Managing Sickle Cell Disease: In Low-Income Families

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Temple University Press, Apr 9, 2003 - Health & Fitness - 240 pages
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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.
  

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Contents

Section 1
1
Section 2
6
Section 3
15
Section 4
16
Section 5
19
Section 6
27
Section 7
28
Section 8
41
Section 24
103
Section 25
105
Section 26
111
Section 27
113
Section 28
118
Section 29
120
Section 30
121
Section 31
126

Section 9
44
Section 10
47
Section 11
57
Section 12
61
Section 13
69
Section 14
74
Section 15
77
Section 16
80
Section 17
87
Section 18
91
Section 19
92
Section 20
93
Section 21
95
Section 22
99
Section 23
102
Section 32
128
Section 33
129
Section 34
133
Section 35
144
Section 36
145
Section 37
146
Section 38
155
Section 39
163
Section 40
166
Section 41
169
Section 42
173
Section 43
179
Section 44
185
Section 45
187
Section 46
199

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About the author (2003)

Shirley A. Hill is Associate Professor of Sociology at the University of Kansas. Her most recent book is African American Children: Socialization and Development in Families.

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