Gender Violence & HIV: Perceptions and Experiences of Violence and Other Rights Abuses against Women Living with HIV in the Eastern Cape, KwaZulu Natal and Western Cape, South Africa

"If I knew what would happen I would have kept it to myself..."

While violence against women exacerbates women's risks and vulnerabilities to HIV exposure and transmission, a positive HIV status further exacerbates women's risks and vulnerability to violence, abuse, and other rights violations. This is the contention of the South African civil society organisation AIDS Legal Network (ALN), which conducted research on perceptions and experiences of violence and other rights abuses against women living with HIV in South Africa. Supported by the United Nations (UN) Trust Fund to End Violence against Women, which is managed by UN Women on behalf of the UN system, the report was launched across the country during the 16 Days of Activism.

The study design is based on the principled understanding that HIV-positive women's experiences of violence and other rights abuses are intrinsically linked to their communities' perceptions of the realities, rights, and needs of women living with HIV. The study took place in New Brighton (Eastern Cape), Illovo (KwaZulu Natal), and Beacon Valley and Tafelsig (Western Cape). In total, 2,354 community questionnaires were administered; six focus group discussions with women living with HIV, as well as service providers, were facilitated; 41 women were interviewed; and 80 incident forms were collated between April and September 2012.

Amongst the study's findings:

• The majority of respondents (78%) affirmed that women need to disclose their HIV-positive status. "The data arguably reflects that women not only see a greater need for HIV disclosure to their families, as compared to partners, but also seems to indicate that women are more aware of and knowledgeable about the potential negative consequences associated with partner disclosure. Men, however, are far more likely to believe in the need for partner disclosure, which, among other, confirms the common assumptions that it is women's responsibility to disclose to their partners - although women may fear the consequences of such disclosure - and that it is the responsibility of the person knowing to be living with HIV to 'protect' the partner, as compared to both partners being responsible for the prevention of HIV."
• The data suggest generally lower levels of awareness of the occurrence of HIV-related stigma, discrimination, and other rights abuses in families and healthcare settings, as compared to awareneess of rights abuses and violence against women living with HIV prevalent at the community level and the workplace.
• Acknowledging the risks of rights violations within clinics and hospitals, the data further seems to suggest that services provided for women living with HIV by non-governmental organisations (NGOs) and community-based organisations are better positioned to respond to the realities, rights, and needs of women and thus, highlighting the need for interventions aimed at enhancing women's access to healthcare services free of stigma, discrimination, and other rights violations.
• Communities' call for more women living with HIV to take legal actions as and when they have been violated and abused is arguably an indicator of communities' lack of awareness and understanding of the many challenges women encounter when attempting to seek legal redress.
• In the words of the study's leader: "The severity and extent of violence experienced by women on a daily basis and women's strength in sharing these horrific stories of violence is what was most striking to us. I think that the research also demonstrates the complete disconnect between women's realities and the perceptions of their communities. The communities tend to believe that women are supported by their families and service providers when their HIV status is disclosed, which is completely contradictory to women's lived reality of discrimination and abuse by both family and service providers alike. Even though many community members have a certain degree of awareness of some of the risks of rights violations faced by women when their HIV status is disclosed, they still tend to believe that women, despite the risks, still have to disclose her status."

In summary, the data highlight the need to design and implement programmes and initiatives that are based on and informed by women's experiences of the multiple causes, forms, and effects of HIV-related violence in their lives, so as to ensure effective responses to the realities, risks, and needs of women living with HIV. Moreover, the study reveals the urgency to redesign service provision, as women participating in the study experience access to healthcare as an element in the continuum of violence perpetrated against them. Recognising the various risks associated with women's HIV disclosure, the data seem to raise the question as to the potential role that societal expectations of, and pressures on, women to disclose their HIV status play in the continuum of abuse and violence women experience in all aspects of their lives, irrespective of whether or not women themselves decided the time of and the way in which their HIV status becomes known.

A number of specific recommendations are provided. For example: "Build capacity on the various forms and effects of violence on women, as well as the rights and needs of women living with HIV, among service providers and service users so as to ensure access to services free of violence and abuse."

ALN plans to use its findings and the knowledge generated to engage with health care providers and to try to influence the way services are provided. The organisation also wants to use the research to influence policymakers and inform the national response to women and HIV in South Africa. They will also use the research as the basis for community-based interventions to raise awareness about the rights of women living with HIV. Furthermore, South African Positive Women Ambassadors say they will use the research for advocacy at the grassroots level.