Managing Sickle Cell Disease: In Low-Income Families
As many as 30,000 African Americans have sickle cell 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 SCD. 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 23 mostly single mothers Hill studies survive in an inner-city world of social inequality. Despite limited means, they actively participate, create, and define the social world they live in, their reality shaped by day-to-day caregiving. These women overcome 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 reject, redefine, or modify the objective scientific facts about SCD. She acknowledges and explains the relevance of child-bearing and motherhood to African American women's identity, revealing how the revelation of the SCD trait or the diagnosis of one child often does not affect a woman's interpretation of her reproductive rights.
What people are saying - Write a review
We haven't found any reviews in the usual places.
abortion affected African American mothers asked behaviors Black families blood boys caregiving child with SCD childbearing children with SCD chronically ill crisis cultural daugh daughter with SCD deal diagnosed with SCD diagnosis of SCD doctor economic experience family members father feel formal support groups gender genetic screening grandmother health-care experts hemoglobin hospital illness severity illness symptoms interview kids knowledge about SCD lives male managing marital medical knowledge medical mismanagement medical model model of SCD motherhood never normal nurse pain crises patients Patricia Hill Collins penicillin percent person physicians pregnancy prenatal prenatal diagnosis problems reproductive role SCD Clinic SCD information SCD screening programs seek medical sick sickle cell anemia sickle cell disease sickle cell trait social support stay strategies stress talk teenage tell tested thalassemia things thirty-three-year-old mother told wanted Whitten year-old mother