SOUTH AFRICA: Voices of mothers on preventing HIV transmission

JOHANNESBURG, 11 Apr 2005 (PLUSNEWS) - It's been three years since the courts ordered the South African government to provide nevirapine to HIV-positive pregnant women in public health facilities, but very little is known about the experiences of the HIV-positive women on the programme.

The country's controversial prevention of mother-to-child transmission (PMTCT) programme has received widespread media coverage over the past few years, largely focusing on the conflict between AIDS activists and the government, and hardly featuring the voices of those directly affected.

New research into the challenges facing mothers living with HIV/AIDS - conducted by the University of Witwatersrand's HIV/AIDS and the Media project - found that "the prevailing climate around HIV/AIDS is still one of secrecy", and many women on the programme were failing to disclose their status, fearing rejection and isolation.

Presenting the preliminary findings last week, the project's research fellow, Philippa Garson, related the experiences of Thoko, a single mother of four who was rejected by her mother and sisters and kicked out of her home.

"My mother just said, 'Hey she's got AIDS, she's got AIDS ... I don't want her in my house'... I was crying; I asked myself, 'where must I go now?" the study quoted Thoko as saying.

Despite the advances made in providing treatment and creating awareness, "the enormous amount of stigma" posed huge obstacles to expectant mothers using PMTCT services.

Formula feeding reduces the risk of transmission via breast milk by one-third, and women enrolling in the programme are advised to bottle-feed. But the women Garson interviewed in the Johannesburg township of Soweto said as soon as they were discovered to be bottle-feeding, "it's out there, everybody knows you have HIV".

The women "went to great lengths to disguise the government-supplied infant formula", going so far as to decant the contents of the orange tin, described as "AIDS milk", into another container.

When her grandmother tried to force her to breastfeed, a woman whose baby and ex-partner were both HIV-positive even resorted to cutting herself with a razor blade "so the blood will come out, and I tell her that there is blood in my breast milk."

Women also suffered intense anxiety and guilt about their baby's status, finding it more difficult to deal with than their own, the study revealed.

HIV placed "tremendous strain" on relationships, as women said they were unfairly blamed for bringing HIV into the home, while men refused to take responsibility for their own role; tensions caused by negotiating safe sex made many women lose interest and enjoyment in sex.

"An energetic public campaign to stamp out stigma, intensive educational programmes targeting men, and greater media reporting on the human face of illness could do so much more to offer support and eradicate stigma," the preliminary report concluded.

For more information: www.journalism.co.za

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