Valiant Girls and Vulnerable Boys: The Impact of Gender and Race on Mothers' Caregiving for Chronically Ill Children

Abstract

Notions of gender are embedded in the social structure and often subtly affect our views and expectations in virtually every area of life. It is only gradually, as a consequence of an emerging scholarship primarily focused on women, that social scientists are coming to appreciate the full significance of gender in the organization of social life. As part of this work, the role of gender is in the provision of home care for chronically ill children has received greater attention. It is now well documented that women perform the majority of health-related home care labor (Breslau, 1983; Glazer, 1990; Zimmerman, 1993) and, if men share, there is a gender division in the types of caregiving work performed (McConachie, 1986). Evidence also suggests that gender affects how parents adjust to and cope with the diagnosis of childhood chronic illness (Powers, Gaudent, & Powers, 1986), levels of caregiver stress (Kazak & Marvin, 1984), and how caregivers define their roles and manage their tasks (Ungerson, 1987). An aspect of gendered caregiving that has not been explored, however, is the extent to which gender norms may influence perceptions of illness and the family caregiving experience. Our observation that mothers' caregiving labor is influenced by the sex of the child may help clarify how caregivers define, manage, and perform their work. This is especially important because caregiving work falls primarily to women and is likely to significantly affect their participation in domestic and market labor, their personal lives, and their sense of well-being. Yet, while greater understanding of the time and energy caregivers invest in their work is needed, research has been sparse and difficult to obtain. One problem arises from the wide variety in types and severity of chronic illnesses and the view of caregiving work as being defined by and inflexibly tied to the particular medical diagnosis. The caregiving experience cannot be adequately assessed by simply counting the number of medical tasks performed or the time consumed by those tasks, because such an approach does not capture the more subjective and experiential elements of caregiving work (Hasselkus, 1988). Also, caregiving work for sick children is an extension and alteration of socialization work. Socialization and caregiving are so interrelated that it is often impossible to draw clear distinctions between the two areas of labor. Thus, much of the work performed by caregivers is hidden and taken for granted. Our research takes a qualitative approach to understanding the caregiving experiences of 32 mothers who are the primary caregivers for children with sickle cell disease (SCD), a genetically transmitted chronic illness. This method enables us to examine in depth the significance of the illness and the process of caregiving from the caregivers' perspectives. The mothers we studied organized most of their caregiving work around the avoidance and management of pain crises, which entailed monitoring fevers, infections, and the everyday activities of their children. In the following analyses of mothers' descriptions of their caregiving, we pay particular attention to how SCD is constructed, shaping and limiting the lives of both caregivers and their children. THE SOCIAL CONSTRUCTION OF ILLNESS BEHAVIOR While the nature of the medical diagnosis and biological vagaries of a disease have a major impact on how the illness affects our lives, medical sociologists have shown that an array of social factors also affect the illness experience. Symbolic interactionist and social constructionist theories emphasize how individuals, within an interpersonal context, negotiate and assign meaning to the illness experience (Mishler, 1981). Mechanic (1982) referred to the definition, interpretation, and response to physical symptoms as illness behavior Illness behavior is known to be influenced by the family's health care attitudes and behaviors (Shapiro, 1983), ethnic culture (Zborowski, 1952; Zola, 1966), social class (Kupst & Schulman, 1988), support systems (Barbarin, Hughes, Chesler, 1985), family roles and relationships (Patterson, 1985), and gender expectations (Miles, 1991). …