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Coping with HIV/Aids: A case analysis of the psychological experiences of poor, HIV positive mothers and women caregivers on HAART

René Brandt

CSSR Working Paper No. 120

Centre for Social Science Research (CSSR)

June 2005

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Background and significance

While HIV/AIDS was once viewed as a disease of homosexual men and intravenous drug users, the number of women with HIV has been increasing worldwide, particularly in areas where heterosexual sex is the dominant mode of HIV transmission (UNAIDS, 2004c). Globally, nearly half of all infected persons are women, with women in Africa representing nearly 60% of infected persons across all age groups, and 75% in the 15 to 24 year age band (UNAIDS, 2004b). Figures for South Africa show that more than a quarter of pregnant women in six of the nine provinces are HIV positive (Department of Health, 2004), with the projected national adult prevalence rate for 2005 at 25.6%1 (ASSA, 2002).

Not only are women overrepresented by the numbers, it is now widely recognised that the epidemic has a disproportionate social and economic impact on women. The presence of AIDS in households and communities in South and southern Africa has resulted in an increase in both the number of female-headed households and the economic strain experienced by those households (UNAIDS, 2004b). Survey data indicates that between half and three-quarters of households in South Africa are female-headed, with only 12.5% of these women having a partner present in the home (UNICEF, 2003; Steinberg, et al. 2002; Ziehl & Burns, 2004).

Also significant is the fact that these women frequently experience an increased care burden, since both sick men and women tend to be cared for by female relatives, and women are more likely than men to take in orphaned children (UNAIDS, 2004a). The large majority of these women will also continue to participate in the “care economy”, carrying out unpaid care and other domestic work in the household, even if they themselves are sick with AIDS (Steinberg et al., 2002; UNAIDS, 2004a).

Consequently, a large number of women, many of them with young children, will have to negotiate the dual role of being HIV positive and being a caregiver in addition to the economic demands placed on them by virtue of living in poor communities in which they are often responsible for meeting the survival needs of their households.

While mental health has typically been neglected in developing countries (Desjarlais et al., 1995), the multiple stressors associated with poverty, HIV/AIDS and caregiving quite clearly places these women at increased risk for mental health problems. Even in communities where multiple stressors are less likely to be present, research has found elevated levels of depression and other mental health problems amongst HIV positive men and women (Freeman, 2004; Struthers, 2002 in Freeman, 2004). Further, several controlled studies have documented higher levels of depression amongst HIV positive than HIV negative women (Jones et al., 2001a; 2001b; Miles et al., 2001; Moneyham et al., 2000; Morrison et al., 2002).

Studies conducted both in South Africa and abroad have also found that HIV positive women have a particularly strong need to maintain their parental status, and that many will continue their role as mother and caregiver, even at the expense of their own physical and emotional well-being (Broun, 1996; Ciambrone, 2003; Freeman, 2004; Hackl et al., 1997; Soskolne, 2003). The need to maintain this highly valued role is sometimes achieved through women’s silence about their HIV status, potentially resulting in relative isolation and a lack of support (Freeman, 2004). This is likely to pose further challenges to the women’s psychological well-being.

The implications for women’s mental health have been documented in studies with asymptomatic and symptomatic women, as well as those on treatment. However, some studies fail to make the potentially differentiated experiences of these groups of women clear. Consequently, this remains an area for further research.

With the advent of highly active antiretroviral therapy (HAART), it has been fairly widely assumed that the psychological experiences of women living with HIV/AIDS would be significantly altered in a positive manner (Siegel et al., 2004). However, the limited research available does not unequivocally support this contention (Bogart et al., 2000). Amongst a sample of HIV infected women in New York, no significant differences in levels of psychological distress were reported before and after the advent of HAART (Siegel et al., 2004). Rather, other studies have shown that treatment is likely to change the nature of depression (and other mental health problems) rather than preventing them altogether, or significantly decreasing their prevalence (Freeman, 2004). This might be particularly true for persons living with HIV/AIDS (PLWHA) who have been very ill and dysfunctional prior to commencing treatment (as opposed to relatively asymptomatic), and may therefore experience more real and perceived difficulties in managing their lives with the illness in the long-term (personal communication, Desireé Michaels, July 2004). Further, in addition to the changing nature of mental health problems, the treatment itself, with its numerous potential side-effects, can be a leading cause of psychological problems.

  1. This figure is for the population between the ages of 15 and 59 years.

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