In 2011/12, a Stigma Index study was conducted in OR Tambo District in the Eastern Cape. This study, led by the National Association of People Living with HIV/AIDS, in partnership with the Eastern Cape AIDS Council (ECAC), OR Tambo District AIDS Council, Rural Urban Livelihoods, Eastern Cape Provincial Council of Churches, House of Traditional Leaders, Transcape, Siyakhanyisa Home Based Care, ARASA, Ekurhuleni Pride Organizing Committee and UNAIDS, aimed to explore levels of HIV-related stigma in the district.
The study was undertaken between October 2011 and August 2012 and involved a sample of 799 people living with HIV drawn from three local municipalities in OR Tambo District: King Sabatha Dalindyebo, Nyandeni and Ngquza local municipalities.
The priority findings of the Stigma Index showed that high levels of family and community-level stigma, discrimination exist, as well as self stigma. In addition, access to information on sexual and reproductive health rights are limited, as well as knowledge and use of rights, laws and policies.
Family and community-level stigma and discrimination took the form of gossip, harassment and abuse and physical threats. It also included exclusion from social and family gatherings and to a lesser extent, faith-based activities. Stigma and discrimination were directed towards people living with HIV by parents, spouses, family and community members.
The study found high levels of internalised stigma, which manifested in feelings of shame, self-blame and in 10% of cases, suicidal thoughts and feelings. Internalised stigma resulted in deliberate isolation from others, decisions on accessing services, relationships, marriage and children. Ironically, though, 50% of respondents reported providing support to other people living with HIV. An encouraging finding was that a large number of respondents said that disclosure of their HIV status was empowering.
After families and communities, the next most common experience of stigma and discrimination and violation of rights for people living with HIV occurred in health care settings. Many had experienced barriers to accessing services through denial of health care by service providers, HIV testing done without consent and counselling and even incorrect and improper advice regarding child bearing.
Internalised stigma resulted in deliberate isolation from others, decisions on accessing services, relationships, marriage and children.
Many of the respondents were unaware of laws that protect people living with HIV and the vast majority did not seek redress for human rights violations.
The response to the findings is that ECAC, along with the relevant partners, has developed a short and medium term framework aimed at reducing stigma and discrimination in the priority areas identified in the findings. This includes empowering the community to not only reduce levels of stigma and discrimination, but also actively supporting people living with HIV. The framework outlines programmes which promote access to justice for people who experience discrimination and increased awareness of rights among people living with HIV. A critical aspect of the framework is to train and sensitise health care workers on HIV-related rights and non-discrimination.
“The findings from the Stigma Index and the evidence they have produced for the framework provide a good basis for the national Stigma Index. We we are hopeful that we will be able to make great inroads in addressing stigma and discrimination as a result,” said Dr Fareed Abdullah, CEO of SANAC.