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Managing Sickle Cell Disease

Managing Sickle Cell Disease: In Low-Income Families

Shirley A. Hill
Copyright Date: 1994
Published by: Temple University Press
Pages: 240
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  • Book Info
    Managing Sickle Cell Disease
    Book Description:

    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.

    eISBN: 978-1-4399-0425-1
    Subjects: Public Health, Sociology

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Preface
    (pp. ix-xii)
  4. 1 Introduction
    (pp. 1-14)

    Being diagnosed with the sickle cell trait really did not mean much to Doris Jacobs, a single Black mother who gave birth to her first child, a son, when she was eighteen years old. The baby was born during the 1970s, when advances in medical technology and the civil rights movement had converged to define sickle cell disease (SCD) as an important national health-care issue. Doris and her son were both screened for SCD and were found to be among the more than three million African Americans who carry the sickle cell trait. Because Doris was informed that the sickle...

  5. 2 Sickle Cell Disease
    (pp. 15-26)

    Charles F. Whitten, the best-known physician in the field of sickle cell disease (SCD), asserts that until the early 1970s, “virtually every parent who had a child with sickle cell anemia became aware of their potential for having a child with the disease after the birth of the first child having the disease” (Whitten 1992,194). In the 1970s, however, the civil rights movement and medical advances increased public awareness of and medical support for preventing and treating SCD. In 1972 Congress passed the National Sickle Cell Anemia Control Act, which called SCD a “debilitating inheritable disease” and a “deadly and...

  6. 3 The Mothers and Their Families
    (pp. 27-50)

    The African American mothers in this study are viewed within the larger historical context of the Black family, as well as the socioeconomic and cultural forces that have shaped their values, lifestyles, and attitudes toward health and illness. Although they were not chosen by a random process, they resembled many Black women in the United States in terms of employment, marital status, education, and living situation. As a group, these mothers had a fairly low level of education and low economic status; they were unmarried and were employed outside the home. Almost all the unemployed mothers received some type of...

  7. 4 Diagnosing Sickle Cell Disease
    (pp. 51-68)

    The 1970s witnessed a proliferation of public education and screening programs designed to carry the news of SCD to the Black community. SCD presentations were made in junior and senior high schools, and information and screening services were offered in a variety of locations in Black communities. These programs sought not only to inform those Blacks who had never heard of SCD about the disease but also to rectify what health-care experts working with SCD patients viewed as a major obstacle to controlling the disease: the myths and misunderstandings about SCD that had led many Blacks to react to having...

  8. 5 Reproductive Decision Making
    (pp. 69-90)

    From their inception, genetic screening programs were viewed as a way to prevent the transmission of hereditary diseases through education, screening. and selective reproductive decision making. The health-belief model suggests that health behaviors are shaped by perceptions of susceptibility to and severity of illness, the benefits and barriers involved in seeking medical care, and cues to actions (Becker 1979). Applied to SCD, this model implies that a diagnosis of sickle cell trait or SCD would underscore one’s susceptibility to passing the disease on to a child and would lead to an alteration in reproductive behavior if the benefits of doing...

  9. 6 Caregiving for Children with SCD
    (pp. 91-110)

    The diagnosis of SCD in a person no longer portends imminent death or extensive hospital care; instead, an indefinite period of home caregiving by family members is needed. The early caregiving period was difficult for the mothers in this study because, although they were given some general information about SCD at the time of the diagnosis, most were told virtually nothing about how to manage the home health care of their children. This lack of advice from health-care experts may stem from medicine’s inability to anticipate how severe the disease will be for anyone person, but it also reflects an...

  10. 7 Mediators of Care giving Demands
    (pp. 111-132)

    How much caregiving work do the mothers of children with SCD perform? What medical and social circumstances affect the demands of caregiving? How does their caregiving load compare with that of other parents with chronically ill children?

    Research on the amount of home care provided by caregivers of chronically ill children is sparse and points to the complicated nature of measuring such care. Obviously, the type of illness affects caregiving demands; some illnesses, such as cystic fibrosis, have extensive, time-consuming and burdensome caregiving requirements (Patterson 1985), while others require routine monitoring and medication, with intense medical or home care during...

  11. 8 Finding Social Support
    (pp. 133-154)

    In recent years social support, defined as “access to and use of individuals, groups, or organizations in dealing with life’s vicissitudes” (Pearlin et al. 1981), has become a major component of stress theory. Social support reduces the stress that results from providing care for chronically ill family members (Shapiro 1983, 1989). Black families have historically been characterized as having large, extended networks of social support (Hill 1971; McAdoo 1982; Stack 1974), although most researchers have focused on how these kin networks operate to ensure economic survival. Some studies suggest that single Black women in the lower classes do not have...

  12. 9 Coping
    (pp. 155-178)

    During the entire course of their children’s illness, mothers were engaged in the task of making sense out of the SCD experience: How and why did their children get SCD? What impact was it having on the child and the family? What was the best way to think about the disease? What kind of future would their children have? A few mothers embraced the medical model of SCD—its explanation of the genetic transmission of SCD and its focus on the disease’s unpredictability. For some mothers, accepting the medical model represented an advance beyond self-blame and feelings of sin and...

  13. 10 Reconstructing SCD
    (pp. 179-184)

    The off-handed statement that “kids do get sick” belies the difficulties experienced by the thirty-two low-income African American mothers in this study as they faced the consequences of having the sickle cell trait and passing a chronic illness, SCD, on to their children. A recent study of the impact of childhood SCD on Black families found that “when asked about it directly, there is an apparent pattern of denying the impact of the child’s illness on the family. However, when asked indirectly, the impact is apparent” (Burlew, Evans, and Oler 1989, 166). The research methods used in this study—ten...

  14. Appendix: Research Strategy
    (pp. 185-198)
  15. Bibliography
    (pp. 199-218)
  16. Index
    (pp. 219-226)
  17. Back Matter
    (pp. 227-227)