Managing sickle cell disease in low-income families

As many as 80,000 African Americans have sickle disease (SCD). Though the political activism of the 1960s and a major 1970s health campaign spurred demands for testing, treatment, and education programs, little attention has been given to how families cope with sickle cell trait or one of the sickle cell diseases. This first study to give SCD a social, economic, and cultural context documents the daily lives of families living with this threatening illness. Specifically, Shirley A. Hill examines how low-income, African American mothers with children suffering from this hereditary, incurable, and chronically painful disease, react to the diagnosis and manage their family's health care. The thirty-two mostly single mothers Hill studies survive in an inner-city world of social inequality. Despite limited means, they actively participate in, create, and define the social world they live in, their reality shaped by day-to-day caregiving. These women often encounter institutional roadblocks when seeking services and medical information. Still, they overcome these obstacles by utilizing such viable alternatives as sharing child care with relatives within established kinship networks. Highlighting the role of class, race, and gender in the illness experience, Hill interprets how these women react, redefine, or modify the objective scientific facts about SCD. She also reveals that within the cultural context of the African American community the revelation of the SCD trait or the diagnosis of one child often does not affect a woman's interpretation of her reproductive rights. While to those outside this community, having children in spite of a high risk of passing on SCD may seem disturbing, this study acknowledges and explains the relevance of child-bearing and motherhood to African American women's identity. Through in-depth interviews, Hill shows inventive women who find alternatives to traditional methods of caring for their children to successfully reduce their children's SCD symptoms and the strain of fitting in with their peers. A comprehensive account of SCD and its influence on daily and long-term decision-making emerge from Hill's interweaving of the women's voices and her own interpretive analysis.