Understanding factors that influence pregnancy decision-making and experiences among HIV-positive women is important for developing integrated reproductive health and HIV services. Few studies have examined HIV-positive women’s navigation through the social and clinical factors that shape experiences of pregnancy in the context of access to antiretroviral therapy (ART). We conducted 25 semistructured interviews with HIV-positive, pregnant women receiving ART in Mbarara, Uganda in 2011 to explore how access to ART shapes pregnancy experiences. Main themes included: (1) clinical counselling about pregnancy is often dissuasive but focuses on the importance of ART adherence once pregnant; (2) accordingly, women demonstrate knowledge about the role of ART adherence in maintaining maternal health and reducing risks of perinatal HIV transmission; (3) this knowledge contributes to personal optimism about pregnancy and childbearing in the context of HIV; and (4) knowledge about and adherence to ART creates opportunities for HIV-positive women to manage normative community and social expectations of childbearing. Access to ART and knowledge of the accompanying lowered risks of mortality, morbidity, and HIV transmission improved experiences of pregnancy and empowered HIV-positive women to discretely manage conflicting social expectations and clinical recommendations regarding childbearing.
Women of reproductive age in Sub-Saharan Africa are disproportionately affected by HIV/AIDS, accounting for 80% of the nearly 13 million women living with HIV worldwide [
Understanding factors that influence pregnancy decision-making and experiences among HIV-positive women is important for developing integrated reproductive health and HIV prevention, treatment, and care services [
The primary objective of this qualitative study was to explore how access to ART shapes pregnancy experiences among currently pregnant HIV-positive women in a high HIV prevalence and high fertility setting in southwestern Uganda.
Uganda has one of the highest total fertility rates in the world, estimated at six children per woman [
This study was conducted in Mbarara, a town with a population of 85,000 people located in southwestern Uganda. Study participants were recruited from the HIV clinic within the Mbarara Regional Referral Hospital. The HIV clinic is the region’s primary source for comprehensive HIV care services, which includes ART free-of-charge provided through the Ugandan Ministry of Health with support from the President’s Emergency Plan for AIDS Relief (PEPFAR), the Global Fund, and the Family Treatment Fund [
Over the recruitment period (2011), national antiretroviral treatment guidelines recommended that HIV-positive adults initiate ART at a CD4 cell count below 250 cells/mm3 or below 350 cells/mm3 for those with tuberculosis, pregnancy, or WHO stage III or IV disease [
Women attending the HIV clinic for follow-up care were approached by a clinic nurse to determine eligibility and willingness to participate in the study. Women were eligible to participate in the study if they were HIV-positive, currently receiving ART, pregnant in their 2nd (13–28 weeks) or 3rd (29–40 weeks) trimester, and willing and able to give informed consent for study participation.
Participants were recruited between October and December 2011 via purposive sampling. Upon giving signed informed consent, participants were asked to complete a brief interviewer-administered intake questionnaire to collect participant age, education level, marital status, number of children, date of HIV diagnosis, duration of ART use, HIV status of the father of the current pregnancy, and if HIV positive, whether this partner was taking HIV medication. After completion of the intake questionnaire, a semistructured in-depth interview was conducted in a private setting adjacent to the clinic. Interviews were conducted in Runyankole, the dominant local language. Using an inductive approach, the interview guide included questions aimed at identifying social- and structural-level factors that shaped pregnancy desires and pregnancy experiences of HIV-positive women. On average, each interview lasted one hour. Participants were compensated for costs associated with transportation to the clinic.
Interviews were audio-recorded and detailed notes were taken during the interview process. Both the primary researcher (JK, interviewer) and research assistant (NF, translator) were present during all interviews. The research assistant was fluent in English and Runyankole. All participants spoke Runyankole, and thus questions and answers over the course of the interview were translated between the participant and primary researcher by the research assistant. While there were initial concerns by the research team that participants might feel uncomfortable having both an English speaking interviewer and translator present during the interviews, early interviews revealed this strategy to be conducive to open dialogue and consistent with Mitchell’s observation that study participants often prefer to be interviewed by someone outside of the local clinical or community context [
Audio-recordings of the interviews were translated into English and transcribed. Transcripts were independently reviewed and coded and emergent themes were discussed by the research team. Thematic analysis and content analysis as described by Berg [
All participants provided voluntary informed consent at study enrolment. Ethical approval for all study procedures was obtained from the Faculty of Medicine Research and Ethics Review Committee and the Institutional Ethics Review Board of Mbarara University of Science and Technology (MUST) (Mbarara, Uganda) and the Research Ethics Board of Simon Fraser University (Burnaby, Canada). Consistent with national guidelines, study clearance was provided by the Uganda National Council of Science and Technology (UNCST) (Uganda).
We interviewed 25 HIV-positive pregnant women, 84% of whom were married or cohabiting. Participants’ median age was 29 years (interquartile range (IQR) 27–32) and 32% had a secondary school education or higher. All women were on ART: among the 80% of women diagnosed with HIV prior to the current pregnancy, half started ART prior to the current pregnancy and the remainder started ART during it. The remaining 20% of women were diagnosed with HIV and commenced ART during the current pregnancy. Median duration of ART use was 6 months (IQR 3–24). Twenty percent of women were nulliparous, 36% had 1-2 prior live births, and the remaining 44% had three or more prior live births. Twenty-eight percent of women had experienced the death of a child. Average duration of current pregnancy was 7 months (IQR 6–8). Eighty-eight percent of women reported HIV serostatus disclosure to their current partner, 80% of whom had disclosed prior to the current pregnancy. Overall, 64% of the participants’ partners were reported to be HIV-positive, 16% were HIV-negative, and 20% of women did not know their partner’s HIV-status. Of the 64% of partners who were HIV-positive, 75% were accessing HIV care (Table
Characteristics of study sample.
Characteristic | HIV-positive pregnant women ( |
---|---|
Median age (years) | 29 (27–32) |
Education level | |
Less than secondary school | 17 (68%) |
Secondary school or higher | 8 (32%) |
Marital status | |
Currently married or living as married | 21 (84%) |
Not currently married | 4 (16%) |
Diagnosed with HIV | |
During current pregnancy | 5 (20%) |
Prior to current pregnancy | 20 (80%) |
Receipt of ART prior to current pregnancy | |
Yes | 10 (40%) |
No | 10 (40%) |
N/A (diagnosed with HIV during pregnancy) | 5 (20%) |
Median number of months receiving ART | 6 [3–24] |
Median gestation of current pregnancy (months) | 7 [6–8] |
Number of previous live births | |
0 | 5 (20%) |
1-2 | 9 (36%) |
3+ | 11 (44%) |
Median number of previous live births | 2 (1–4) |
Number of living children | |
0 | 6 (24%) |
1-2 | 11 (44%) |
3+ | 8 (32%) |
Experienced the death of a child | |
Yes | 7 (28%) |
No | 13 (52%) |
N/A (nulliparous) | 5 (20%) |
Disclosed HIV status to partner* | |
Yes | 22 (88%) |
No | 3 (12%) |
Disclosed HIV status to partner prior to current pregnancy | |
Yes | 20 (80%) |
No | 5 (20%) |
Partner’s HIV status* | |
HIV-positive | 16 (64%) |
HIV-negative | 4 (16%) |
Do not know | 5 (20%) |
Partner on Medication* | |
Receiving ART | 4 (16%) |
On Septrin | 2 (8%) |
On medication (unknown) | 7 (28%) |
Not on medication | 3 (12%) |
Partner HIV-status negative or unknown | 9 (36%) |
The findings are presented as factors that influenced women’s views about pregnancy as an HIV-positive woman. These data suggest four main themes that shape the pregnancy experience: (1) clinical counselling about pregnancy for HIV-positive women is largely dissuasive but focuses on the importance of ART adherence once pregnant; (2) women demonstrate knowledge about the role of ART in reducing risks to maternal health and of perinatal HIV transmission; (3) this knowledge contributes to personal optimism about pregnancy and childbearing in the context of HIV; and (4) access and adherence to ART creates opportunities for HIV-positive women to discretely manage normative social expectations of childbearing. Each theme is discussed further below.
Eight out of 23 women (35%) reported speaking to a health care provider about pregnancy prior to or after becoming pregnant. These women explained that counselling about childbearing was largely dissuasive and emphasized the importance of bearing few or no children to protect their health and families. They tell us that giving birth now and again reduces your life span so I decided to reduce the number of children I want. That made me want to stop on the two. ( I have not talked about pregnancy planning [at the clinic] but we are always told about family planning and not to give birth to many [children] because you may fail to support them [due to health risks associated with being HIV-positive]. ( They tell us we should not give birth when we are infected, how to care for ourselves, positive living, and adherence to medication. ( Before starting on ART, I went to the counselor and was told that adhering to ART is up to you. What they can do is provide the medication to decrease viral load hence less chances of transmission and if [you’re] lucky the child will be negative. [ I was so scared when I was told I was positive in the beginning but when I came here [to the HIV clinic] and talked to some of the [mothers], they shared with me that they were positive and gave birth to children who are now four years and negative so I got hope. (
While few participants reported conversations about pregnancy with a health care provider that went beyond advice to avoid pregnancy, nearly all had been counseled about the importance of ART adherence to maintain the woman’s health and prevent perinatal transmission.
Despite limited formal counselling about pregnancy outside of ART adherence, peer support at the clinic gave participants optimism about pregnancy. In clinic waiting rooms, women reported meeting other healthy, HIV-positive women, who had given birth to healthy children. These encounters inspired HIV-positive and pregnant women to follow clinic guidelines about adhering to medication for their own health and future child.
After learning their HIV-positive serostatus, most women feared the risks of bearing and rearing an HIV-infected child. I [was okay with] giving birth before finding out about my [HIV] status but later when I became [aware that I was] positive, that ceased because I thought I would give birth to an infected child. ( When I first learnt my [HIV] status I felt stuck. [ What has changed [now that I am on ART] is I am hopeful that I can give birth to an HIV-negative child [with this pregnancy] but I am not adding more children. (
However, nearly all women who expressed this fear also reported that access to ART and knowledge of the accompanying lowered health and transmission risks changed the experience of pregnancy and childbirth.
Women expressed that while knowledge of their HIV status lowered their desired number of children and that starting ART did not change their fertility desire, taking ART made them optimistic about their chances of maintaining their health during and after the pregnancy and their ability to care for their children.
Participants described that pregnancy decision-making is seldom made at an individual level; rather it is highly influenced by the desires and expectations of partners, families, and the community. Women’s individual views about pregnancy are shaped by their perceptions of gendered roles within society. Narratives revealed that normative gender roles of childbearing create a tension for HIV-positive women attempting to balance their own health alongside the social expectation of motherhood. Well, some pressures may be there to have children. For example if you are married and [have] no children, your husband will be told you are barren, and then he gets another woman. ( If you do not have a child, it does not secure your position in the family and your assets will be taken by someone else. (
For some women, their partners agreed with their wish to stop reproducing after the current pregnancy. These decisions to stop childbearing were linked to a desire to focus on supporting the mother’s health and their existing children.
Other women reported that their partners wanted more children, regardless of the woman’s preferences. One woman, with two children and pregnant for the fifth time, reported acquiescing to her husband’s wish for another child in order to avoid marital conflict. My husband insisted and complained but according to my planning I wanted to stop on the two I had. We had family conflicts to a point of failing to stay together so I decided to comply. ( When I reached home and told my aunties, they were supportive. They counseled me telling me they are there to help and if I take ART I would be okay, [and so would] the baby, so I calmed down. ( My mother was not happy [when I told her I was not taking ART] and told me if I did not go for medication she would not care for me when I became sick. (
Twenty-two (88%) women had disclosed their HIV status to their partners (Table
Similar to the clinical counselling, the family support women received focused on ART adherence to stay healthy during pregnancy and postpartum. Women explained that once they told select family members that they were pregnant, they received reminders about their clinic review dates, financial support, transport money to the clinic, and advice about breastfeeding and maternal health.
However, even while supporting the women and understanding HIV, family members still expected women to give birth to children. This was most apparent when talking to women who had few children. The work of the woman is to give birth, so if you have not given birth you have not done anything for him [the husband or the family]. ( When I got married I spent two years without a child [
Women explained that being HIV-positive and pregnant puts their health at risk. At the same time, women described that the personal and social risks of rejecting expectations to bear children were greater than the health risks of pregnancy.
Despite improvements in health and everyday life with access to HIV treatment, social stigma related to being HIV-positive and HIV-positive and pregnant is pervasive. Only two women (8%) stated that they had disclosed their status to their village community. Women described disclosure to her social network as something that was not required when on ART. Further, women explained that they used ART as a tool to help fulfill personal and societal expectations of childbearing, without having to expose themselves to the stigma of being HIV-positive and pregnant. One woman explained why she only disclosed her HIV status to her partner: I felt if I can remember to take my drugs and come on the appointment date there was no need of telling them [family and community]. Even, when you tell them [your status], instead they start laughing at you [and may not believe you] [ If I know my time for medication, I just take it and I do not have to tell them [the community]. ( [Before starting ART] I was so weak and had to be supported but now [I] am okay. People had been saying I was positive but after [I started ART] I became healthier and even the gossip stopped. I was so energetic. (
Women reported that taking ART allowed them to avoid disclosure, discretely proceed with pregnancy, and avoid stigma. One woman stated that:
Women described that access to ART allows them to choose to disclose their HIV status to supportive family or friends while also managing social expectations, gender roles, and gossip:
In this qualitative study with pregnant, HIV-infected women accessing care in rural Uganda, women described challenges negotiating their personal reproductive goals in the context of dissuasive pregnancy messages from healthcare providers and social pressures to have children. With the support of peers and families, most women prioritized adherence to ART as a strategy to balance their own health, have an HIV-negative baby, and meet the social and gendered expectations of childbearing. Women’s pregnancy views and experiences were thus shaped through a combination of ART treatment, clinic counselling, family, and peer support. These data suggest that among HIV-infected pregnant women in Uganda, views about and desires for pregnancy were not determined by individual choices alone but reflect larger social and clinical expectations.
Although most participants reported knowing their HIV status and many initiated ART prior to the current pregnancy, few women reported talking about pregnancy with their healthcare provider due to perceptions of provider disapproval of HIV-positive women having children. Women reported being primarily advised against childbearing in order to maintain their own health. These findings are consistent with those from other studies in Uganda [
In the absence of formal counselling about pregnancy, we observed that women rely on community resources to navigate the issues of pregnancy and HIV-positive status. In particular, we found that informal discussion among other positive women at the clinic was an important source of support and information, particularly about decreased risk of perinatal HIV transmission when adhering to ART. While the participants in this study (who are all enrolled in HIV treatment and care) represent only a small fraction of the population of HIV-positive women at risk for pregnancy, our findings suggest that discussion about pregnancy experiences is happening among HIV-positive women attending clinic services, and these discussions are contributing to an informal social support network. Similar observations have been reported in studies about the benefits of peer counselling in helping people living with HIV to experience increased well-being and reduced isolation [
Availability of formal counselling for women who choose to conceive is not common, and partially due to competing demands for provider time and limited resources [
The high incidence of pregnancy among HIV-positive women both before [
Current information from healthcare providers does, however, translate into women’s understandings of how ART may help achieve reproductive goals with lowered risks to maternal, partner, and child health. Such knowledge positively impacted women’s views about pregnancy. Women were optimistic about the opportunity to maintain their own health such that they could care for their children in the future, reduce perinatal HIV transmission risks, and avoid social stigma. Previous quantitative studies about ART optimism have suggested that ART plays a role in influencing fertility desire among HIV-positive women [
The majority of women disclosed their HIV status to partners and family members who provided supportive advice about living with HIV and pregnancy. However, disclosure at the community level remained rare and several women expressed fear of HIV-related stigma. This finding is consistent with other recent studies [
Within and beyond the clinic setting, HIV-positive women continue to experience conflicting pressures related to pregnancy [
Our qualitative study was limited to HIV-positive pregnant women in their second and third trimester. Thus, women who participated had likely accepted their pregnancy and may have portrayed more optimistic messages than women in their first trimester. All participants were attending a tertiary-care HIV clinic in southwestern Uganda and cannot be used to generalize to all women in Uganda who are HIV-positive and/or are unaware of their infection or women living elsewhere. Women accessing care at a tertiary level may also be unique in the level of social support and clinic care that they receive.
Our findings highlight that HIV-positive women’s pregnancy experiences are a reflection of and cannot be dissociated from larger familial, communal, and clinical influences. With treatment, HIV-positive women are optimistic that they can lead healthy lives and bear HIV-negative children. Understanding of HIV prevention and treatment within families and communities creates a more receptive environment for women to disclose their HIV status and receive support. Clinic counselling about ART adherence for the health of HIV-positive women and their future children is a good first step in HIV prevention and care. However, public health messaging must target HIV-positive women, healthcare providers, and the broader community to increase awareness of pregnancy experiences among HIV-positive women on ART and how to best support women to achieve reproductive goals, while minimizing risks to maternal, partner, and child health. Such an approach constitutes an important step towards the design of comprehensive reproductive health programming for women living with HIV.
The authors have no conflict of interests to declare.
The authors are grateful to the women who agreed to participate in this project. They wish to thank the HIV clinic providers and on-site research staff who helped facilitate the project. Funding for this study was provided, in part, by the U.S. National Institute of Health Grant no. R21HD069194. L. T. Matthews received support from K23MH095655.