Academic journal article Health and Social Work

Women Living with HIV/AIDS: The Dual Challenge of Being a Patient and Caregiver

Academic journal article Health and Social Work

Women Living with HIV/AIDS: The Dual Challenge of Being a Patient and Caregiver

Article excerpt

The Centers for Disease Control and Prevention (CDC, 1995) reported that more than 58,000 American women had been diagnosed with AIDS by 1994. The number of women worldwide infected with HIV was at least 4.7 million in 1992 (Mann, Tarantola, & Netter, 1992). The percentage of American women with AIDS has continued to increase; more than 18 percent of all AIDS cases diagnosed in the United States are women (CDC, 1995). AIDS is now the fourth leading cause of death among American women between the ages of 25 and 44 (National Center for Health Statistics, 1994), and the rate of HIV infection is increasing more rapidly in women than in any other population segment (Ickovics & Rodin, 1992). These increases have been especially pronounced among impoverished women of color (McCray, Onorato, & Field Services Branch, 1992; Quinn, Groseclose, Spence, Provost, & Hook, 1992). Although cases of HIV/AIDS in women were reported as early as 1981, it was not until late 1990 that women were routinely included in clinical studies and attention was focused on gender-specific HIV issues (Nakajima & Rubin, 1991).

Women of color living in major urban areas have been particularly affected by the HIV/AIDS epidemic. As of 1994, 76 percent of all reported AIDS cases in women were in women of color; 54 percent were African American, 20 percent were Hispanic, and about 2 percent were Asian or Native American (CDC, 1994). Women with HIV infection are often faced with socioeconomic stressors that exacerbate the negative consequences of HIV for physical and mental well-being (Cochran, 1989; Osmond et al., 1993; Quinn, 1993; Sobo, 1993). The stressors on HIV-infected women with few financial resources are often compounded by the multidimensional responsibilities of being the family's primary caregiver. Women with HIV infection usually live in high-crime areas, can obtain only low-wage jobs with few benefits, are undereducated, and rarely have access to health care facilities except for emergency services (Chu, Buehler, & Berkleman, 1990; Ickovics & Rodin, 1992; Lifshitz, 1990-91; Wofsy, 1987). Recently diagnosed mothers are faced with difficult issues of disclosure, role identity, and parental responsibilities.


Relationship Disruption

Women who share their HIV or AIDS diagnosis with family or friends risk stigmatization (including reactions of fear, shock, and blame), isolation (as a result of others' fears of casual transmission and the possibility of desertion), and potential loss of self-esteem (lack of confidence and self-blame). Keeping the diagnosis of HIV a secret may hinder a woman's ability to develop effective coping strategies and leave her vulnerable to fear, anger, and depression. These problems may worsen as the progression of HIV disease creates significant changes in behavior, attitudes, and physical appearance.

Two studies found stigma and shame to be prominent themes in determining women's HIV disclosure to medical professionals, family, and friends (Chung & Magraw, 1992; Florence, Lutzen, & Alexius, 1994). Women in these studies frequently reported health care professionals to be hostile, fearful, and lacking in knowledge; HIV-related gynecological complications often had to be explained by the patient to the physician. The women reported that in spite of their HIV infection, family members expected them to remain in the role of primary child and family caregiver. In addition, the women often feared a more rapid disease progression, no longer viewed themselves as attractive or desirable, felt that their reproductive rights were socially disapproved, and feared they could lose custody of their children if others became aware of their HIV status.

The need for better understanding of the psychosocial needs of women with HIV infection is widely recognized. Women living with HIV often report a desire for support groups or individual therapy to deal with the depression, hopelessness, and anxiety surrounding the unpredictability of disease progression. …

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