Qualitative focus group discussions exploring PrEP method and service delivery preferences among female sex workers and their managers in four Zambian provinces

Study overview and setting

We conducted focus group discussions (FGDs) among FSWs and their managers from Zambian provinces representing two geographical groups: rural (Central and Luapula) and urban (Copperbelt and Lusaka) (figure 1). Data were collected from 16 September through 8 October 2021, as part of the PROMISE (Preparing for Ring Opportunities through Market Introduction Support and Knowledge Exchange) collaboration. The PROMISE collaboration (2020–2021), funded by the U.S. President’s Emergency Plan for AIDS Relief in partnership with the United States Agency for International Development and through the Envision FP Cooperative Agreement led by FHI360 conducted a qualitative study among several populations, including FSWs and sex work managers, to explore the landscape for the introduction of new PrEP methods. The findings are intended to inform the scale-up of oral PrEP and the introduction of new methods through efforts tailored to FSWs within Zambia and similar contexts.

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In Zambia, sex work managers, locally termed ‘queen mothers,’ introduce and provide counsel to women entering into sex work. Managers, many of whom are former FSWs, prevent conflict among FSWs and between FSWs and clients and may also be brothel owners or otherwise broker client transactions.

Patient and public involvement

The PROMISE collaboration, under which this study took place created an advisory committee including representatives from civil society organisations delivering services for sex workers, peer advocates and the youth focal point from the National AIDS Council to provide community input for this study and the larger collaboration. The advisory committee provided input throughout the study process. Study research questions were informed by the experiences and priorities of sex workers and managers through engagement in this group. The committee provided input into the design of the study through review of an early concept paper and discussions with study investigators on the study design and approach. The advisory group also reviewed and pretested study interview guides. Input into study recruitment included participation in the selection of recruitment locations, with data collection occurring in offices of participating civil society organisations, and through sharing participant eligibility criteria and details about study information sessions with civil society organisations participating in the committee. Additionally, committee members provided feedback on the burden of time required to participate in the research through guidance on the length of interview guides and guidance on the best times of day to schedule data collection so it would not interfere with participants’ work. Finally, committee members reviewed and approved a final report and presentation slide deck for the collaboration and committee members were provided with these dissemination tools for use within their programmes including adapting programme content and services to expand PrEP uptake and use.

Participant selection

Eligible FSW and manager participants were age 18 years or older, spoke English, Nyanja, or Bemba, and were able to provide written informed consent. Potential study participants were identified through members of provincial and district health offices, HIV technical assistance projects and CSOs. All FSW participants were women who self-identified as engaging in sex work or transactional sex and were known as such by those referring them. For FSW managers, eligible participants were those known to CSO staff or FSWs as being managers.

Data collection

We conducted four FGDs among FSWs and four FGDs among managers. Discussions were conducted by experienced research staff who received qualitative training. FGDs were conducted at CSOs, public health facilities providing services to FSWs, or other sites convenient to potential participants. The semistructured guides (online supplemental files 1 and 2)included a variety of questions on perceptions of HIV prevention methods (table 1) were pretested among a small group of FSWs and refined prior to use.

Potential participants were introduced to study staff by trusted community liaisons or CSO workers and screened for eligibility. Those interested in participating were asked to provide written informed consent for an audio-recorded discussion. FSWs completed a brief tablet-based questionnaire on sociodemographics, health history and occupation-related behaviours. During the FGDs, facilitators provided an overview of oral PrEP, the PrEP ring and CAB PrEP after assessing participants’ awareness of the methods (online supplemental file 1). Focus groups were conducted in English, Bemba and Nyanja and lasted 1–2 hours. All FGDs were compliant with national COVID-19 prevention guidelines.

Audio recordings were transcribed and reviewed against audio files for quality assurance by another staff member.24 Recordings in Bemba and Nyanja were simultaneously translated and transcribed into English, and a second native speaker conducted quality assurance.

Data analysis

A qualitative in-depth analysis of eight FGD transcripts was conducted, four FSW transcripts and four sex worker manager transcripts, with two from rural and two from urban provinces for each group. The number of FGDs selected for analysis was guided by research that found that 80% of all themes are discoverable within two to four FGDs per participant group.25

Using a structured Microsoft Excel matrix, the transcripts were coded using deductive codes from the discussion guides supplemented with emerging inductive codes from the transcripts. Data were summarised by code, including illustrative quotes, for each study population and summarised in memos to allow for comparisons across groups.

Participant characteristics

Participant characteristics from the demographic questionnaire are summarised in table 2.

Most participants had completed secondary school and were not married but had regular partners. Nearly three-quarters owned a mobile phone, but only slightly more than one-third had a smart device. Contraceptive use was common, with 67% being current users and injectable contraception and oral pills were the most common methods. Finally, condom use at last vaginal sex was reported by 70% of all participants.

PrEP product awareness, knowledge and preferred information sources

Nearly all FSWs were aware of oral PrEP, and reported use was higher in urban provinces. Among managers, all participants in Central and Copperbelt, several in Lusaka, and only one in Luapula provinces had heard of oral PrEP. Only a few FSW participants in Central Province and managers in Lusaka Province reported hearing of the PrEP ring prior to the discussions. Similarly, very few FSWs or managers had heard of injectable or CAB PrEP, and the few managers aware of injectable PrEP appeared to confuse it with other injectable medications.

Regarding preferred PrEP information sources, both groups noted that non-governmental organisation (NGO) clinics providing FSW-focused services were trusted and commonly accessed by FSWs for health information and care. Additionally, managers noted that HCPs, including those at sexual and reproductive health (SRH) and antenatal care clinics, provide PrEP information to women and influence their health decisions. Some participants noted that churches do or could provide HIV education, while others stated that religious leaders often introduce confusion and misinformation regarding HIV, including discouraging ARV use or not addressing HIV at all.

Perceived benefits of presented PrEP methods

FSW participants perceived that oral PrEP had several specific benefits. For example, FSWs often stated that they used oral PrEP because men do not use or incorrectly use condoms, or to stay HIV negative and protect their well-being. When comparing oral PrEP to the PrEP ring and CAB PrEP, FSWs did not ascribe any specific advantages to oral PrEP over the other hypothetical methods. However, managers mentioned that oral PrEP was more effective than the PrEP ring and did not have to be inserted vaginally, which could be embarrassing for younger users.

For the PrEP ring and CAB PrEP, FSWs and managers identified similar benefits, including not having to remember daily dosing, longer duration of action and allowing for discreet use. The duration of action was particularly appreciated:

Oral PrEP you can’t manage every time it’s in the bag, but an injection you put for weeks, and you forget, and it will be working in your body.—FSW

For the PrEP ring specifically, some respondents felt the lower efficacy was still acceptable, stating that ‘50% efficacy is better than nothing’, and others noted that the 28-day protection allowed FSWs to protect themselves ahead of sexual activity. A few managers saw the PrEP ring as especially good for young FSWs, who may live with their parents and have little privacy, as it provides 28 days of protection and does not have to be taken daily like oral PrEP. More commonly, however, managers thought the ring should be used by ‘older women’, who were viewed as better able to understand and correctly use the method. Younger women, they thought, could be too embarrassed to insert a vaginal ring and were more likely to forget appointments and be mobile, which managers viewed as barriers to successful use.

Older people can understand because they are mature and have wisdom about it, unlike young girls that are in their twenties, they might face disadvantages.—Manager

Regarding CAB PrEP, participants, especially managers, appreciated the higher efficacy compared with the PrEP ring. FSWs noted that CAB PrEP was protective for vaginal and anal sex, which they perceived as beneficial because clients request and pay more for anal sex. Managers stated that CAB PrEP was a good method for FSWs, as they were more sexually active than other women and potentially exposed to HIV daily. Additionally, CAB PrEP was seen as ideal for women without fixed homes, or for those who travel frequently, though some noted that CAB PrEP was suitable for all women, as anyone could have sex with a person living with HIV.

Perceived disadvantages of the PrEP methods presented

Both FSWs and managers identified the difficulty of remembering a daily pill or forgetting to bring the pills with them as the ‘biggest reason’ people do not use oral PrEP. As FSWs reported being highly mobile, this resulted in missed doses.

Us, we are always on the move, then you go to a friend and that friend does not take that medicine and… you forget that you have left it home.—FSW

Other disadvantages included perceived and experienced side effects, such as weight changes, feeling ‘burnt’, dizziness, headaches, nausea and weakness. Another concern was the possibility of being seen taking oral PrEP tablets, which resemble ARVs and may lead people to assume an individual is living with HIV, with resulting stigma. This fear of stigma was described as sufficient to cause people to discontinue or not initiate oral PrEP use:

What causes that is stigma, when I am at a public place like a funeral house and you have them [PrEP pills], I wouldn’t take in fear of being seen as taking ARVs. And that the time of taking it clocks [the time the next dose is due], you will not take it because someone might see you.—FSW

For the PrEP ring, FSWs and managers perceived similar disadvantages, to degrees that varied by group. FSWs were most concerned with the PrEP ring becoming dislodged, pushed through the cervix, getting stuck, or being felt by a partner during sex, particularly if the woman had ‘rough sex’, or her partner had a large penis. While managers expressed similar concerns, they were more concerned with the PrEP ring’s relative lower efficacy and perceived side effects (especially pelvic pain and vaginal discharge), whose frequency or severity would not be known until one tried the ring. Managers also felt that the 28 days of ring protection was too short, creating challenges for remembering replacement, especially for women who were travelling.

The process of changing after 28 days I think will be a challenge because some people fail to go and get the drugs after three months… I think some people will not manage. Only a few will manage.—Manager

Compared with FSWs, managers had more concerns about ring insertion and removal. They debated whether women themselves could insert and remove the ring and, if so, whether there would be challenges with hygiene and potentially introducing infection into the vagina. A few managers speculated that specific stereotypes would be ascribed to each PrEP method with associated discrimination. For example, they felt that PrEP ring users would be perceived as FSWs, while those using oral PrEP would be seen as living with HIV and taking ARVs.

Both groups perceived few disadvantages with CAB PrEP. A few FSWs noted that non-aligned injection schedules for CAB PrEP every two months and depot medroxyprogesterone acetate contraception every three months would make care seeking for both burdensome. A few FSWs and managers expressed dislike of injections or perceived the number of injections to be excessive, and a small number of managers said side effects could be a challenge.

Preferred PrEP method in a scenario of choice

Across all provinces, more FSWs hypothetically preferred CAB PrEP than oral PrEP or the PrEP ring for its comparatively longer duration and higher efficacy. One FSW noted that ‘…I would choose an injection because with the injection I will not have to worry about it whenever am going anywhere, unlike oral medicine [which] I would easily forget’. However, participants from both groups noted that the PrEP method was a matter of personal choice and felt that everyone should be given the opportunity to try different methods and choose the best one for themselves.

Communicating with partners about PrEP

Regarding whether and how FSWs discussed HIV prevention and PrEP use with client and nonclient partners, women described a continuum of acceptance of PrEP use among partners and a preference for open discussion. Long-term relationship partners were more likely to be accepting and required more honest discussion, while PrEP disclosure or discussion with clients or casual relationships was typically viewed as unnecessary. One FSW summarised that discussing PrEP with clients was a ‘sheer waste of time. They just want to get into the business [sex]’.

Many FSWs and managers noted that their non-client partners did or would support PrEP use, with several mentioning that a man would accept and potentially appreciate the information if he loved the woman. Several participants from both groups stated that FSWs having correct PrEP information was important so that they could educate their long-term partners on how PrEP works and the reasons for using it.

If my partner finds out, I will explain to them how they work. If you explain to him, I think he be fine with the situation.—FSW

Overall, both groups stated that discussing PrEP use with partners was acceptable and that FSWs did not need a partner’s permission to use PrEP. However, more FSWs than managers felt partners would support their PrEP use. A small number of both groups discouraged PrEP disclosure to partners, whom they felt would assume that the FSW had a positive HIV status or multiple sex partners, which could result in physical violence or end the relationship.

Recommendations for improving PrEP service delivery

Recommendations to facilitate the PrEP method introduction and better support PrEP services focused mainly on community-level sensitisation and preferred service sites and approaches. Participants recommended broader PrEP sensitisation efforts, including potential end users, the wider community, parents and HCP influencers, using ‘language they understand’. Preferred channels included mass media (eg, television, radio), roadshows, door-to-door efforts, flyers, billboards and t-shirts. Both groups recommended that sensitisation efforts include peer educators and individuals who are known and trusted by their communities, including experienced PrEP users who could give testimonials.

For it to be successful like the way you have taught us, we also teach our friends… Just the same as ARVs, people never used to know them. So, it is through sharing, that’s how we get to know things. Then it will spread just like that.—FSW

Managers noted that government facilities often lack entry into the communities where FSWs can be reached. They recommended conducting sensitisation in non-traditional places, including bars so that ‘as we are having fun, you educate us’, religious settings and other organisations. Messages should describe who can use PrEP according to behavioural exposure rather than by group designation (eg, FSWs, women under 18 years) to prevent stigma.

Regarding service provision, participants prioritised the need to improve HCP behaviours, including ending their mistreatment of FSWs seeking healthcare services (eg, shouting, public revelation of sex work or PrEP use, and arrogant, mocking, or judgmental attitudes), over other service site considerations. Participants advocated training HCPs to be empathetic and supportive of FSWs’ needs and ensuring confidentiality of their personal information.

Supply of PrEP methods was also mentioned as a factor influencing the success of PrEP introduction. Experienced oral PrEP users reported periodic inability to access refills due to stock outs. Both participant groups recommended ensuring a consistent supply of all PrEP methods across health facilities as new methods are introduced.

At the site level, FSWs wanted to receive PrEP information and services from facilities where they feel comfortable. While some FSWs preferred FSW-focused clinics similar to NGOs, others noted that this could increase stigma and suggested that a private space within a larger clinic or hospital may be preferable. Finally, shifting PrEP service delivery away from HIV care sites towards home-based, brothel-based, or mobile service provision with phone follow-ups to increase confidentiality was highly recommended.