Academic journal article Social Work

Living with HIV/AIDS: The Voices of HIV-Positive Mothers

Academic journal article Social Work

Living with HIV/AIDS: The Voices of HIV-Positive Mothers

Article excerpt

Children who have lost their parents to AIDS have been referred to as "AIDS orphans" in both the popular press and professional literature (Dane & Levine, 1994; Levine & Stein, 1994; Michaels & Levine, 1992; Ritter, 1996). There is no other group of children who have been categorized as "orphans" solely on the basis of the disease from which their mothers died. For example, children whose mothers die from cancer, a disease that kills more women ages 25 to 44 annually than AIDS (Centers for Disease Control and Prevention [CDC], 1996), are not referred to as "cancer orphans." The implication of the term "AIDS orphans" is that parents with AIDS have no plan or support system to provide for the care of their children in the event of their deaths. Although this may be the case for some families, it is not known how widespread this phenomenon is or to what extent HIV-positive mothers have given thought to and planned for the future care of their children. The study reported here investigated the experiences of HIV-positive mothers with the system of services designed to help them; how they coped with the infection, particularly as it relates to parenting; and their concerns, preferences, and plans for the future care of their children.

Review of the Literature

It has been estimated that between 72,000 and 125,000 children under age 18 will have lost their mothers to AIDS by 2000 (Michaels & Levine, 1992). The largest population of women who die from AIDS are African American (CDC, 1996), many of whom are poor and reside in urban communities (Chu, Buehler, & Berkelman, 1990). The needs, characteristic, and experiences of HIV-infected women have been chronicled in the literature by numerous researchers (Campbell, 1990; Weiner, 1991; Weitz, 1993). Infected women have been described as isolated, unsupported (Chung & Magraw, 1992; Land, 1994), powerless, and invisible (Weiner, 1991; Weitz, 1993), primarily because of their status as women and the fact that the majority of HIV-infected women are of color and poor, leading to their further devaluation. Ward (1993) asserted that for poor women, HIV/AIDS is but another life-threatening disease that parallels other poverty-related health conditions.

In addition to enduring discrimination and poverty with its attendant stresses, many women with HIV/AIDS are also the primary caregivers for their children. Clinicians and researchers report that infected mothers are concerned about issues of disclosure, infecting their children, planning for the future of their children, (Faithful, 1997) their lack of financial resources and housing (Gillman & Newman, 1996), as well as the stigma associated with HIV/AIDS and the paucity of accessible supportive services (Hackl, Somlai, Kelly, & Kalichman, 1997). Furthermore, if their children were infected with the virus as a result of perinatal transmission, mothers can experience overwhelming guilt (Land, 1994). The confluence of these factors creates a situation in which some mothers will bear the burden of providing for their children with very limited resources, caring for a terminally ill child, and coping with guilt and self-blame, at the same time their own health is deteriorating.

Whereas the stresses HIV-positive mothers confront are well-documented, comparatively little is known about the resources women draw on to cope with the virus or how they manage their parenting responsibilities and think about the future for themselves and their children. The researchers who have studied the coping mechanisms women infected with HIV use have found that strong social and family support networks (Florence, Lutzen, & Alexius-Birgitta, 1994) and prayer and rediscovery (Kaplan, Marks, & Mertens, 1997) are salient components of positive coping. It is important to document both the needs and the resources of mothers with HIV/AIDS, so that a system of care that is responsive and builds on client strengths can be fashioned. …

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