Vol.:(0123456789)1 3 AIDS and Behavior https://doi.org/10.1007/s10461-021-03360-3 ORIGINAL PAPER Qualitative Assessment of Barriers and Facilitators of PrEP Use Before and After Rollout of a PrEP Program for Priority Populations in South‑central Uganda William Ddaaki1 · Susanne Strömdahl2,3 · Ping Teresa Yeh4 · Joseph G. Rosen4 · Jade Jackson5,6 · Neema Nakyanjo1 · Joseph Kagaayi1 · Godfrey Kigozi1 · Gertrude Nakigozi1 · M. Kathryn Grabowski6 · Larry W. Chang4,5,8 · Steven J. Reynolds1,5,7,8 · Fred Nalugoda1 · Anna Mia Ekström2 · Caitlin E. Kennedy4  Accepted: 19 June 2021 © The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature 2021 Abstract Uganda piloted HIV pre-exposure prophylaxis (PrEP) for priority populations (sex workers, fishermen, truck drivers, dis- cordant couples) in 2017. To assess facilitators and barriers to PrEP uptake and adherence, we explored perceptions of PrEP before and experiences after rollout among community members and providers in south-central Uganda. We conducted 75 in- depth interviews and 12 focus group discussions. We analyzed transcripts using a team-based thematic framework approach. Partners, family, peers, and experienced PrEP users provided adherence support. Occupational factors hindered adherence for sex workers and fishermen, particularly related to mobility. Pre-rollout concerns about unskilled/untrained volunteers distributing PrEP and price-gouging were mitigated. After rollout, awareness of high community HIV risk and trust in PrEP effectiveness facilitated uptake. PrEP stigma and unexpected migration persisted as barriers. Community-initiated, tailored communication with successful PrEP users may optimize future engagement by addressing fears and rumors, while flexible delivery and refill models may facilitate PrEP continuation and adherence. Keywords  Pre-exposure prophylaxis · Implementation science · Uganda · Sex workers · Fishing communities Resumen En 2017, Uganda introdujo profilaxis pre-exposición (PrEP), dirigida a las populaciones con alto riesgo de contraer al VIH (trabajadoras sexuales, pescadores, camioneros, parejas sero-discordantes). Para investigar facilitadores y barreras para la adopción y la adherencia a la PrEP, exploramos percepciones de PrEP antes y después de su introducción en Uganda. Reali- zamos 75 entrevistas y 12 grupos focales con miembros de la comunidad y trabajadores de salud. Analizamos las transcrip- ciones temáticamente usando un marco de referencia. Parejas, familias, compañeros, y clientes usando PrEP apoyaron a los William Ddaaki, Susanne Strömdahl and Ping Teresa Yeh are co- first authors, and Anna Mia Ekström and Caitlin E. Kennedy are co-senior authors. * Caitlin E. Kennedy caitlinkennedy@jhu.edu 1 Rakai Health Sciences Program, Kalisizo, Uganda 2 Department of Global Public Health, Karolinska Institutet, Stockholm, Sweden 3 Section of Infectious Diseases, Department of Medical Sciences, Uppsala University, Uppsala, Sweden 4 Social and Behavioral Interventions Program, Department of International Health, Johns Hopkins Bloomberg School of Public Health, 615 N. Wolfe St., E5547, Baltimore, MD 21205, USA 5 Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA 6 Department of Pathology, Johns Hopkins School of Medicine, Baltimore, MD, USA 7 Division of Intramural Research, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, USA 8 Department of Infectious Disease, Division of Medicine, Johns Hopkins School of Medicine, Baltimore, MD, USA http://orcid.org/0000-0001-6820-063X http://crossmark.crossref.org/dialog/?doi=10.1007/s10461-021-03360-3&domain=pdf AIDS and Behavior 1 3 demás mantener adherencia. Movilidad fue una barrera para la adherencia a la PrEP para trabajadoras sexuales y pescadores. Preocupaciones sobre el entrenamiento de los distribuidores de PrEP y la especulación de precios no fueron realizadas. Percepciones del riesgo del VIH y confianza en la eficacia de PrEP facilitaron su adopción. Estigma y migración inesperada persistieron como barreras para la adopción de PrEP. Comunicaciones manejadas por clientes usando PrEP pueden motivar interés en PrEP y abordar rumores. Sistemas flexibles del entrego y la recarga de medicinas pueden permitir continuación de, y adherencia a, la PrEP. Introduction Pre-exposure prophylaxis (PrEP) is a promising component of combination prevention for individuals at risk of HIV acquisition [1–3]. In sub-Saharan Africa, studies among priority populations such as HIV-serodiscordant couples, female sex workers, adolescent girls and young women, and fishermen have reported high willingness (60–90%) to use PrEP [4–8]. By mid-2018, PrEP pilot programs among priority populations were introduced widely in several sub-Saharan African countries, with mixed results. In the Partners PrEP trial in Kenya, men who have sex with men (MSM) and HIV-serodiscordant couples showed high uptake (97%), retention (> 90% at three months), and adherence (> 80%) to PrEP [9–11]; high rates of PrEP uptake (82.4%) and retention (73.4% at 12 months) were also seen in a dem- onstration project among sex workers in Benin [12]. How- ever, low uptake (18%) was observed when PrEP was offered with door-to-door HIV testing in the SEARCH study in rural Kenya and Uganda [13]; and PrEP adherence among female sex workers in the TAPS Demonstration Project in South Africa fluctuated widely over 12-month follow-up [14]. In Uganda, sex workers described challenges with PrEP uptake and adherence including alcohol use, irregular work- ing hours, and fear that the pills will be confused with HIV treatment [15]; another study asking Ugandan priority popu- lations (MSM, sex workers, fishermen, and serodiscordant couples) about potential barriers to PrEP found that accessi- bility of health facilities, stigma, busy schedules, forgetting, and alcohol use were commonly anticipated concerns [16]. Previous systematic reviews have underscored the need to evaluate how PrEP programs can be optimized among high-risk populations in sub-Saharan Africa. Important knowledge gaps include how to increase–PrEP awareness, uptake, adherence, and retention and how to address fear of PrEP disclosure, stigma, mobility, transportation costs, and mismatches between consistent PrEP dosing and unpredict- able lifestyles [17, 18]. Fishing villages and nearby communities have been identified as hyperendemic geographic "hotspots" for HIV: complex gendered patterns of migration, transactional sex, substance abuse, infrequent condom use, and health service disengagement cultivate a risk environment for heightened HIV acquisition and transmission [19–21]. Despite this high HIV burden, coverage and use of HIV services along the prevention, care, and treatment continuum have histori- cally been inadequate. For example, from 2011 to 2013, among HIV-seropositive residents of fishing communities in south-central Uganda, only 18% of women and 13% of men reported antiretroviral therapy (ART) use [19], and uptake of voluntary medical male circumcision for HIV prevention and HIV testing and counseling were similarly suboptimal [21]. While many of these indicators have improved dramati- cally after focused programmatic attention to fishing com- munities in recent years [20], these communities remain a high priority for HIV service delivery. Identifying strategies to engage people who are not using HIV services with new prevention tools like PrEP is nec- essary to curb HIV transmission. A more in-depth under- standing of the facilitators and barriers to PrEP uptake and adherence may improve future PrEP scale-up in sub-Saharan Africa, especially among priority populations. Our goal in this qualitative study was to explore and compare clients’ and health service providers’ knowledge, attitudes, and expe- riences surrounding PrEP before and after it was rolled out in late 2017 by the Rakai Health Sciences Program (RHSP) in HIV-hyperendemic Lake Victoria fishing communities (HIV prevalence around 41% [22]) and trading centers (HIV prevalence around 13% [22]) in Rakai, Kyotera, and Masaka Districts of south-central Uganda. Using a longitu- dinal design, we identify which concerns had been addressed during program rollout and characterize differences between expectations and realities of user experiences. Methods The RHSP PrEP Program In November 2017, with support from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) through the U.S. Centers for Disease Control and Prevention (CDC)- Uganda, RHSP initiated a pilot PrEP program [23]. It was one of a few PrEP demonstration sites in Uganda, selected for its extremely high HIV burden. Providers were trained on PrEP basics (e.g. what is PrEP, why is PrEP needed, benefits of PrEP, identification of individuals at substantial risk for HIV infection, relationship between PrEP effectiveness and adherence, PrEP regimens recommended in Uganda, PrEP implementation concerns), screening for PrEP eligibility, AIDS and Behavior 1 3 counselling and care provision at initial and follow-up vis- its, monitoring and managing PrEP side effects, stigma, and PrEP monitoring and evaluation tools. After intensive community mobilization and sensitization, including meg- aphone announcements in fishing communities and peer/ venue-based outreach, the program screened and enrolled HIV-negative individuals aged  ≥ 15 years who self-reported being at substantial risk of HIV acquisition, including fisher- men, female sex workers, truckers, and HIV-serodiscordant couples, at health facilities and outreach centers. Eligible clients were counselled on the need for daily dosing, poten- tial side effects, and when PrEP could be discontinued. They were also given contact information in case of further questions or problems. Enrolled clients were requested and received follow-up phone reminders to return to program clinics for PrEP refills, additional risk assessment, adherence counselling, and HIV retesting 30 days after initiation and every three months thereafter. Refill schedules were flexible to fit client preferences. A quantitative evaluation of the RHSP PrEP program (April 2018–March 2019) showed that it was initially highly successful at enrolling eligible individuals [23]. Out of 2985 individuals screened for PrEP eligibility, 2751 were offered PrEP, and 2536 (92.2%) accepted and enrolled on PrEP. However, early PrEP discontinuation was high, with a median retention of only 45.4 days. Discontinuation was higher among female sex workers, fishermen, and truck driv- ers compared to HIV-serodiscordant couples. Retention did not differ by age or marital status. Data Collection Qualitative data were gathered before and after PrEP roll- out. In May–August 2016 and August–September 2017, we conducted a formative study using semi-structured in-depth interviews (IDIs) to explore knowledge, attitudes, and per- ceptions about the proposed PrEP program among fishing community members and service providers in three high- HIV-burden fishing villages on Lake Victoria (Kasensero, Ddimo, and Malembo). The interview guides covered knowledge and perceptions of PrEP, perceived barriers to and facilitators of PrEP uptake and adherence, possible avenues of misuse among end-users, and acceptability of potential program components. Service providers responded to the same questions and were also asked about logistics and operational feasibility of the proposed PrEP program. In March–June 2019 (approximately one year after PrEP roll-out), we conducted a follow-up study in fishing villages and trading communities to understand people’s experiences with PrEP, ascertain reasons for low adherence, and identify preferred PrEP delivery models that would increase uptake, adherence, and retention. IDIs were used to elicit open- ended responses, encourage discussion, and enable probing at an individual narrative level; focus group discussions (FGDs) captured broader community norms among groups of community members of the same gender and in the same age range. Both IDI and FGD field guides included ques- tions on the following domains: perspectives on the PrEP initiation process, PrEP user experiences and adherence challenges, drivers of PrEP discontinuation, and recom- mendations to strengthen PrEP delivery. For both rounds of data collection, and for both IDIs and FGDs, with help from RHSP community health workers, participants were purposively recruited from existing Rakai Community Cohort Study (RCCS) computer-generated lists of community members who had agreed to be contacted to participate in future studies. We purposively sampled higher-risk subgroups in fishing villages: female sex work- ers, fishermen, and other sexually active women 18 years and older, as well as healthcare providers. After rollout, we purposively sampled service providers (e.g. HIV clinicians, PrEP program coordinators) as well as client subgroups from the fishing village and trading center communities, includ- ing non-acceptors of PrEP, new PrEP initiates, PrEP users with durable adherence (determined by pill-counting (> 80% use), self-report (did not miss taking PrEP in the last 3 days), and appointment-keeping (kept appointment dates for PrEP refills)), non-adherent PrEP users, and people who discon- tinued PrEP. For one specific subgroup, snowball sampling among peer leaders was also employed to consecutively identify and recruit more female sex workers for the study. Potential participants were approached through peer lead- ers and community health mobilizers. All participants were given study information and provided written consent to participate. IDIs and FGDs lasting approximately 90 min- utes were conducted by trained, experienced interviewers in the local language (Luganda) in a private location of the interviewee’s choice or at community venues (e.g. church, school) suggested by FGD participants. Interviews were audio-recorded with consent from participants, and the audio recordings were destroyed after data were transcribed and translated into English. The studies were reviewed and approved by Ugandan IRBs (the Research and Ethics Committee of the Uganda Virus Research Institute and the Uganda National Council of Science and Technology), and by the Western IRB and the Johns Hopkins School of Medicine eIRB in the U.S. Analysis Textual data were analyzed using a thematic framework approach [24, 25] to understand awareness of PrEP, uptake, adherence, and retention. Transcripts were repeatedly and independently read and coded by multiple co-authors. A coding framework was developed, reflecting a set of tex- tual codes developed from recurring categories and themes AIDS and Behavior 1 3 [26]. An iterative process of data analysis was employed: codes and categories were identified and examined by co- authors, and variations, richness, and links between them were explored to develop, refine, and categorize themes [27]. Regular team debriefs and memos aided synthesis. Themes were derived both deductively and inductively until data saturation was reached across the participant sub-groups and topic guides [28]. Emerging themes and categories were entered in a data synthesis template. Co-authors then organized findings according to three dimensions: before versus after PrEP roll-out, steps along Nunn et al.’s PrEP continuum of care [29], and a multi-level socio-ecological model (interpersonal or household, occupation, program, and community levels). As other studies have thoroughly explored individual-level factors for PrEP usage [30–34], we focused on these other levels. Results Table 1 (IDIs) and Table 2 (FGDs) present participant demo- graphics. Prior to PrEP rollout, we conducted 32 IDIs in three fishing communities: 6 providers, 10 fishermen, 12 female sex workers, and 4 sexually active women. A year after PrEP rollout, we conducted 43 IDIs and 12 FGDs in fishing villages and trading communities. The IDIs con- ducted after program rollout among actual and potential end- users included 6 who had declined PrEP, 3 newly started on PrEP, 15 on PrEP and adherent, 7 on PrEP with poor adher- ence, and 8 who discontinued PrEP, as well as 4 service providers. The FGDs included 94 community members rep- resenting men and women across age bands. Altogether, we included 169 participants: 62 men (age range: 15–47 years) and 107 women (age range: 15–42 years). Emergent themes with illustrative quotes are organized according to interpersonal/household (Table 3), occupation (Table 4), program (Table 5), and community (Table 6) lev- els to characterize and illustrate multi-level aspects of PrEP uptake and adherence. Below and summarized in Fig. 1, we present facilitators and barriers to PrEP uptake and adher- ence, as described by participants before and after PrEP rollout. Interpersonal (Dyadic) and Household Level Facilitators for PrEP uptake and adherence at the interper- sonal level mentioned consistently before and after PrEP rollout included having relationships that were perceived to entail HIV risk. Some participants perceived PrEP as an effective HIV prevention method that can be controlled by individuals who may be living with a partner they do not trust (e.g. may have other sexual partners outside their relationship, suspect dishonesty about HIV-negative sta- tus) or with whom they felt unable to negotiate safer sex (e.g., condom use with permanent/long-term partners). In addition, wishing to remain in an HIV-serodiscordant rela- tionship and/or wanting to have a child with a HIV-positive Table 1.   Characteristics of in-depth interview participants, before and after PrEP rollout in Rakai a On PrEP (Adherent) refers to PrEP users with durable adherence, determined by any one of three measures taken at the local PrEP clinic: pill-counting (> 80% use), self-report (did not miss taking PrEP in the last 3 days), and appointment-keeping (kept appointment dates for PrEP refills). On PrEP (Non-adherent) refers to PrEP users who did not meet any of these three criteria Type of participant Number of participants, by steps along the PrEP cascadea Before (2017) After (2019) Hypothetical PrEP usage Declined PrEP Newly started PrEP On PrEP (Adherent) On PrEP (Non- adherent) Discontinued PrEP Total after PrEP rollout Community members 6 3 15 7 8 39 Sexually active women (fishing villages) 4 0 Individual in a HIV sero-discordant relationship (mainland and fishing villages) 0 0 1 4 1 1 7 Fishermen (fishing villages) 10 3 0 5 4 3 15 Sex workers (mainland and fishing villages) 12 3 2 6 2 4 17 Service providers 6 4 Total in-depth interview participants, before and after rollout 75 Table 2   Characteristics of focus group discussion participants, after PrEP rollout in Rakai Type of participant Number of participants, by age band (years)  Total Community members 15–19 20–34 35+  Men 6 10 16 32 Women 32 15 15 62 Total focus group discussion (n = 12) participants 94 AIDS and Behavior 1 3 Ta bl e  3   F ac ili ta to rs a nd b ar rie rs o f P rE P up ta ke a nd a dh er en ce a t t he in te rp er so na l a nd h ou se ho ld le ve l Th em e Ti m in g Ill us tra tiv e qu ot e Fa ci lit at or s Pe rc ei ve P rE P as e ffe ct iv e H IV p re ve nt io n m et ho d w hi ch th ey c an c on tro l i f l iv in g w ith un tru ste d pa rtn er , m ist ru st pa rtn er ’s H IV st at us , o r u na bl e to n eg ot ia te sa fe se x (e .g . co nd om u se w ith p er m an en t p ar tn er s) B ot h Th is is w ha t f or ce d m e to g o on P rE P. O ur w iv es h er e at th e fis hi ng si te c an no t b e tru ste d. Yo u ca nn ot st an d an d sa y sh e is m y w ife a nd m in e al on e, n ot a t a ll. S o, I fo un d m ys el f at ri sk o f g et tin g H IV , a nd I de ci de d to ta ke P rE P. (I D I, m al e, 4 2  ye ar s o ld , fi sh er m an , re m ai ni ng o n Pr EP a nd a dh er en t) Pr EP e na bl es fu tu re -p la nn in g: d es ire to re m ai n in a se ro -d is co rd an t r el at io ns hi p or h av e a ch ild w ith a se ro -d is co rd an t p ar tn er (s af er c on ce pt io n) B ot h I a m re ad y to ta ke P rE P be ca us e I h av e a pa rtn er w ho m I ha ve b ee n w ith fo r o ve r a y ea r. W he n w e fir st st ay ed to ge th er , I d id n ot k no w th at sh e ha d H IV . W he n sh e be ca m e pr eg na nt — sh e’ s n ow fi ve m on th s p re gn an t— sh e w as te ste d w he n sh e w as th re e m on th s pr eg na nt , a nd sh e ha d H IV . I d on ’t ha ve H IV , b ut sh e ha s i t, so if P rE P is in tro du ce d, it ca n he lp m e re m ai n ne ga tiv e. A nd if sh e ad he re s t o he r m ed ic in e w el l, w e ca n st ay to ge th er a nd b rin g up o ur c hi ld re n. (I D I, m al e, 3 0  ye ar s o ld , fi sh er m an , fi sh in g vi lla ge ) Pa rtn er s/ fa m ily m ak e re m in de rs a nd p ro vi de su pp or t f or c on tin ue d us e of P rE P B ot h So m et im es I di d no t t ak e m y m ed ic in e, o r I w en t b ac k ho m e la te … y ou k no w , s om et im es I r id e a bo da b od a [m ot or cy cl e] a nd sp en d th e en tir e da y aw ay . W he n I g o ba ck a t n ig ht , sh e [m y w ife ] t el ls m e to sw al lo w m y m ed ic in e. (I D I, m al e, 2 3  ye ar s o ld , fi sh er m an , re m ai ni ng o n Pr EP a nd a dh er en t) B el ie f t ha t h ea lth p ro te ct io n pr ov id ed b y Pr EP e na bl es fa m ily fi na nc ia l s ta bi lit y B ot h M os t o f t he m [fi sh er m en ] h av e sp en t a lo ng ti m e on th e w at er s fi sh in g an d m ak e a lo t of m on ey , b ut th e m om en t t he y ste p off th e bo at , i t i s c ra te s a nd c ra te s o f b ee r t ha t a re go in g to li ne u p th er e. T he n he w ill e at u p al l h is m on ey u nt il he h as n ot hi ng le ft w ith ou t ev en b uy in g a sh irt fo r h im se lf be ca us e he k no w s t ha t h e is d yi ng a ny ti m e. (I D I, fe m al e, 33  y ea rs o ld , s ex w or ke r, fis hi ng v ill ag e) D is cl os ur e of P rE P us e to p ar tn er s ( tra ns pa re nc y in c om m un ic at io n) A fte r If y ou a re o pe n to y ou r p ar tn er a nd y ou to ld h im a bo ut y ou r t ak in g Pr EP , i t i s e as y to ta ke it fr ee ly . I t c an b e ea si er if th e pe op le y ou st ay w ith k no w th at y ou a re ta ki ng P rE P. It is no t g oo d to h id e th e m ed ic in e. (F G D , f em al es , 1 5– 19  y ea rs o ld , c om m un ity m em be rs , m ai nl an d) B ar rie rs B el ie f t ha t c on do m u se w ith "h ig h- ris k pa rtn er s" g iv es su ffi ci en t p ro te ct io n B ef or e I d o th in k th at p eo pl e’ s s ex ua l r es tra in t i s g oi ng to p lu m m et b ec au se th at p ill is g oi ng to bo os t p eo pl e’ s c on fid en ce , a nd th ey w ill d is ca rd th in gs li ke c on do m s… E ve n If th ey a re go in g to so m eo ne w ho is H IV p os iti ve , t he y w ill g o co nfi de nt ly , r eg ar dl es s o f w he th er th ey a re ta ki ng th e pi ll w el l o r n ot . ( ID I, fe m al e, 2 2  ye ar s o ld , s ex ua lly a ct iv e co m m un ity m em be r, fis hi ng v ill ag e) W ill in gn es s o r p re ss ur e to sh ar e pr es cr ip tio n w ith p er m an en t p ar tn er s B ef or e It is p os si bl e fo r p eo pl e to sh ar e w ith th ei r s ex ua l p ar tn er s a s l on g as th er e ar e no o th er pr oc es se s l ik e te sti ng fo r C D 4 co un t o r s om et hi ng e ls e. (I D I, m al e, 2 6  ye ar s o ld , s er vi ce pr ov id er ) U na ffo rd ab ili ty o f p re sc rip tio n an d hi gh tr an sp or t c os ts fo r r efi ll B ot h A c lie nt c an te ll yo u th at I co m e fro m [l oc at io n] , i t r eq ui re s 2 0, 00 0 sh ill in gs [a pp ro xi - m at el y 7 U SD ] f or tr an sp or t t o R ak ai h os pi ta l. Th ey c an st op P rE P an d te ll yo u, "M us aw o [d oc to r] , I c an no t e ve n m an ag e it. " ( ID I, m al e, 2 7  ye ar s o ld , s er vi ce p ro vi de r) Fi na nc ia l/f oo d in se cu rit y m ay re su lt in p er ce iv ed in ca pa ci ty to m iti ga te si de e ffe ct s B ot h If I ha ve m on ey sa ve d, I ca n be gi n Pr EP ri gh t a w ay b ut if I do n’ t h av e m on ey , I c an po stp on e st ar tin g Pr EP a nd ta ke it a fte r s av in g so m e m on ey so th at a ny ti m e Pr EP m ak es m e fe el d iz zy o r v om it se ve re ly , I h av e m on ey to b uy fo od . ( ID I, m al e, 4 4  ye ar s o ld , fis he rm an , fi sh in g vi lla ge ) AIDS and Behavior 1 3 Ta bl e  3   (c on tin ue d) Th em e Ti m in g Ill us tra tiv e qu ot e Fe ar th at p ar tn er s w ou ld a ss um e Pr EP u se rs w er e un fa ith fu l, ha d m ul tip le se x pa rtn er s, or w er e en ga ge d in se x w or k B ot h Sh e m ig ht b e su sp ic io us th at th ey c an te ll he r p ar tn er th at sh e ta ke s t ha t m ed ic in e. S om e- on e ca n ap pr oa ch y ou r p ar tn er a nd te ll hi m th at "I sa w y ou r w ife ta ki ng P rE P ye t t he y sa id th at it is fo r s ex w or ke rs . W hy d oe s s he ta ke it ? It m ea ns sh e ha s a no th er m an ." Sh e ca n ad d, "G o an d m ak e so m e in ve sti ga tio ns . S he m ig ht b e ha vi ng a no th er m an ." Su ch th in gs c an c au se d om es tic v io le nc e du e to th os e su sp ic io ns . Y ou k no w P rE P ha s s om e re se m bl an ce s w ith A RV . H e m ig ht h av e se en th os e ta bl et s a nd su sp ec t t he m to b e ta ke n by H IV p at ie nt s. So , h e m ig ht th in k th at th e w ife is ju st hi di ng h er H IV p os iti ve st at us fro m h im . ( FG D , f em al es , 2 0– 34  y ea rs o ld , c om m un ity m em be rs , fi sh in g vi lla ge ) Fe ar o f d om es tic v io le nc e be ca us e Pr EP is m ist ak en fo r A RT ​ A fte r So m e of o ur m em be rs w ho w er e m ar rie d fa ce d do m es tic v io le nc e; th ey w er e be at en b y th ei r h us ba nd s b ec au se th ey th ou gh t i t i s a p ill fo r H IV tr ea tm en t. A lth ou gh P rE P pi ll an d A RV s a lm os t l oo k th e sa m e, b ut if y ou a re so k ee n/ ob se rv an t, th er e is so m e di ffe r- en ce . [ … ] T he ti n us ed th at w as u se d fo r p ac ka gi ng is n ot th e sa m e, (i nf or m an t s m ile s) . Th en in te rm s o f s iz e; A RV is b ig ge r a s o pp os ed to P rE P pi ll. In te rm s o f l en gt h; P rE P pi ll is n ot so lo ng a s c om pa re d to A RV s. H ow ev er , f or so m eo ne w ho h as n ev er se en Pr EP p ill b ef or e, o r w he n he o r s he is n ot so k ee n, th e sa m e pe rs on m ay c on fu se it w ith A RT (A RV s) . I n fa ct , f or p eo pl e w ho a re u si ng P rE P, w e ar e be in g ta ke n as p er so ns w ho ar e H IV p os iti ve . F or p eo pl e w ho d on ’t kn ow a ny th in g ab ou t P rE P, th ey c an no t t el l t he di ffe re nc e; fo r e xa m pl e, I m et o ne o f m y fr ie nd s a nd a sk ed , “ H ey , a re y ou a ls o en ro lle d on A RT ?” In o th er w or ds , m os t p eo pl e m ix u p Pr EP w ith A RT fo r H IV tr ea tm en t. (I D I, fe m al e, 2 6  ye ar s o ld , s ex w or ke r, m ai nl an d, re m ai ni ng o n Pr EP a nd a dh er en t) D is co ur ag em en t f ro m p ar tn er s A fte r Su pp os in g yo ur h us ba nd fi nd s y ou r m ed ic in e [P rE P] , w on ’t he th in k yo u al re ad y ha ve H IV ? Ex ac tly . T he m om en t h e fin ds m y m ed ic in e, h e w ill sa y, “ Th is w om an a lre ad y go t th e H IV a nd d id n ot te ll m e? S he is H IV -p os iti ve a nd a lre ad y on tr ea tm en t? ” Th at is h ow he m ay p er ce iv e it. (I D I, fe m al e, 4 3  ye ar s o ld , d is co rd an t c ou pl e, m ai nl an d, re m ai ni ng on P rE P an d ad he re nt ) AIDS and Behavior 1 3 partner—wanting to "plan for the future"—strongly moti- vated some to initiate and adhere to PrEP. Across priority populations, support from partners and family members was deemed important to facilitate adherence. Some believed that the health protection provided by PrEP—combating HIV fatalism and its related risky behaviors—could bolster family financial stability. After PrEP rollout, participants identified an additional facet of relationship-support: disclosing PrEP use to a part- ner facilitated adherence by enabling the partner to help with reminders to take and refill PrEP. For example, one fisher- man noted that after being away all day for work, "When I go back at night, [my wife] tells me to swallow my medicine." One barrier to PrEP use identified before rollout was the perceived adequacy of other prevention methods (i.e., con- dom use with high-risk partners) to avert HIV acquisition. Others were concerned that their adherence to PrEP might be hindered by sharing the prescription with their long-term partners, whether willingly or under pressure. After rollout, some reported gender-based violence due to partners’ confu- sion between PrEP and ART: "they [married women] were beaten by their husbands because they thought it is a pill for HIV treatment." Before PrEP rollout, participants were concerned about the cost of PrEP, especially when weighed against other competing financial obligations. After rollout, cost was not mentioned as a barrier to either uptake or adherence, as PrEP was offered for free. However, participants worried about high transport costs associated with picking up PrEP refills. Another barrier to PrEP uptake and adherence mentioned both before and after PrEP rollout was food insecurity, which rendered medication side effects less tolerable. Importantly, participants expressed concerns that a partner could perceive PrEP use as a sign of infidelity, having multiple sex partners, or being engaged in sex work. After PrEP rollout, partners’ objections to PrEP discouraged uptake and adherence. Occupational Level (for Priority Populations) For sex workers, perceived risky situations prompting PrEP uptake and adherence were mentioned both before and after PrEP rollout, including paying partners giving financial incentives for condomless sex or forcing condomless sex, and unplanned sex work leaving no time to find and use a condom as protection. Before PrEP rollout, sharing PrEP medications with peers was seen as a possible barrier to adherence, though after rollout, drug sharing and a supportive peer environment among sex workers and fishermen were seen as facilitators of adherence. One sex worker said, “If I am stuck, I can bor- row some tablets from a colleague and [take them]. That is how my colleagues support me.” After PrEP rollout, sex workers mentioned that PrEP use made it possible to reduce the number of daily paying part- ners while still making the same income, as clients paid more for condomless sex. This gave sex workers more free time, which they felt facilitated adherence to PrEP. Some barriers to adherence were mentioned consistently before and after PrEP rollout. Fishermen, sex workers, and truck drivers are highly mobile due to their work, which could lead to missed PrEP appointments and refill pick-ups. Sex workers worried that they would lose paying customers due to stigma around PrEP use: customers could mistake PrEP for ART and believe the sex worker was HIV-positive, or they could perceive that PrEP was taken only by people at high risk of HIV and, therefore, would be a marker of high-risk behavior. Other participants worried that PrEP side effects would affect daily functions, energy, and work per- formance, especially important in high-intensity occupations which require vigorous physical activity and attention such as fishing, sex work, and truck driving. After PrEP rollout, some bar girls, waitresses, and fisher- men mentioned difficulties travelling to PrEP appointments due to work restrictions, which limited time off work. In addition, participants described how alcohol misuse com- mon in sex work venues and fishing communities impaired decision-making, leading to missed appointments and refills as well as poor adherence to drug regimens. Program Level Prior to PrEP rollout, programmatic facilitators to uptake and adherence included making PrEP easily accessible and convenient to highly mobile groups, stressing the impor- tance of provider confidentiality, having skilled/trained PrEP health care providers, and maintaining reliable PrEP supply and storage. After PrEP rollout, several program logistics facilitated adherence: telephone reminders by health care providers, the ability to get a three-month supply of PrEP, and peers helping with PrEP refills. Several programmatic barriers were mentioned only before PrEP rollout, such as fear of unskilled community health workers distributing PrEP, price-gouging by commu- nity distributors, inconvenient clinic hours, and long wait times. Before rollout, there was also a concern about unclear guidelines for PrEP eligibility and adherence counseling. These concerns were not mentioned after rollout. However, more structural programmatic barriers mentioned prior to rollout, such as distance from PrEP clinics and staffing or supply shortages, persisted after rollout. Community Level Before rollout, participants described PrEP use as a potential tool for exhibiting their HIV-negative status and AIDS and Behavior 1 3 Ta bl e  4   F ac ili ta to rs a nd b ar rie rs o f P rE P up ta ke a nd a dh er en ce a t t he o cc up at io na l l ev el (f or p rio rit y po pu la tio ns ) Th em e Ti m in g Ill us tra tiv e qu ot e Fa ci lit at or s Fi na nc ia l i nc en tiv es fo r c on do m le ss se x w ith p ay in g cl ie nt s, fo rc ed c on do m le ss se x by p ay in g cl ie nt s, or u np la nn ed o pp or tu ni sti c se x w or k B ot h A s s ex w or ke rs , w e ha d a lo t o f p ro bl em s b ef or e. S om et im es y ou c ou ld a gr ee w ith a m an to u se a c on do m , b ut w he n yo u en te r i n th e lo dg e, h e re fu se s t o us e it. Y ou m ay n ot h av e th e po w er to fi gh t h im . S o, if th at si tu at io n ha pp en s a nd h e us es y ou w ith ou t a c on do m y ou m ay n ot a cq ui re H IV in c as e yo u ta ke th at m ed ic in e. (I D I, fe m al e, 2 8  ye ar s o ld , s ex w or ke r, m ai nl an d, re m ai ni ng o n Pr EP a nd a dh er en t) Su pp or tiv e pe er e nv iro nm en t B ot h Th ey a dv is e yo u th at y ou c an d o ev er yt hi ng y ou w an t b ut y ou sh ou ld n ot fo rg et ta k- in g yo ur m ed ic in e. S o, m y co lle ag ue s a dv is e m e to ta ke m y m ed ic in e es pe ci al ly w he n I a m tr av el lin g to w or k so m ew he re fa r f ro m h er e. (I D I, fe m al e, 2 8  ye ar s o ld , se x w or ke r, m ai nl an d, re m ai ni ng o n Pr EP a nd a dh er en t) Re du ce d nu m be rs o f d ai ly c us to m er s f or se x A fte r I r ed uc ed o n th e nu m be r o f m en . I n o lo ng er ru sh to h av e se x w ith a m an b ec au se I t ak e Pr EP . ( ID I, fe m al e, 2 8  ye ar s o ld , s ex w or ke r, fis hi ng v ill ag e, re m ai ni ng o n Pr EP a nd a dh er en t) D ru g sh ar in g w ith c ol le ag ue s A fte r If I am st uc k, I ca n bo rr ow so m e ta bl et s f ro m a c ol le ag ue a nd [t ak e th em ]. Th at is ho w m y co lle ag ue s s up po rt m e. T he re is a ti m e w e m ov e fa r, w he n so m e of th em fo rg ot th e dr ug s o r i t g ot fi ni sh ed o n th e w ay , b ut y ou u se th e m ed ic in e of a c ol - le ag ue w ho st ill h as so m e ta bl et s. (I D I, fe m al e, 2 8  ye ar s o ld , s ex w or ke r, fis hi ng vi lla ge , r em ai ni ng o n Pr EP a nd a dh er en t) B ar rie rs D ru g sh ar in g w ith c ol le ag ue s B ef or e I t hi nk e ve ry on e sh ou ld g et th ei r o w n m ed ic in e to e ffe ct iv el y pr ev en t H IV . W he n w e sh ar e it an d it ge t fi ni sh ed a nd w e co nt in ue h av in g se x w ith d iff er en t s ex ua l p ar t- ne rs , s ha ll w e no t b ec om e in fe ct ed w ith H IV a nd th en th in k th at th e m ed ic in e w as no t e ffe ct iv e? Y et w e us ed it w ro ng ly b y sh ar in g it. I th in k ev er yo ne sh ou ld g et h is or h er m ed ic in e. (I D I, fe m al e, 2 6  ye ar s o ld , s ex w or ke r, fis hi ng v ill ag e) Lo ng er o r m or e er ra tic -th an -e xp ec te d m ig ra tio n / m ob ile li fe sty le (l im iti ng a cc es s to P rE P or o th er H IV se rv ic es ) B ot h A no th er th in g, th e ch al le ng e w e [P rE P se rv ic e pr ov id er s/ nu rs es ] h av e en co un te re d in th is is th at o ur c lie nt s a re m ob ile . F or e xa m pl e, th e co m m er ci al se x w or ke rs : y ou ca n pr ov id e se rv ic es to h er to da y an d th en sh e m ig ra te s t o an ot he r a re a w ith ou t ev en te lli ng y ou . ( ID I, m al e, 2 7  ye ar s o ld , s er vi ce p ro vi de r) Pr EP si de e ffe ct s i m pa ct a bi lit y to p er fo rm fi sh in g/ se x/ tru ck d riv in g w or k B ot h I h ad st ro ng c ou gh c ou pl ed w ith se rio us c he st pa in . I n th is c as e, I th ou gh t a bo ut go in g fo r H IV te sti ng w ith a ss um pt io n th at I m ay h av e be en in fe ct ed w ith H IV . I al so lo st th e en er gy a nd I w as to o w ea k to u se th e fis hi ng n et s d ur in g ou r fi sh in g ac tiv iti es a s fi sh er m en . T hi s e xp la in s w hy I sto pp ed ta ki ng m y Pr EP m ed ic in e. (I D I, m al e, 3 8  ye ar s o ld , fi sh er m an , fi sh in g vi lla ge , r em ai ni ng o n Pr EP b ut n on - ad he re nt ) AIDS and Behavior 1 3 Ta bl e  4   (c on tin ue d) Th em e Ti m in g Ill us tra tiv e qu ot e O cc up at io n lim its ti m e off w or k A fte r Fo r s om e pe op le w ho a re e m pl oy ee s, th ey m ay n ot b e al lo w ed to c om e fo r t he ir Pr EP m ed ic in e. T he ti m e fo r g oi ng to g et th ei r m ed ic in e, th is m ig ht b e th e sa m e tim e w he n cu sto m er s a re c om in g in . W e w or k as e m pl oy ee s a s b ar w or ke rs , o r w ai tre ss es in re st au ra nt s o r h ot el s. Fo r t he c as e of h ot el s, du rin g m id -d ay , w e ar e al re ad y se rv in g cu sto m er s. D ur in g m or ni ng h ou rs , w e ar e al w ay s p re pa rin g fo od . D ur in g ev en in g tim e, w e ar e bu sy w as hi ng u te ns ils a nd th er ea fte r r et ur n ho m e. T he re fo re , i t i s v er y di ffi cu lt fo r y ou r b os s t o gi ve y ou p er m is si on [t o go fo r ap po in tm en ts o r t o pi ck u p re fil ls ] a nd h e or sh e se es th at y ou a re st ill h ea lth y. M os t Pr EP u se rs a re e m pl oy ee s s om ew he re , a nd it is h ar d to fi x yo ur o w n tim e. I m us t fir st ta lk to m y em pl oy er /b os s t o se ek p er m is si on . S om et im es m y bo ss m ay re fu se . (I D I, fe m al e, 2 6  ye ar s o ld , s ex w or ke r, m ai nl an d, re m ai ni ng o n Pr EP a nd a dh er en t) O cc up at io n in te ns ity /h ou rs e xa ce rb at es p ill b ur de n (o nc e a da y at th e sa m e tim e ea ch d ay ) A fte r A s fi sh er m en , w e st ar t w or k fro m 1 2: 00  p m m id ni gh t u nt il 11 :0 0 A m . I f y ou a re n ot ca re fu l, yo u m ay fi nd y ou rs el f m is si ng a d os e. (I D I, m al e, 2 9  ye ar s o ld , fi sh er m an , fis hi ng v ill ag e, n on -a cc ep to r/d ec lin er o f P rE P) A lc oh ol m is us e co m m on in se x w or k ve nu es a nd fi sh in g co m m un iti es im pa irs de ci si on -m ak in g (e .g . f or ge t d ai ly p ill , m is s p ic ki ng u p re fil ls ) A fte r I t ak e it at 9 am in th e m or ni ng , w he n no t y et in th e ba r. I a m st ill re sti ng a t h om e. If I s ta rt ta ki ng a lc oh ol , I c an fo rg et ta ki ng th e m ed ic in e. (I D I, fe m al e, 2 6  ye ar s o ld , se x w or ke r, m ai nl an d, re m ai ni ng o n Pr EP a nd a dh er en t) AIDS and Behavior 1 3 Ta bl e  5   F ac ili ta to rs a nd b ar rie rs o f P rE P up ta ke a nd a dh er en ce a t t he p ro gr am le ve l Th em e Ti m in g Ill us tra tiv e qu ot e Fa ci lit at or s H ig h- qu al ity p ro vi de r t ra in in g, p ro vi de r c on fid en tia lit y, a nd lo gi sti cs a ro un d eff ec - tiv e/ hi gh q ua lit y/ re lia bl e m ed ic at io n m an ag em en t, sto ra ge , a nd d ist rib ut io n B ef or e H ea lth w or ke rs fr om th e cl in ic a re m or e tra in ed c om pa re d to c om m un ity h ea lth w or ke rs . I f I h av e no t u nd er sto od w el l o n ho w to u se th at m ed ic in e [P rE P] , h e ca n ex pl ai n to m e m or e ho w to u se , k ee p it in o rd er to k no w m or e ab ou t i t. (I D I, fe m al e, 2 2  ye ar s o ld , s ex w or ke r, fis hi ng v ill ag e) C on ve ni en ce fo r h ig hl y m ob ile g ro up s B ot h Th e he al th w or ke r b rin gs th e m ed ic in e he re to u s. W e ga th er a t t he c hu rc h an d ge t Pr EP . H e co m es o n a m ot or cy cl e an d pa rk s a t t he c hu rc h. H e th en g et s o ne o f u s to g o an d lo ok fo r a ll Pr EP u se rs to c om e fo r t he ir re fil ls . ( ID I, m al e, 3 0  ye ar s o ld , di sc or da nt c ou pl e, fi sh in g vi lla ge , r em ai ni ng o n Pr EP a nd a dh er en t) Pr ov id er s g iv e te le ph on e re m in de rs A fte r Th ey u se d to w rit e da te s f or u s a nd in cl ud ed th e da y w he n w e sh al l g o ba ck a nd g et Pr EP . W he n th e da te is d ue , t he y ta ke th e in iti at iv e to c al l y ou o n ph on e an d re m in d yo u. W he n yo u re ac h at th e ce nt er , y ou g o an d ge t t he m ed ic in e… T he re is n o m or e ch al le ng e I fi nd b ec au se w e go a nd g et th e m ed ic in e. (I D I, fe m al e, 2 6  ye ar s o ld , s ex w or ke r, m ai nl an d, re m ai ni ng o n Pr EP b ut n on -a dh er en t) Pe er s c an p ic k up re fil ls fo r o th er s A fte r W e he lp e ac h ot he r b ec au se e ve n w he n th e re fil l d at es a re d ue , s he m ig ht h av e fo rg ot - te n bu t t he n yo u re m in d he r, or I m ig ht h av e fo rg ot te n, a nd sh e re m in ds m e th at le ts go a nd g et o ur m ed ic in e. T ha t i s h ow w e su pp or t e ac h ot he r. (I D I, fe m al e, 3 9  ye ar s ol d, se x w or ke r, m ai nl an d, re m ai ni ng o n Pr EP a nd a dh er en t) Th re e- m on th re fil l s ch ed ul e (in ste ad o f o ne -m on th ) A fte r Th e pe rio d of o ne m on th is re al ly v er y ha rd a nd m os t p eo pl e fa il to a dh er e to it . H ow ev er , c lie nt s o f t hr ee m on th s a re o ka y be ca us e th ey p re pa re fo r i t i n ad va nc e, so th at a fte r t hr ee m on th s t he y ca n go b ac k fo r t he re fil l. (I D I, m al e, 2 7  ye ar s o ld , se rv ic e pr ov id er ) B ar rie rs Fe ar o f u ns ki lle d co m m un ity h ea lth w or ke rs d ist rib ut in g in au th en tic o r e xp ire d pr es cr ip tio ns o r p ric e go ug in g by c om m un ity d ist rib ut er s ( la ck o f fi xe d, tr an sp ar - en t p ric in g) B ef or e If P rE P co st th re e hu nd re d sh ill in gs , a c om m un ity h ea lth w or ke r w ill te ll yo u th at it co sts fo ur h un dr ed sh ill in gs . ( ID I, m al e, 2 6  ye ar s o ld , fi sh er m an ) Lo ng w ai t t im es o r c lin ic o pe ra tio n ho ur s i nc om pa tib le w ith P rE P cl ie nt av ai la bi l- ity , a nd la ck o f c le ar g ui de lin es fo r P rE P el ig ib ili ty o r a dh er en ce c ou ns el lin g B ef or e [D ur in g Pr EP tr ai ni ng ] i t w as m en tio ne d th at se x w or ke rs w ou ld n ot p re fe r t o w ai t fo r l on g ho ur s o r l in in g up a t t he h ea lth c en te r. In ste ad , a se x w or ke r n ee ds in st an t at te nt io n th e m om en t s he a rr iv es a t t he h ea lth c en te r. [B ut so fa r] w e ha ve n ot or ga ni ze d fo r a p riv at e ro om sp ec ifi ca lly fo r P rE P an d no sp ec ifi c he al th p ro vi de r de pl oy ed to w or k on P rE P. (I D I, fe m al e, 3 4  ye ar s o ld , s er vi ce p ro vi de r) D ist an ce fr om P rE P cl in ic s B ot h Th e ot he r c ha lle ng e w ou ld b e di st an ce . T he re a re p eo pl e th at w e st ar te d on P rE P in K ya ba si m ba , w e do n’ t h av e fa ci lit at io n to g o ba ck to K ya ba si m ba . I f w e ha d tra ns - po rt ba ck to K ya ba si m ba , I w ou ld k no w th at I ha ve to g o th er e ev er y m on th o r a fte r tw o m on th s a nd g iv e th em m ed ic in e. T he re a re so m e pl ac es a lo ng th e la ke sh or es th at a re n’ t e as ily a cc es si bl e be ca us e yo u ca n’ t g o th er e w ith m ot or cy cl es , y ou h av e to w al k th er e. (I D I, m al e, 2 5  ye ar s o ld , s er vi ce p ro vi de r) St affi ng o r s up pl y sh or ta ge s B ot h To da y if I l ea ve h er e an d I g o to K ya za ng a [a n ea rb y to w n] , w he re w ill I ge t i t [ Pr EP ] fro m ? I h av e co m e he re to g et it . I t i s o ut o f s to ck o n th at si de o f o ur s, so e ve n th ou gh I ne ed tr an sp or t t o co m e ba ck th is si de to p ic k it up , t he n I s ay , " A ha le t m e go to th e cl in ic [h er e] to g et P rE P. " ( FG D , m al es , 2 0– 34  y ea rs o ld , c om m un ity m em be rs , fi sh in g vi lla ge ) AIDS and Behavior 1 3 Table 6   Facilitators and barriers of PrEP uptake and adherence at the community level Theme Timing Illustrative quote Facilitators Ability to demonstrate HIV-negative serostatus to others Before Every time someone scorns you over ARVs, you die a little inside. So most people hide [ART use] for that reason, while for PrEP, it is not scary because you swallow it while you are healthy. You can even come from the health center and show off your receipt to people. (IDI, female, 33 years old, sex worker) Observation of PrEP efficacy from peer experiences Before He [fisherman] is already prepared since he took his medicine [PrEP] and it functions properly, thus he is not worried of anything because he is protected. (IDI, female, 22 years old, sex worker) Community trust in providers and ancillary PrEP imple- mentation staff Both First, the service providers working on PrEP are good people. They explain to you and finally make your own decision.You first go for HIV testing. If you are diagnosed as HIV negative, then you are eligible to receive PrEP medicine. (IDI, female, 26 years old, discordant couple, mainland, remaining on PrEP but non-adherent) Peers make reminders (e.g. to consume daily pill, to pick up refills) Both PrEP medicine is the first item I put in my wallet before I leave home. Sometimes I leave my workplace very late and yet I am supposed to take my medicine. My PrEP companion can also remind me about taking my medicine through phone call. This is how I can take my medicine on time. (IDI, female, 26 years old, sex worker, mainland, remaining on PrEP and adherent) Awareness of living in HIV high-risk community After By mere fact that most people in this community are HIV positive, it makes it easier for PrEP users take their medicine every day. An example is announcing vaccina- tion among people to prevent against getting infected with Cholera disease. I cannot fail to get vaccinated if some people in my community are already suffering from cholera disease. I cannot hesitate to go for this vaccination. After all, I will fear getting the same disease. (IDI, male, 31 years old, fisherman, fishing village, remaining on PrEP but non-adherent) Trust that PrEP is protective against HIV After I realized that I had many chances of getting infected, yet there was medicine that could reduce at the risk. Hence, I decided to participate in the PrEP program. The way we live here, you know there are many women here. There are many places of having fun and you can have sex with dif- ferent women. For me, I said that I cannot allow a woman to destroy my life because no woman can stay here with only one man. The reason why I stuck on this medicine, I could see many of my colleagues I grew up with taking HIV medicine. I said that we have the same behavior; if I am not yet infected, why do I not try and protect myself. (IDI, male, 28 years old, fisherman, remaining on PrEP and adherent) Support/counselling from experienced users to use/refill PrEP or to manage side effects After They advise you that you can do everything you want but you should not forget taking your medicine. So, my col- leagues advise me to take my medicine especially when I am travelling to work somewhere far from here. (IDI, female, 28 years old, sex worker, mainland, remaining on PrEP and adherent) Drug sharing (borrowing) After If I am stuck, I can borrow some tablets from a colleague and I take. That is how my colleagues support me. There is a time we move far, when some of them forgot the drugs or it got finished on the way, but you use the medicine of a colleague who still has some tablets. (IDI, female, 28 years old, sex worker, fishing village, remaining on PrEP and adherent) AIDS and Behavior 1 3 demonstrating its HIV prevention efficacy to their peers. However, after rollout, these facilitating factors of PrEP uptake were not mentioned. Important facilitators for uptake and adherence men- tioned consistently before and after program rollout included community trust in PrEP providers and peers who provide reminders to take and to refill PrEP. After PrEP program rollout, knowledge of living in a high-HIV-risk community and trusting PrEP’s protec- tive effects were deemed important to facilitate uptake. Table 6   (continued) Theme Timing Illustrative quote Barriers Fear of stigma because PrEP is mistaken for ART​ Both The difference between PrEP and ARVs is very small. They are both taken on daily basis, the providers are the same, the facilities where we pick them from are the same. It is very easy for one to say, "That person is lying that he is on PrEP. He is on ARVs." There is no way you can explain the difference. (IDI, male, 44 years old, fisherman) Fear of stigma because PrEP users could be viewed as hav- ing multiple sexual partners, being promiscuous, or being a sex worker Both He can say that you are a sex worker. He might ask you the reason why you take that medicine if you are not infected. So, your partner might think that you are a sex worker. (FGD, females, 15–19 years old, community members, mainland) Fear that PrEP usage may increase STI prevalence After The problem with PrEP is that the moment you take it you are protected, but the problem you can get afterward is get- ting sexually transmitted diseases. (IDI, female, 39 years old, sex worker, mainland, remaining on PrEP and adher- ent) Negative remarks or discouragement from peers After Someone could take it and stop it because of people’s words. They lost interest because of statements such as: Why do you take it when you are not sick? What will you take in case you get infected? So, some people threw it away, whereas others stopped it completely. (IDI, male, 28 years old, fisherman, remaining on PrEP and adherent) Fig. 1   Key facilitators and barriers to PrEP uptake and adherence before and after PrEP rollout, by socio-ecological model level. Key: + facilita- tors, − barriers AIDS and Behavior 1 3 Counseling from experienced PrEP users was considered an important facilitator of adherence, particularly as they could give advice on how to manage the PrEP side effects as well as provide reminders and share/borrow drugs when needed. However, both before and after PrEP rollout, stigmatiz- ing associations of PrEP use with promiscuity and sex work were common obstacles to PrEP uptake and adherence. Participants worried that being seen at a PrEP clinic would implicate them in sex work, acting as a barrier to both uptake and adherence. After rollout, other barriers to PrEP emerged. Participants worried that community members could mistake PrEP for ART and assume that PrEP clients were HIV-positive; for example, one fisherman stated, "The difference between PrEP and ART is very small. They are both taken on daily basis, the providers are the same, the facilities where we pick them from are the same." Others raised concerns around risk compensation, including fear of an increase in other sexu- ally transmitted infections (STIs) due to decreased condom use and increased risky sexual behaviors. Negative remarks and discouragement from peers regarding PrEP use after program rollout also hindered uptake and adherence. Discussion Supporting earlier quantitative assessments of the RHSP PrEP pilot program, this qualitative study conducted in high-HIV-burden fishing communities and trading centers in south-central Uganda before and after PrEP rollout found that HIV-serodiscordant couples were strongly motivated to initiate and adhere to PrEP, while persons in occupations with high mobility and erratic schedules like sex workers and fishermen reported challenges to adherence. We found no indication that people discontinued PrEP because they perceived decreased risk and less need for PrEP. Rather, side effects, access-related issues (e.g. work-related travel), and stigma were the primary drivers of discontinuation. We identified several facilitators for PrEP use. Support from partners, family members, peers, and colleagues were mentioned as important for adherence: these relationships helped with reminders, picking up refills, and sharing/bor- rowing/lending pills. Disclosure of PrEP use in these rela- tionships may facilitate adherence. Similar findings have been reported among female sex workers in Kenya [33]. The RHSP PrEP program provided support and counselling from experienced PrEP users, which participants particu- larly appreciated and perceived as the most reliable source of counselling. Similarly, adolescent girls and young women in Zimbabwe and South Africa who felt empowered to proac- tively discuss PrEP in their communities found that becom- ing a "community PrEP ambassador" improved their own ability to take PrEP and encourage others to use PrEP [34]. PrEP pill sharing has been previously reported among men who have sex with men in the United States [35]. In Rakai, we have previously identified ART sharing among people living with HIV, which was similarly facilitated by disclo- sure and often seen in professional networks (such as among sex workers) [36]. As we saw with ART sharing, PrEP shar- ing post-rollout was perceived to improve adherence, in con- trast to pre-rollout concerns that pill sharing would be a bar- rier to adherence. We are currently studying ART diversion in more depth in this setting (R21AI145682) and recom- mend future monitoring of PrEP diversion as PrEP becomes more widely available in Uganda and similar settings. Several logistical concerns mentioned prior to PrEP roll- out, by both community members and providers, were suc- cessfully addressed after program initiation, such as unclear guidelines for PrEP eligibility and counseling, unskilled vol- unteers distributing PrEP, price-gouging, long wait times, and limited clinic hours. Other more structural program- matic barriers remained, including distance to PrEP clinics and supply shortages. More flexible PrEP refill schedules and community-based distribution sites may resolve some of these issues. Despite accelerated rollout timelines, the RHSP PrEP program’s health education successfully established trust in PrEP’s effectiveness and heightened participants’ awareness of HIV transmission in their communities. Pro- grams should strengthen health education efforts to build trust while conveying accurate information to potential PrEP beneficiaries. Stigma and social harms were a salient barrier to PrEP uptake and adherence: PrEP use could signal stigmatized behaviors like infidelity, promiscuity, or sex work. Addi- tionally, intentional or inadvertent disclosure of PrEP use was linked to adverse consequences, including gender-based violence. Such stigma was a primary driver of PrEP discon- tinuation. Program implementers will need to address these issues and provide support as needed. It is critical to com- municate that PrEP is not only for those engaging in risky sexual behavior, but rather an effective prevention tool in communities with high HIV burdens. Community-level de- stigmatization and normalization of PrEP use could facilitate uptake and adherence. An additional source of stigma was that the locations for PrEP refills were the same as where people living with HIV received ART, so observers could mistakenly identify PrEP users as HIV-positive, as occurred in the VOICE-C study in South Africa.[37] Moreover, PrEP pills are similar in appearance to ART. Dispensing PrEP in separate locations could mitigate these stigmatizing perceptions. Online and mobile modalities for PrEP prescriptions may also be useful [38]. As suggested from other qualitative studies, rebrand- ing with clear messaging and packaging to distinguish PrEP from ART could also cognitively clarify distinctions AIDS and Behavior 1 3 between PrEP and ART as a tool of destigmatization [17, 39]. Female sex workers viewed PrEP as beneficial: it pre- vented HIV and enabled them to have fewer clients while earning the same income since they could charge a higher price for condomless sex, although less frequent condom use could increase the risk of HIV and other STIs as well as unwanted pregnancies. Some expressed concerns that behavioral disinhibition (e.g. decreased condom use) could increase STI prevalence, as reported in other studies of PrEP users [40]. Monitoring STI incidence, unwanted pregnan- cies, impact on women’s empowerment, risk of violence and implementing behavioral interventions as needed to manage risk compensation will be crucial in PrEP programs. This qualitative study had several strengths. This is among the first studies to examine dynamics of PrEP usage in fishing and nearby communities. We gathered data from a large and diverse sample of participants, including persons at high risk of HIV (pre-rollout), clients at various stages of the PrEP care continuum, and service providers. We tri- angulated our findings by using IDIs and FGDs before and after program rollout, allowing us to assess whether poten- tial challenges were addressed by the RHSP PrEP program or did not occur as initially hypothesized. However, a key limitation is that this qualitative work was initially designed as two separate qualitative studies with IDIs and FGDs con- ducted among different participants at different locations at different times, so these observations may be not be directly comparable. Conclusions In conclusion, we found that the RHSP PrEP program addressed many pre-rollout concerns. However, barriers remain, especially related to stigma. Centering successful PrEP users as opinion leaders in communication efforts and provision of PrEP services outside ART clinics may promote uptake and adherence by tackling fears, rumors, and stigma. The RSHP PrEP program could be strengthened by provid- ing several delivery and refill modes to facilitate continua- tion among highly mobile populations such as truck drivers, sex workers, and fishermen. Acknowledgements  We would like to thank our RHSP Social and Behavioral Science team who collected this qualitative data: Charles Ssekyawa, Dauda Isabirye, Aminah Nambuusi, Rosette Nakubulwa, and Ann Linda Namuddu. We appreciate Grace Mongo Bua who con- tributed to qualitative coding of several transcripts during data analy- sis. We also thank all study participants who graciously shared their time, thoughts, and experiences. We acknowledge research grant fund- ing support from the US National Institute of Mental Health, the US National Institute of Allergy and Infectious Diseases, the US National Institutes of Health Fogarty International Center, the JHU Center for AIDS Research, The Swedish Physicians Against AIDS Research Foundation, and the Division of Intramural Research at the US National Institute of Allergy and Infectious Diseases. We also acknowledge the United States President’s Emergency Program for AIDS Relief (PEP- FAR) through Centers for Disease Control and Prevention (CDC) which supports the provision of pre-exposure prophylaxis to Ugandans in the study region. Author contributions  All authors contributed to the study conception and design. Field guide preparation was led by CEK, PTY, JGR, SS, and AME, with feedback from all authors. Data collection was led by WD and NN. Data analysis was performed by WD, SS, PTY, JGR, JJ, NN, AME, and CEK. Data synthesis was led by WD, PTY, and CEK, with help from co-authors. The first draft of the manuscript was written by WD, SS, and PTY. All authors reviewed and commented on previous versions of the manuscript. All authors read and approved the final manuscript. Funding  This research was supported by the US National Insti- tute of Mental Health (R01MH090173, R01MH107275), the US National Institute of Allergy and Infectious Diseases (R01AI143333), the US National Institutes of Health Fogarty International Center (D43TW010557), the JHU Center for AIDS Research (P30AI094189), the Swedish Physicians Against AIDS Research Foundation, and in part by the Division of Intramural Research at the US National Institute of Allergy and Infectious Diseases. The funders played no role in data collection, interpretation, or reporting. Data Availability  Available upon request to the corresponding author. Declarations  Conflict of interest  The authors declare that they have no conflicts of interest. 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Publisher’s Note  Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Qualitative Assessment of Barriers and Facilitators of PrEP Use Before and After Rollout of a PrEP Program for Priority Populations in South-central Uganda Abstract Resumen Introduction Methods The RHSP PrEP Program Data Collection Analysis Results Interpersonal (Dyadic) and Household Level Occupational Level (for Priority Populations) Program Level Community Level Discussion Conclusions Acknowledgements References