I am PREGNANT and HIV positive

Project Masihambisane, Zulu for ‘let's walk together', is an effectiveness trial aimed at supplementing the government-based prevention of mother-to-child transmission of HIV (PMTCT) programme with clinic-based ‘mentor mothers'. Alister van Heerden sketches the pilot project.

For the majority of women, falling pregnant evokes strong feelings of joy and anxiety. But for too many South African women, finding out that they are pregnant is often accompanied by a second, less welcome, surprise - the discovery that they are not only carrying a child, but also the HI virus.

Depending on the district and province, HIV prevalence among pregnant South African women ranges between 5-45%. For many of these expectant women, an even greater concern is that they may inadvertently transmit the HI virus to their unborn child.

But there is hope in the form of the PMTCT programme, which shows that antiretroviral therapy, special care during labour, and an informed feeding choice can decrease the risk of transmission from around 25% to less than 5%.

At the same time a woman's ability to access medication, care, knowledge and support rest heavily on her willingness to test for HIV, and her ability to disclose her HIV status to family, friends and health professionals. For it is only through a combination of testing and disclosure that treatment, support and care can be optimally brought together.

Project Masihambisane is an effectiveness trial aimed at supplementing the government-based PMTCT programme with clinic-based ‘mentor mothers' who give support to HIV-positive mothers.

This trial shows that of the first 770 HIV-positive women enrolled into the study through clinics in KwaZulu-Natal, 45% had learned their HIV status for the first time within the last three months. Roughly a quarter had known their status for more than one year.

For it is only through a combination of testing and disclosure that treatment, support and care can be optimally brought together.

Unsurprisingly, women who had known their HIV status for longer were more likely to have disclosed than women who had only recently learnt their HIV status. Of these 770 women, 360 (40.6%) report having disclosed their HIV status to someone else.

For the 360 women who report having disclosed their HIV status, the researchers explored in more detail to whom the women chose to disclose, and the reaction that they received from the person/s in response to their disclosure. Most commonly, women chose to disclose their HIV status to their partner (65%). This was followed by a non-parental family member, for example, a sister (43%), friends (33%) and mothers (31%). Pregnant woman were least likely to disclose to their fathers and their spiritual leaders, with only 5% of the women choosing to do so.

Interestingly, among those women who chose to disclose, it is not their partner who is most likely to respond favourably to their revelation. In fact, partners are statistically more likely to respond negatively to the news. This is in contrast to friends and mothers, who are statistically more likely to respond supportively to a disclosure. Other family members are also more likely to respond supportively than negatively. Although least likely to be confided in, spiritual leaders are statistically more likely to be supportive, while fathers show no significant trend in how they respond to the news.

In fact, partners are statistically more likely to respond negatively to the news. This is in contrast to friends and mothers, who are statistically more likely to respond supportively to a disclosure.

Learning concurrently that one is pregnant and HIV positive is an extremely difficult experience. Further, despite success in preventing vertical transmission, for about 60% of women living with HIV, their access to prevention and treatment programmes is curtailed by nondisclosure. Even though the majority of people respond in a supportive manner, the opportunity for positive social support from friends and family is reduced through fear of the anticipated stigma associated with disclosure. Until society moves beyond the dread, fear and stigma attached to the HI virus, HIV-positive mothers and their infants - and their partners, whose positive status may remain unrecognised - will be denied what is rightfully theirs - long and healthy lives together.

Alistair van Heerden is a project manager in the Child, Youth, Family and Social Development programme.