These results identify challenges and barriers faced by pregnant and postpartum women when deciding to initiate ART under Option A, where only women with more advanced disease had ART recommended to them. Option B+ also requires a lifelong commitment to ART, therefore understanding the barriers women experienced under Option A can help to strengthen the acceptability of Option B+. These findings highlight the challenges of accepting lifelong ART and the need for more counseling during ART initiation.
Challenges accepting lifelong ART
Many factors contribute to the challenge of accepting and initiating lifelong ART, including: the fear of developing resistance; disclosing one’s HIV status or dealing with a lifetime of hiding medications, and accepting and acknowledging one’s HIV status daily by taking medication.
Both women and nurses discussed the challenge of pregnant women initiating ART when they feel healthy despite having a low CD4 cell count. Under Option B+, the requirement for a woman to have a low CD4 count or advanced disease symptoms is removed and the short-course prophylaxis option is no longer available; therefore, more women who feel healthy will be offered ART. During the piloting of Option B+ in Swaziland, ART initiation rates were significantly lower among women with a high CD4 count: 59 % of women with CD4>350 initiated ART before 32 weeks gestation, compared with 80 % of women with CD4<350 [15].
Women who may have known their HIV status previously or anticipated that they may be HIV-positive may require fewer counseling sessions prior to initiating ART, while those struggling to accept their new HIV status and need to initiate ART may require more sessions. These women may need time to accept their HIV status, to disclose to a partner or family and be emotionally prepared to commit to lifelong ART. A study in Swaziland found that those who knew their HIV status before attending ANC were more likely to begin ART compared with those who were newly diagnosed during their ANC visit [15]. Research has also shown that loss to follow-up (LTFU) is greatest in the first 3 months after women are given ART under Option B+ when using the same day initiation approach [16]. Providing the opportunity for women to receive additional counseling sessions before initiating ART, especially among those newly diagnosed as HIV-positive, may reduce LTFU. In addition, a study on Option B+ in Malawi found that facilities that offered additional adherence counseling beyond the required national guidelines had lower rates of early LTFU [16]. Some women may require additional counseling due to personal circumstances such as an unanticipated HIV diagnosis, having a support structure which allows for disclosure and being knowledgeable about HIV and ART. Previous research has stressed the importance of understanding the variability in personal circumstances when it comes to counseling regarding ART and adherence [17]. Nurses in this study advocated for the ability to decide how many counseling appointments women need on an individual basis. This is an important factor to consider with Swaziland’s continued roll-out of Option B+.
Fear of developing ART resistance is a commonly cited barrier to treatment [18]. Study participants were aware that good adherence was necessary to avoid developing resistance. This awareness, however, also presented as a barrier for initiating ART, as some patients delayed initiation until they felt “ready to adhere for life.” In addition to the fear of not being able to be adherent and developing resistance, some participants believed that if they stopped taking ART at any point they would die. This concern has also been documented in other studies [19].
To help patients accept lifelong medication, some of the nurses discussed comparing HIV/AIDS to other chronic diseases which require lifelong medication, such as diabetes. They believed that these kinds of comparisons helped women to accept lifelong medication easier by not seeming so “different” from others. This approach could help mitigate the fear some patients have that being HIV-positive makes them different from other people [20].
Requesting the short-course prophylaxis was one way women attempted to avoid the commitment to lifelong ART and still provide protection to their unborn child. Strengthening the counseling messages to ensure that women understand how lifelong ART also benefits their health and partner’s health in addition to their child’s health is important [21]. The new messaging around Option B+ will be critical, as the previous messaging stated that ART is only for those with a CD4 count greater than 350 [15].
To avoid initiating lifelong ART, study participants discussed using drugs, herbs, and concoctions to raise the CD4 count above 350. Other studies have also cited the use of herbs and plants to raise CD4 counts [20]. These findings illuminate the lengths that some individuals are willing to go to avoid initiating ART. These fears and concerns about ART will continue unless they are dealt with directly through improved counseling and messaging.
More information about ART
The results of this study highlight a clear need for sharing more information about ART, including its benefits and side effects, for the general population and for women at health facilities. The challenge of side effects has been frequently discussed in the literature [18, 22] and was also documented in this study. The descriptions of side effects in the reviewed literature focus on discomfort, such as headache, diarrhea, weight gain, dizziness, nightmares, nausea, pain and fatigue [18] while the side effects discussed in our study focus on changing physical features and deformities; study participants often mentioned “becoming ugly, looking like a man, losing the shape of one’s behind,” etc. Fear of treatment-induced body changes has also been discussed in a qualitative study from Zambia [20]. Nurses explained that such side effects are associated with ART and demonstrate the fear of undesired disclosure and potential stigma [23]. The nurses in this study mentioned that the side effects associated with disfiguration were often the result of stavudine, an ARV drug that is no longer in use. However, the discontinuation of this drug has not been discussed with the women or community at large. Information about the new drugs being used with fewer side effects under Option B+ needs to be communicated to the public.
Other research has cited the need for providing more information about PMTCT to the general public [24]. During the FGDs, nurses discussed that due to time constraints, they were often unable to spend adequate time in the community providing health education. However, the nurses acknowledged information and education needs to be shared beyond women receiving services at the facility.
Study participants often discussed the need for improved messaging targeting men. Previous research has stated that men lack the opportunity to be taught about HIV/AIDS and ART, as women may utilize health facilities more than men because of pregnancy [19]. In this study, both the women and nurses discussed Swazi men lacking information and education about HIV.
Nurses recommended engaging men by providing HIV testing at locations that men frequent. A review of male involvement initiatives in PMTCT provided a few recommendations including restructuring maternal health clinics so that they are culturally and practically acceptable to men, changing social and behavioral norms through use of peer programs and community leaders and adding outreach programs such as providing HIV testing at home, personal invitations and other approaches, but results are very mixed across country settings [25].
Study participants also discussed that Swazi men have strong fears about HIV testing and claimed that some men even discourage their partners from receiving ANC services [26], as some men assume that their partner’s positive status is an indication of their own HIV status [27, 28]. One study noted that some women experienced direct discouragement from their partner and that women who did not live with their boyfriends had more support to join a PMTCT program [24] which could perhaps be attributed to stigma and fear of ARVs being seen in the house. In a study in Lesotho some nurses claimed that fear of disclosing to the partner is the main obstacle, as the men will then blame the woman for bringing HIV into the house [29].
With Option B+ significantly increasing the number of women that will begin lifelong ART, it will become even more important to engage the community, especially men about the importance of lifelong ART to ensure women receive support to initiate and adhere to ART. The nurses recommend that men receive information about HIV and ART at the locations they frequent such as “dip tanks”, churches and community meetings. Other organizations in Swaziland are currently informing and educating men about HIV at their workplaces (especially in the urban areas). However, more information is needed about where is the best place to provide educational messages to men, who would be the best persons to provide these education messages to men, which messages are most effective with men and where is the best place for men to receive HIV tests.
Strengths and limitations
One of the strengths of this study was the use of two data collection methods (interviews and FGDs) to understand both the individual experience and the general perspective of pregnant women and nurses. One limitation was interviews being conducted by nurse midwives who may have been involved in the care of study participants. Another limitation was having only one FGD with women who did not initiate ART; this was a result of challenges recruiting this population.