HIV and Pregnancy Intentions: Do Services Adequately Respond to Women's Needs?

Abstract

Too little is known about how an HIV diagnosis and access to care and treatment affect women's childbearing intentions. As access to antiretroviral therapy improves, greater numbers of HIV-positive women are living longer, healthier lives, and many want to have children.

Effectively supporting women's reproductive decisionmaking in the context of HIV requires understanding how pregnancy, reproduction, and HIV intersect and asking questions that bridge the biomedical and social sciences. Considering women to be at the center of decisions on health policy and service delivery can help provide an appropriate constellation of services.

A clear research agenda is needed to create a more coordinated approach to policies and programs supporting the pregnancy intentions of women with HIV.

THE DECISIONS WOMEN MAKE about pregnancy and childbearing are influenced by a complex interplay of factors ranging from access to health services to personal aspirations and societal norms. A diagnosis of HIV may further complicate these decisions.

Cherish, age 12 years, plays duck-duck-goose at Camp Heartland in Willow River, Minnesota, a camp for children affected by HIV/AIDS. Although HIV-free herself, Cherish comes to camp to seek relief from the strain of living in a family affected by AIDS. Photograph by Katja Heinemann. Printed with permission of IPNSTOCK.com.

Too little is known about how an HIV diagnosis and access to HIV care and treatment affect women's intentions to bear children. As access to antiretroviral therapy improves globally, greater numbers of HIV-positive women are living longer, healthier lives. Consequently, many women with HIV face an increasing range of decisions related to pregnancy and childbearing.¹

One of the prevailing assumptions driving much public health policy and practice regarding HIV-positive women is that an HIV diagnosis will or should quell a woman's desire to have children, even as the social premium on childbearing remains.^2,3 Women are left to negotiate these conflicting expectations.

We highlight questions that show how considering individual women at the center of relevant policy and service delivery decisions can support the provision of an effective constellation of services for HIV-positive women. Although women are the focus of this commentary, we note that further attention to men's reproductive lives is warranted. We provide a brief review of research and policy directives linking reproductive health and HIV to date, outline some of the factors affecting women's decisionmaking in this area, and conclude by underscoring factors requiring further consideration.

These observations are based on a review of the literature, discussions with women living with HIV, and participation in conferences bringing together policymakers, researchers, and others concerned with these issues. For the literature review, we conducted a critical assessment of materials from the peer-reviewed as well as gray literature on the intersections between HIV and sexual and reproductive health,^4–7 and included in our assessment program documentation from international organizations (e.g., the US Agency for International Development [USAID], the Joint United Nations Programme on HIV/AIDS [UNAIDS], and the World Health Organization [WHO]). Additionally, a review was conducted of information available on relevant electronic mailing lists and newsletters focused on the intersections of HIV, reproductive health, and pregnancy.

WOMEN'S PERSPECTIVES

Overlaps between reproductive health and HIV, particularly as they relate to the dynamics of sexual behavior, have led to advances in the integration of HIV and reproductive health services in recent years.^8,9 Initially conceptualized to maximize opportunities for HIV prevention among sexually active populations, and in accordance with the vision of comprehensive reproductive health services articulated at the 1994 International Conference on Population and Development, interventions through the late 1990s focused primarily on integrating sexually transmitted infection (STI) and HIV services and then on integrating these with maternal and child health services.^10–12 Ostensibly based on an assumption that women living with HIV would not want to conceive, the focus was primarily on how to integrate family planning and HIV services.¹³

With the advent of antiretroviral therapy, HIV-related health programs are increasingly concerned with long-term care and treatment. This brings the role of the health sector once again to the forefront. Yet these initiatives still appear to focus on how to integrate a specific HIV service into a specific reproductive health service (e.g., introducing HIV testing into antenatal care services) or vice versa (e.g., introducing family planning services into posttest HIV counseling), with little attempt to understand and respond to the experiences of women themselves over time.^1,10,14,15 In this respect, many service integration efforts have ignored constraints such as illiteracy and gender norms that pose challenges for women's autonomous decisionmaking.¹⁶ As a result, even well-intentioned efforts to bring together services and programs may fail to provide women with what they require.

Despite the rhetoric, the primary focus of many programs putatively for women has remained the prevention of HIV transmission from women to their sexual partners or children, failing to prioritize the provision of services for women's sexual and reproductive health as an important endpoint in and of itself.¹⁷ According to the GIPA (Greater Involvement of People Living With HIV/AIDS) principle,¹⁸ the participation of affected communities is necessary from a human rights perspective and fundamental to good public health.^19,20 The current proliferation of integration efforts would benefit from greater incorporation of women's perspectives and increased communication of lessons learned to move forward research and programmatic efforts in a manner that supports the rights, needs, and intentions of women living with HIV.

WOMEN'S PREGNANCY INTENTIONS

The analysis of fertility determinants has historically constituted a challenging area of study. A wide array of issues has been studied, including biological fecundity, household economic concerns, and social norms specifying that women's societal duties require them to become mothers.^21,22 Beyond the physiological impact of HIV on women's ability to conceive, relatively little is known about how decisions regarding fertility interact with an HIV diagnosis, nor how the impact of a diagnosis of HIV on pregnancy intentions might vary depending on the timing of such a diagnosis.

To date, most research on the pregnancy intentions of women with HIV has been limited to North America and Europe, with some studies from developing countries emerging more recently.^6,17,22–27 One study from Malawi showed that although women overall were less inclined to want children after receiving a diagnosis of HIV, women with no living children continued to desire children.²⁸ Another study in Brazil found that HIV-positive men wanted children as much as or more than women with HIV, raising the question of how childbearing is negotiated in seroconcordant as well as serodiscordant partnerships.²⁹ As the availability of programs to prevent perinatal transmission and, in some settings, the availability of assisted reproduction improves, it is likely that more HIV-positive women will want to have children.³⁰ Even when treatment is available, however, women may be concerned about having children because of the potential risks for the child, themselves, and their partners.⁶

The pregnancy intentions of HIV-positive women are driven not only by an HIV diagnosis but by individual concerns as well as larger societal and cultural expectations. For example, women with HIV may be left balancing the possibility of not surviving long enough to raise their children, or of giving birth to HIV-positive children who will require significant care, with the potential of being stigmatized for not bearing children at all.²² The situation is similar for HIV-negative women in serodiscordant partnerships. More research is necessary on the economic, social, and cultural factors that influence women's decisions regarding pregnancy in the context of HIV, in particular on the ways in which the availability of antiretroviral therapy and women's response to this therapy affect decisionmaking. It is clear, however, that many women with HIV remain sexually active but desire to delay or prevent conception. Much work remains to ensure that all women have access to contraceptives if they wish to use them. A study in Uganda found that although 93% to 97% of HIV-infected women reported not wanting more children, only 14% of these women actually reported using permanent or semipermanent family planning methods.³¹

Attention is beginning to be directed toward understanding possible drug interactions between ART and drugs commonly used to treat opportunistic infections with the contraceptive methods used by HIV-positive women.^32,33 At present, WHO does not consider HIV infection or use of antiretroviral agents as contraindications for using hormonal contraception, but many researchers believe this question requires additional study.^7,34 With lack of consensus on these interactions, obvious questions arise about the information and advice providers should give, and are giving, to women. Women's knowledge and understanding of these issues will likely affect their use of reproductive health and HIV services and medications, and consequently their reproductive intentions.

Efforts to develop female-controlled technologies that offer dual protection against pregnancy and STI and HIV infection remain minimal.³⁵ Thus far, female condoms remain the only such commodity. Unfortunately, the goal of simultaneously addressing the dual needs of pregnancy prevention and protection against STIs has been stalled because of recent findings on the ineffectiveness of candidate microbicides.³⁶ It is hoped this is only a short-term setback, but research is still needed on the effectiveness of current methods of dual protection and the factors that affect their use, particularly among serodiscordant couples.^37,38

WOMEN'S CHILDBEARING INTENTIONS

Whether or not a pregnancy was intended affects how a woman feels about carrying it to term; the presence of HIV presents additional implications. Additionally, little is known about how provider attitudes affect the decisions women make. Some reports suggest that HIV-positive women who choose to become pregnant routinely encounter health workers who encourage or sometimes even coerce them to terminate their pregnancies.^22,39 Conversely, HIV-positive women who are pregnant and wish to safely terminate their pregnancy have reported being unable to access the services they need. Evidence suggests that some health care providers are hesitant to provide what they consider to be invasive surgical procedures such as pregnancy termination to a woman with HIV.²² In both circumstances—desiring to carry a pregnancy to term or to terminate it—ultimately the intentions of HIV-positive women are only part of the picture.

The complications that HIV introduces to pregnancy and childbearing, as well as the high unmet need for contraception that exists in areas where HIV is most prevalent, have meant that many women with HIV face pregnancies they do not want to carry to term.^15,40–42 The legal status of abortion, as well as limitations on access to available services because of such factors as economic resources, transportation, and stigma, have made the issue of abortion among HIV-positive women a challenging area of study. It is critical to document the frequency and consequences of induced abortion, including unsafe abortion, among women with HIV and to better consider the relationships between unintended pregnancy, pregnancy termination, and HIV.

Medical abortion is often a safe and uncomplicated option, but a recent review found no evidence of research assessing the effectiveness of medical abortion or the potential side effects, drug interactions, or other complications for women with HIV.⁵ In settings providing postabortion care, the implications of HIV status for service provision also require additional research. This lack of data makes it difficult for women to make informed choices, even if services are available, or for service providers to know how to properly advise their clients.

Data from resource-poor countries suggest that, without extensive care, women with HIV who decide to carry a pregnancy to term may have a higher risk of ectopic pregnancy, miscarriage, and other forms of fetal loss.^5,43,44 The physiological impact of antiretroviral agents on pregnancy outcomes requires further research. Although use of antiretroviral agents can decrease a woman's viral load and thus decrease the probability of perinatal transmission of HIV, the impact of these drugs on the infant are, as yet, unknown. Although all would agree that women should have access to services that manage their HIV infection and also promote optimal pregnancy outcomes, how best to put these goals into practice is still not clear.

Women in resource-poor settings are most likely to utilize the health system during pregnancy.^45,46 Antenatal services have been prioritized as an entry point for HIV testing for women and prevention of perinatal transmission. WHO and UNAIDS recommend that in regions with generalized HIV epidemics, all women in labor whose HIV status is not known should be offered provider-initiated HIV testing and counseling.^47,48 Many women with HIV note that regardless of official policy, the voluntary nature of HIV testing and the ability to keep test results confidential are often compromised in practice, particularly in settings where services to prevent perinatal transmission are available.⁴⁹ Debates over testing have recently focused on how to balance efficacy in managing a woman's HIV infection during pregnancy with promoting and protecting her informed consent and confidentiality.^49,50 In many instances, a woman's ability to provide informed consent for services during labor may be impaired, and the practical implications of this raise fundamental unaddressed concerns. The impact on women of discovering their HIV status at such a critical moment remains poorly understood, and it is unclear whether women testing HIV positive in this way receive necessary care and treatment over time.

Despite the relatively widespread availability of short-course antiretroviral regimens to prevent transmission of HIV from mother to child during pregnancy, labor, and delivery, it has been estimated that only 9% of HIV-positive pregnant women in developing countries received antiretroviral prophylaxis in 2006.^51,52 Many factors may contribute to this low rate, including women's fear of toxic effects for themselves or their baby, fear of drug resistance, beliefs that treatment is not necessary if women are “healthy,” interruptions in the drug supply, stigma, discrimination, and low rates of delivery in health care facilities.^53,54 Women's use of services for the care and treatment of their own HIV infection following a diagnosis in antenatal care also remains low.^55–57 The reasons for this low use of services are insufficiently understood, but identified barriers include such factors as uneven availability of treatment, HIV-related stigma, and lack of transport to services.^58,59

MOVING FORWARD

Understanding how pregnancy, reproduction, and HIV intersect requires asking questions that bridge the social and biomedical sciences to explore the many factors affecting women's reproductive decisions in the context of HIV.

We have highlighted several questions reflecting the inadequacy of the response of policymakers and service providers to HIV-positive women's intentions regarding childbearing, both before and after becoming pregnant. Immediate issues to be considered include the following: (1) What is the impact of HIV infection and awareness of HIV status on the decisions women face concerning pregnancy and childbirth? (2) How do the constellation and quality of available health services, including access to antiretroviral therapy, affect women's intentions and opportunities? (3) How do marital status and relationship dynamics influence fertility intentions in the context of the HIV epidemic? (4) How do the domains of culture, politics, and economics affect women's options regarding childbearing and management of HIV infection?

A complex matrix of factors affects the answers to these questions; any responses will likely be very nuanced. Although new models of service delivery have been developed, ranging from full integration of HIV services into primary care to the introduction of sexual and reproductive health services into stand-alone HIV clinics, there is no consensus on what models are most effective, particularly for meeting the range of issues affecting women in diverse economic, social, cultural, and legal settings.^7,50 Recognition of various populations' very different health service needs is required, as there is not likely to be a “one size fits all” strategy for integration.⁵⁰ Research addressing the questions raised here may begin to provide lessons that can inform policies and programs across a range of settings. Health services must be equipped to provide women with the information they require to make informed decisions about their reproductive health, as well as be able to support women in making these decisions.

Dramatic changes need to occur within health systems, including not only ensuring access to services but improving the training of health care workers. This, however, is not enough. Clarifying the research agenda at all levels will help to create a more coordinated approach to developing policies and programs that better address the pregnancy intentions of women. The starting point must be understanding exactly what the reproductive health-related needs of women with HIV are and how they are influenced—issues that can best be explained by women with HIV themselves.

Peer Reviewed

Contributors

All authors contributed to the conceptualization, research, and writing of this commentary.