Lessons learned from the PMTCT program in Swaziland: challenges with accepting lifelong ART for pregnant and lactating women – a qualitative study

Abstract

BackgroundSwaziland has one of the highest HIV prevalence rates in sub-Saharan Africa, 26 % of the adult population is infected with HIV. The prevalence is highest among pregnant women, at 41.1 %. According to Swaziland’s prevention of mother-to-child transmission (PMTCT) guidelines, approximately 50 % of pregnant women are eligible for antiretroviral therapy (ART) by CD4 criteria (<350 cells/ml). Studies have shown that most mother-to-child transmission and postnatal deaths occur among women who are eligible for ART. Therefore, ensuring that ART eligible women are initiated on ART is critical for PMTCT and for mother and baby survival. This study provides insight into the challenges of lifelong ART initiation among pregnant women under Option A in Swaziland. We believe that these challenges and lessons learned from initiating women on lifelong ART under Option A are relevant and important to consider during implementation of Option B+.MethodsHIV-positive, treatment-eligible, postpartum women and nurses were recruited within maternal and child health (MCH) units using convenience and purposive sampling. Participants came from both urban and rural areas. Focus group discussions (FGDs) and structured interviews using a short answer questionnaire were conducted to gain an understanding of the challenges experienced when initiating lifelong ART. Seven FGDs (of 5–11 participants) were conducted, four FGDs with nurses, two FGDs with women who initiated ART, and one FGD with women who did not initiate ART. A total of 83 interviews were conducted; 50 with women who initiated ART and 33 with women who did not initiate. Data collection with the women was conducted in the local language of SiSwati and data collection with the nurses was done in English. FGDs were audio-recorded and simultaneously transcribed and translated into English. Analysis was conducted using thematic analysis. Transcripts were coded by two researchers in the qualitative software program MAXqda v.10. Thematic findings were illustrated using verbatim quotes which were selected on the basis of being representative of a specific theme. The short-answer interview questionnaire included specific questions about the different steps in the woman’s experience initiating ART; therefore the responses for each question were analyzed separately.ResultsFindings from the study highlight women feeling overwhelmed by the lifetime commitment of ART, feeling “healthy” when asked to initiate ART, preference for short-course prophylaxis and fear of side effects (body changes). Also, the preference for nurses to determine on an individual basis the number of counseling appointments a woman needs before initiating ART, more information about HIV and ART needed at the community level, and the need to educate men about HIV and ART.ConclusionWomen face a myriad of challenges initiating lifelong ART. Understanding women’s concerns will aid in developing effective counseling messages, designing appropriate counseling structures, understanding where additional support is needed ...

Challenges and successes in the implementation of option B+ to prevent mother-to-child transmission of HIV in southern Swaziland

“…A possible explanation is that women only initiated ART for the benefit of the unborn child, because they had limited understanding of the subsequent benefit of ART for their own health and in preventing transmission to their infant during breastfeeding [32, 33]. In addition, 9% of women receiving ART did not return for the first drug refill, similar to findings from another study in Ethiopia [31] which may reflect the importance of early treatment adherence support and retention messages especially for mothers with higher CD4 count at the start of their treatment and clinical follow-up [23]. …”

“…Several challenges encountered during the early implementation of PMTCTB+ may have played a role in this setting, such as; patients’ and health workers’ resistance to lifelong ART [20, 22, 23]. Other studies have also reported significant barriers to ART uptake for PMTCT [23–25] although this differs from the experience in Malawi where a nationwide rollout and sensitization may have improved awareness and uptake of the program [26]. As this was a pilot study, no national sensitization could be organized to promote ART acceptance specifically in women who were not eligible for lifelong ART under PMTCA [20].…”

A qualitative analysis of the barriers to antiretroviral therapy initiation among children 2 to 18 months of age in Swaziland

“…A study in Swaziland revealed the need to increase sensitivity among health care providers in understanding ART adherence challenges (Phelps, Hathcock, Werdenberg, & Schutze, 2010). Additionally, a qualitative study of pregnant and lactating women enrolled in a PMTCT program in Swaziland also revealed that women feel overwhelmed with the challenge of coping with lifelong commitment of ART (Katirayi, et al, 2016). …”

“…Considering efforts being made in Swaziland to prevent mother-to-child transmission of HIV (Katirayi et al 2016; Parker et al 2015) to improve pediatric ART initiation, it is imperative to understand multi-level influences on ART initiation among children. The socio-ecological model (SEM) derived from Bronfenbrenner’s (1979) Ecological Systems Theory (EST) has been found useful for understanding multifaceted structural barriers (e.g., poverty-related, institutional, cultural, and political) tied to ART adherence in Southern Africa (Kagee et al, 2011).…”

“Is it making any difference?” A qualitative study examining the treatment‐taking experiences of asymptomatic people living with HIV in the context of Treat‐all in Eswatini

“…Evidence from Prevention of Mother to Child Option‐B+ (Option‐B+) suggests retention in care among women on Option‐B+ is lower than among women starting ART for their own health . HIV status acceptance, treatment readiness and perceived need for treatment in the absence of symptoms can undermine pregnant and lactating women's retention, with some disengaging from care once their perceived objective of protecting the baby is fulfilled . While these findings provide important insights into understanding how asymptomatic PLHIV may respond to ART, the experiences of pregnant and lactating women are likely to differ from those of the general population.…”