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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.
Uganda has one of the highest total fertility rates in the world, estimated at six children per woman [20]. HIV prevalence among adults (aged 15–49 years) is estimated at 7.3%, with higher prevalence among women (8.3%) [21]. 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 [22]. 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 [23]. 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 [24]. This interview method helped to elucidate various sociocultural norms since participants provided in-depth explanations of customs that may have otherwise been assumed to be understood. Immediately after completion of each interview, the primary researcher and research assistant discussed and reviewed interviews together to gather a comprehensive understanding of main themes and observed reactions [25–27]. 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 [28] and Ulin et al. [29] were used to explore initial interpretations formed during data collection and transcript review. 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).
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