17 August 2006

Stigma stops HIV disclosure

A South African study has found that a significant number of HIV positive people do not disclose their HIV positive status to their partners.

A group of researchers from South Africa's Human Sciences Research Council is part of an ambitious, international study to develop or adapt theory-based behavioural risk reduction interventions to reduce the risk of HIV transmission by people living with HIV and Aids who know their status.

“Sub-Saharan Africa is home to an estimated 25 – 28 million people living with HIV/Aids (PLWHA),” said Dr Leickness Simbayi, project director and coordinator for four of the eight African countries covered by the study. “But most behavioural studies have focussed on the general population and research into interventions to reduce risk behaviour, have been neglected. This study is one of the first to focus on the PLWHA themselves.”

The results of the first phase of the study was presented at a satellite session of the XVI International Aids Conference in Toronto, hosted by the Social Aspects of HIV/Aids Research Alliance (SAHARA). The session, which was held on August 17, looked at ways of managing the complexity of the HIV/Aids challenge in sub-Saharan Africa. The study is being undertaken by researchers from Botswana, Lesotho, South Africa, Swaziland, Kenya, Rwanda, Burkina Faso, and Senegal.

“We know that a substantial (but unknown) number of stable sexual relationships are between partners where one is HIV positive, but does not tell the other partner,” Dr Simbayi said. “Stigma is a very real part of these people's lives. Disclosing one's HIV status can be risky.”

“For example, our study in South Africa showed that 40% of people living with HIV/Aids had experienced discrimination and one in five had lost their homes or their jobs because of their HIV status.”

“Add into the mix the fact that many PLWHA consider their HIV status as secondary to the other problems they face in their daily lives - such as poverty, unemployment and gender-based violence – and you begin to understand why some people are not disclosing their HIV status,” he said.

The study also highlighted the need for HIV prevention interventions for people who have tested HIV positive.

Anonymous surveys were completed by 413 HIV positive men and 641 HIV positive women, most of whom (73%) were younger than 35 years old, African (70%), unemployed (70%), and unmarried (75%), whilst nearly half (49%) had been hospitalized for HIV-related conditions (49%) and exactly half (50%) were taking antiretrovirals (ARVs). Among the 903 (85%) participants who were currently sexually active, 378 (42%) indicated that they had sex with a person that they had not disclosed their HIV status to in the previous three months. Participants who had not disclosed to all of their sex partners were significantly more likely to have multiple sex partners, HIV negative partners, partners of unknown HIV status, and unprotected intercourse with non-concordant sex partners.

Having not disclosed HIV status to partners was also independently associated with having lost a job or a place to stay because of being HIV positive and feeling less able to disclose to partners.

The gay community was even more marginalised, with 45% of the HIV positive gay men interviewed reporting that they had lost their homes or their jobs because of their HIV status. Internalised stigma was found to be most prevalent among this group, with 58% hiding their HIV status from others and over 45% feeling guilt or a sense of shame because of their HIV status.

Interventions needed
Dr Simbayi's team concluded that interventions are needed in South Africa to reduce Aids stigma and discrimination and to assist PLWHA to make effective decisions whether to disclose their HIV status and to practice safer sex regardless of disclosure decisions.

There is also an urgent need for social reform and interventions to reduce Aids-related stigma and discrimination at societal level.

It is critical that interventions also address some of the concomitant social conditions co-existing with Aids such as gender discrimination, homophobia, racism, xenophobia, unemployment, hunger and poverty.

Two interventions have been selected as possible candidates for adaptation in sub-Saharan Africa. These are Healthy Relationships (which is based on social support groups and was developed by Professor Seth C. Kalichman and associates of the Centre for Health, Intervention and Prevention (CHIP) in the Department of Psychology, University of Connecticut), and the clinically-based Options for Health (developed by Professor Jeffrey Fisher and associates from the same centre).

In Phases 2 and 3 of this study which are about to commence, these interventions will be adapted and their effectiveness tested.


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Dr Sindisiwe van Zyl qualified at the University of Pretoria in 2005. She is a patients' rights activist and loves using social media to teach about HIV. She is in private practice in Johannesburg.

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