Too little attention to the wish for children of HIV-infected women

HIV has an enormous impact on women’s fertility, both in biological and behavioural terms, says Shirish Darak, who interviewed more than 600 Indian women infected with HIV for his research. ‘Healthcare workers do not pay enough attention to the specific problems that these women face’, Darak concludes. He has been awarded a PhD by the University of Groningen on 22 November.

The women Darak interviewed in India were between 15 and 40 years of age and were or had been married. Darak made a detailed analysis of the women’s fertile years, both before and after they became aware of the HIV infection. The analysis demonstrated the significant biological impact that HIV has on fertility, more specifically on the outcome of pregnancy : the HIV virus can cause miscarriage or stillbirth.

Behavioural changes

The number of pregnancies among women and their partners once they had become aware of an HIV infection dropped, and the number of abortions rose. Though most HIV infected couples were using condoms as advised, it appeared from the analysis that the use of condoms alone is not sufficient to prevent unwanted pregnancies. Darak: ‘HIV testing is becoming much easier in India and women are able to find out whether they are infected much sooner. The implications for their behaviour will become visible over the next few years, making it important to devise a protocol now rather than later.’

Right to reproduction

Darak: ‘The focus of HIV programmes is not usually on helping women to prevent pregnancy. There are programmes that offer immediate help in preventing the child from becoming infected, but they do not sufficiently consider the sexual and reproductive needs of women. Although the ‘motherhood’ of HIV infected women is addressed, too little attention is paid to their ‘womanhood’. I am arguing the case for specific interventions aimed at the reproductive rights of women infected with HIV. At present, the information and care available focus entirely on the child, while I think it essential to focus on the women irrespective of whether they are pregnant or not.’

The wish for children

Although some women infected with HIV lose their desire to have children, many of the women interviewed for the study said that they would like to have a child (or more children). Darak: ‘They face a multitude of problems, for instance the fear of infecting the child. But they also worry about their children’s future. Who will take care of them if they become ill? On the whole, healthcare workers are not interested in problems like this, even though women cannot be expected to solve them on their own.’

Treatment programmes modified

Darak worked very closely with a clinic at the Prayas Health Group in Pune Maharasthtra (India) . ‘This was the main aim of my research. I didn’t want to conduct scientific research from a privileged position in an ivory tower; I wanted to spend at least 80 percent of my time in the field. And I want the research to result in real changes for the women who took part.’

Darak succeeded in this aim. His research findings have been incorporated into the clinic’s treatment programmes and a special information booklet. This is not a leaflet explaining medical procedures, but a compilation of stories about living with HIV; about issues such as relationships, fertility problems and sexuality. Darak: ‘The basic message in this booklet is that women with HIV have the right to make their own decisions. This is something that healthcare workers, and the women themselves, would do well to realize.’

Curriculum Vitae

Shirish Darak (1977, India) studied Population Studies at the University of Groningen. He conducted his research at the Population Research Centre of the Faculty of Spatial Sciences and a clinic operating under the Prayas Health Group in Pune Maharasthtra (India). His thesis is entitled ‘It’s not only about the baby! Understanding reproductive career and fertility among HIV infected Indian women and its implications’. The research was funded by the Eric Bleumink Fund of the University of Groningen. His supervisors were Prof. I. Hutter and Dr F. Janssen. Darak is currently working as an associate professor in the Faculty of Spatial Sciences of the University of Groningen.