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While global scale-up of prevention of mother-to-child transmission of HIV (PMTCT) services has been expansive, only half of HIV-infected pregnant women receive antiretroviral regimens for PMTCT in sub-Saharan Africa. To evaluate social factors influencing uptake of PMTCT in rural Kenya, we conducted a community-based, cross-sectional survey of mothers residing in the KEMRI/CDC Health and Demographic Surveillance System (HDSS) area. Factors included referrals and acceptability, HIV-related stigma, observed discrimination, and knowledge of violence. Chi-squared tests and multivariate regression analyses were used to detect stigma domains associated with uptake of PMTCT services. Most HIV-positive women (89%) reported blame or judgment of people with HIV, and 46% reported they would feel shame if they were associated with someone with HIV. In multivariate analyses, shame was significantly associated with decreased likelihood of maternal HIV testing (Prevalence Ratio 0.91, 95% Confidence Interval 0.84-0.99), a complete course of maternal antiretrovirals (ARVs) (PR 0.73, 95% CI 0.55-0.97), and infant HIV testing (PR 0.86, 95% CI 0.75-0.99). Community perceptions of why women may be unwilling to take ARVs included stigma, guilt, lack of knowledge, denial, stress, and despair or futility. Interventions that seek to decrease maternal depression and internalization of stigma may facilitate uptake of PMTCT.
In order to assess the contextual environment of access to (and uptake of) PMTCT services in Western Kenya, we conducted a cross-sectional community-based survey during early 2011 of mothers who had recently delivered an infant and who were residents in the KEMRI/CDC Health and Demographic Surveillance System (HDSS) area. The HDSS covers 385 villages in in Western Kenya with a population of approximately 220,000.15 All regions in the HDSS are rural, and a resident is defined as having lived in the area continuously for at least 4 months. The sampling framework utilized pregnancy information, as well HIV status from recent but incomplete home-based testing campaigns, available in the HDSS dataset. Given a regional 8% HIV prevalence, a larger random community sample than budget allowed would have been required to enroll sufficient HIV-positive women, thus we generated two samples to assess uptake of services targeting women in the community generally as well as HIV-positive women specifically. These included a random sample of women aged 14 and older who had delivered within the previous year (January to December, 2010) and a comprehensive sample of HIV-positive women in areas where home-based counseling had previously taken place. In the random sample, we surveyed 405 women, of whom 43 reported being HIV-positive. Among 275 women in the HDSS database known to be HIV-positive through previous home-based testing, 247 consented to participate, though only 173 women self-reported as HIV-positive to new interviewers. As HIV status was measured via self-report in both populations, and regions were demographically similar, we combined data from the random sample and the oversample to total 216 self-reported HIV-positive women. Quantitative and qualitative information were collected in face-to-face interviews by trained fieldworkers. In addition to questions of socio-demographics, uptake of health services, and knowledge of PMTCT, women were asked to describe their perceptions of why women in the community do or do not engage in PMTCT care. Eligible women were asked to respond to open-ended questions, which were entered in handheld PDAs. Multiple answers were accepted. Prior to disclosing HIV status, women were additionally asked hypothetical questions such as “if you were diagnosed with HIV, would you seek care at the same facility for your next pregnancy?” Fieldworkers were blinded to prior HIV test results of participants, thus participant self-reported HIV status was used. Stigma questions were also asked prior to disclosure of HIV status and focused on the community-level indicators derived from a validated toolkit within the domains of moral values of shame and blame/judgment, and enacted stigma or discrimination.14 To assess shame, participants were asked if they would feel ashamed if they were HIV-positive or if they were associated with someone who was HIV-infected. Blame and judgment was assessed through statements such as “HIV is a punishment from God” or “People with HIV are promiscuous.” To assess discrimination, women were asked if they had ever known someone in the community that had any of a list of discriminatory acts happen to them because of HIV/AIDS in the last year. A yes or agree response to any of the questions within each type of stigma (shame, blame/judgment, or discrimination) counted as an affirmative response. Questions on known domestic violence and abuse were included, but women were not asked to disclose whether they personally experienced abuse or violence. Outcomes of interest along the continuum of PMTCT services included uptake of antenatal care, HIV testing among women attending antenatal care (ANC) who were not previously known to be HIV-positive, and uptake of maternal and infant antiretrovirals (ARVs) and of infant HIV testing among HIV-positive women. Data were collected and managed using Pendragon Forms (Pendragon Software, Chicago, IL). Quantitative information was analyzed using STATA SE version 11 (STATACorp, College Station, TX). Proportions were assessed using chi-square tests of significance with Fisher’s exact tests. Wilcoxon rank-sum tests were used for comparing distributions of linear data. Stigma outcomes were further assessed using generalized linear models to detect prevalence ratios adjusting for variables hypothesized a priori. Qualitative responses were translated from the local Dholuo language to English by the study team fluent in both languages, then coded into themes and validated by the lead author and a Kenyan social scientist. Written informed consent was obtained from all participants, both to participate in the study and also to have their data from these surveys linked to their HDSS record. HDSS residents who were sampled using HBTC results had previously consented to allow use of their data for sampling. The study was approved by the University of Washington Institutional Review Board (#36022) and the Kenya Medical Research Institute Ethical Review Committee (#1714).
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