Recommendations for Improving Oral Pre-exposure Prophylaxis Implementation and Social Marketing in Ugandan Fisherfolk Communities: A Qualitative Exploration

Abstract

Background: HIV is hyperendemic among fisherfolk in Sub-Saharan Africa, especially around Lake Victoria, Uganda. Purpose/Research Design: We conducted cross-sectional semi-structured interviews about oral pre-exposure prophylaxis (PrEP) implementation with 35 Ugandan fisherfolk (15 women, 20 men) and 10 key stakeholders (healthcare providers, policymakers, community leaders). We used a directed content analysis approach based on implementation science and social marketing frameworks. Results: Participants showed high acceptability for PrEP. Anticipated barriers among fisherfolk included stigma (due to similar medications/packaging as HIV treatment); misconceptions; mobility, competing needs, poverty, and partner conflict. Anticipated provider barriers included insufficient staffing and travel support. Recommendations included: change PrEP packaging; integrate PrEP with other services; decrease PrEP refill frequency; give transportation resources to providers; train more healthcare workers to provide PrEP to fisherfolk; and use positively framed messages to promote PrEP. Conclusions: Results can inform policymakers and healthcare organizations on how to overcome barriers to PrEP scale-up in most at-risk populations with poor healthcare access.

Keywords

HIV pre-exposure prophylaxis fisherfolk qualitative Uganda

Introduction

Fisherfolk communities in sub-Saharan Africa carry a high HIV burden. In Uganda, HIV prevalence among fisherfolk is 3–5 times higher than the general population prevalence of 5.8% among individuals aged 15–49,^1,2 in part due to poor healthcare access, including to HIV services. Healthcare barriers include a relative absence of nearby full-service facilities combined with poor transport infrastructure.^3,4 Fisherfolk’s high mobility (following fish migrations and traveling to markets) and irregular work schedules mean that they are frequently far from healthcare, not consistently near the same facility, and unavailable during facility hours.^3,5–8

Oral Pre-Exposure Prophylaxis (PrEP), the use of antiretroviral medications for HIV prevention, has shown efficacy in sub-Saharan Africa across multiple clinical trials, including in general populations of heterosexual men and women, heterosexual sero-discordant couples, and men and transgender women who have sex with men.^9–12 Some research suggests high acceptability of PrEP, but low retention, among fisherfolk.^13–16 Individual-level barriers to PrEP use among fisherfolk and other key populations in sub-Saharan Africa have included low educational attainment, low perceived risk, side effect concerns, mobility, competing needs for work, anticipated stigma (because PrEP medications are also used for HIV treatment), and fear of partner conflict.^7,16–21

A review concluded that the knowledge base is thin regarding what HIV prevention interventions work for fisherfolk.¹ We conducted qualitative research to identify feasible strategies to improve PrEP implementation and social marketing messages to encourage PrEP use in Ugandan fisherfolk communities.

Materials and Methods

Setting

Study procedures were conducted at healthcare outreach events in the Nakiwogo and Kigungu fishing community landing sites (Wakiso District, Lake Victoria, Uganda). At outreach events, healthcare workers and community leaders mobilized fisherfolk (e.g., with bullhorns), and healthcare workers (including study team members) provided HIV testing, prevention, and treatment services, including oral PrEP, in temporary community venues or local healthcare facilities. During this study, PrEP was available for key and priority populations in Uganda (including fisherfolk).

Participants

We conducted ∼1-h in-person semi-structured interviews in Luganda or English with 35 HIV testing clients and 10 key stakeholders from August 14 to December 11, 2020. Fisherfolk were eligible if they were aged 18 or older and tested HIV-negative at an outreach event in Nakiwogo or Kigungu. We used purposive sampling to interview similar numbers of men and women across fishing-related occupations. The sample size was in accordance with recommendations for reaching saturation.²²

Stakeholders included 3 policymakers (national and district levels), 5 healthcare workers [4 healthcare providers and 1 Village Health Team (VHT) member (community health worker volunteer)], and 2 community leaders representing the interests of fishermen, fish buyers, and fish sellers. Stakeholders’ average age was 39.0 (SD = 6.9). They worked in fishing communities an average of 6.6 years (SD = 5.7). (Table 1).

Table 1.

Fisherfolk Participant Characteristics (n = 35).

HIV Testing Client/Fisherfolk Sample	% (n)
Female gender	43% (15)
Highest education level
No formal schooling	3% (1)
Lower primary	26% (9)
Upper primary	26% (9)
Lower secondary	34% (12)
Upper secondary	6% (2)
University	6% (2)
Current monthly expenditure^a
50,001–100,000 Ugandan Shillings	3% (1)
100,001–500,000 Ugandan Shillings	74% (26)
>500,000 Ugandan Shillings	23% (8)
Marital Status
Single/not married	29% (10)
Married or in a committed relationship	71% (25)
Occupation
Commercial sex worker	6% (2)
Fisherman	31% (11)
Fishing support (e.g., fish seller, cleaner, transporter)	26% (9)
Other business-related	31% (11)
Other	3% (1)
Not working	3% (1)
Mobility: No. Mos. Traveled away from landing site, past 12 mos
Never or once	31% (11)
2–5 times	37% (13)
Over 6 times	31% (11)
Mobility: Planning to travel in next 6 mos	57% (20)
Tested for HIV, last 12 mos	97% (33)
Engaged in sex work, last 12 mos	14% (5)
Traded money/goods for sex, last 12 months	46% (16)
Ever taken PrEP	11% (4)

^aAverage exchange rate in 2020 was 3697 UGX to 1 USD.

Procedures

During post-test counseling in outreach events, healthcare providers asked testing clients who screened HIV-negative and as eligible for PrEP (as a member of a key or priority population) if they would be interested in participating. If so, they were referred to the study coordinator [Ugandan male, MPH], who conducted interviews at a private space at the landing site. Stakeholders were identified and approached by team members who knew them through their work with fisherfolk. Interviews were conducted in a private space (e.g., workplace). Interviews were audio-recorded, transcribed, and translated. Participants provided written informed consent and received 20,000 Ugandan Shillings (∼$5USD) as compensation. All procedures were approved by institutional review boards in the U.S. as well as Uganda, including: the RAND Human Subjects Protection Committee (HSPC 2019–0571), the Makerere University School of Public Health Higher Degrees, Research, and Ethics Committee (HDREC 755), and the Ugandan National Council of Science and Technology (HS 2748).

Interview Guide

Questions assessed ideas for oral PrEP marketing strategies and enhanced implementation, based on prior HIV prevention research using the ‘four Ps’ (product, price, place, and promotion),^23,24 and acceptability and feasibility implementation science frameworks.^25,26 (Table 2).

Table 2.

Semi-Structured Interview Protocols: The ‘Four Ps’ of Social Marketing and Implementation Science Acceptability and Feasibility Models Applied to PrEP for Fisherfolk.

Domain	Sample Questions: Fisherfolk	Sample Questions: Stakeholders
Product: Develop ways to package or change PrEP to be more acceptable	• [After describing PrEP]: Have you ever heard of PrEP? If so, what have you heard? • What do you see as the benefits of PrEP? How effective do you think PrEP would be in protecting you from HIV? • How easy/difficult do you think it would be to take PrEP daily? Why? How confident are you to take PrEP daily? • How easy/difficult do you think it would be to bring PrEP to this community? • If PrEP were offered to you after you tested negative for HIV, how much would you want to take PrEP? Why or why not? • How much do you think other people here would want to take PrEP? Why/why not?	• What do you know about PrEP? • What is [healthcare organization’s] protocol for providing PrEP? (healthcare providers only) • How do you feel about providing PrEP to fisherfolk? How easy/difficult do you think it would be to bring PrEP to this landing site? • What do you think about PrEP? Effective/ineffective? • How much do you think people in this community would want to take PrEP? Why or why not? • How easy/difficult do you think it would be for fisherfolk to take PrEP daily? Why?
Price: Develop intervention to reduce perceived barriers	• What challenges do you think there would be to giving PrEP to fishing communities? • What might make it easier to give PrEP to people in fisherfolk communities? • What kinds of supports might help people in fisherfolk communities to take PrEP every day?	• What do you think might be a challenge to providing PrEP for fisherfolk? To fisherfolk getting refills? Taking PrEP daily? • What are the policy-related challenges? How could these challenges be overcome? • What kinds of training do you think healthcare providers need to provide PrEP to fisherfolk? • What can providers do to support PrEP adherence? • How do you think that PrEP provision could disrupt healthcare providers’ other activities (e.g., HIV testing, ART)? … increase their workload? How much is staffing an issue? How could these barriers be addressed?
Place: Determine where to deliver PrEP	• Where/how do you think people in fishing communities would be comfortable getting PrEP? (Probes: HIV testing events, healthcare facility, home, local community leader offices, VHTs, peers) • Which do you prefer the most, and why? • What other ideas do you have for providing PrEP to fisherfolk?	• Where/how do you think fisherfolk would be comfortable getting PrEP? (e.g., testing events, healthcare facility, home, local community leader offices, VHTs, peers) • Which do you think is most feasible, and why? • What other ideas do you have for providing PrEP to fisherfolk?
Promotion: Determine PrEP promotion messages	• Who do you turn to for advice and guidance in your community in general? Around health needs? HIV? • If we were to create a campaign to promote PrEP for this community, what messages would you recommend? • What would you say to convince people in fishing communities to start PrEP? • Who should deliver the message? (e.g., healthcare providers, VHTs, community leaders, radio)	• If we were to create a campaign to promote PrEP for people in this community, what messages would you recommend? • Who should deliver the message? (e.g., healthcare providers, VHTs, community leaders, radio announcements, etc.) • What would you say to convince people in fishing communities to start PrEP?

Analysis

A directed content analysis approach was used.²⁷ Four team members (American female PhD social psychologist and male Study Coordinator with an MPH; two Ugandan Study Coordinators, one male, one female, with MPH degrees) independently reviewed all notes and transcripts, and drafted a summary of preliminary themes. The Ugandan team reviewed the summary and provided input to arrive at a shared understanding of the data, based on cultural and research perspectives. The team members who originally reviewed the transcripts then developed a codebook based on the preliminary themes, interview guide, acceptability, feasibility, and social marketing constructs, after which two (one American and one Ugandan male MPH study coordinator) jointly coded 4 fisherfolk transcripts (271 passages; Kappa = 0.77) and 2 stakeholder transcripts (95 passages; Kappa = 0.86) for reliability. Following achievement of reliability, all transcripts were coded by the two coders, after which all excerpts for each code were reviewed and used to update the summary. In addition to conducting an overall analysis across fisherfolk, we explored whether key themes differed by PrEP use (i.e., between the four fisherfolk who recently started or had previously taken PrEP and the other fisherfolk participants). Overall themes were similar across sub-groups; we note in the results section slight differences by PrEP use.

Table 3.

Barriers to PrEP Implementation in Fisherfolk Communities by Social Marketing (‘Four Ps’) Theme.

Theme	Representative Quote
Product
Acceptability	‘It can protect me so that am able to raise my children and I also take care of my family … this drug can also prevent us from getting AIDS.’ 30 year-old female, not working
Medication packaging and stigma	Community Stigma: ‘For most people seeing you with this container, [it] is associated with being infected, because it is like the container that has ART. So, each time you pull it out, people raise eyebrows wondering what happened to you. At one time my in-law visited and saw the container and the reaction was, ‘don’t tell me you people are already infected?’ My husband just told her that it’s up to me to explain to her what kind of medicine I was taking. … Because people will keep saying that this person is lying but those are ART. I’m therefore requesting that they should get us different containers’ 28 year-old female market vendor
	Internalized Stigma: ‘People don’t want to take drugs ... People are told to go for testing but they fear to go because [they fear that they] are infected.’ 52 year-old male, fishing-related occupation
	(Overcoming) Stigma: ‘If you talk about me, I don’t mind since am protecting my life. Even if I was HIV-positive when I came to pick HIV drugs I wouldn’t mind since I am protecting my life. Talking about me when I have come to pick the drug can not affect me in any way … A person pointing at me that am taking this drug when I know that this drug is my life, it can’t affect me in any way. A person can see me here and then say that I have AIDS. I don’t care about this at all …’ 32 year-old fisherman
Price
Mobility and competing needs	‘The challenge with [providing PrEP] is the mobility of our clients. Fisherfolk are at times mobile. This time round they are in a certain area, and this other time they have shifted. At times, they move with fish. If the catch is sweeter this side, they will go to where the catch is, and therefore that is a serious challenge.’ local district policymaker/focal person for key populations
Poverty and related Issues	‘In order for people to take their drug in time, they should have jobs so that they don’t get to the level of lacking food because one cannot take drugs when he lacks food’ 22 year-old male, fishing-related occupation
Partner Issues	‘Another thing I have to do is to go back home and explain to my wife … according to those tablets I saw with my friend and I saw someone with HIV taking them … It is very hard for a woman to understand that you have been at work, she might think otherwise. So, when she sees the drug she might fear [that I am HIV-positive].’ 27 year-old male, fishing-related occupation
Place
Transport Issues	Providers: ‘To get to the islands we have to travel by water, [healthcare providers] have fear to travel on water… we are not insured that in case we get a problem on water, what will I gain or what will my family gain. So, we have fear … If there’s an insurance that if you get a problem while travelling on water this is how you can be compensated but it has failed. There are a few people who cross on water, I myself I fear water.’ Healthcare provider/counselor
Transport Issues	Providers and Fisherfolk: ‘A person may need the drugs but he lacks transport. Even myself if I don’t get transport to go and give out drugs to those who need to refill, I may not deliver the drugs.’ Village Health Team
Insufficient staffing	‘The fisherfolk are really eager to know what is PrEP and how it works … their concern is really lack of enough information, they need more information yet we are serving many people [at outreach events], many have come to test and you have to give result. You find that you don’t get enough time to give everything to that client who is interested in knowing and taking PrEP. You find that we need to go to fishing communities to give awareness about PrEP, then people themselves can find out the facilities where we have enough time to attend to everyone than having many waiting ... At the healthcare facility, we are very many, we can work together, we can divide ourselves to who can give out PrEP, who can do the testing, who can do the counselling part of it but at the community [outreach] it is difficult to handle all activities ... Many are not helped.’ Healthcare provider/counselor
Promotion
Misconceptions and Conspiracies	‘The other negative issue I have heard, is that it can damage a person’s internal organs and eventually the person develops cancer. These were some of the after effects my husband talked about while we were discussing PrEP. He said that in future I might give him problems.’ 28 year-old female market vendor

Note: Gender and age are not provided for stakeholders to protect their identities (given the small number of stakeholders with their occupational titles).

Results

Pre-Exposure Prophylaxis Barriers and Acceptability

Table 3 shows the themes and associated quotes for PrEP barriers and acceotability using the four Ps framework.

Product

Product refers to perceptions of PrEP itself and included positive attitudes about PrEP as well as PrEP-related stigma.

Overall Acceptability. Fisherfolk and stakeholders showed great enthusiasm and perceived need for PrEP, given high HIV rates in fisherfolk communities. Participants said that PrEP allows them to live healthy lives for their families and themselves, and reduces their stress and worry about HIV. Another advantage mentioned was that PrEP is not life-long, in contrast to HIV treatment. Several mentioned wanting to take PrEP because they love their life. Women mentioned being able to stay healthy and alive to raise their children, if their partner had multiple partners; men mentioned that PrEP allows for freedom to have multiple partners and keep themselves and their spouse safe.

Medication, Packaging, and Stigma Concerns. Across interviews, participants said that many fisherfolk thought that PrEP was for HIV treatment (and not prevention), because of the similar packaging of medications for PrEP and HIV treatment. Some fisherfolk also associated PrEP with stigmatized risk behaviours (e.g., sex work, multiple partners). Thus, people who took PrEP were at risk of being stigmatized. Fisherfolk referenced internalized stigma as discouraging people from HIV testing (and thus PrEP initiation) due to fear of discovering that they are HIV-positive. Some fisherfolk emphasized that stigma did not deter them from wanting to take (or actually taking) PrEP, because it was important to protect themselves.

Overall, fisherfolk who recently started (or who had previously taken) PrEP referenced similar barriers to PrEP use; some also discussed having side effects (e.g., bloating) or difficulty swallowing pills. Nevertheless, they remained willing to continue taking PrEP.

Price

We expanded the social marketing concept of price to include a range of barriers to getting and using PrEP (not only financial barriers).

Mobility and Competing Needs, combined with high alcohol use, were discussed across participants as challenges for traveling to get refills and for daily adherence. Some fisherfolk traveled far from designated PrEP refill pick-up locations. Fisherfolk said that inflexible or irregular ferry schedules, as well as weather-related issues, could impede them from reaching refill outreach events at designated times.

Among fishermen and related occupations, competing needs for work arose from the busy schedule of fishing and related activities (e.g., fish offloading and selling). Among women with families, competing needs manifested as daily shopping and childcare chores, and among female sex workers, competing needs meant being available when fishermen completed their daily work.

Poverty and Related Issues such as food insecurity were discussed as potentially contributing to nonadherence. Fisherfolk discussed not being able to take medications on an empty stomach or without access to clean water. Moreover, fisherfolk may not be able to afford transport costs to get refills.

Partner Issues included fear of conflict from partners suspecting infidelity or HIV-positive serostatus. Men and women discussed the potential for partner discord if their PrEP use were discovered, although more women seemed to have this concern.

Place

Place refers to where PrEP is provided.

Transport Issues contributed to Insufficient Healthcare Staffing. Healthcare providers, like fisherfolk, had difficulties with transport, including a lack of travel support (no insurance, hazard pay, life jackets, or funds for boat transport, which could be unsafe). In addition, local providers (such as VHTs) were not typically trained on PrEP and so could not answer PrEP users’ questions in between refills. These barriers contributed to an insufficient number of staff willing to travel to fisherfolk communities to explain and provide PrEP. Nevertheless, healthcare providers felt that PrEP’s benefits outweighed the challenges of delivering PrEP to fisherfolk communities, because managing ART for a patient who is HIV-positive is more challenging than administering PrEP.

Promotion

Promotion refers to education about PrEP with social marketing.

Misconceptions and Conspiracies. Although all fisherfolk had heard of PrEP, many, including those prescribed PrEP, were unclear about PrEP’s purpose, how and whether it works, and how it is intended to be taken, including when it can be discontinued. Misconceptions included that PrEP’s side effects are severe, PrEP is treatment for HIV, PrEP is experimental, PrEP can be stopped after 6 months, and PrEP is expensive. Many believed that PrEP should not be taken with alcohol. Conspiracy beliefs included that one can get cancer or HIV from PrEP. Fisherfolk felt social pressure not to take PrEP, due to such beliefs in their social networks. Among stakeholders, lack of awareness and misconceptions were viewed to be at least partially a result of PrEP not being explained adequately by healthcare providers.

Recommendations

Stakeholders and fisherfolk offered creative solutions for enhanced PrEP implementation in fisherfolk communities (Table 4).

Table 4.

The ‘Four Ps’ of Social Marketing Applied to Recommendations for PrEP Implementation for Fisherfolk.

Recommendation	Representative Quotes: Fisherfolk	Representative Quotes: Stakeholders
Product
Change packaging/label/insert to address stigma	‘A change in containers such as the use of paper bags other than the bottles, will reduce this kind of stigma. The format too needs changing because it is like that of ARVs [antiretroviral therapy for HIV], because the format/shape, size and container are all conclusive of one being on ARVs. It should either be made round or a bit smaller.’ 28 year-old businesswoman	‘I would suggest a different packaging for PrEP if possible.’ Healthcare provider (supports districts to implement HIV prevention)
Integrate PrEP provision with other healthcare services to address competing needs, mobility, and stigma	N/A (no relevant quotes)	‘All along I wanted this idea … every time I wanted to go to a healthcare facility to get PrEP drugs that I can give out to communities, they could give us a number of different types of drugs that treat all diseases. So, in the process of giving out these drugs to people we could give out PrEP refills as well. We could use the opportunity of treating other diseases to give out PrEP refills to people as it used to be before.’ Villiage Health Team
Decrease refill frequency to address mobility and competing needs	‘I would prefer to be given drugs that can last for 3 months. 32 year-old fisherman	‘We can think of giving them more months. … can we try to see that if we have compliant people, people who adhering well, can we give them 2 months. If they continue to show that they are working well, can we give 3 months, if they are taking on well, can we increase their span, so that even though someone is away for a number of months, when he comes back to this distribution point, even after 3 months, even after 6 months, he is able to get a refill, and therefore will not be affected.’ Local district policymaker for key populations
Price
Remind PrEP users about refills through text and phone	‘It is very possible like in some clinics around, and being that you have got our numbers, you would call us and direct us to where you will have put our drugs.’ 58 year-old male, fishing-related occupation	‘We take two phone numbers from them; his and that of someone who is always closer to him. Now, when the day for that person is almost due, the providers try to reach out to find out where he is … we get a list of those who are supposed to come on that day, reach out to them to remind them, and for those who may not be able to, we ask them for the reason why they will not be able to make it.’ Community leader (local chairperson)
Ask PrEP users to select adherence supporters	‘The best thing is ensuring that you get phone contacts of this person. Even if one doesn’t own a mobile phone, you have to get a phone number of someone who is close to him who could deliver a message to him, like ‘the providers have said that they will be coming.’ 44 year-old businessman	‘They need to get people who can at least remind them, or whom we can call their treatment supporters. Even when the providers are giving out that medication, they can at least ask for their treatment supporter who can help them take their medication. The providers themselves can also keep reminding them.’ Healthcare provider (supports implementation of health services in community)
Place
Increase access points so that refills are easily available when needed	‘I think it would be great if they spread the service to other areas … to yield the best result, the drugs should be available [at the health facility] permanently instead of providers saying that today they will be providing the service in Masaka, and the other day in Kitoro, no. It would be nice that the drugs are there permanently and in plenty … I think that would be great because one would go there any time and get them other than waiting until the next month when the providers return.’ 42 year-old female, fishing-related occupation	‘I think it would be better to work hand in hand with the nearby clinics or hospitals and we give them drugs. Our responsibility will be to make sure that drugs are available at these healthcare facilities and people are picking the drugs from these nearby healthcare facilities ... We need to find ways of keeping the drugs in areas near to the people so that if the person runs out of drugs, he can easily go to the doctor who is in the client’s community and pick the drugs.’ Villiage Health Team
Provide trainings for healthcare providers and local leaders so that they can educate communities and answer questions about PrEP	N/A	‘Every health worker must be trained … you can find a health facility having over 50 workers and only 5 have been trained in PrEP provision. And I might come to the facility for a different reason altogether but in case this health worker screens and finds that I’m at a substantial risk, he/she can tell me the benefits and tell me about PrEP as one of the interventions.’ National policymaker
Promotion
Develop positively framed messages	‘HIV patients are told that getting infected is not the end, you can still live for years so long as you are taking your drugs well. The same thing should be done about PrEP. You can tell someone that your life is important and you love it so much, you also have goals to fulfill but this drug will help you to be safe.’ 27 year-old businesswoman	‘Talk about the advantages of PrEP, why they should be taking it, then you talk about how it’s going to help them change their lives – their risky lives -- and you can also talk about the dangers of HIV … and how it can affect their bodies.’ Healthcare provider (HIV counselor)
Provide PrEP information through healthcare providers	‘Doctors need to sensitize, encourage and also give advice to people.’ 50 year-old housewife	‘There should be a health worker and their fellow peer. These two should work together because sometimes there could be [more] trust in the health worker than the peer.’ National policymaker
Promote PrEP through current PrEP users	‘After explaining to him, you show him that even you take it … you tell them that so and so has taken it. … It’s like circumcising, they normally put a spot for circumcising people for free but still the person who was circumcised he is the one who tells others that he was circumcised well and it took him 2 weeks to get healed and they gave me medication. They also gave me some money to survive for the time I haven’t been working.’ 30 year-old fisherman	‘If we are going to sensitize in area, it would be better to at least get one person who has used the drug before to give a testimony about the drug. This person can encourage other people to use the drug. He is in better position to encourage other people to use the drug than the one sensitizing because he knows the good and bad about the drug.’ Villiage Health Team
Promote PrEP through local community leaders/providers	‘The village chairman can use a loud speaker to inform people that on such and such a day a drug of this nature will brought so that people are aware… A village chairman or [community leader] can tell people about the drugs … Because the chairman is responsible for taking care of the village. He will make sure people take drugs.’ 18 year-old fisherman	‘If we train [community] leaders and we give them a small incentive … they can do a better job. … they can even give us a good place where we can do our testing but they are also ignorant about PrEP services but if they are trained on what we are giving and what they can give to our clients it will help us, however, we have to train them beyond PrEP.’ Healthcare provider (HIV counselor)
Use preferred media sources	‘The best way is to educate the masses by using the available media. Come to an area, pay the local radios, and educate the masses.’ 28 year-old male businessman	‘Most people are always glued to their TVs most especially … the local loud speakers would do a very good job since with the coming of phones, most people find no time to listen to the radio.’ Community leader (local chairperson)

Note: Gender and age are not provided for stakeholders to protect their identities (given the small number of stakeholders with their occupational titles).

Product

To address stigma concerns around the association of PrEP to HIV, a major recommendation across interviews was to change PrEP medication packaging and use clear labels indicating that the medicine is for HIV prevention and not treatment. Furthermore, stakeholders suggested integrating PrEP and HIV testing services with other types of health-related services (e.g., immunization, family planning, sexually transmitted infection testing and treatment). In addition to addressing stigma concerns, such integration would help to address barriers related to mobility, transportation, and competing needs, given fisherfolk’s limited time and resources to visit healthcare. In addition, barriers about PrEP implementation could be addressed by decreasing PrEP refill frequency (e.g., monthly to every 3 months).

Price

To address barriers to getting refills and adhering to PrEP, participants suggested adapting strategies that are already used for community ART delivery and HIV treatment adherence. Fisherfolk suggested that healthcare providers could obtain the phone numbers of people on PrEP as well as their close contacts, such as a selected adherence supporter, so that they could text or call about the next refill date and place. For adherence, fisherfolk suggested counseling PrEP users to set a phone reminder or alarm, or ask a close friend or family member, such as an adherence supporter, to do so.

Suggestions also were made in terms of supplying transportation funds, a risk allowance, travel insurance, and lifejackets to providers, so that they could travel to islands safely to dispense PrEP. Transportation incentives for providers were seen as a better option than transportation incentives for PrEP users, as both stakeholders and fisherfolk said that getting transport funds did not guarantee that PrEP users would take the medications and may not be sustainable.

Place

An overall theme for PrEP implementation is that fisherfolk want multiple options and cannot have a one-size-fits-all approach. A key sentiment was that PrEP and refills need to be provided close to fisherfolk communities, to meet them where they work and live. Thus, local providers need to be trained to provide PrEP so that fisherfolk can obtain refills at additional places when they are traveling. Different acceptable options for PrEP implementation included getting refills at healthcare facilities, the local hospital, and/or healthcare outreach events. Fisherfolk were split on whether delivery directly (e.g., to homes or boats) would be acceptable. Some expressed stigma and privacy concerns, whereas others said that home delivery reduced the stigma of being seen at a healthcare facility or outreach event.

Promotion

Across interviews, participants suggested that the benefits of PrEP as preventing HIV need to be conveyed clearly and accurately. Fisherfolk suggested using positively framed messages that emphasize PrEP’s benefits beyond its efficacy, including that PrEP allows one to live a long healthy life with peace of mind, without worrying about HIV; using PrEP shows that you love your life; PrEP helps to protect you, your family and your community; and PrEP can be discontinued, but HIV and taking ART is life-long. Suggested media sources included radio and television advertisements, loudspeakers, edutainment, and DJs at outreach events, and posters with positively framed PrEP messages pinned at healthcare facility entrances and waiting areas, as well as in non-healthcare community locations. Fisherfolk felt that the likelihood of partner conflict around PrEP could be reduced if there were sufficient sensitization in fisherfolk communities, so that PrEP would be more understood and viewed positively—and thus less stigmatized.

Above all others, fisherfolk said that only trained healthcare workers (especially doctors) could be trusted to supply accurate information about PrEP. However, trainings for healthcare providers need to be tailored around unique issues in fisherfolk communities that might affect PrEP adherence and refill pick-ups, and include education about relevant subgroups and occupations (e.g., fishermen, fish sellers, sex workers), generally low literacy levels, risk factors (e.g., substance use, gender-based violence), and how to handle difficult and potentially unsafe situations (e.g., intoxication, violence, water travel).

Some fisherfolk said that they would trust VHTs and local leaders to mobilize communities for outreach events, if such individuals were sufficiently educated about PrEP. Fisherfolk and stakeholders suggested asking peer PrEP users (e.g., PrEP champions) to give testimonials about their experiences, to demonstrate that they have not suffered ill consequences or severe side effects. Such testimonials could help to reduce stigma.

Discussion

This qualitative study found high acceptability and anticipated feasibility of implementing oral PrEP in hyperendemic fishing communities in Uganda among multiple levels of stakeholders, including policymakers, healthcare providers, and community leaders, as well as potential and actual PrEP users themselves. We extended prior qualitative and quantitative research in Uganda fisherfolk communities, which has similarly found high PrEP acceptability and low knowledge. Prior research also has identified some of the same themes that emerged in the present study regarding anticipated barriers (e.g., stigma concerns, mobility, transportation, competing needs, partner conflict, and food insecurity among fisherfolk; understaffing among healthcare providers) and facilitators (perceived risk, closeness of services).^7,19 Many of these barriers may affect PrEP adherence and continuation as well as, or perhaps more than, uptake—which may be why prior research on community-based ART delivery has found high PrEP acceptance yet high discontinuation.²⁸

The interview guide and analysis were structured around implementation science and social marketing frameworks. Thus, in addition to eliciting factors that impede or facilitate implementation, we heard recommendations for improved implementation strategies and specific key messages to use in PrEP public health campaigns. Our results provide a roadmap for PrEP implementation with interventions at multiple levels. At the policy level, changing PrEP packaging and labeling to indicate that pills are for HIV prevention (and not treatment) would be a major advance toward reducing stigma. Although not mentioned as a key theme in the interviews, as injectable PrEP becomes more widespread (along with less frequent healthcare visits), stigma as well as other barriers to adherence and refill receipt, such as mobility, may decrease. In addition, refills could be provided as part of general healthcare outreach events that are not specific to HIV services. However, such changes would not reduce community HIV stigma, but would allow PrEP users to be shielded from HIV stigma and the assumption by others that they are HIV-positive. To truly address stigma, as suggested by participants, community campaigns and discussions around PrEP, including PrEP user testimonials that normalize PrEP use, would be needed in tandem with packaging changes.

Our results suggest further intervention at the healthcare level to address fisherfolk’s mobility and competing needs: PrEP can be provided in multiple settings (in local healthcare facilities as well as outreach events), if local healthcare providers receive adequate training. In addition, as has also been recommended in prior research,⁷ text and telephone reminders can be used to facilitate PrEP continuation as can adherence supporters; and at the community level, current PrEP users can provide credible advice, testimonials, and peer support around adherence. Such strategies have been effectively used to promote HIV treatment adherence^29,30 and can be applied to PrEP as well.

Participants preferred positive framing for PrEP messages that promote PrEP as a way for themselves and their loved ones to live long and healthy lives without the stress of HIV. Prior research in sub-Saharan Africa and the U.S. has similarly indicated that PrEP is perceived to have mental health benefits.^31,32 Such a positive perspective and will to live contrasts with prior research suggesting that fatalism contributes to fisherfolk’s HIV risk.³³ In the present study, participants tended to emphasize structural barriers related to work, poverty, and healthcare as contributing to PrEP acceptance and feasibility, more than individual-level barriers such as fatalism.

A limitation of the present study is the focus on two fishing villages on the shores of Lake Victoria in Uganda, both of which received PrEP through healthcare outreach events. Results may not generalize to other fisherfolk communities, such as islands, that are further from healthcare facilities that provide PrEP. Nevertheless, the sample showed high mobility, and many likely traveled to island communities throughout the year. Moreover, this study was conducted relatively early in the implementation of oral PrEP for fisherfolk communities in Uganda, at a time when only key and priority populations had access to PrEP. Misconceptions, stigma, and other barriers may decrease over time as PrEP is scaled up across the region, and when injectable PrEP becomes available. Overall, our findings can inform policymakers and healthcare organizations who strive to overcome barriers to PrEP and reduce HIV incidence in most at-risk populations.

Footnotes

Author’s Note

Bogart and Musoke are sharing first authorship, and Mukasa and Wanyenze are sharing senior authorship.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute of Mental Health (P30MH058107, R34 MH119924).

ORCID iD

Laura M. Bogart

Author Biographies

Laura M. Bogart, PhD, is a Senior Behavioral Scientist at the RAND Corporation.

William Musoke, MBChB, is Prevention Coordinator at Mildmay Uganda.

Jimmy Mayatsa, MPH, is a Study Coordinator at the Makerere University School of Public Health.

Terry Marsh, MPH, was a Policy Analyst at the RAND Corporation during this project. He is now a UX Researcher at Meta.

Rose Naigino, MPH, was a Study Coordinator at Makerere University School of Public Health during this project. She is currently a student in the Joint Doctoral Program at the University of California San Diego / San Diego State University School of Public Health.

Anchilla Mary Banegura, MBChB, MPH, was Research Manager at Mildmay Uganda during this project. She is now coordinating a health systems research project at the Makerere University School of Public Health.

Christopher Semei Mukama, DCM, MPH, is an Operations Research Coordinator at Mildmay Uganda.

Stella Allupo, DCM, BSPH, is a Prevention Care and Treatment Officer at Mildmay Uganda.

Mary Odiit, MSIS, is Director of Research and Strategic Information at Mildmay Uganda.

Herbert Kadama, MBChB, MPH, is the PrEP Coordinator for the Ministry of Health, Republic of Uganda.

Barbara Mukasa, MBChB, MPH, is Executive Director of Mildmay Uganda.

Rhoda K. Wanyenze, MBChB, PhD, MPH, is Dean and Professor at the Makerere University School of Public Health.

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