Women, HIV and Stigma

Keywords:

• gender roles
• HIV-infected women
• HIV prevention
• inequality
• internalized stigma
• psychosocial effects of HIV
• southern Africa

While there is optimism that HIV and AIDS are stabilizing in many countries, there is still concern about the disproportionate spread of HIV among women in Africa. In southern Africa women account for an estimated 58–62% of all HIV infections [1]. In fact, in some areas in South Africa more than one in three women aged 25–34 years are living with HIV [2]. Women have an important role in communities as caregivers and are considered the backbone of economic development, especially in rural areas [3]. The AIDS epidemic not only affects physical health, but erodes the psychosocial well-being of communities. In 2002 the then Secretary-General of the UN, Kofi Annan, stated that women should be at the center of the fight against HIV and AIDS [3]. In this paper, dilemmas created by women‘s vulnerability to HIV and their reaction to stigma as well as suggestions for future interventions will be highlighted.

“In Africa, AIDS has a woman‘s face”

– Kofi Annan [3]

Women‘s vulnerability

Women in Africa are more vulnerable to HIV infection than men, mainly as a result of biological susceptibility, low socioeconomic status, culturally defined gender roles and high levels of domestic violence. Women‘s economic dependency on a male partner for survival makes them vulnerable because they do not have the decision-making power to protect themselves against HIV [4]. Inequality in gender relationships results in different behavioral norms for men and women. While women are expected to be monogamous and satisfy the desires of their male partners, communities often approve or encourage men to have multiple sexual partners [4–6]. Additionally, there is cultural resistance to condom use [5], and women are not supposed to insist on condoms when their partners refuse [7]. There is also strong evidence that men are likely to resort to violence to express dominance and that many women are coerced into sexual activity against their wishes [8]. These factors create a context of escalated risk for women to contract HIV, even from their long-standing partners. Kalichman et al. confirm this by concluding that women‘s risk of HIV is a product of their partners‘ characteristics and male-dominated relationships [9]. Prevention programs directed at women are therefore not effective as women do not have the decision-making power when it comes to implementation. Couples interventions or programs including both genders may be more effective.

Women‘s reaction in the face of stigma

HIV-related stigma in an African context can be traced back to a series of shared beliefs that being HIV-positive is the consequence of some kind of indecent sexual behavior, religious punishment and lack of adherence to cultural norms [10]. People living with HIV are often rejected, abandoned or abused and considered ‘socially dead‘ [11]. Fear of being stigmatized causes a barrier to HIV testing, disclosure of status and willingness to get treatment. It enhances secrecy and denial, which are catalysts for further HIV transmission.

Communities are often less tolerant of women living with HIV/AIDS than of their male counterparts [4,12] because the women are considered to be promiscuous, dirty, irresponsible or bewitched [10,13]. Women with HIV thus experience ‘double stigma‘ with greater social disadvantages [6]. Additionally, women are frequently wrongly blamed as the main transmitters of the disease [14] because they get tested at healthcare facilities more often and have to bring the verdict home [4,6,15].

In our research in a South African community involving 609 HIV-positive women diagnosed during pregnancy, we found that they perceived the community to be highly stigmatizing [16]. The degree to which they perceived others to be stigmatizing was directly linked to their own internalized stigma (own negative feelings and fear of being stigmatized). That means that they most probably internalized aspects of the perceived stigma into their own self-evaluation [17]. Half (49%) of the women indicated that they felt ashamed of their HIV status, 33% blamed themselves and 27% saw HIV as punishment. More than half of the women felt uncomfortable interacting with others (63%) and expected others to isolate them (49%). High levels of internalized stigma were significantly associated with increased levels of depression, decreased self-esteem and perceived social support, as well as lower levels of disclosure of HIV status to partners [16,18]. These partners, who may or may not be infected as well, subsequently do not get tested and can continue to spread HIV unknowingly. Internalized stigma thus has a negative effect on women‘s ability to protect themselves and their partners from HIV transmission.

To adhere to the cultural norm that women‘s value is determined by their capacity to have children [19], many women do not disclose their status so that they can have more children and be respected. At the same time, society negatively judges HIV-positive women who get pregnant. If the baby is born healthy, the mother uses it as proof that she is healthy. If the baby is infected, the mother has to admit her status and accept the community‘s judgment [20]. This adds to the stigma that women are already experiencing.

Because of the subjective nature of stigma, there is no indication of the ‘real‘ stigma levels in a community. Enacted stigma could give an indication of people‘s direct experiences of stigmatization and discrimination. Approximately 25% of the women who reported that they disclosed their status reported some forms of subtle stigma, although 13% experienced verbal abuse, 4% were threatened with death and 9% were abandoned by their partners [21]. It may seem that infected women overrate the level of perceived stigma, but the experience of enacted stigma may be disguised by women‘s selective disclosure.

In a longitudinal analysis over 18 months, women‘s experience of internalized stigma progressively decreased over time [17]. This was accompanied by increasing levels of active coping; when active coping was high, the women experienced less internalized stigma and vice versa [18]. Active coping was associated with low internalized stigma, low depression, high self-esteem, high positive social support, good health and with knowing someone who is HIV-positive. On the other hand, avoidant coping was associated with low HIV knowledge, low self-esteem, high internalized stigma and high depression scores [18].

To protect themselves from stigma and to adhere to cultural norms, many HIV-positive women would continue to engage in high-risk behavior. To assist them to take responsibility for their sexual behavior, it is thus necessary to help them to learn active coping strategies, to disclose their status to their partners and to negotiate partner testing and protective sexual behavior.

Successful interventions

A few successful interventions to address women‘s coping with HIV and internalized stigma were published recently. In resource-limited settings such as southern Africa, support group intervention is a cost-effective strategy to reach many infected women [22]. In our research, a support group intervention facilitated by peer group leader assisted women in a group context to understand HIV, to deal with their emotional reactions, to develop healthy ways of coping and to disclose their status and negotiate safe sex to protect themselves and their partners. We found that participation in the support groups resulted in higher levels of active coping, improved self-esteem and higher levels of status disclosure compared with a control group. After 6 months, women in the control group developed to the same level as women who were part of the intervention [22]. Group interventions tailored for HIV-positive women can thus accelerate the process of adjusting to one‘s HIV status, which is a prerequisite for responsible sexual behavior.

Suggested large-scale interventions

We now know that to work with women with HIV is only a partial solution to a much bigger community problem. To address (perhaps unrealistically) high levels of perceived community stigma and women‘s fear of disclosure, community interventions involving leaders and community-based organizations are needed. Our research in a South African community found that people who knew someone living with HIV were less stigmatizing [23]. We also found that community stigma decreases over time as HIV knowledge increases and more people knew someone with HIV [17]. The goal of community interventions should therefore be to increase openness about HIV and demonstrate public support for people living with HIV. Antistigma campaigns should contribute to normalizing HIV but should still emphasize the seriousness of the disease, so that people can come forward for testing and treatment and protect themselves from HIV. A less stigmatizing community will assist public health efforts in containing the disease.

Another suggested community-wide intervention is to address women‘s vulnerability to HIV. That would involve socioeconomic uplift programs and attention to harmful gender inequality. HIV prevention programs should take a step to move beyond the individual, to change current societal norms that contradict prevention efforts using every method of influencing available. This will involve changing the underlying drivers of risk and structural barriers to behavior change to empower all people to take control over their own sexual risk behavior. Cultural practices that perpetuate gender inequality that is harmful to women, such as traditional gender roles and acceptance of gender-based violence, should be challenged and positive practices should be promoted. Women‘s vulnerability to HIV can be changed by targeting men and aspects of the construction of masculinity [24]. Such interventions could assist women in protecting themselves from HIV and could turn the epidemic around. Although HIV and AIDS is a chronic medical condition that affects all aspects of an individual‘s life, it will take a complete change in the social fabric of a society to contain and manage the disease.

Future perspective

In countries with large-scale HIV epidemics, there is no way to determine how many women (or men) are infected or how to reach them. Routine testing at clinics and testing pregnant women is only one way to reach more people. There needs to be various and more creative strategies to identify the HIV-infected of both genders to be able to contain the infection.

All interventions, including those for HIV-positive patients, have side effects and counter-effects. Antidiscrimination laws protect HIV-infected individuals from stigma. Their right to freedom and self-determination is protected, but this can come at the cost of the human rights of the uninfected and the collective well-being of the society; there is no legal protection for HIV-negative people. The infected community is encouraged, but is under no obligation, to disclose their status and to protect their sexual partners from HIV. There should be a legal framework that balances the rights and obligations of the infected and uninfected to protect society.

Interventions directed at HIV-infected individuals could affect the uninfected in negative ways. In some communities, women were jealous of the grants and programs directed at HIV-positive women and their babies while they had no incentive to stay negative [Visser M et al., Unpublished Data]. The counter-effect of HIV care and treatment programs needs to be considered to confirm the value of protection against HIV for other community members.

Financial & competing interests disclosure

The author has no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

No writing assistance was utilized in the production of this manuscript.