Background Though antiretroviral therapy (ART) is widely available, HIV positive pregnant women in Zambia are less likely to start and remain on therapy throughout pregnancy and after delivery. This study sought to understand readiness to start ART among HIV pregnant women from the perspectives of both women and men in order to suggest more holistic programs to support women to continue life-long ART after delivery. Methods We conducted a qualitative study with HIV positive pregnant women before and after ART initiation, and men with female partners, to understand readiness to start lifelong ART. We conducted 28 in-depth interviews among women and 2 focus group discussions among male partners. Data were transcribed verbatim and analyzed in NVivo 12 using thematic analysis. Emerging themes from the data were organized using the social ecological framework. Results Men thought of their female partners as young and needing their supervision to initiate and stay on ART. Women agreed that disclosure and partner support were necessary preconditions to ART initiation and adherence and, expressed fear of divorce as a prominent barrier to disclosure. Maternal love and desire to look after one’s children instilled a sense of responsibility among women which motivated them to overcome individual, interpersonal and health system level barriers to initiation and adherence. Women preferred adherence strategies that were discrete, the effectiveness of which, depended on women’s intrinsic motivation. Conclusion The results support current policies in Zambia to encourage male engagement in ART care. To appeal to male partners, messaging on ART should be centered on emphasizing the importance of male involvement to ensure women remain engaged in ART care. Programs aimed at supporting postpartum ART adherence should design messages that appeal to both men’s role in couples’ joint decision-making and women’s maternal love as motivators for adherence.
This study was conducted in two urban health centers in Lusaka District, Zambia, approximately one year after introduction of Option B+ in Zambia (i.e., universal and lifelong ART for all pregnant and breastfeeding women living with HIV). Health centers were purposively sampled in consultation with the Lusaka District Health office to include urban government facilities with medium to high patient volume and physical space for study activities at the clinic. Lusaka district is one of four districts within Lusaka Province, which is home to approximately 20% of Zambia’s population of 17 million [12]. Most residents in Lusaka District live below the poverty line in high-density peri-urban slums or “compounds” with poor access to safe water and sanitation. Similar to many countries in sub-Saharan Africa, the HIV epidemic disproportionately impacts individuals living in urban areas in Zambia with Lusaka province having the highest prevalence of HIV infection among adults (15.7%) [13]. The objective of this study was to understand readiness to start lifelong ART among HIV-infected pregnant women. Findings from this study were subsequently used to develop and evaluate a quantitative tool to assess ‘readiness’ for ART initiation and an intervention package aimed at supporting adherence and retention on treatment among the pregnant population, for which results are presented elsewhere [14]. This project was reviewed in accordance with Centers for Disease Control and Prevention (CDC) human research protection procedures and was determined to be research, but CDC investigators did not interact with human subjects or have access to identifiable data or specimens for research purposes. Ethical approval for the study was obtained from the University of Zambia Biomedical Research Ethics Committee (# 015-11-13) and the University of North Carolina at Chapel Hill Institutional Review Board (# 13–3884). HIV-infected pregnant women not yet on ART (pre-ART group) and HIV-infected pregnant or postnatal (≤42 days after delivery) women on ART (post-ART group) were recruited to participate in in-depth interviews (IDIs). Partners of women who were recently or currently pregnant were also recruited into the study to participate in focus group discussions (FGDs) in an effort to understand male perspectives on barriers and facilitators of ART initiation and adherence. Male partners may or may not have been the partners of women participating in IDIs, and did not necessarily have partners living with HIV. All participants in the various study groups were ≥18 years old, did not have a known history of mental illness, were able to communicate in one of the three languages used in the study (English, Nyanja or Bemba) and provided written informed consent to participate in the study. The target sample size needed to reach saturation of themes and patterns emerging from data related to the beliefs, behaviors, and experiences of men and women in each study group was determined prior to sampling and data collection [15,16]. Study participants were recruited using convenience sampling. Women presenting at ANC visits or under-5 clinics at the selected urban health centers were sensitized about the study during the daily routine group health talks. Women interested in the study were screened for study participation. In addition, women were identified through their health records, in collaboration with the health facility staff, and all those meeting inclusion criteria were approached on an individual basis for study participation. All eligible women were recruited after providing informed consent. Sensitization about the study for men was done in the general outpatient clinic, TB or ART clinics at the same health facilities. Men were approached individually to establish interest and those interested were screened for study participation. In addition, community sensitization was done through community leaders; men were then approached individually in the community in various places including markets, bus-stops, churches and other public spaces. Those interested in participating were then invited to the study site and screened for study participation. Eligible men were recruited after providing informed consent. Recruitment of men outside the health facilities was done in order to minimize bias towards men with positive health-seeking behavior. Data were collected between June and September 2015. Topics shown previously to be important when measuring ART readiness were covered in IDIs, namely: disclosure, partner involvement, psychosocial issues, HIV medication beliefs, and alcohol and drug use [17]. To understand individual barriers and facilitators of ART initiation, we assessed women’s knowledge and understanding of ART, their experiences with stigma and discrimination, their existing support structures, and their individual motivations (see S1–S3 Files). HIV-infected pregnant women were enrolled and interviewed before or within seven days of ART initiation (pre-ART group) and then a subset of these women was asked to participate in an additional IDI 2–3 months after their first IDI to assess changes in barriers to initiation over time. Participants who had already initiated ART at presentation (post-ART group) were asked about barriers and facilitators to ART adherence, with topics including: social support, distance from clinics and transportation, cultural norms, partner involvement, patient-provider relationships, HIV-related stigma, and experiences at health facilities. Participants were asked to assess the quality and effectiveness of adherence services already received (e.g., adherence counselling); they were also asked for suggestions for additional or alternative services that could be provided to help improve adherence to ART. FGDs with men who currently have female partners who are/were recently pregnant concentrated on their knowledge about HIV and PMTCT, factors that impact starting and adhering to ARVs among pregnant women, and the level of men’s engagement in their partner’s healthcare during and after pregnancy defined as support in the home or at clinic visits. All IDIs and FGDs were conducted in English, one of Zambia’s official language, or one of two local languages (Nyanja and Bemba) by research staff fluent in all three languages, and were audio-recorded. IDIs and FGDs were held in the language of participant preference, which was determined at the beginning of each FGD, and held in a private setting at one of the two study clinics or the Centre for Infectious Disease Research in Zambia (CIDRZ) research facility in Lusaka, Zambia. Audio recordings of IDIs and FGDs were transcribed verbatim and translated from local languages of Nyanja and Bemba to English by trained research assistants, where necessary. The social ecological framework [18] was selected a priori to organize emerging themes for barriers and facilitators of ART initiation and adherence. The social ecological model is a theory-based framework for understanding the interactive effects of individual, interpersonal, health system level and structural factors of behavior. We defined individual level factors as those within a woman’s control and awareness; interpersonal level factors as a woman’s primary relationships affecting her ART treatment, health system level factors as health care structure and design; and structural level factors as women’s socio-economic environment. Within levels of the social ecological model, two coders used inductive thematic analysis to code the text in the data. Inductive thematic analysis is a comprehensive process involving reading through the transcripts for familiarization and identifying emerging key themes and codes which are then entered into a codebook [19]. Coding was compared amongst the two coders for consistency and similarity. The categorization and labeling of emergent themes were reviewed, defined and standardized by the two coders (AK, TK) and any discrepancies in coding were resolved by an independent qualitative expert (AS). Once the emergent themes were reviewed, these were defined and appropriately labeled by the two coders. All data were coded using NVivo 12 (QSR International, Melbourne, Australia) software.
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