In this Book

summary
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.

Table of Contents

  1. Cover
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  1. Frontmatter
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  1. Contents
  2. p. vii
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  1. Preface
  2. pp. ix-x
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  1. 1. Introduction
  2. pp. 1-14
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  1. 2. Sickle Cell Disease
  2. pp. 15-26
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  1. 3. The Mothers and Their Famllies
  2. pp. 27-50
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  1. 4. Diagnosing Sickle Cell Disease
  2. pp. 6451-68
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  1. 5. Reproductive Decision Making
  2. pp. 69-90
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  1. 6. Caregiving for Children with SCD
  2. pp. 91-110
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  1. 7. Mediators of Caregiving Demands
  2. pp. 111-132
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  1. 8. Finding Social Support
  2. pp. 133-154
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  1. 9. Coping
  2. pp. 155-178
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  1. 10. Reconstructing SCD
  2. pp. 179-184
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  1. Appendix: Research Strategy
  2. pp. 185-198
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  1. Bibliography
  2. pp. 199-218
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  1. Index
  2. pp. 219-225
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Additional Information

ISBN
9781439904251
MARC Record
OCLC
639014042
Launched on MUSE
2012-01-01
Language
English
Open Access
No
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