Pregnancy Decisions of Women Living With HIV: The Need for Multidisciplinary Perspectives

Women living with HIV, like all women, have the right to determine the number and spacing of their children. With the ultimate goal of ensuring that women living with HIV are at the center of decision-making about their sexual and reproductive health and rights, we convened a conference on HIV and pregnancy at the Harvard School of Public Health in March 2010. The purposes of the conference were to identify gaps in knowledge, stimulate research and determine ways to work across disciplines and life experiences. By bringing together researchers, service providers, policy makers and activists working in many different ways to support the pregnancy decisions of women living with HIV, the conference called attention to the need for a stronger evidence base drawing from biomedical, economic, political and social science perspectives alike. Conference proceedings highlighted the importance of moving beyond disciplinary silos to bring these perspectives together in order to provide more comprehensive information relevant to the lives of women and men living with HIV, as well as to create demand for appropriate services and policies.

Working with Reproductive Health Matters, and with support from the World Health Organization (WHO), we sent a call for papers to conference participants to build on the conference presentations and discussions. Reproductive Health Matters and WHO were the ideal partners with whom to embark on this endeavor. The editor of Reproductive Health Matters began to bring attention to the sexual and reproductive health and rights of HIV-positive women as far back as 1986,1 even before the journal existed, and the journal has carried forward this commitment since its inception.* WHO’s Department of Reproductive Health and Research has been a leader in ensuring that policy makers and the scientific community pay attention to the rights and voices of people living with HIV in setting the agenda in this area of work.

Our aim was to assemble a collection of papers that would, from the range of relevant disciplinary perspectives, ensure sufficient attention to all aspects of pregnancy decisions for HIV-positive women, from the decision to use contraception through to safe pregnancy, delivery and breastfeeding, as well as abortion. We have included papers here that represent a diversity of topics, experiences, geographical areas and disciplines. Taken together these papers are intended to help drive policy, programmatic, research and advocacy efforts to promote and protect the sexual and reproductive health and rights of women living with HIV.

The authors are an extraordinary range of individuals engaged in work at the intersection of HIV and sexual and reproductive health. They include people living with and affected by HIV, and represent a wide range of disciplinary backgrounds including advocacy, anthropology, clinical medicine, demography, epidemiology, law, public health, public policy, social science and virology. This mix is purposeful, because despite recent attention to the sexual and reproductive health concerns of HIV-positive women in some specific areas, the challenge remains for different actors to hear and learn from one another and ultimately to address relevant issues from multidisciplinary perspectives. By bringing together the papers in this supplement, we seek to inspire all stakeholders to review key themes from new vantage points and to facilitate collaboration, collective research and action to better address HIV-positive women’s sexual and reproductive health and rights.

With the advent of antiretroviral therapy and with continued channeling of resources into HIV services, greater numbers of HIV-positive women are living longer, healthier lives. As a result, they are contending with a range of issues affecting their sexual and reproductive health and rights, including pregnancy-related and childbirth-related issues. This supplement opens with a commentary by Chitembo and colleagues, who, as women living with HIV, express concern about the overall policy direction of the global response to HIV and pregnancy. Approaches to prevention of mother-to-child transmission of HIV (PMTCT), they point out, are inextricably connected to how women’s sexual and reproductive health and rights are understood and addressed. Chitembo and colleagues urge researchers, policy makers, health practitioners, donors and academics to move beyond rhetoric and incorporate a human rights-based, holistic view of what pregnancy, motherhood and HIV mean for women and children alike into their efforts.

Since early 2012 it has been impossible to consider the pregnancy decisions of HIV-positive women without attention to the question of whether injectable hormonal contraception increases the risk of HIV transmission in the absence of protection against sexual transmission of HIV either with antiretroviral treatment or consistent condom use. It was therefore inconceivable to do a supplement about the pregnancy decisions of HIV-positive women without attention to this topic. We are very grateful to Timothy M.M. Farley and Manjula Lusti-Narasimhan for providing a brief commentary that scans the evidence and discusses the difficult policy positions around this topic today, when the evidence is far from certain but women still require sufficient information about their options to make informed contraceptive decisions.

Despite increased programmatic activity around the globe intended to support HIV-positive women in their pregnancy decisions, the extent to which services are in actuality supportive of this goal is an open question. Qualitative and quantitative research from a range of settings is presented here, raising important questions as to whether existing services are sufficiently responsive to the needs and rights of the populations they are intended to reach. The study by Zamudio-Haas and colleagues about the role of HIV disclosure in pregnancy decision-making among young women in Zimbabwe highlights the inadequacies of sexual and reproductive health services for this population. It suggests that much more comprehensive interventions are needed to truly help young women living with HIV negotiate the complexities of disclosure in the context of achieving desired fertility.

More worrisome still, the piece by Messersmith and colleagues explores, in particular, the role of health care providers in influencing access to services for women living with HIV in Vietnam, as well as in influencing their sexual and reproductive health decision-making. The authors find that despite the increasing availability of antiretroviral therapy and PMTCT services, stigma, discrimination and other factors result in women facing serious and continuing challenges in accessing the full range of services they need to live healthy lives.

The postnatal needs of new mothers are a neglected area of care throughout sub-Saharan Africa for HIV-negative and HIV-positive women alike. The study by Keogh and colleagues examines how antenatal HIV diagnosis affects post-partum childbearing desires in Tanzania, highlighting the conflicting pressures that HIV-positive women face in relation to childbearing and the inadequacy of services in providing them the information and options they require.

Given the overall inadequacy of sexual and reproductive health services for HIV-positive women, it should come as no surprise that services generally do not offer sufficient support to HIV-serodiscordant couples who want to conceive. Crankshaw and colleagues respond to this problem by proposing a conceptual framework to identify factors that influence reproductive decision-making among serodiscordant couples. They envision the framework being applied to the design and implementation of integrated HIV, reproductive health and family planning services that support, rather than hinder, reproductive decision-making.

Involuntary sterilization has been, and remains, a concern for key populations around the world. On the flip side, health services should provide access to sterilization with the informed consent of the person wishing to be sterilized and without any requirement of spousal consent. While recent legal changes in South Africa ostensibly provide this access to all who want it, Strode and colleagues explore the experiences of HIV-positive women in two provinces who report being sterilized without their informed consent or without their knowledge. Highlighting the complex interplay between the implementation of laws and policies with the lived experiences of people directly affected, this study points to the need to ascertain the extent to which similar cases of involuntary sterilization are occurring in South Africa and elsewhere.

For all women, the ability to terminate a pregnancy safely is affected by the legal status of abortion where they live, including the existence or not of clandestine and potentially unsafe services. For HIV-positive women, the risks of unsafe abortion are not only particularly high but insufficiently discussed. De Bruyn examines abortion in relation to the rights of women and girls living with HIV, identifying ways in which abortion has been inadequately addressed in policy and programmatic guidance. Barbosa and colleagues contribute further to the ongoing dialogue about HIV and abortion through their investigation of the extent to which the fact of being HIV-positive influences Brazilian women to seek an abortion. They find that the abortion decision is part of a larger reproductive decision-making context, with multiple factors influencing contraceptive practices, pregnancy and abortion, and conclude that there is little about the decision that is unique to HIV-positive women. This finding underscores the need for health services to address HIV and reproductive health together, including abortion services, with reproductive and sexual rights serving as the fundamental basis for how health care is delivered.

Despite continued shortcomings in the policies, programs and services reaching HIV-positive women, the one area in which there has been significant progress is preventing mother-to-child transmission. However, vigilance is required to ensure that outcomes for children are not prioritized at the expense of the rights and health of women. A literature review by Mazzeo and colleagues on the interface between pediatric HIV elimination and the pregnancy intentions of HIV-positive women describes the role of pregnancy intentions in determining appropriate health services for HIV-positive women – including family planning, reproductive and obstetric care, and HIV-related services – and shows how these essential health services are linked not only to preventing mother-to-child transmission but to improving maternal health. The authors point out that ensuring access to high-quality health services is necessary to enable HIV-positive women to choose whether and when to have children, and is essential to the success of these efforts.

Men play an integral role in fertility decisions and have the potential to greatly increase the safety of sexual interactions. It has been repeatedly stressed that men must be actively engaged as partners, both for the sake of their own health and as advocates for women’s health. Yet what limits their involvement? Ramirez-Ferrero and Lusti-Narasimhan take on this question, discussing implications for the design and delivery of effective services and identifying opportunities for research and programmatic directions going forward.

Despite the growing number of women living with and affected by HIV, these articles make clear that there is still insufficient attention to their pregnancy-related needs, rights, decisions and desires in policy, programs and services. MacCarthy and colleagues present a systematic literature review to ascertain the current state of knowledge, and to highlight issues that are not being sufficiently addressed in research. Findings are chiefly organized according to four types of pregnancy-related issues: seeking to prevent pregnancy; involuntary sterilization; safer pregnancy; and pregnancy termination. Attention is also given to women’s interactions with the health system, including those relating to HIV testing; integration of services; health worker attitudes; stigma and discrimination; and key populations. Our hope is that this review can stimulate further research in these important but neglected areas.

In March 2012, the Women’s Program of the Asia Pacific Network of People Living with HIV (WAPN+) produced a damning report on the experiences of women living with HIV seeking to access reproductive and maternal health care services in Bangladesh, Cambodia, India, Indonesia, Nepal and Vietnam. Using both quantitative and qualitative methods, the report highlights the inadequacy of attention to the needs and rights of HIV-positive women in the delivery of relevant services. It has been excerpted and is included because it presents compelling evidence about the realities faced by women who try to utilize services in a number of areas discussed in this supplement including contraception, pregnancy, delivery and abortion, and provides recommendations with relevance far beyond the Asian region.

Research conducted by investigators from different disciplines is situated within a large, interconnected body of knowledge and sphere of influence. Yet despite the authors’ common commitment to addressing issues affecting women living with HIV, there are striking differences in language and approach among the articles in this supplement. These differences can impede our efforts to understand each other and work together. Thoughtful and respectful consideration of the nature and practical implications of “multidisciplinary” work relating to HIV and pregnancy is of the essence. Questions as to what is recognized and valued as evidence across disciplines remain. Depending on its purpose, evidence can be generated in many ways from randomized-control trials to anecdotes concerning the lived or witnessed experiences of women. All provide complementary types of information to more fully understand and support the reproductive and sexual rights of women living with HIV. Yet a truly multidisciplinary approach rarely happens.

Researchers, program implementers, policy makers and advocates are encouraged to use the pieces presented here to ensure that there are adequate resources to conduct multidisciplinary research, to design studies across relevant disciplines, and, most importantly, to translate these findings into services and programs that fully support HIV-positive women’s ability to stay healthy, shape their families and fully realize their reproductive and sexual health and rights.