HIV, Stigma and Parent-to-child-transmission

The Panos Institute recently carried out some research into HIV-related stigma in four different countries, India, Ukraine, Burkina Faso and Zambia. Although the countries and the research sites were very different, it was clear that in each place it is women who are stigmatised and discriminated against the most.

They face stigma because they are women or because they are HIV-positive. They face stigma because they are HIV-positive women who are pregnant or have children. And they face stigma even when they do not know if they are HIV-positive but are assumed to be, perhaps because they are ill or their babies die soon after birth. Stigma is particularly strong surrounding mother-to-child transmission.

The very phrase "mother-to-child" itself may be stigmatising, as it puts all the responsibility of transmission on the mother and none on the father of the child. Stigma stops women coming forward to get themselves tested. It reduces their choices when it comes to health care and family life once they are diagnosed as HIV-positive, and has a negative effect on their quality of life.

The focus of blame on HIV-positive pregnant women: In all the research sites, there was evidence that stigma accredited to being HIV-positive in pregnancy increases the powerful stigmatisation already experienced by women who are known or thought to be HIV-positive and the stigma women suffer in general.

In Ukraine, pregnant women diagnosed with HIV were assumed to be commercial sex-workers, drug users or having had sexual contact with many men, in other words, were assumed to be leading 'immoral' lives. In India, with the increasing risk of monogamous, married women contracting HIV, it was reported that women were usually blamed and stigmatised for passing on the infection to their unborn child. The blame was felt to be worse when the child was a boy due to the high value already given to having a son. Similar cases were found in Burkina Faso where an HIV-positive mother is assumed to be unfaithful or 'promiscuous'. If her status is disclosed, it is likely she will be sent back home to her natal family.

MTP (Medical Termination of Pregnancy): There were numerous examples of how women, once diagnosed as HIV-positive, either faced condemnation or rebuke for choosing to have children or were denied the right to make decisions about their reproductive and family lives altogether.

For example, in Mumbai, it was reported that when pregnant women are diagnosed as HIV-positive they are usually put through 'counselling'. This entails them being ordered or advised, by health care workers, to have an MTP. The coercion by health workers to terminate their pregnancy is based on the assumption that such advice is for the well- being of the child. One woman in Mumbai said, "When I was found [to be HIV]-positive, no-one talked to me about my well being. The doctor told me to do MTP [Medical Termination of Pregnancy] as I had no right to pass on the infection to my baby."

In the doctor-led health care systems of Ukraine, women are also given little choice about their treatment and care. Doctors were reported to often act 'at their discretion' and to make the decision to terminate pregnancies of women who are HIV-positive.

Abuse and Abandonment: Equally as distressing was the lack of sympathy or respect given to pregnant women with HIV. Instead they were open to blame, ridicule and rejection. In rural Zambia a man stated, "If a pregnant woman is sick and has a sick, premature baby who dies before three months, then we know she is affected [infected with HIV] and turn away from her. This is our [HIV] test!"

In Ukraine, when women were found to be positive during antenatal blood tests, nurses were said to let the rest of the community know that they were HIV-positive. This resulted in them being subjected to extreme forms of abuse and abandonment, often leading to them having to move away from their homes.

Infant feeding Mixed messages were given to women about whether they should breastfeed or use formula. Of all the research sites, stigma around breastfeeding was most pronounced in Zambia. Pregnant women, whether HIV-positive or not, face a dilemma: if they do not breastfeed, they are assumed to be HIV-positive but, at the same time, if they do breastfeed, they are accused of "killing the baby". As a result "many women just pretend and continue breastfeeding as if all is well." However, in Ukraine there was no reported stigma associated with formula feeding and in Burkina Faso the main reason given for not following advice to use formula was one of not being able to afford it, rather than fear of being stigmatised.

Recommendations: It became clear throughout the research that the rights and choices of women in relation to treatment, care and family life are repeatedly ignored or denied. The policy framework to support their rights is weak. Within the community their needs are secondary to husbands and children, and in health care settings women are denied their right to make informed choices about their health, reproductive and family life.

What is less clear is what concrete steps can be taken to effectively reduce the impact of stigma on the lives of mothers or pregnant women. Participants in the research, those accessing health care services or providing them, made the following recommendations about reducing stigma around parent-to-child transmission:

1. Future parent-to-child transmission programmes need to be part of an integrated preventive, education, care and support approach which addresses the broader issues surrounding HIV, including widespread fears and misconceptions that reinforce stigma and discrimination.

2. Health care providers need to receive better training and more professional support. Breaches of confidentiality, unclear and inconsistent notions of informed consent, and insufficient knowledge and skills as a result of limited access to training and professional support are common. These combine to inhibit the adoption of universal precautions and the normalising of care given to HIV-positive women. Future parent-to-child transmission initiatives have to take this into account.

3. There should be a greater focus on the well-being of parents in parent-to-child interventions.

Panos continues to work on HIV-related stigma and is planning to publish a report aimed at policymakers, NGOs and the media, building on the above research and covering a wide range of issues related to stigma, discrimination and HIV. We would like to hear from others working in this area or with experience that they feel able to share to ensure that this report is as inclusive, informed and "southern-driven" as possible.

If you would like to know more about our work, please contact:
Bridget Sleap
AIDS Programme Manager
The Panos Institute
9 White Lion Street
London N1 9PD
Tel: +44 (0)20 7239 7604
Fax: +44 (0)20 7278 0345
Email: [email protected]