Report urges multi-disciplinary research approach to help HIV-positive women stay healthy

Stronger evidence base needed for researchers, program implementers, policymakers and advocates

A report issued by the Program on International Health and Human Rights at the Harvard School of Public Health proposes a new research agenda to address the sexual and reproductive health and rights of HIV-positive women.

"The Pregnancy Intentions of HIV-Positive Women: Forwarding the Research Agenda," identifies key gaps in current knowledge, and urges a multi-disciplinary research approach to help HIV-positive women stay healthy and shape their families.

Read the full report and a shorter document that highlights the most pressing research priorities.

"Women living with HIV, like all women, have the right to determine the number and spacing of their children," said Sofia Gruskin, Director of Harvard's Program on International Health and Human Rights. "There is a clear and urgent need for more research into how women are counseled and the services that are made available to them."

The research recommendations stem from a conference and symposium convened in March 2010, at the Harvard School of Public Health, one of the first to bring together representatives from across disciplines and experiences on this issue. The more than 60 participants came from diverse country contexts and are engaged in a range of HIV/AIDS and sexual and reproductive health and rights related work.

The resulting report documents current knowledge and gaps in the following areas: desired pregnancy for HIV-positive women; HIV-positive women seeking to prevent pregnancy; safer pregnancy for HIV-positive women; and pregnancy termination for HIV-positive women. It then proposes a research agenda designed to provide advocates, health professionals, program implementers, and policy makers with the tools they need to promote and protect HIV-positive women's ability to achieve their pregnancy intentions.

Women of childbearing age now represent nearly half of the 38.6 million people living with HIV today. To date, research on HIV and pregnancy has generally assumed that women living in resource-limited settings who are HIV-positive will no longer want to bear children. However, with the dramatic increase in access to antiretroviral treatment (ART), there is a much greater likelihood of preventing transmission of the virus from mother to child, and a clear desire by many HIV-positive women in these settings to pursue options for having children.

"The face of the global HIV epidemic has changed over the past decade, and our research agenda must reflect this new demographic reality," said Manjula Lusti-Narasimhan, a scientist for the Department of Reproductive Health and Research at the World Health Organization, which co-sponsored the conference. "We must gather the data and evidence to help us put these women at the center of decision-making on their sexual and reproductive health."

The proposed research agenda addresses the issue from a number of overlapping areas, including from the women, the community, the health system, and the larger legal and policy context. Research recommendations include:

• Addressing HIV-positive women's contraception-related needs.
• Exploring the ways in which different forms of HIV testing and counseling influence sustained engagement of HIV-positive women with health services.
• Determining the health of mother and infant in the post-partum period with and without continuous access to treatment and care.
• Documenting the scope and impact of forced sterilization of HIV-positive women in different settings.
• Comparing the appropriateness of various service delivery models, including those that integrate HIV care with sexual and reproductive health services.
• Exploring the mechanisms to enhance the knowledge of providers and promote their subsequent communication of relevant information to HIV-positive women and their partners.
• Investigating the potential role of community, including the role of traditional birth attendants, as a link to women living with HIV and between community and clinical care locally and nationally.
• Measuring the impacts of stigma, discrimination and violence.
• Exploring the larger impacts of the legal and policy context on access to information and health services for women living with HIV and their partners.
• Assessing the effective application and leveraging of health and human rights frameworks.

The report urges that research on the pregnancy intentions of HIV-positive women should involve women and their partners at all stages, and take a multi-disciplinary approach to help HIV-positive women stay healthy and shape their families. It also concludes that a stronger evidence base - including results from biomedical, operational, policy, and human rights research - will provide more comprehensive information relevant to the lives of women and men living with HIV, and create demand for appropriate services and policy changes.

"Researchers, program implementers, and advocacy groups must combine efforts to ensure that there are adequate resources to conduct this research, to design studies across relevant disciplines, and to disseminate important findings," added Gruskin.