Engaging HIV Care Providers in Conversations With Their Reproductive-Age Patients About Fertility Desires and Intentions: A Historical Review of the HIV Epidemic in the United States

Provider-initiated conversations with people living with HIV about reproductive plans are lacking. Providers must know whether their patients want to bear children to tailor treatment and refer for HIV preconception counseling to help achieve patients’ reproductive goals while minimizing transmission to partners and children. The early focus on men who have sex with men largely excluded consideration of the epidemic’s impact on reproductive health. We used a historical review of the US epidemic to describe the problem’s scope and understand if this legacy underlies the current neglect of reproductive planning. Drawing on peer-reviewed literature, we discuss key themes relevant to assessing and understanding attention to desires for children among HIV-positive people. We conclude with recommendations for addressing persistent stigma and enhancing patient–provider communication about reproductive intentions.We reviewed the literature on childbearing desires among people living with HIV to understand to what extent and why such desires have not been appropriately addressed in the public health response to HIV. We briefly explain why appropriate attention to fertility desires among people living with HIV should be a public health priority. We then present the results of a historical review of the HIV epidemic in the United States focused on reproductive desires for biological children. From the early epidemic up to the current context, we document a critical unmet need for reproductive planning, including research on this topic. We present evidence that (1) reproductive desires among people living with HIV have been largely ignored historically, (2) HIV-positive women and men desire to have biological children, and (3) despite recent attention to fertility intentions in research, patient–provider communication about safer childbearing remains limited according to the few published studies available.Drawing on this history, we discuss 3 key reasons for the lack of attention spanning across the 3 decades of the epidemic: (1) the initial focus on men who have sex with men (MSM) because of the early epidemiology of the epidemic, (2) subsequent focus on infants and sexual partners because of legitimate concerns about vertical and horizontal transmission before the development of antiretroviral therapy (ART) and HIV preconception strategies, and (3) a legacy of stigma that persists despite medical advances that make childbearing among people living with HIV much safer. We recommend a series of strategies for addressing this unmet need.Roughly three quarters of more than 1 million people living with HIV in the United States are of reproductive age.1,2 Similar to persons who are not infected with HIV, research suggests that people living with HIV have desires and intentions to have biological children that warrant adequate attention and available high-quality reproductive health care from HIV providers. In a seminal study published in 2001, Chen et al. reported that among 1421 HIV-positive women and men from a nationally representative sample of adults in the United States receiving medical care, 29% of women and 28% of men desired children in the future.3 More recently, a study of HIV-positive women in a Baltimore, Maryland, clinic (mean age = 32 years) documented that 59% desired to bear future children.4 Despite these desires, a few recent studies suggest that reproductive counseling has yet to become a standard component of routine HIV clinical care in the United States.5–7Why is this a concern? For one, providers must know whether their HIV-positive patients want to bear children to tailor treatment options and refer patients for HIV preconception counseling to meet their childbearing desires while preventing HIV transmission to partners (horizontal transmission) and children (vertical transmission). In addition, there is the need to ensure that services adequately respond to the sexual and reproductive rights of people living with HIV.8,9Although there has been recent recognition that the reproductive intentions of people living with HIV have been largely neglected with consequences for public health and human rights, there has not been a historical review to explore the past and current scope of this problem or discuss why this need remains unmet in the United States. To enhance provider communication with HIV-positive patients of reproductive age about their reproductive desires and intentions, these gaps must be addressed. Therefore, we explored 3 aims. First, we turned to the history of the epidemic in the United States to understand the scope of the need for reproductive planning for people living with HIV. Second, using this historical context, we explored the reasons underlying the current challenge. Third, we considered strategies for meeting this need.Our analysis focuses specifically on desires to have biological children among people living with HIV. However, nearly half of all pregnancies in the United States in 2006 were unintended,10 indicating that the need for routine reproductive planning certainly extends beyond people living with HIV. Several of the concluding recommendations can apply to the general population more broadly. The review and recommendations also focus on women and men who have sex with women as having biological children is a more relevant reproductive health concern for these populations than for MSM. Much of this article presents data on HIV-positive women because of the very limited research on childbearing desires among HIV-positive men and HIV-negative women in relationships with HIV-positive men. We recognize, however, the importance of this issue for these populations and highlight the need for future research. Finally, to ensure focus, we have limited the review to the desire for biological children and childbearing; thus, pregnancy prevention is not discussed. It is likely, however, that many of the conclusions and recommendations will apply to pregnancy prevention or spacing—the more commonly emphasized dimensions of family planning.We also focused on the US epidemic for several reasons. Increasingly, research on the fertility intentions of people living with HIV occurs in low-resource country contexts and rightfully so because of the magnitude of the epidemics in these settings.11,12 Much of the historical literature, however, discusses the epidemic in the United States, and even in this high-resource setting, HIV persists as a public health challenge. According to the Centers for Disease Control and Prevention (CDC), there were an estimated 47 500 new HIV infections in 2010. Of these, 63% stemmed from male-to-male sex and 25% occurred via heterosexual transmission.13 Women constituted an estimated 20% of the newly infected persons in 2010, 64% of whom were Black women13 who must not only contend with HIV-related stigma but also with marginalization in the form of sexism and racism.14 With this epidemiology and its implications, the lack of attention to the epidemic’s impact on women, men who have sex with women, and reproduction must be addressed.     

Societal and individual drivers of fertility desires and intentions among people living with HIV: a cross sectional study of HIV clinic attendees in Soweto,South Africa

BackgroundHigh proportion of people living with HIV (PLHIV) who are in the prime of their reproductive years desire to have children. There are limited studies that explore the range of fertility intentions for PLHIV. This study investigated the fertility desires and intentions of PLHIV and the associated factors.MethodsThis was a cross-sectional study of 442 PLHIV receiving antiretroviral treatment (ART) in health facilities in Soweto, an urban township that is situated in the City of Johannesburg in South Africa. STATA version 13 was used to analyze the data.ResultsThe participants'' mean age was 36.3 years, 70% were females, 79.6% had at least one biological child, and 36% had 3+ children. Almost half (47%) expressed the desire for children, saying that this was because they had no biological children, or their partners wanted children, or they wanted children of a particular sex, or were feeling healthy after taking ART. An increased fertility desire was associated with absence of biological children (AOR = 5.06, 95% CI: 2.11–12.1) and with being married (AOR = 2.63, 95% CI: 1.31–5.27). A decreased fertility desire was associated with being aged 36+ (AOR = 2.63, 95% CI: 1.31–5.27), having primary education (AOR = 0.11, 95% CI: 0.01–1.30) and having ≥4 years of ART duration (AOR = 0.45, 95% CI: 0.24–0.81).ConclusionIndividual factors played a significant role in shaping the fertility desires of PLHIV in this setting. The high desire for children underscore the need to integrate reproductive health services in HIV and AIDS care and treatment services and develop safer conception programmes to help PLHIV to conceive and have children safely.     

HIV status and gender: a brief report from heterosexual couples in Thailand

Although the impact of HIV falls on both partners of a married couple, the burden of stress may not be necessarily shared evenly. The researchers in this study examined the relations among HIV status, gender, and depressive symptoms among 152 married or cohabitating couples living with HIV in the northern and northeastern regions of Thailand. Depressive symptoms were assessed using a 15-item depressive symptom screening test that was developed and used previously in Thailand. Among the 152 couples, 59% were couples in which both members were people living with HIV (seroconcordant; both people living with HIV couples), 28% had only female members with HIV (serodiscordant; females living with HIV couples), and 13% had only male members with HIV (serodiscordant; males living with HIV couples). The prevalence of depressive symptoms between seroconcordant and serodiscordant groups was similar. However, females living with HIV reported significantly higher levels of depressive symptoms, regardless of their partners' HIV status. Future prevention programs focusing on serodiscordant couples should be planned to target HIV risk, as well as emphasis on mental health, with a particular focus on women's increased susceptibility to negative mental health outcomes.     

HIV Status and Gender: A Brief Report from Heterosexual Couples in Thailand

Although the impact of HIV falls on both partners of a married couple, the burden of stress may not be necessarily shared evenly. The researchers in this study examined the relations among HIV status, gender, and depressive symptoms among 152 married or cohabitating couples living with HIV in the northern and northeastern regions of Thailand. Depressive symptoms were assessed using a 15-item depressive symptom screening test that was developed and used previously in Thailand. Among the 152 couples, 59% were couples in which both members were people living with HIV (seroconcordant; both people living with HIV couples), 28% had only female members with HIV (serodiscordant; females living with HIV couples), and 13% had only male members with HIV (serodiscordant; males living with HIV couples). The prevalence of depressive symptoms between seroconcordant and serodiscordant groups was similar. However, females living with HIV reported significantly higher levels of depressive symptoms, regardless of their partners' HIV status. Future prevention programs focusing on serodiscordant couples should be planned to target HIV risk, as well as emphasis on mental health, with a particular focus on women's increased susceptibility to negative mental health outcomes.     

Fertility desires and intentions of HIV-positive men and women

CONTEXT: HIV-positive men and women may have fertility desires and may intend to have children. The extent of these desires and intentions and how they may vary by individuals' social and demographic characteristics and health factors is not well understood. METHODS: Interviews were conducted from September through December 1998 with 1,421 HIV-infected adults who were part of the HIV Cost and Services Utilization Study, a nationally representative probability sample of 2,864 HIV-infected adults who were receiving medical care within the contiguous United States in early 1996. RESULTS: Overall, 28-29% of HIV-infected men and women receiving medical care in the United States desire children in the future. Among those desiring children, 69% of women and 59% of men actually expect to have one or more children in the future. The proportion of HIV-infected women desiring a child in the future is somewhat lower than the overall proportion of U.S. women who desire a child. The fertility desires of HIV-infected individuals do not always agree with those of their partners: As many as 20% of HIV-positive men who desire children have a partner who does not Generally, HIV-positive individuals who desire children are younger, have fewer children and report higher ratings of their physical functioning or overall health than their counterparts who do not desire children, yet desire for future childbearing is not related to measures of HIV progression. HIV-positive individuals who expect children are generally younger and less likely to be married than those who do not. Multivariate analyses indicate that black HIlV-positive individuals are more likely to expect children in the future than are others. While HIV-positive women who already have children are significantly less likely than others both to desire and to expect more births, partner's HIV status has mixed effects: Women whose partner's HIVstatus is known are significantly less likely to desire children but are significantly more likely to expect children in the future than are women whose partner's HIV status is unknown. Moreover, personal health status significantly affects women's desire for children in the future but not men's, while health status more strongly influences men's expectations to have children. CONCLUSIONS: The fact that many HIV-infected adults desire and expect to have children has important implications for the prevention of vertical and heterosexual transmission of HIV, the need for counseling to facilitate informed decision-making about childbearing and childrearing, and the future demand for social services for children born to infected parents.     

Fertility desires and family planning demand among HIV-positive clients in follow-up care at antiretroviral treatment unit in Gondar university hospital,Ethiopia

Despite the growing importance of fertility issues for HIV-infected persons, little is known about their actual fertility desires and intentions. This study was, therefore, aimed at assessing fertility desires and demand for family planning in HIV-positive clients in follow-up care at antiretroviral treatment (ART) unit in Gondar University Hospital, Ethiopia. A cross sectional quantitative study on 389 study subjects (56% females and 44% males living with HIV/AIDS in follow-up care) supplemented by in-depth interview was conducted between November 2007 and January 2008. Eighty-five (49.71%) of the male and seventy-nine (36.3%) of the female participants expressed the desire for children, giving a total of 164 (42.16%) of all participants. Study subjects who had no children and whose partners wants children were more likely to have children desire. During the survey period, 100 (25.7%) of the clients were using different forms of family planning devices and 124 (42.9%) wants to use family planning in the future. The extent of fertility desire and family planning needs of these people has implication for vertical and heterosexual transmission of HIV, the needs for fertility-related counselling, and/or contraception, and advice regarding childbirth.     

Factors associated with intention to conceive and its communication to providers among HIV clients in Uganda

Persons living with HIV/AIDS (PLHA) must discuss their fertility intentions with healthcare providers to receive the support needed to have children safely and limit transmission risks. However, few quantitative studies have examined correlates of fertility intentions, let alone the communication of such intentions with providers. We examined the prevalence and correlates of intentions to have children, and comfort discussing such plans with one’s providers, in HIV clients at two HIV clinics in Uganda. Cross-sectional self-report data were collected from 233 patients who had primary partners. Bivariate correlates significant at the P < 0.10 level were included in logistic regression analysis. Of the 233 participants, 103 (44%) reported an intention to conceive a child in the near future. In multivariate analysis, younger age of both the patient and their partner, better physical health functioning and higher internalized HIV stigma were associated with having fertility intentions. One-third (35%) of those with fertility intentions expressed having difficulty discussing these intentions with their providers, which was associated with receiving care at the rural clinic and greater internalized HIV stigma. These findings highlight the need for reproductive health services that help clients accept themselves as PLHA and their fertility rights, thus promoting patient-doctor communication needed to promote safe child conception and delivery outcomes.     

Cultural Expectations and Reproductive Desires: Experiences of South African Women Living With HIV/AIDS (WLHA)

We explored factors influencing sexual and reproductive (SR) decisions related to childbearing for women living with HIV/AIDS (WLHA) in South Africa. We conducted four focus group interviews with 35 women living with HIV/AIDS. Our results show that the SR health care needs of women were not being addressed by many health care workers (HCWs). Additionally, we found that health care decisions were influenced by partners and cultural expectations of motherhood. Given the importance of motherhood, it is necessary for HCWs to address the diverse sexual needs and reproductive desires of WLHA.     

Pregnancy decisions among HIV-positive pregnant women in Mulago Hospital,Uganda

Pregnancy decisions in women infected by HIV pose important public health and social problems, as they increase risk of both heterosexual and vertical HIV transmission. We sought to explore and gain deeper understanding of reasons why women conceive when they are HIV-positive. Through 22 in-depth interviews and 6 focus-group discussions, motivations for conception among HIV-positive women who came for delivery in Mulago Hospital, Uganda were explored. Participants were selected by maximum variation sampling; and personal, biological, situational and environmental factors were explored. Data was analysed by content analysis. Awareness and belief in vertical transmission risk reduction strategies; disclosure of HIV status; awareness of spouse's HIV sero-status; availability of antiretroviral therapy; gender issues with desire for parenthood; stigma of HIV and childlessness; influence of partners and family members; and the impact of the health of self and family members were factors that motivate HIV-positive women to conceive or influence pregnancy decisions in spite of their sero-status.     

Perspectives on safer conception practices and preconception counseling among women living with HIV

Pregnancies are frequently unplanned, and higher rates of unplanned pregnancies occur among HIV-infected women. Reviewers examined reproductive decision making, conception practices, and patient–provider communication among women living with HIV. Qualitative interviews were conducted with 19 HIV-infected sexually active women aged 18–45 in southern Florida, USA. Using thematic analysis, we found decisions to conceive were influenced by women and partners; knowledge and use of safer conception practices were low. Discussion and support from partners, family, and providers was limited and diminished by stigma and nondisclosure. Preconception counseling discussions in HIV care should be comprehensive and initiated frequently by all health care providers.     

Attitudes towards and perceptions of reproductive health needs of persons living with HIV/AIDS in rural Kilimanjaro,Tanzania

The introduction of antiretroviral treatment has resulted in the resumption of socially productive and sexually active lives of people living with HIV/AIDS, together with the desire for children. However, factors affecting the reproductive health needs of people living with HIV/AIDS are not well understood. With this in mind, the aim of this paper was to investigate factors associated with these health needs using a qualitative approach. Findings indicate that attitudes and perceptions about reproductive health needs are influenced by fertility beliefs, the central role of family, procreation and the perceived social and clinical consequences of pregnancies among people living with HIV/AIDS. While there was mixed opinion about acceptability of people living with HIV/AIDS, having children, marriage and family were institutions important for partnerships maintenance and procreation. These findings suggest that living with HIV in a community with strong pro-life attitudes is challenging for people living with HIV/AIDS who do not have children. Apart from having to grapple with potential stigma of not having children, people living with HIV/AIDS also face social challenges in realising their reproductive choices. Interventions to address stigma, societal changes and the integration of reproductive-health education into HIV care and treatment are needed.     

Fertility Desires Among HIV-Infected Men and Women in Los Angeles County: Client Needs and Provider Perspectives

Combination antiretroviral therapy for persons living with HIV/AIDS (PLHA) has extended life expectancy, and enabled PLHA to live productive lives that can include having children. Despite calls to address childbearing for PLHA there has been limited attention to developing safe conception programs. This research sought to assess the childbearing desires of PLHA and the experiences of health care providers serving this population. Research entailed a brief cross-sectional client survey given to HIV-infected men and women over age 18 at two Los Angeles County clinics administered over an 8-week period. Focus group discussions were conducted with providers at each clinic site. Although 39 % of the 93 clients surveyed reported a desire to have children, two-thirds of clients had not discussed their desires, or methods of safe conception, with providers. Providers reported challenges in providing safe conception services in resource poor settings where clients cannot afford assisted fertility services and in the absence of national, state, or county guidelines for safe conception. They noted complex and varied client circumstances and a critical need for provider training in safe conception. Guidelines that focus on safe conception and harm reduction strategies as well as the legal ramifications of counseling on these practices are needed. HIV providers need training and patients need educational tools and workshops informing them of the risks, challenges, and options available to them and their partners to safely conceive and bear an HIV-negative child.     

HIV infection and fertility preferences in rural Malawi

Although HIV-prevalence and fertility rates in sub-Saharan Africa are among the highest in the world, little is known about how HIV infection affects the fertility preferences of men and women in the region. A quasi-experimental design and in-depth interviews conducted in rural Malawi are employed to examine how and through what pathways learning that one is HIV positive alters a person's childbearing desires. Among rural Malawians, particularly men, the desire to have more children decreases after receiving a positive HIV-test result. The motivations underlying this effect are greatly influenced by gender: women fear the physical health consequences of HIV-positive pregnancies and childbearing, whereas men see childbearing as futile because they anticipate their own early death and the deaths of their future children. Considerable ambivalence remains, nevertheless, particularly among women who strategize to live normal lives in spite of their infection, but whose definitions of "normal" vary.     

Spousal communication about HIV prevention in Kenya

High HIV rates among cohabiting couples in many African countries have led to greater programmatic emphasis on spousal communication in HIV prevention. This study examines how demographic and socioeconomic characteristics of cohabiting adults influence their dyadic communication about HIV. A central focus of this research is on how the position of women relative to their male partners influences spousal communication about HIV prevention. The authors analyze gaps in spousal age and education and females' participation in household decision making as key factors influencing spousal communication about HIV, while controlling for sexual behaviors of both partners as well as other individual and contextual factors. Data were obtained from the 2003 Kenya Demographic and Health Survey for 1,388 cohabiting couples. Information regarding spousal communication was self-reported, assessing whether both, either, or neither partner ever discussed HIV prevention with the other. Analyses showed higher levels of education for the female partner and participation in household decision making are positively associated with spousal communication about HIV prevention. With females' education and other factors controlled, couples with more educated male partners were more likely to have discussed HIV prevention than couples in which both partners have the same level of education. Spousal communication was also positively associated with household wealth status and exposure to the mass media, but couples in which male partners reported having nonspousal sex in the past year were less likely to have discussed HIV prevention with their spouses. Findings suggest HIV prevention programs should promote female empowerment and encourage male participation in sexual health discussion.     

Spousal Communication about HIV Prevention in Kenya

High HIV rates among cohabiting couples in many African countries have led to greater programmatic emphasis on spousal communication in HIV prevention. This study examines how demographic and socioeconomic characteristics of cohabiting adults influence their dyadic communication about HIV. A central focus of this research is on how the position of women relative to their male partners influences spousal communication about HIV prevention. The authors analyze gaps in spousal age and education and females' participation in household decision making as key factors influencing spousal communication about HIV, while controlling for sexual behaviors of both partners as well as other individual and contextual factors. Data were obtained from the 2003 Kenya Demographic and Health Survey for 1,388 cohabiting couples. Information regarding spousal communication was self-reported, assessing whether both, either, or neither partner ever discussed HIV prevention with the other. Analyses showed higher levels of education for the female partner and participation in household decision making are positively associated with spousal communication about HIV prevention. With females' education and other factors controlled, couples with more educated male partners were more likely to have discussed HIV prevention than couples in which both partners have the same level of education. Spousal communication was also positively associated with household wealth status and exposure to the mass media, but couples in which male partners reported having nonspousal sex in the past year were less likely to have discussed HIV prevention with their spouses. Findings suggest HIV prevention programs should promote female empowerment and encourage male participation in sexual health discussion.     

Contraceptive Use and Unintended Pregnancies Among HIV-Infected Women in Mumbai

Background:

Access to reproductive health services in Human Immunodeficiency Virus (HIV) programs can greatly enhance program''s potential to limit the spread of disease, reduce unintended pregnancies and safeguard the health of infected people.

Objectives:

To assess (i) knowledge, attitude, and use regarding contraceptives; safe sex and dual protection; (ii) fertility desires and unintended pregnancies post HIV and (iii) symptoms of reproductive tract infection/sexually transmitted infection (RTI/STI) among women infected with HIV.

Materials and Methods:

A cross-sectional study among 300 currently married HIV-positive women who had not undergone permanent sterilization with no immediate desire for pregnancy. Study site was Integrated Counseling and Testing Centers (ICTC) in tertiary hospitals of Mumbai and women were interviewed using a semistructured questionnaire.

Results:

In spite of good awareness about modern methods, 42.7 felt that contraceptives other than condoms were harmful to use due to their HIV status. Knowledge on dual protection was limited to condom (75%). Condom use increased from 5.7% pre-HIV to 71.7% post-HIV, with 89.6% reporting regular use. Future fertility desire was expressed by 8.7% women. Induced abortions post-HIV was reported by16.6% women, as pregnancies were unintended. About 69% wished to use dual contraceptive methods for effective protection if it was not harmful to be used by people living with HIV (PLHIV).

Conclusion:

Data reveals a need to promote modern contraceptive methods along with regular condom use to prevent unintended pregnancies and improve health-seeking behavior for contraception. Health system models that converge or link HIV services with other reproductive health services need to be tested to provide comprehensive reproductive healthcare to infected women in India.     

Policy maker and health care provider perspectives on reproductive decision-making amongst HIV-infected individuals in South Africa

Background  

Worldwide there is growing attention paid to the reproductive decisions faced by HIV-infected individuals. Studies in both developed and developing countries have suggested that many HIV-infected women continue to desire children despite knowledge of their HIV status. Despite the increasing attention to the health care needs of HIV-infected individuals in low resource settings, little attention has been given to reproductive choice and intentions. Health care providers play a crucial role in determining access to reproductive health services and their influence is likely to be heightened in delivering services to HIV-infected women. We examined the attitudes of health care policy makers and providers towards reproductive decision-making among HIV-infected individuals.     

‘Women at risk’: the health and social vulnerabilities of the regular female partners of men who inject drugs in Delhi,India

Needle and syringe sharing is common among people who inject drugs and so is unprotected sex, which consequently puts their sex partners at risk of sexually transmitted infections (STIs) including HIV and other blood-borne infections, like hepatitis. We undertook a nested study with the regular female partners of men who inject drugs participating in a longitudinal HIV incidence study in Delhi, India. In-depth interviews were conducted with female partners of 32 men. The interviews aimed to gather focused and contextual knowledge of determinants of safe sex and reproductive health needs of these women. Information obtained through interviews was triangulated and linked to the baseline behavioural data of their partner (index men who injected drugs). The study findings illustrate that women in monogamous relationships have a low perception of STI- and HIV-related risk. Additionally, lack of awareness about hepatitis B and C is a cause of concern. Findings also suggest impact of male drug use on the fertility of the female partner. It is critical to empower regular female partners to build their self-risk assessment skills and self-efficacy to negotiate condom use. Future work must explore the role of drug abuse among men who inject drugs in predicting fertility and reproductive morbidity among their female partners.     

Looking to the future: South African men and women negotiating HIV risk and relationship intimacy

This paper examines the approaches heterosexual men and women in South Africa use to engage their partners in discussions of HIV and risk factors in their relationships. These strategies entail balancing the risks of infection while managing the challenges of maintaining a relationship. In a context in which there is a great deal of insecurity in relationships it is especially challenging to discuss HIV risks with partners. Our findings reveal that concerns about children or the desire to have children provided a legitimate basis for discussing HIV risk with partners. The focus of these discussions is on the future for their children. Research in South Africa should attend to men's and women's desires to have and to raise children. HIV prevention and treatment programmes can capitalise on concerns regarding children, and the future of the family, to engage men and women in discussing mutually acceptable strategies for preventing infection and ensuring safe conception.