Adolescent Girls and Young Women’s Experiences with Disclosing Oral PrEP or Dapivirine Vaginal Ring Use: a Multi-Country Qualitative Analysis

Adolescent girls and young women (AGYW) in Eastern and Southern Africa are disproportionately impacted by HIV, accounting for more than a quarter of all new HIV diagnoses despite representing only 10% of the total population [1]. Moreover, AGYW have 2–7 times higher risk of HIV acquisition than their male counterparts [2‐5]. Daily oral pre-exposure prophylaxis (PrEP) has been shown to be an effective HIV prevention method for heterosexual women and has been offered for AGYW in the region through national programs and demonstration projects since 2016 [6‐9]. More recently, the dapivirine vaginal ring (ring) has also proven to be efficacious in preventing HIV acquisition in Eastern and Southern Africa [10, 11]. The ring is designed to be worn continuously for one month and replaced with a new ring thereafter. The World Health Organization (WHO) recently recommended the ring as a supplementary method to oral PrEP for HIV prevention among women, but both rely on adequate adherence to be effective [12].

For AGYW using oral PrEP, fear of disclosure to key influencers (e.g., family, friends, and partners) has been one of many documented challenges to oral PrEP adherence [13‐15]. These fears stem primarily from sexual and HIV-related stigma and misinformation about product use [16‐18]. AGYW have also reported fear of disclosure due to community norms around adolescent sexuality and healthcare worker concerns about promoting behavior that is culturally taboo, such as multiple sexual partners or sex before marriage [19]. Positive experiences with disclosure can be an empowering way to combat stigma and misinformation, and AGYW who have had positive disclosure experiences have been reported to also have higher oral PrEP adherence [17, 18, 20, 21].

Little research has been conducted on ring use among AGYW in Eastern and Southern Africa. Among adult women, positive disclosure experiences among peers, partners, and family were reported to positively influence product acceptability and adherence [22]. AGYW ring disclosure experiences may differ from their experiences with oral PrEP disclosure as the ring is a new product and may be more discreet than oral PrEP [23]. Ring disclosure experiences may also differ from those of adult women since AGYW face additional social barriers, such as stigma related to age and sexual activity [24, 25]. Moreover, AGYW might be more financially and emotionally dependent on family members and partners, which can impede their ability to disclose if they predict opposition [26]. Understanding AGYW’s disclosure experiences with the ring compared to oral PrEP may help inform strategies to motivate uptake and adherence to both oral PrEP and ring use in this population. This paper draws on data collected in the Microbicide Trials Network (MTN) 034/REACH (Reversing the Epidemic in Africa with Choices in HIV Prevention) trial to better understand AGYW’s disclosure experiences of the ring and oral PrEP (henceforth referred to as pills) to key influencers.

Findings from the quantitative data show that most AGYW did disclose to some people, especially to female family members and friends. The qualitative findings show that there are numerous individuals they did not disclose to due to various reasons. The reasons for disclosing were similar across all social influencer groups and were most often influenced by perception that influencers would be supportive and to head off misconceptions that might arise from involuntary disclosure. While some participants disclosed pills because of resemblance to ARVs and wanted the pills not to be mistaken for ARVs, others did not disclose for this very same reason. Influencers’ prior knowledge of HIV prevention or treatment methods and awareness of REACH or other clinical research in their communities also influenced whether participants disclosed. Similar to other studies, anticipated stigma, judgement, and rumors often deterred AGYWs from disclosing [17, 18, 32, 33]. While most reactions to product use disclosure were positive, in some cases, disclosure led to conflicts, even after participants provided additional information. For most participants, disclosure ultimately led influencers to support participants’ adherence through reminders and encouragement.

Study participants were comfortable using the ring without disclosure to all key influencers except for male partners, whom they feared would discover it during sex. The foreignness of the ring made partners make incorrect assumptions about its purpose, whereas some initially thought it was witchcraft, others worried that it was a contraceptive. With the pills, however, male partner opposition was related to misconception about HIV and AGYW having “multiple sexual partners”. A qualitative study of ring acceptability among AGYW in the United States also found similar outcomes (e.g., contraceptive, promiscuity, and HIV) to partner disclosure of ring use [34]. In REACH, a few women reported removing the ring before engaging in sex. While this tactic may avoid involuntary disclosure and thus might prevent potential social harms, it impedes the effectiveness of the ring [34‐36]. Similar to REACH, a study on contraceptive ring use reported that some women delayed disclosure of their ring use to see whether their partners would feel it or disclosed to avoid relationship conflicts [36]. In a recent phase III trial among adult women in Eastern and Southern Africa using the vaginal ring, a good number of women reported opposition to ring use from male partners, and low ring acceptability to male partners was associated with nonadherence [37]. Findings from REACH indicate that because pills are harder to hide, participants wanted to disclose to a wider variety of people and may need more support and counseling on how to disclose. Participants were comfortable using the ring without disclosing to people, except to partners, and therefore, counseling strategies should emphasize partner-related disclosure concerns.

Despite many studies in these communities and program rollout, pills are still ‘hidden’ which can lead to opposition from influencers and adherence challenges. Participants in this study reported individuals in their inner circles having misconceptions about pills, with many assuming it is used for treatment. Other studies have reported similar findings [17, 38]. Some participants, however, often could convince them to eventually support product use by providing more information and education about the products. Community education is vital in changing the narrative about HIV prevention and treatment options by highlighting that even though both products contain similar drugs, their purposes are vastly different (e.g., treat vs. prevent). Similar to a previous study on pill disclosure among AGYW in South Africa and Zimbabwe, participants reported experiencing HIV stigma from various influencers, arising when the pills were mistaken for HIV treatment, and sexual stigma when the pills and ring were thought to promote sexual promiscuity [17, 18, 32]. Furthermore, while in prior studies, peers external to the study have been reported to hold negative reactions upon disclosure [39], REACH highlighted that peers can actually be good supporters to women who choose to use HIV prevention methods and can act as a support system for women that are unable to gain support elsewhere. Indeed, adequate education to this social group is essential, and future research should focus on engaging communities in the rollout of the ring and provide further education on pills, through multiple platforms such as social media outlets and higher learning institutions. Studies have reported that advertising pills or family planning methods in social media or in the community increased adherence and confidence that the products were safe and effective [17, 40].

Additionally, we recommend supporting women to explain the purpose of the ring and daily oral pills and garner support during disclosure to their influencers. In REACH, some key influencers seemed more receptive to explanations from study staff, considering them to be expert sources, rather than from the AGYW themselves. This has major implications to programmatic roll-out as such experts may not be available to counsel or educate influencers. Therefore, women should be equipped with information and counseled to comfortably and convincingly relay the information to key influencers. It also is essential that we identify more credible stakeholders in the community to spread or amplify communication messages about HIV prevention, and can be allies for women if needed, to lessen the burden on the users themselves. Furthermore, clinicians in the public and private sectors should be educated on these products in instances where influencers seek further information after users disclose. Prior studies have found that lack of awareness about emerging HIV prevention methods, like the ring, among public healthcare providers leads to barriers for women joining research studies or using the products [38]. Rumors that women are using experimental drugs have been seen to shake women’s confidence and trust in the research or their rationale for participating in the study while healthy [38]. And though it might be difficult to implement, countries should start looking at ways to incorporate these products in their sexual and reproductive health curriculums for both the providers and AGYW.

Our study presents some limitations. Our findings are limited to AGYW in the trial setting and therefore cannot be generalized to the broader population. Because all study sites were in urban locations, we miss the perspectives of those who reside in rural areas. Besides, study participants were recruited from areas around the clinic and are likely familiar with clinical research and the study teams. Because they agreed to participate in the study and to be interviewed, AGYW in this study may have viewed biomedicine more favorably than those who did not participate. Additionally, most AGYW had higher than primary level education, and therefore, their responses and experiences may differ from AGYW with lower education. Finally, our study did not explore disclosure to other key influencers such as chiefs and religious leaders, which is a gap that may need to be filled in future research. Religious leaders and other traditional key influencers have been reported in previous MTN studies as potential trusted source of influence when it comes to the use of biomedical HIV prevention technologies [41]. However, the study also had major strengths. It is the first study looking at ring use among 16–17-year-olds in Eastern and Southern Africa and includes AGYW from three Eastern and Southern African countries that are heavily affected by the HIV epidemic. The quantitative data and large qualitative sample, using IDIs and FGDs, allowed us to understand the extent of disclosure, AGYW’s experiences with disclosure of the two HIV prevention products, the context of disclosure, and how disclosure experiences differed among various influencers, which are key for introducing new products and encouraging uptake and continued use. Lastly, data collection during different periods of the study allowed participants to report their experiences with each product at the time of use rather than retrospectively, reducing recall bias.

In conclusion, disclosure experiences differed depending on product and type of influencers. While many participants found it easy to disclose both products to most key influencers, others were selective in which product or to whom they disclosed. Pills were most often disclosed because influencers were familiar with its form and because participants wanted to avoid potential HIV stigma from association with HIV treatment. On the otherhand, the ring was mostly disclosed to partners, as participants feared it could be felt during sex, however, considered it more discreet than pills and therefore, not always necessary to disclose to other influencers. Our findings show that community education and awareness about the ring and pills is vital in improving product uptake and user experiences while at same time addressing HIV and sexual stigma. Most participants that disclosed their product use reported having better adherence as disclosure alleviated fears of product misconceptions from influencers. However, beyond the community education, AGYW should be provided with counseling and necessary skills to disclose product use when desired with confidence and fear of judgement. REACH showed that key influencers could act as positive enforcement to encourage product adherence through pill reminders and encouragement of consistent ring use. Partaking in these strategies will mitigate challenges to adherence among AGYW by reducing potential key influencer opposition and perceived stigma, as well as improving acceptance of these biomedical prevention products.