers, Maternal Support, and Esteem

Abstract

The study uses 34 black families caring for children chronically ill with sickle cell disease to address two questions: First, how is social support perceived by primary caregivers to be allocated from members to the caregivers when fathers are present in households in comparison to when fathers are absent, and second, what are the patterns of perceived social support to caregivers over time? Findings indicate most support to caregivers comes from the extended kin network, despite father presence or absence. Caregivers report the network support diminishes between diagnosis, usually in early childhood, and middle childhood. The findings can be used by family practitioners to understand and better address black families who care for these children.