Oral PrEP pause and restart among Adolescent Girls and Young Women (AGYW) who initiated PrEP in an HIV prevention program in Kampala, Uganda. A qualitative study

Oral PrEP pause and restart among Adolescent Girls and Young Women (AGYW) who initiated PrEP in an HIV prevention program in Kampala, Uganda. 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A qualitative study Lazaaro Mujumbusi, Ivy Kayesu, Zam Nabalwanyi, Yunia Mayanja This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9237701/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 9 You are reading this latest preprint version Abstract Introduction: There is interest in PrEP uptake amongst young people at high risk of HIV. However, there is a significant decline in PrEP starting from three to six months of PrEP initiation, thus affecting PrEP persistence and continuation due to pausing and stopping of PrEP, with a few restarting it. Understanding why AGYW pauses PrEP use and what motivates the few to restart is critical for enhancing PrEP adherence and continuation. We explored pausing of PrEP and restarting it amongst AGYW in an HIV prevention program, in Kampala, Uganda, to inform future HIV health education interventions aimed at strengthening PrEP continuation. Methods Between November 2023 and March 2024, a qualitative study using 17 follow up interviews was carried out in Kampala, Uganda at month six of PrEP initiation. Participants were purposively sampled from AGYW aged 14 to 24-year-old who were HIV-negative and at high risk of acquiring HIV. Data were transcribed verbatim, coded in Nvivo 14, analyzed thematically using iterative categorization, and interpreted using the Health Belief Model. Findings: PrEP side effects were the major reason for missing and eventually pausing. Mobility of AGYW led to pausing PrEP, as some reported forgetting to travel with their pills, or travelling with inadequate pills, and lack of access to PrEP in new locations. Anxiety about using PrEP during pregnancy, having other new health conditions requiring long-term oral medication led to pausing of PrEP. The major reasons for PrEP restart were high HIV risk awareness, including having multiple sexual partners of unknown status. Inconsistent condom use such as refusing or removing condoms, and higher pay for condomless sex motivated restarting PrEP. Lastly, future marriage prospects and getting into long-term relationships motivated AGYW to remain HIV-negative through PrEP use. Conclusion Some AGYW who pause PrEP intend to restart in the future, and during the period of pausing PrEP, they mitigate HIV risk by using other HIV prevention methods. Therefore, tailored comprehensive HIV messages should be implemented addressing the challenges in the PrEP journey, emphasizing the importance of restarting PrEP and the use of other HIV prevention methods during the pause period to enhance HIV prevention persistence and continuation. PrEP pause PrEP restart PrEP stop PrEP adherence PrEP continuation PrEP persistence Adolsecent girls and Young Women AGYW Oral Pre-Exposure Prophylaxis PrEP Introduction Adolescent girls and young women (AGYW) in sub-Saharan Africa remain at high risk of acquiring Human Immunodeficiency Virus (HIV) [ 1 , 2 ], accounting for approximately 25% of new HIV infections globally, and they have large unmet needs for HIV prevention [ 3 ]. In 2021, approximately 250,000 AGYW were infected with HIV worldwide, six out of seven cases of HIV infections among adolescents (aged 15–19 years) in East and Southern Africa occurred among girls [ 4 ]. Seventy-seven per cent of AGYW who acquired HIV in 2023 live in sub-Saharan Africa (SSA), including almost two thirds (60%) in Eastern and Southern Africa [ 5 ]. AGYW are thrice as likely to be living with HIV than their male peers and they may acquire HIV five to seven years earlier than their male peers [ 6 , 7 ]. It is also estimated that AGYW in Uganda are thrice as likely to acquire HIV infection than young men [ 4 ]. In 2020, AGYW accounted for 29% of new HIV infections in Uganda [ 3 ]. Given this great burden of HIV in SSA, there is a need for prevention strategies to minimize the risks of HIV acquisition amongst AGYW. The World Health Organization (WHO) recommends oral pre-exposure prophylaxis (PrEP) to be offered as a prevention choice for people at substantial risk of HIV infection [ 8 – 10 ]. Oral PrEP is highly effective in preventing HIV infection if adherently used [ 1 , 11 ]. Thus, holding promise for HIV prevention among AGYW. Demonstration projects conducted from 2016 to 2019 in South Africa, Kenya and Zimbabwe have shown high PrEP uptake, with 93–95% of AGYW accepting PrEP the first time it is offered to them [ 2 , 12 ]. However, data show that only one-third of AGYW persist with PrEP use beyond three months, with as few as 6%-8% using PrEP beyond six months after initiation [ 2 , 12 , 13 ] and rapidly dropping adherence within the first six to twelve months [ 2 , 12 , 14 ], thus affecting PrEP persistence [ 2 , 12 , 13 , 15 ]. Various studies indicate that pausing of PrEP taking is related to AGYW experimenting a novel idea, concerns about PrEP side effects, not liking or being able to take daily pills, or reassessment of their sexual health goals, unsupportive partners, reduced HIV risk, change in relationship status, and PrEP access barriers [ 14 , 15 , 18 , 19 ]. However, some of these studies do not indicate whether those who discontinued PrEP later restarted. Evidence from some of the PrEP studies indicate that a small proportion of the AGYW who discontinue PrEP, later restart [ 16 , 17 ]. Mayanja et al. (2022) found low PrEP adherence and continuation among AGYW in Kampala, with 55 out of 81 PrEP starters discontinuing PrEP, and only four of them restarting [ 20 ]. Similarly, Baron et al. (2020) reported 3 participants willing to restart PrEP in South Africa, but, apart from the influence of club meetings, no other motivating factors were discussed that could have influenced PrEP restart [ 21 ]. Rao et al. (2023), in a larger South African study of 40,000 volunteers, found that 9% of female sex workers (FSWs) and 3% of AGYW re-initiated PrEP within a year, although reasons for re-initiation were not covered, it was assumed that FSWs' knowledge of PrEP played a role [ 22 ]. Ndimande-Khoza et al. (2023) further found familial influences to have impacted PrEP use and restart decisions, particularly among AGYW [ 23 ]. Whilst Several studies have explored PrEP uptake and adherence [ 24 – 29 ], there is limited data on PrEP use among AGYW at high risk who initiate and discontinue PrEP at least once but restart it, and what motivates them to restart PrEP. In this study, we therefore explored pausing of PrEP and restart among AGYW who initiated PrEP in an HIV prevention program in Kampala, Uganda. Understanding the motivations for restarting PrEP after discontinuation can inform health education practices, strengthen HIV prevention programs and improve PrEP adherence. Methods Study design, sampling and site A qualitative study using in-depth interviews (IDIs) was carried out between Nov 2023 and Mar 2024 among 14–24-year-old AGYW in Kampala, Uganda, who are at high risk of contracting HIV, to investigate pausing of PrEP and restart. The study was nested within a randomised controlled trial (RCT) aiming to assess the effect of peer support on oral PrEP uptake and adherence. The 394 RCT Participants were recruited from urban slums, enrolled at the AIDS Information Centre (AIC), Kampala and randomly assigned to health worker counselling (control) vs health worker counselling plus peer support (intervention). The criteria for selecting AGYW to take part in the RCT were: being HIV and Hepatitia B-negative, not pregnant, having never used PrEP and willingness to take part in the study. In this study, the findings we use are from follow-up IDIs with participants purposively selected based on age range (14–19 and 20–24), study arm (control and intervention groups) and having initiated PrEP. Data collection IDIs were conducted on 17 AGYW after six months in the RCT when the peer support intervention had ended. A semi-structured topic guide exploring various topics, including PrEP use and experiences was used by two trained female research assistants. Interviews were conducted in Luganda, the local language participants were familiar with, and they lasted approximately 1 hour. Interviews were audio-recorded using a voice recorder after gaining written informed consent. Interviews were conducted from the AIC clinic facility in private rooms. Data analysis and management Data was transcribed verbatim and translated by three trained social scientists. All the transcripts were checked and cleaned by IK before uploading them to a secure server at the MRC/UVRI&LSHTM with access to only the study staff. Data were coded both inductively and deductively [ 30 ] in NVivo 14 to allow the new codes to emerge during the coding process. Coding was done by IK, ZN, LM and YM. The coded data were analyzed thematically using iterative categorization [ 31 ]. An initial codebook was developed using four transcripts representing two transcripts each from control and intervention. All four transcripts were reviewed by the four-study staff to identify the initial codes; the coded transcripts were then compared across the different researchers to refine and agree on the codes, which were used to develop the draft codebook. This draft codebook was tried on four other transcripts, still using two scripts from control and intervention to test if the draft codebook suited other transcripts. This formed the final codebook that was exported in NVivo 14 and used by the team to code all the transcripts. After coding, data was exported to Word documents to do line-by-line analysis and summaries were created for each code [ 31 ]. Data were analyzed with a focus on PrEP knowledge, understanding, perceptions and experiences. Ethical considerations The study received ethical clearance from the Uganda Virus Research Institute ethics committee (ref: GC/127/918), the Uganda National Council for Science and Technology (ref: HS2490ES) and the London School of Hygiene and Tropical Medicine (ref: 28193). Participants took part in in-depth interviews after obtaining written informed consent. The information forms were read to the participants in Luganda, the most common language used in Kampala. For those who could not read and write, both the participants and an impartial witness identified by the participant had the consent forms read to them and if the participant agreed to participate, the witness wrote the participant's name, and the participant put a thumbprint on two copies, one for the study site and another kept by the participant. Interviews were conducted in private places comfortably for both the researcher and the participant to guarantee privacy. Pseudonyms and unique numbers were used instead of their names for anonymity. Health Belief Model The findings were interpreted using the Health Belief Model (HBM). HBM is a psychological framework for explaining and predicting health behaviors based on people's beliefs and attitudes. It was created in the 1950s by social psychologists Hochbaum, Rosenstock, and Kegels of the United States Public Health Service [ 32 – 34 ]. The paradigm was originally designed to explain why people did not engage in health prevention behaviors such as tuberculosis (TB) screening [ 33 ], but it has since been extended to a variety of health conditions such as HIV, cancer and vaccines uptake [ 35 – 38 ]. We used this model to categorize factors that influence pausing of PrEP and what motivates restarting it. The health belief model is built around 5 constructs that influence health behavior, which we applied to interpret the findings. The first construct is perceived susceptibility, referring to individuals' beliefs about their risk of developing a health condition, because the more vulnerable the person feels, the more likely they are to use preventive measures. In this study, we considered the individual perceived risk of AGYW to get HIV. The second construct is perceived severity, which relates to a personal belief about the seriousness of the condition and its potential consequences, which may result in taking an action, in this study we looked at participant perceived severity of HIV. The third construct, perceived benefits, refers to the effectiveness of the health action taken to avert the risk or severity of the disease; with this model, the belief that health action will be of benefit influences its use. In the context of this study, we considered how the perceived benefits of PrEP influenced restart. Fourth is the perceived barriers, which focuses on the perceived obstacles in adopting new health behavior such as financial, physical or emotional factors. For this study, we considered the factors that hinder PrEP use leading to pausing of PrEP. The fifth construct is the cues to action, which are the triggers that prompt an individual to take part in healthy behavior, and we considered the triggers that led AGYW to restart PrEP and the process involved in pausing it. Findings We start by providing the participant characteristics listed below in Table 1 . Table 1 Demographic characteristics of AGYW invited for Follow-Up In-depth interviews (N = 17) Characteristics Categories No. of Participants Age range 14–19 10 20–24 7 Relationship status Married 1 Single (Never married) 13 Single (separated) 3 Educational level Primary 9 Secondary 3 Tertiary 2 None 3 Occupation Student 1 Sex work 13 Entertainment 3 PrEP use after enrolment PrEP initiation 17 Paused PrEP at least once 15 Never paused PrEP at any point 2 Restarted PrEP 6 Hoped to restart 8 No hope to restart 1 Study arm Intervention 8 Control 9 We present the findings starting with pausing of PrEP and then restarting PrEP. Of the 17 AGYW who initiated PrEP, 15 of these participants paused PrEP at least once during the study. Participants discussed various reasons for pausing PrEP as discussed below in line with the constructs of the Health Belief Model. Perceived susceptibility: The perceived susceptibility that led to pausing of PrEP was the reduced HIV risk perception due to changes in sexual behavior. Those who were in a stable relationship or staying with their partner and not active in sex work during that period perceived themselves to be at a lower risk of getting HIV and thus paused/stopped PrEP. “I (Interviewer): How long did you take while taking PrEP? R (Respondent): Two months. I: Then you stopped? R: Yes. I: Why did you stop? R: Because I saw I was out of risk of getting HIV. I: You say you were out of risk of getting the virus, what were the indicators that you were out of risk? R: Because I was in relationship with one man and he’s the one they knew officially IDI01-14DEC2023-FU. Perceived severity: The perceived severity that made AGYW pause PrEP was linked to fears about the consequences of taking (and not taking) PrEP. The prevailing health conditions and concurrent use of other oral medication made some AGYW pause PrEP during periods of illness because they were already on prolonged oral medications and felt that adding the daily PrEP pill alongside these would mean taking too many tablets. “I have been using it but now I have decided to pause it a bit because I am taking a lot of drugs. The last time I was here, I was given drugs because I had an infection. When I went to the hospital for a scan, they found out that I had [condition x] and they also gave me a lot of drugs because I did not want to be injected. I realized that the drugs were for 2 months, and the infection had not yet cleared. When I thought of adding PrEP, I realized that the drugs were too many for my body to handle” IDI03-27NOV2023 –FU “I first paused taking them [PrEP] because I had fallen sick with a certain disease, but I thought…, I was wondering whether it was caused by the contraception I was using, or it was caused by PrEP. So, I was there (confused). I even thought I had cervical cancer”. IDI11-13DEC2023-FU In addition, some of the AGYW paused PrEP when they got pregnant due to fears that PrEP would affect their unborn baby. “I stopped taking PrEP from the time when I realized that I was pregnant. Then I stopped using it” IDI22-29NOV2023-FU. However, they had plans to resume after giving birth. “In my opinion after giving birth, I may start [PrEP] again” IDI01-14DEC2023-FU. Perceived barriers: The presence of side effects was the main reason for pausing PrEP. Participants reported getting side effects at the start such as headache, nausea, vomiting, body weakness and others, and decided to first pause or stop PrEP. “I swallowed at the inception of the study, the side effects were too much, and I first paused it, however, I restarted it”. IDI02 --27NOV2023-FU “I: Did you ever start using oral PrEP while in this study? R: Yes. I: How long did you take while swallowing these pills? R: Three months I: Three months and you said, “you later discontinued them”? R: Yes I: What influenced you to stop taking the pills? R: Side effects I: Side effects like what? R: I used to vomit; I experienced constant headache. I: You have said vomiting? R: And headache; when I couldn’t do my duties well, you are ever vomiting I: Okay, how long did the side effects take? R: They took long because whenever I would swallow them… I used to swallow them every morning and I would spend the whole day in bed”. IDI21-07DEC2023 The second barrier was mobility that caused pausing of PrEP. Some AGYW reported going to distant places either for formal work or sex work and visiting relatives/ friends; for some, their PrEP pills got finished before they returned to Kampala, and they missed their refill appointments as they had moved far from the study clinic. “I got a trip, I had a research whatever I was attending in [district X, 500 kilometers away from the study clinic]. I travelled with the pills though I didn’t realize that it would not be enough because I was unable to estimate the period, we were to spend there. So, the pills were used up, and I was very far from Kampala, and I had no access, so I decided to pause”. IDI03-27NOV2023 -FU “I: I want to know why you stopped. Because you said you started, so why did you stop using PrEP? R: I will not say that I got a problem with PrEP but it is just that we would have to go to some places, since we normally go and dance in those bars. So, when we went there, it was far and yet I had taken it [PrEP dose] and it got finished. I stayed there for long; I spent about 2 months there. By the time I got back here, my scheduled appointment date had passed IDI05-27NOV2023-FU In addition to the above, the AGYW reported being unable to access PrEP in the areas they moved to for formal work or sex work and this resulted into stopping/ pausing of PrEP. “I: So, when you started moving around, you stopped using it? R: Mm (yes). Because when I am that side (up country and islands), I cannot get the drugs you understand? It is difficult to get them…” IDI07-30JAN2024-FU This indicates PrEP access challenges in hard-to-reach areas of the country, which lead to pausing of PrEP hence affecting PrEP persistence. Financial constraints also caused AGYW to pause PrEP due to the lack of money to cater for transport to pick PrEP refills and the facilitation of meals required to take daily PrEP. Despite 15 participants pausing PrEP at least once, six participants restarted, while eight participants had hopes to restart. The motivations for PrEP restart and/ hope to restart were as below in line with the HBM constructs. Perceived susceptibility: High HIV risk perception was the major motivator for PrEP restart as most participants felt they were still at high risk of acquiring HIV due to the nature of their job (sex work), having many sexual partners of unknown HIV status, some of whom refused HIV testing and sometimes had sex while drunk. This high self-perceived risk motivated them to restart PrEP to prevent HIV infection. “What motivated me to restart PrEP is because I know my job that I do, it has issues with the sickness (HIV); so, I want to get that protection when every time I am safe so that I don’t get the virus (HIV) because I am still doing the job (sex work)”. IDI24-28NOV2023-FU “Because I have more than one person who I told you I’m in a relationship with and it is not like all of them allow to use [HIV prevention] methods. Some even refuse to go for blood testing”. IDI06–06DEC2023-FU Perceived benefits: The perceived benefits of restarting PrEP included some of the participants considering PrEP to be a better method of controlling HIV because it not only offered protection but was also more reliable, as compared to other methods such as condoms and HIV testing. Oral PrEP was reported to have reduced anxiety while having sex. “I: Let me ask, in the future, would you want to restart using PrEP? R: Mm (yes)! It is not bad by the way. Even though condoms, okay all of them are helpful, but PrEP helps so much like 100%. Because a condom can burst along with other things which is not the case with PrEP”. IDI07-30JAN2024-FU In addition, participants reported uncertainties around other HIV prevention methods such as the option of condom use they had used during the period they paused PrEP. They reported that some men did not like to use condoms, yet such clients offered a lot of money for condom-less sex. This motivated them to have hopes or restarting PrEP to earn more money from condom-less sex. It was reported that some clients accepted using condoms but removed them during sexual intercourse. Some AGYW had fears that condoms could burst during sexual intercourse and also argued that condoms not being available at their workplaces sometimes would put them at risk. R: I will restart [PrEP]. I: Why do you expect to restart it? R: “Because I also fear HIV, I fear it and you should know that with the other method [condom], it is not that every time the condom can be available. Do you see it? So, you would be at risk if it is not available or if it bursts in the process, you see that you would have gotten HIV”. IDI11-13DEC2023-FU Other perceived benefit was the future marriage prospects that motivated AGYW to restart PrEP because they wanted to keep themselves healthy so that in future, when they got a marriage partner, they would navigate HIV testing without anxiety. “I: So, would you like to restart PrEP in the future? R: Yes. I: What would influence you to use PrEP in the future? R: Right now, I do not expect that I am going to leave this job because it gives me a lot of money. So that means that, since I mind about my health, I don’t want to get sick even though I am sex worker, I have to swallow PrEP because it will help me in the future, in case I am to leave sex work I can get a man, but that is when I am healthy” IDI07-30JAN2024-FU Cues to action: AGYW made some actions before and during pausing of PrEP. Firstly, a few of them sought medical advice from the healthcare workers consulting for medical advice before they paused. Some of them received health worker counselling that enabled them to continue taking it after being informed that the side effects were temporary. “I have been with the health worker and asked her for a talk or counseling session before I make a final decision, though I had thought of pausing PrEP first, I wanted to get guidance from the health worker…. I wanted medical advice from the health worker who understands this”. IDI03-27NOV2023 -FU. “I had ever...I used them but the reason I quit them was just as I told you [side effects], but the health worker explained to me that it is temporary and that's what will influence me to get back on them” . IDI08-01DEC-2023-FU It is important to note that, most of these girls, even after pausing PrEP, they substituted it with other HIV prevention methods such as condoms or regular testing, indicating continued risk mitigation measures while not on PrEP. “I: So, when you started moving around, you stopped using it [PrEP}? R: Because when I am that side, I cannot get the drugs you understand? It is difficult to get them that is why I was using condoms, because they are everywhere. You can find them everywhere” IDI07-30JAN2024-FU Some girls were motivated to think about restarting PrEP due to peer/group influence because they were the only ones not using PrEP among their peers. One girl who had paused taking PrEP felt inconvenienced carrying boxes of condoms yet her friends who continued taking PrEP were not carrying them. I: Okay. So now, they take PrEP? R: They take; I am the only one who is not taking. I: Okay. Is there a way it makes you feel when you see your friends taking PrEP? R: Yes, because you be moving around with a box of condoms yet for them, they go free, when they don't have anything. It somehow makes me feel bad. I: Okay. Now you feel okay, you want to come back and get PrEP? R: Yes. I am about to come back and get it again. IDI05-27NOV2023-FU Discussion In this study, we used qualitative interviews to explore pausing of PrEP, PrEP restart amongst AGYW mainly engaged in sex work, who initiated PrEP in an HIV prevention program in Kampala, Uganda. We mainly found that AGYW who paused PrEP restarted at some point and others had hopes to restart later. The main reasons for pausing of PrEP were the perceived barriers such as presence of side effects or perceived susceptibility such as the perceived reduced HIV risk, while PrEP restart or intentions to restart were mainly motivated by the perceived severity such as high HIV risk perception. However, most importantly, during the period they paused PrEP, they used other HIV risk mitigation measures such as condom use. The study's findings are interpreted in light of the Health Belief Model [ 35 , 36 ], which helps to explain AGYW decisions to pause, or restart PrEP use depending on their perceived health risks and benefits. Perceived barriers, such as side effects, mobility, PrEP access during travel far away from the study clinic, and financial constraints, were barriers to continuing PrEP use. The perceived susceptibility was also evident when some AGYW in stable relationships or with less engagement in sex work had lower perceived risk of getting HIV, resulting in a pause on PrEP. On the other hand, the high perceived HIV risk among others who continued to engage in sex work and had multiple partners of unknow HIV status motivated PrEP restart. These decisions are consistent with the model's premise that people act based on their beliefs about the likelihood of developing an illness [ 32 ] making it important to understand peoples beliefs about an intervention such as taking oral PrEP for it to succeed. In this study, we found that side effects were the main reason for pausing of PrEP. This is similar to various PrEP adherence studies conducted in Uganda [ 20 , 24 , 25 , 39 ] and elsewhere in East Africa [ 18 ] and South Africa [ 15 , 40 ]. What differentiates our study is the observation that some AGYW consulted healthcare workers or counselors before deciding to pause PrEP. During these discussions, some AGYW received explanations about the temporary nature of the side effects, leading them to continue PrEP, while others opted to pause but expressed intentions to restart later. Our study’s contribution is supported by the recommendation of Reddy et al., (2023) where they stress that challenges experienced during PrEP use could be managed by the provision of effective counselling and management of side effects [ 40 ]. Indeed, those in our study who sought counselling planned to continue or continued with PrEP after pausing. The few individuals hoping to restart PrEP even after side effects implies that AGYW should be encouraged to always consult with the healthcare workers, before choosing to pause or stop. This is more likely to lead to safe pauses, increase PrEP restart, and continuation, hence adherence. The mobility of the AGYW for sex work or other work away from their residences also resulted into pausing of PrEP. This concurs with other studies that found mobility of participants to be affecting PrEP adherence in Uganda [ 24 ], in Namibia [ 41 ] and elsewhere in South Africa [ 14 ]. This necessitates the need for long-acting PrEP like lenacapavir which can be offered twice a year and can alleviate challenges of AGYW missing PrEP refills or failing to find PrEP providers due to mobility. Rossue et al (2021) in South Africa implemented a successful community based mobile clinic to provide PrEP to AGYW, however, mobility of AGYW was a challenge as the mobile clinic van would be in their communities when they were away [ 42 ]. Like in our study, this indicates mobility as a big challenge to adherence and points out the need for making PrEP options including long-acting injectable PrEP widely available and accessible to overcome some of these challenges. Related to mobility, PrEP access has been identified as a challenge in achieving PrEP adherence [ 42 ]. Some of the AGYW in our study had PrEP access challenges in the areas they moved to for sex work. Therefore, in addition to providing long-term injectable PrEP, provision of PrEP in hard-to-reach areas that are frequented by young women selling sex can also help to solve access challenges to mobile AGYW. Butler et al., [ 43 ] offered remote PrEP delivery services during COVID-19 through placing PrEP in local private pharmacies, community based organizations and university halls of residence. Similar models could be tested and adopted or tailored to different contexts to ensure availability of PrEP in local pharmacies/clinics in the hard-to-reach areas to improve access challenges. The World Health Organization (WHO) recommends offering PrEP to pregnant and breastfeeding women who are at high risk of acquiring HIV [ 8 ]. In our study, some participants paused PrEP upon conceiving due to concerns over possible harm to their unborn babies. Despite participants receiving information that oral PrEP could be used during pregnancy, this perception among participants could be attributed to the common knowledge that some drugs are dangerous to the fetus during pregnancy [ 39 ]. This finding is similar to other studies that found anxiety among participants in taking PrEP while pregnant [ 39 ]. This necessitates the need for robust health education by the healthcare workers, counsellors and peer educators addressing the fears around the unborn baby for pregnant mothers and lactating mothers as well. In other studies, such as a study conducted amongst pregnant women in South Africa, a large number of women were taking PrEP while pregnant and continued with sex work for up to 5 months and paused PrEP and sex work due to perceived dangers of having sex with multiple partners during pregnancy [ 39 ]. Our participants having reported fear of taking PrEP while pregnant could imply that, even after pausing PrEP, they could have continued with sex work while pregnant, and this would lead to a risk of mother-baby transmission in case they acquired HIV infection during that period. A woman’s risk of HIV acquisition doubles during pregnancy and breastfeeding [ 44 , 45 ]. Therefore, even though it is widely perceived and known that women do not take some medications in early pregnancy, information about the proven safety of oral PrEP during pregnancy must be incorporated in PrEP messages to encourage PrEP continuation among those who become pregnant while taking PrEP to prevent HIV acquisition and onward mother-to-baby transmission. The AGYW in our study paused PrEP while having other health conditions or taking other medications, as it was considered burdensome to take PrEP alongside other medications. This is similar to other studies in Australia where participants paused PrEP while taking other medications due to failure to manage schedules for taking both medications [ 46 ]. This necessitates the need to include the safety of taking PrEP alongside other medications in health education programs and counselling to foster PrEP persistence during such situations. Our study also found reduced HIV risk perception as a reason for pausing PrEP. This is similar to other studies that found AGYW and FSWs pausing PrEP due to perceived low HIV risk [ 15 , 18 , 47 , 48 , 51 ]. This indicates changes in risk perception or risk re-evaluation. The baseline interviews of our study indicated all participants perceived themselves to be at high risk, but over time the risk perception changed based on sexual behavior. This is not only unique to our study, but similar with other findings where risk re-evaluation occurred due to factors such as changes in relationships and getting pregnant, which resulted into pausing sex work [ 14 , 18 , 39 ]. Risk perception is very crucial in PrEP uptake and continuation. PrEP uptake in this population is influenced by high HIV perceived risk [ 25 , 49 , 50 ]. However, what is unique with our study, we found risk mitigation amongst AGYW who pause PrEP because of reduced risk perception. They replaced PrEP with other HIV prevention methods such as condom use or HIV testing, especially those who mentioned reducing sexual partners. This implies PrEP education and HIV prevention programs should also emphasize and promote other HIV prevention methods alongside PrEP, this would give AGYW other options in case they paused PrEP due to intentional or unintentional factors. Whereas to some AGYW, reduced HIV risk perception resulted into pausing of PrEP, high HIV risk perception was the major factor that motivated PrEP restart, consistent with findings from other studies in East and Southern Africa [ 14 , 40 ]. This indicates the importance of HIV risk re-evaluation on PrEP uptake, thus necessitating the need to have programs that make AGYW aware of their HIV risk. A study in South Africa recommends the use of HIV risk assessment tools to make AGYW recognize their HIV risk [ 40 ] because poor assessment of risk may lead to poor use of PrEP [ 23 ]. These risk assessment tools could be adopted at community levels as well as clinical levels or incorporated into sexual and reproductive health services to make girls aware of their HIV risk. Additionally, peer support groups should integrate discussions on HIV risk so that AGYW can learn from peers’ experiences and better assess their own vulnerability. The self-awareness of HIV risk can result in PrEP initiation and continuation after pausing. Opposed to our study findings, a study in South Africa [ 51 ] found that the fear of being scolded by health care workers for missing refill resulted into fear to return for refill despite South Africa having good adolescent friendly services, however, it’s important to note that in this South African study, the fear reported is just perceived but not experienced. In our study, however, we did not receive cases of AGYW fearing to approach healthcare workers, this could have been the reason why AGYW consulted them before pausing of PrEP. The study team were well trained and had experience working with AGYW in previous HIV prevention studies, hence provided a friendly environment. Thus AFYW should be encouraged to always make consultations without fear. Study strength and limitations We used in-depth interviews among purposively selected participants (PrEP starters) which offered rich and deeper insights about PrEP experiences, pause and restart. However, as with qualitative interviews, these findings may not be generalized to all populations but based on the depths of the discussion with the AGYW interviewed on pausing of PrEP and restart, the findings can be transferable to AGYW in similar settings and social economic demographics such as AGYW who practice sex work and dealing in hospitality and entertainment. Data reported in this study is based on the individuals who were interviewed after six months in the study, whereas this provided reasons for pausing PrEP and restarting, there is a need for understanding pausing of PrEP and restarting in longitudinal studies such as after one year or two years and beyond to examine the changes in PrEP journey over a long period. This would help to capture PrEP persistence amongst those who restarted it and compare factors based on duration such as six months, 12 months and above. This study does not report data on the persistence of those who restarted which would be picked from following up those who restarted over a certain period in a longitudinal study. Conclusion The findings suggest that some of the AGYW who pause PrEP typically do not stop entirely but rather interrupt their usage due to specific challenges encountered during their PrEP journey while maintaining hopes of restarting in the future. The study also highlights that AGYW often engage in risk mitigation strategies after pausing or discontinuing PrEP. Therefore, comprehensive tailored health education messages should be given, emphasizing the importance of resuming PrEP when challenges arise and promoting the use of alternative HIV prevention methods during periods of interruption e.g., pill burden due to taking oral medications for other illnesses and improving accessibility to long-acting injectable PrEP for highly mobile AGYW. Our findings further suggest that effective health worker support, and targeted education, particularly around creating risk awareness, managing side effects and addressing concerns during pregnancy, can significantly enhance oral PrEP continuation and restart rates among AGYW whose preferred HIV prevention method is the oral pill. Abbreviations PrEP: Oral Pre-Exposure Prophylaxis AIC: Aids Information Centre I: Interviewer R: Respondent WHO: World Health Organization AGYW: Adolescent Girls and Young Women HIV: Human Immunodeficiency Virus SSA: Sub-Saharan Africa TDF: Tenofovir Disoproxil Fumarate RCT: Randomised Controlled Trial HBM: Health Belief Model MRC/UVRI & LSHTM: Medical Research Council/ Uganda Virus Research Institute and London School of Hygiene and Tropical Medicine Uganda Research Unit IDI: In-depth interview FSWs Female Sex Workers Declarations Ethics approval and consent to participate The study received ethical approvals, and the participants also provided written informed consent. Consent for publication The participants consented for anonymized information to be published. Competing interests The authors declare no competing interests. Funding This project was part of the second European & Developing Countries Clinical Trials Partnership (EDCTP2) program supported by the European Union (CSA2020NoE-3102). The contents of this manuscript are the responsibility of the authors and do not necessarily state or reflect those of EDCTP. Author Contribution YM conceptualized and designed the study, developed the data collection forms, and was the principal investigator of the project. IK and ZN collected data. IK, ZN, LM did data transcription and translation, LM planned the analysis process (Iterative Categorization) and led the draft of the manuscript. IK led the analysis process, filling all transcripts on a secure drive and anonymizing them. IK, YM, ZN, and LM participated in developing the codebook, coding and iterative categorization. All the authors iteratively provided feedback and reviewed the manuscript. Acknowledgement The authors would like to acknowledge the study participants, AIDS Information Centre (AIC), peer educators, and the entire research team including Catherine Nakirijja, Hellen Kalungi, Zidah Najjuma, and Rachel Wanyana. We also acknowledge Dr Praise Adeyamo for her feedback and editing the manuscript. Data Availability The data used for the analysis of this project can be accessed through an email request to [ [email protected] ](mailto: [email protected] ) . . References Baeten JM, et al. Antiretroviral prophylaxis for HIV prevention in heterosexual men and women. N Engl J Med. 2012;367(5):399–410. Celum C, et al. PrEP uptake, persistence, adherence, and effect of retrospective drug level feedback on PrEP adherence among young women in southern Africa: results from HPTN 082, a randomized controlled trial. PLoS Med. 2021;18(6):e1003670. UNAIDS. Global AIDS update. Miles to go: closing gaps, breaking barriers, righting injustices. Geneva . 2018. UNAIDS. UNAIDS_FactSheet_en. DATA Sheet, AIDS Fact. Available online: https://www.unaids.org/sites/default/files/media_asset , 2021. (accessed on 7 April 2022). UNAIDS,2024 Global Aids update. Thematic briefing note. HIV and Adolescent Girls and Young women https://www.unaids.org/sites/default/files/media_asset/2024-unaids-global-aids-update-adolescent-girls-young-women_en.pdf Zuma K, et al. New insights into HIV epidemic in South Africa: key findings from the National HIV Prevalence, Incidence and Behaviour Survey, 2012. Afr J AIDS Res. 2016;15(1):67–75. Dellar RC, Dlamini S, Karim QA. Adolescent girls and young women: key populations for HIV epidemic control. J Int AIDS Soc. 2015;18:19408. WHO. World Health Organization. WHO Technical Brief: Preventing HIV during pregnancy and breastfeeding in the context of pre-exposure prophylaxis (PrEP). . 2017. WHO World Health Organization. Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection.. 2016. second edition. WHO. World Health Organisation. Guideline on when to start antiretroviral therapy and on pre-exposure prophylaxis for HIV. (2015). . 2015. Thigpen MC, et al. Antiretroviral preexposure prophylaxis for heterosexual HIV transmission in Botswana. N Engl J Med. 2012;367(5):423–34. Celum CL, et al. Incentives conditioned on tenofovir levels to support PrEP adherence among young South African women: a randomized trial. J Int AIDS Soc. 2020;23(11):e25636. De Tapsoba D. Persistence of oral pre-exposure prophylaxis (PrEP) among adolescent girls and young women initiating PrEP for HIV prevention in Kenya. AIDS Care. 2021;33(6):712–20. Rousseau E, et al. Adolescent girls and young women’s PrEP-user journey during an implementation science study in South Africa and Kenya. PLoS ONE. 2021;16(10):e0258542. Celum CL, et al. HIV pre-exposure prophylaxis for adolescent girls and young women in Africa: from efficacy trials to delivery. J Int AIDS Soc. 2019;22:e25298. Rousseau-Jemwa E et al. Early persistence of HIV pre-exposure prophylaxis (PrEP) in African adolescent girls and young women (AGYW) from Kenya and South Africa . in AIDS Research and Human Retroviruses . 2018. Mary Ann Liebert, inc 140 Huguenot Street, 3rd fl, New Rochelle, NY 10801 USA. Khadka N, et al. Evaluating the use of oral pre-exposure prophylaxis among pregnant and postpartum adolescent girls and young women in Cape Town, South Africa. Front Reproductive Health. 2023;5:1224474. Camlin CS, et al. Understanding demand for PrEP and early experiences of PrEP use among young adults in rural Kenya and Uganda: a qualitative study. AIDS Behav. 2020;24:2149–62. Gombe MM, et al. Key barriers and enablers associated with uptake and continuation of oral pre-exposure prophylaxis (PrEP) in the public sector in Zimbabwe: qualitative perspectives of general population clients at high risk for HIV. PLoS ONE. 2020;15(1):e0227632. Mayanja Y, et al. Oral pre-exposure prophylaxis preference, uptake, adherence and continuation among adolescent girls and young women in Kampala, Uganda: a prospective cohort study. J Int AIDS Soc. 2022;25(5):e25909. Baron D et al. You talk about problems until you feel free: South African adolescent and young women’s narratives on the value of HIV prevention peer support clubs. 2020. Rao A, et al. Longitudinal patterns of initiation, persistence, and cycling on preexposure prophylaxis among female sex workers and adolescent girls and young women in South Africa. AIDS. 2023;37(6):977–86. Ndimande-Khoza MN, et al. Family influences on oral PrEP use among adolescent girls and young women in Kenya and South Africa. PLoS ONE. 2023;18(11):e0292529. Kayesu I, et al. Uptake of and adherence to oral pre-exposure prophylaxis among adolescent girls and young women at high risk of HIV-infection in Kampala, Uganda: a qualitative study of experiences, facilitators and barriers. BMC Womens Health. 2022;22(1):440. Nalukwago GK, et al. Adherence to oral HIV pre-exposure prophylaxis among female sex workers in Kampala, Uganda. Afr Health Sci. 2021;21(3):1048–58. Toledo L, et al. Knowledge, attitudes, and experiences of HIV pre-exposure prophylaxis (PrEP) trial participants in Botswana. World J AIDS. 2015;5(2):10. Amico KR, et al. Experiences with HPTN 067/ADAPT study-provided open-label PrEP among women in Cape Town: facilitators and barriers within a mutuality framework. AIDS Behav. 2017;21:1361–75. Van der Elst EM, et al. High acceptability of HIV pre-exposure prophylaxis but challenges in adherence and use: qualitative insights from a phase I trial of intermittent and daily PrEP in at-risk populations in Kenya. AIDS Behav. 2013;17:2162–72. Eakle R, et al. I am still negative: Female sex workers’ perspectives on uptake and use of daily pre-exposure prophylaxis for HIV prevention in South Africa. PLoS ONE. 2019;14(4):e0212271. Clarke V, Braun V. Thematic analysis. Encyclopedia of critical psychology. Springer; 2014. pp. 1947–52. Neale J. Iterative categorisation (IC)(part 2): interpreting qualitative data. Addiction. 2021;116(3):668–76. Maiman LA, Becker MH. The health belief model: Origins and correlates in psychological theory. Health Educ Monogr. 1974;2(4):336–53. Champion VL, Skinner CS. The health belief model. Health behavior and health education: Theory, research, and practice, 2008. 4: pp. 45–65. Abraham C, Sheeran P. The health belief model. Predicting health Behav. 2005;2(1):28–80. Tarkang EE, Zotor FB. Application of the health belief model (HBM) in HIV prevention: a literature review. Cent Afr J Public Health. 2015;1(1):1–8. Lin P, Simoni JM, Zemon V. The health belief model, sexual behaviors, and HIV risk among Taiwanese immigrants. Volume 17. AIDS Education & Prevention; 2005. pp. 469–83. 5. Ersin F, Bahar Z. Effect of health belief model and health promotion model on breast cancer early diagnosis behavior: a systematic review. Asian Pac J Cancer Prev. 2011;12(10):2555–62. Limbu YB, Gautam RK, Pham L. The health belief model applied to COVID-19 vaccine hesitancy: a systematic review. Vaccines. 2022;10(6):973. Joshi S, et al. PrEP uptake and persistence amongst HIV-negative women who exchange sex for money or commodities in Kampala, Uganda: a qualitative inquiry assessing the influence of pregnancy. PLOS global public health. 2023;3(6):e0000434. Reddy K, Palanee-Phillips T, Heffron R. Awareness of Heightened Sexual and Behavioral Vulnerability as a Trigger for PrEP Resumption Among Adolescent Girls and Young Women in East and Southern Africa. Curr HIV/AIDS Rep. 2023;20(6):333–44. Barnabee G, et al. PrEP uptake and early persistence among adolescent girls and young women receiving services via community and hybrid community-clinic models in Namibia. PLoS ONE. 2023;18(8):e0289353. Rousseau E, et al. A community-based mobile clinic model delivering PrEP for HIV prevention to adolescent girls and young women in Cape Town, South Africa. BMC Health Serv Res. 2021;21(1):888. Butler V, et al. Implementing differentiated and integrated HIV prevention services for adolescent girls and young women: experiences from oral PrEP rollout in primary care services in South Africa. J Adolesc Health. 2023;73(6):S58–66. Chilaka VN, Konje JC. HIV in pregnancy–An update. Eur J Obstet Gynecol Reproductive Biology. 2021;256:484–91. Davey J. Risk perception and sex behaviour in pregnancy and breastfeeding in high HIV prevalence settings: programmatic implications for PrEP delivery. PLoS ONE. 2018;13(5):e0197143. Smith AK, et al. Dosing practices made mundane: Enacting HIV pre-exposure prophylaxis adherence in domestic routines. Sociol Health Illn. 2023;45(8):1747–64. Pintye J, et al. Influences on early discontinuation and persistence of daily oral PrEP use among Kenyan adolescent girls and young women: a qualitative evaluation from a PrEP implementation program. JAIDS J Acquir Immune Defic Syndr. 2021;86(4):e83–9. Koss CA, et al. Uptake, engagement, and adherence to pre-exposure prophylaxis offered after population HIV testing in rural Kenya and Uganda: 72-week interim analysis of observational data from the SEARCH study. lancet HIV. 2020;7(4):e249–61. Sila J, et al. High awareness, yet low uptake, of pre-exposure prophylaxis among adolescent girls and young women within family planning clinics in Kenya. AIDS Patient Care STDs. 2020;34(8):336–43. Hill LM, et al. HIV risk, risk perception, and PrEP interest among adolescent girls and young women in Lilongwe, Malawi: operationalizing the PrEP cascade. J Int AIDS Soc. 2020;23:e25502. De Vos L, et al. Factors that influence adolescent girls and young women's re-initiation or complete discontinuation from daily oral PrEP use: a qualitative study from Eastern Cape Province, South Africa. J Int AIDS Soc. 2023;26(9):e26175. 10.1002/jia2.26175 . PMID: 37758649; PMCID: PMC10533377. Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9237701","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":616131934,"identity":"83a9af24-8d30-4066-a27c-9ec7d547a9a7","order_by":0,"name":"Lazaaro Mujumbusi","email":"data:image/png;base64,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","orcid":"","institution":"Medical Research Council/ Uganda Virus Research Institute and London School of Hygiene and Tropical Medicine (MRC/UVRI \u0026 LSHTM) Uganda Research Unit.","correspondingAuthor":true,"prefix":"","firstName":"Lazaaro","middleName":"","lastName":"Mujumbusi","suffix":""},{"id":616131935,"identity":"6f65cc00-17bc-41f3-a376-06f985d3ef6d","order_by":1,"name":"Ivy Kayesu","email":"","orcid":"","institution":"Medical Research Council/ Uganda Virus Research Institute and London School of Hygiene and Tropical Medicine (MRC/UVRI \u0026 LSHTM) Uganda Research Unit.","correspondingAuthor":false,"prefix":"","firstName":"Ivy","middleName":"","lastName":"Kayesu","suffix":""},{"id":616131936,"identity":"27ddad8b-e876-4705-a861-b9365fa4a7e1","order_by":2,"name":"Zam Nabalwanyi","email":"","orcid":"","institution":"Medical Research Council/ Uganda Virus Research Institute and London School of Hygiene and Tropical Medicine (MRC/UVRI \u0026 LSHTM) Uganda Research Unit.","correspondingAuthor":false,"prefix":"","firstName":"Zam","middleName":"","lastName":"Nabalwanyi","suffix":""},{"id":616131937,"identity":"3a0d547c-bccb-4076-8c98-a82ded39f1d5","order_by":3,"name":"Yunia Mayanja","email":"","orcid":"","institution":"Medical Research Council/ Uganda Virus Research Institute and London School of Hygiene and Tropical Medicine (MRC/UVRI \u0026 LSHTM) Uganda Research Unit.","correspondingAuthor":false,"prefix":"","firstName":"Yunia","middleName":"","lastName":"Mayanja","suffix":""}],"badges":[],"createdAt":"2026-03-26 19:53:28","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9237701/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9237701/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":106093885,"identity":"1efb8625-cc73-40f9-a4ae-fb30c78e4a3d","added_by":"auto","created_at":"2026-04-03 11:39:50","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":620365,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9237701/v1/2c6d0fe7-510e-4ed7-a983-d6be6f13db26.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Oral PrEP pause and restart among Adolescent Girls and Young Women (AGYW) who initiated PrEP in an HIV prevention program in Kampala, Uganda. A qualitative study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eAdolescent girls and young women (AGYW) in sub-Saharan Africa remain at high risk of acquiring Human Immunodeficiency Virus (HIV) [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e], accounting for approximately 25% of new HIV infections globally, and they have large unmet needs for HIV prevention [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. In 2021, approximately 250,000 AGYW were infected with HIV worldwide, six out of seven cases of HIV infections among adolescents (aged 15\u0026ndash;19 years) in East and Southern Africa occurred among girls [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Seventy-seven per cent of AGYW who acquired HIV in 2023 live in sub-Saharan Africa (SSA), including almost two thirds (60%) in Eastern and Southern Africa [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. AGYW are thrice as likely to be living with HIV than their male peers and they may acquire HIV five to seven years earlier than their male peers [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. It is also estimated that AGYW in Uganda are thrice as likely to acquire HIV infection than young men [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. In 2020, AGYW accounted for 29% of new HIV infections in Uganda [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eGiven this great burden of HIV in SSA, there is a need for prevention strategies to minimize the risks of HIV acquisition amongst AGYW. The World Health Organization (WHO) recommends oral pre-exposure prophylaxis (PrEP) to be offered as a prevention choice for people at substantial risk of HIV infection [\u003cspan additionalcitationids=\"CR9\" citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Oral PrEP is highly effective in preventing HIV infection if adherently used [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Thus, holding promise for HIV prevention among AGYW. Demonstration projects conducted from 2016 to 2019 in South Africa, Kenya and Zimbabwe have shown high PrEP uptake, with 93\u0026ndash;95% of AGYW accepting PrEP the first time it is offered to them [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. However, data show that only one-third of AGYW persist with PrEP use beyond three months, with as few as 6%-8% using PrEP beyond six months after initiation [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e] and rapidly dropping adherence within the first six to twelve months [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e], thus affecting PrEP persistence [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Various studies indicate that pausing of PrEP taking is related to AGYW experimenting a novel idea, concerns about PrEP side effects, not liking or being able to take daily pills, or reassessment of their sexual health goals, unsupportive partners, reduced HIV risk, change in relationship status, and PrEP access barriers [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. However, some of these studies do not indicate whether those who discontinued PrEP later restarted.\u003c/p\u003e \u003cp\u003eEvidence from some of the PrEP studies indicate that a small proportion of the AGYW who discontinue PrEP, later restart [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Mayanja et al. (2022) found low PrEP adherence and continuation among AGYW in Kampala, with 55 out of 81 PrEP starters discontinuing PrEP, and only four of them restarting [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. Similarly, Baron et al. (2020) reported 3 participants willing to restart PrEP in South Africa, but, apart from the influence of club meetings, no other motivating factors were discussed that could have influenced PrEP restart [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Rao et al. (2023), in a larger South African study of 40,000 volunteers, found that 9% of female sex workers (FSWs) and 3% of AGYW re-initiated PrEP within a year, although reasons for re-initiation were not covered, it was assumed that FSWs' knowledge of PrEP played a role [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Ndimande-Khoza et al. (2023) further found familial influences to have impacted PrEP use and restart decisions, particularly among AGYW [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. Whilst Several studies have explored PrEP uptake and adherence [\u003cspan additionalcitationids=\"CR25 CR26 CR27 CR28\" citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e], there is limited data on PrEP use among AGYW at high risk who initiate and discontinue PrEP at least once but restart it, and what motivates them to restart PrEP. In this study, we therefore explored pausing of PrEP and restart among AGYW who initiated PrEP in an HIV prevention program in Kampala, Uganda. Understanding the motivations for restarting PrEP after discontinuation can inform health education practices, strengthen HIV prevention programs and improve PrEP adherence.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design, sampling and site\u003c/h2\u003e \u003cp\u003eA qualitative study using in-depth interviews (IDIs) was carried out between Nov 2023 and Mar 2024 among 14\u0026ndash;24-year-old AGYW in Kampala, Uganda, who are at high risk of contracting HIV, to investigate pausing of PrEP and restart. The study was nested within a randomised controlled trial (RCT) aiming to assess the effect of peer support on oral PrEP uptake and adherence. The 394 RCT Participants were recruited from urban slums, enrolled at the AIDS Information Centre (AIC), Kampala and randomly assigned to health worker counselling (control) vs health worker counselling plus peer support (intervention). The criteria for selecting AGYW to take part in the RCT were: being HIV and Hepatitia B-negative, not pregnant, having never used PrEP and willingness to take part in the study. In this study, the findings we use are from follow-up IDIs with participants purposively selected based on age range (14\u0026ndash;19 and 20\u0026ndash;24), study arm (control and intervention groups) and having initiated PrEP.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003eIDIs were conducted on 17 AGYW after six months in the RCT when the peer support intervention had ended. A semi-structured topic guide exploring various topics, including PrEP use and experiences was used by two trained female research assistants. Interviews were conducted in Luganda, the local language participants were familiar with, and they lasted approximately 1 hour. Interviews were audio-recorded using a voice recorder after gaining written informed consent. Interviews were conducted from the AIC clinic facility in private rooms.\u003c/p\u003e\n\u003ch3\u003eData analysis and management\u003c/h3\u003e\n\u003cp\u003eData was transcribed verbatim and translated by three trained social scientists. All the transcripts were checked and cleaned by IK before uploading them to a secure server at the MRC/UVRI\u0026amp;LSHTM with access to only the study staff.\u003c/p\u003e \u003cp\u003eData were coded both inductively and deductively [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e] in NVivo 14 to allow the new codes to emerge during the coding process. Coding was done by IK, ZN, LM and YM. The coded data were analyzed thematically using iterative categorization [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. An initial codebook was developed using four transcripts representing two transcripts each from control and intervention. All four transcripts were reviewed by the four-study staff to identify the initial codes; the coded transcripts were then compared across the different researchers to refine and agree on the codes, which were used to develop the draft codebook. This draft codebook was tried on four other transcripts, still using two scripts from control and intervention to test if the draft codebook suited other transcripts. This formed the final codebook that was exported in NVivo 14 and used by the team to code all the transcripts. After coding, data was exported to Word documents to do line-by-line analysis and summaries were created for each code [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. Data were analyzed with a focus on PrEP knowledge, understanding, perceptions and experiences.\u003c/p\u003e\n\u003ch3\u003eEthical considerations\u003c/h3\u003e\n\u003cp\u003e The study received ethical clearance from the Uganda Virus Research Institute ethics committee (ref: GC/127/918), the Uganda National Council for Science and Technology (ref: HS2490ES) and the London School of Hygiene and Tropical Medicine (ref: 28193). Participants took part in in-depth interviews after obtaining written informed consent. The information forms were read to the participants in Luganda, the most common language used in Kampala. For those who could not read and write, both the participants and an impartial witness identified by the participant had the consent forms read to them and if the participant agreed to participate, the witness wrote the participant's name, and the participant put a thumbprint on two copies, one for the study site and another kept by the participant. Interviews were conducted in private places comfortably for both the researcher and the participant to guarantee privacy. Pseudonyms and unique numbers were used instead of their names for anonymity.\u003c/p\u003e\n\u003ch3\u003eHealth Belief Model\u003c/h3\u003e\n\u003cp\u003eThe findings were interpreted using the Health Belief Model (HBM). HBM is a psychological framework for explaining and predicting health behaviors based on people's beliefs and attitudes. It was created in the 1950s by social psychologists Hochbaum, Rosenstock, and Kegels of the United States Public Health Service [\u003cspan class=\"CitationRef\"\u003e32\u003c/span\u003e–\u003cspan class=\"CitationRef\"\u003e34\u003c/span\u003e]. The paradigm was originally designed to explain why people did not engage in health prevention behaviors such as tuberculosis (TB) screening [\u003cspan class=\"CitationRef\"\u003e33\u003c/span\u003e], but it has since been extended to a variety of health conditions such as HIV, cancer and vaccines uptake [\u003cspan class=\"CitationRef\"\u003e35\u003c/span\u003e–\u003cspan class=\"CitationRef\"\u003e38\u003c/span\u003e]. We used this model to categorize factors that influence pausing of PrEP and what motivates restarting it.\u003c/p\u003e \u003cp\u003eThe health belief model is built around 5 constructs that influence health behavior, which we applied to interpret the findings. The first construct is perceived susceptibility, referring to individuals' beliefs about their risk of developing a health condition, because the more vulnerable the person feels, the more likely they are to use preventive measures. In this study, we considered the individual perceived risk of AGYW to get HIV. The second construct is perceived severity, which relates to a personal belief about the seriousness of the condition and its potential consequences, which may result in taking an action, in this study we looked at participant perceived severity of HIV. The third construct, perceived benefits, refers to the effectiveness of the health action taken to avert the risk or severity of the disease; with this model, the belief that health action will be of benefit influences its use. In the context of this study, we considered how the perceived benefits of PrEP influenced restart. Fourth is the perceived barriers, which focuses on the perceived obstacles in adopting new health behavior such as financial, physical or emotional factors. For this study, we considered the factors that hinder PrEP use leading to pausing of PrEP. The fifth construct is the cues to action, which are the triggers that prompt an individual to take part in healthy behavior, and we considered the triggers that led AGYW to restart PrEP and the process involved in pausing it.\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003cdiv class=\"BlockQuote\"\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003c/div\u003e"},{"header":"Findings","content":"\u003cp\u003eWe start by providing the participant characteristics listed below in Table\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003ctable id=\"Tab1\" border=\"1\"\u003e\u003ccaption\u003e\n\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n\u003cdiv class=\"CaptionContent\"\u003e\n\u003cp\u003eDemographic characteristics of AGYW invited for Follow-Up In-depth interviews (N\u0026thinsp;=\u0026thinsp;17)\u003c/p\u003e\n\u003c/div\u003e\n\u003c/caption\u003e\u003ccolgroup\u003e \u003c/colgroup\u003e\n\u003cthead\u003e\n\u003ctr\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eCharacteristics\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eCategories\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eNo. of Participants\u003c/p\u003e\n\u003c/th\u003e\n\u003c/tr\u003e\n\u003c/thead\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eAge range\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e14\u0026ndash;19\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e10\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e20\u0026ndash;24\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e7\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"3\" align=\"left\"\u003e\n\u003cp\u003eRelationship status\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eMarried\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eSingle (Never married)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e13\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eSingle (separated)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"4\" align=\"left\"\u003e\n\u003cp\u003eEducational level\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePrimary\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e9\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eSecondary\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eTertiary\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNone\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"3\" align=\"left\"\u003e\n\u003cp\u003eOccupation\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eStudent\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eSex work\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e13\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eEntertainment\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"6\" align=\"left\"\u003e\n\u003cp\u003ePrEP use after enrolment\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePrEP initiation\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e17\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePaused PrEP at least once\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e15\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNever paused PrEP at any point\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eRestarted PrEP\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e6\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eHoped to restart\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e8\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNo hope to restart\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eStudy arm\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eIntervention\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e8\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eControl\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\"\u003e\n\u003cp\u003e9\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e\n\u003c/div\u003e\n\u003cp\u003eWe present the findings starting with pausing of PrEP and then restarting PrEP. Of the 17 AGYW who initiated PrEP, 15 of these participants paused PrEP at least once during the study. Participants discussed various reasons for pausing PrEP as discussed below in line with the constructs of the Health Belief Model.\u003c/p\u003e\n\u003cp\u003ePerceived susceptibility: The perceived susceptibility that led to pausing of PrEP was the reduced HIV risk perception due to changes in sexual behavior. Those who were in a stable relationship or staying with their partner and not active in sex work during that period perceived themselves to be at a lower risk of getting HIV and thus paused/stopped PrEP.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I (Interviewer): How long did you take while taking PrEP?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eR (Respondent): Two months.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eI: Then you stopped?\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eR: Yes.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eI: Why did you stop?\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eR: Because I saw I was out of risk of getting HIV.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eI: You say you were out of risk of getting the virus, what were the indicators that you were out of risk?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eR: Because I was in relationship with one man and he\u0026rsquo;s the one they knew officially IDI01-14DEC2023-FU.\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003ePerceived severity: The perceived severity that made AGYW pause PrEP was linked to fears about the consequences of taking (and not taking) PrEP. The prevailing health conditions and concurrent use of other oral medication made some AGYW pause PrEP during periods of illness because they were already on prolonged oral medications and felt that adding the daily PrEP pill alongside these would mean taking too many tablets.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I have been using it but now I have decided to pause it a bit because I am taking a lot of drugs. The last time I was here, I was given drugs because I had an infection. When I went to the hospital for a scan, they found out that I had [condition x] and they also gave me a lot of drugs because I did not want to be injected. I realized that the drugs were for 2 months, and the infection had not yet cleared. When I thought of adding PrEP, I realized that the drugs were too many for my body to handle\u0026rdquo; IDI03-27NOV2023 \u0026ndash;FU\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I first paused taking them [PrEP] because I had fallen sick with a certain disease, but I thought\u0026hellip;, I was wondering whether it was caused by the contraception I was using, or it was caused by PrEP. So, I was there (confused). I even thought I had cervical cancer\u0026rdquo;. IDI11-13DEC2023-FU\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eIn addition, some of the AGYW paused PrEP when they got pregnant due to fears that PrEP would affect their unborn baby. \u003cem\u003e\u0026ldquo;I stopped taking PrEP from the time when I realized that I was pregnant. Then I stopped using it\u0026rdquo; IDI22-29NOV2023-FU.\u003c/em\u003e However, they had plans to resume after giving birth. \u003cem\u003e\u0026ldquo;In my opinion after giving birth, I may start [PrEP] again\u0026rdquo; IDI01-14DEC2023-FU.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePerceived barriers: The presence of side effects was the main reason for pausing PrEP. Participants reported getting side effects at the start such as headache, nausea, vomiting, body weakness and others, and decided to first pause or stop PrEP.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I swallowed at the inception of the study, the side effects were too much, and I first paused it, however, I restarted it\u0026rdquo;. IDI02 --27NOV2023-FU\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I: Did you ever start using oral PrEP while in this study?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eR: Yes.\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\n\u003cp\u003eI: How long did you take while swallowing these pills?\u003c/p\u003e\n\u003cdiv id=\"Sec12\" class=\"Section3\"\u003e\n\u003cp\u003eR: Three months\u003c/p\u003e\n\u003cdiv id=\"Sec13\" class=\"Section4\"\u003e\n\u003cp\u003eI: Three months and you said, \u0026ldquo;you later discontinued them\u0026rdquo;?\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eR: Yes\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\n\u003cp\u003eI: What influenced you to stop taking the pills?\u003c/p\u003e\n\u003cp\u003eR: Side effects\u003c/p\u003e\n\u003cp\u003eI: Side effects like what?\u003c/p\u003e\n\u003cdiv id=\"Sec16\" class=\"Section4\"\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\u003cem\u003eR: I used to vomit; I experienced constant headache.\u003c/em\u003e\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e\n\u003cp\u003eI: You have said vomiting?\u003c/p\u003e\n\u003cdiv id=\"Sec18\" class=\"Section3\"\u003e\n\u003cp\u003eR: And headache; when I couldn\u0026rsquo;t do my duties well, you are ever vomiting\u003c/p\u003e\n\u003cdiv id=\"Sec19\" class=\"Section4\"\u003e\n\u003cp\u003eI: Okay, how long did the side effects take?\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eR: They took long because whenever I would swallow them\u0026hellip; I used to swallow them every morning and I would spend the whole day in bed\u0026rdquo;. IDI21-07DEC2023\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThe second barrier was mobility that caused pausing of PrEP. Some AGYW reported going to distant places either for formal work or sex work and visiting relatives/ friends; for some, their PrEP pills got finished before they returned to Kampala, and they missed their refill appointments as they had moved far from the study clinic.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I got a trip, I had a research whatever I was attending in [district X, 500 kilometers away from the study clinic]. I travelled with the pills though I didn\u0026rsquo;t realize that it would not be enough because I was unable to estimate the period, we were to spend there. So, the pills were used up, and I was very far from Kampala, and I had no access, so I decided to pause\u0026rdquo;. IDI03-27NOV2023 -FU\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I: I want to know why you stopped. Because you said you started, so why did you stop using PrEP?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eR: I will not say that I got a problem with PrEP but it is just that we would have to go to some places, since we normally go and dance in those bars. So, when we went there, it was far and yet I had taken it [PrEP dose] and it got finished. I stayed there for long; I spent about 2 months there. By the time I got back here, my scheduled appointment date had passed\u003c/em\u003e IDI05-27NOV2023-FU\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eIn addition to the above, the AGYW reported being unable to access PrEP in the areas they moved to for formal work or sex work and this resulted into stopping/ pausing of PrEP.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I: So, when you started moving around, you stopped using it?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eR: Mm (yes). Because when I am that side (up country and islands), I cannot get the drugs you understand? It is difficult to get them\u0026hellip;\u0026rdquo; IDI07-30JAN2024-FU\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThis indicates PrEP access challenges in hard-to-reach areas of the country, which lead to pausing of PrEP hence affecting PrEP persistence.\u003c/p\u003e\n\u003cp\u003eFinancial constraints also caused AGYW to pause PrEP due to the lack of money to cater for transport to pick PrEP refills and the facilitation of meals required to take daily PrEP.\u003c/p\u003e\n\u003cp\u003eDespite 15 participants pausing PrEP at least once, six participants restarted, while eight participants had hopes to restart. The motivations for PrEP restart and/ hope to restart were as below in line with the HBM constructs.\u003c/p\u003e\n\u003cp\u003ePerceived susceptibility: High HIV risk perception was the major motivator for PrEP restart as most participants felt they were still at high risk of acquiring HIV due to the nature of their job (sex work), having many sexual partners of unknown HIV status, some of whom refused HIV testing and sometimes had sex while drunk. This high self-perceived risk motivated them to restart PrEP to prevent HIV infection.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;What motivated me to restart PrEP is because I know my job that I do, it has issues with the sickness (HIV); so, I want to get that protection when every time I am safe so that I don\u0026rsquo;t get the virus (HIV) because I am still doing the job (sex work)\u0026rdquo;. IDI24-28NOV2023-FU\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Because I have more than one person who I told you I\u0026rsquo;m in a relationship with and it is not like all of them allow to use [HIV prevention] methods. Some even refuse to go for blood testing\u0026rdquo;. IDI06\u0026ndash;06DEC2023-FU\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003ePerceived benefits: The perceived benefits of restarting PrEP included some of the participants considering PrEP to be a better method of controlling HIV because it not only offered protection but was also more reliable, as compared to other methods such as condoms and HIV testing. Oral PrEP was reported to have reduced anxiety while having sex.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I: Let me ask, in the future, would you want to restart using PrEP?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eR: Mm (yes)! It is not bad by the way. Even though condoms, okay all of them are helpful, but PrEP helps so much like 100%. Because a condom can burst along with other things which is not the case with PrEP\u0026rdquo;. IDI07-30JAN2024-FU\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eIn addition, participants reported uncertainties around other HIV prevention methods such as the option of condom use they had used during the period they paused PrEP. They reported that some men did not like to use condoms, yet such clients offered a lot of money for condom-less sex. This motivated them to have hopes or restarting PrEP to earn more money from condom-less sex. It was reported that some clients accepted using condoms but removed them during sexual intercourse. Some AGYW had fears that condoms could burst during sexual intercourse and also argued that condoms not being available at their workplaces sometimes would put them at risk.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eR: I will restart [PrEP].\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eI: Why do you expect to restart it?\u003c/p\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec20\" class=\"Section2\"\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eR: \u0026ldquo;Because I also fear HIV, I fear it and you should know that with the other method [condom], it is not that every time the condom can be available. Do you see it? So, you would be at risk if it is not available or if it bursts in the process, you see that you would have gotten HIV\u0026rdquo;. IDI11-13DEC2023-FU\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eOther perceived benefit was the future marriage prospects that motivated AGYW to restart PrEP because they wanted to keep themselves healthy so that in future, when they got a marriage partner, they would navigate HIV testing without anxiety.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I: So, would you like to restart PrEP in the future?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eR: Yes.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eI: What would influence you to use PrEP in the future?\u003c/p\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec21\" class=\"Section2\"\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eR: Right now, I do not expect that I am going to leave this job because it gives me a lot of money. So that means that, since I mind about my health, I don\u0026rsquo;t want to get sick even though I am sex worker, I have to swallow PrEP because it will help me in the future, in case I am to leave sex work I can get a man, but that is when I am healthy\u0026rdquo; IDI07-30JAN2024-FU\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eCues to action: AGYW made some actions before and during pausing of PrEP. Firstly, a few of them sought medical advice from the healthcare workers consulting for medical advice before they paused. Some of them received health worker counselling that enabled them to continue taking it after being informed that the side effects were temporary.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I have been with the health worker and asked her for a talk or counseling session before I make a final decision, though I had thought of pausing PrEP first, I wanted to get guidance from the health worker\u0026hellip;. I wanted medical advice from the health worker who understands this\u0026rdquo;. IDI03-27NOV2023 -FU.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I had ever...I used them but the reason I quit them was just as I told you [side effects], but the health worker explained to me that it is temporary and that's what will influence me to get back on them\u0026rdquo;\u003c/em\u003e. \u003cem\u003eIDI08-01DEC-2023-FU\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eIt is important to note that, most of these girls, even after pausing PrEP, they substituted it with other HIV prevention methods such as condoms or regular testing, indicating continued risk mitigation measures while not on PrEP.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I: So, when you started moving around, you stopped using it [PrEP}?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eR: Because when I am that side, I cannot get the drugs you understand? It is difficult to get them that is why I was using condoms, because they are everywhere. You can find them everywhere\u0026rdquo; IDI07-30JAN2024-FU\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eSome girls were motivated to think about restarting PrEP due to peer/group influence because they were the only ones not using PrEP among their peers. One girl who had paused taking PrEP felt inconvenienced carrying boxes of condoms yet her friends who continued taking PrEP were not carrying them.\u003c/p\u003e\n\u003cp\u003eI: Okay. So now, they take PrEP?\u003c/p\u003e\n\u003cdiv id=\"Sec22\" class=\"Section3\"\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eR: They take; I am the only one who is not taking.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eI: Okay. Is there a way it makes you feel when you see your friends taking PrEP?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eR: Yes, because you be moving around with a box of condoms yet for them, they go free, when they don't have anything. It somehow makes me feel bad.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eI: Okay. Now you feel okay, you want to come back and get PrEP?\u003c/p\u003e\n\u003cp\u003eR: Yes. I am about to come back and get it again. IDI05-27NOV2023-FU\u003c/p\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eIn this study, we used qualitative interviews to explore pausing of PrEP, PrEP restart amongst AGYW mainly engaged in sex work, who initiated PrEP in an HIV prevention program in Kampala, Uganda. We mainly found that AGYW who paused PrEP restarted at some point and others had hopes to restart later. The main reasons for pausing of PrEP were the perceived barriers such as presence of side effects or perceived susceptibility such as the perceived reduced HIV risk, while PrEP restart or intentions to restart were mainly motivated by the perceived severity such as high HIV risk perception. However, most importantly, during the period they paused PrEP, they used other HIV risk mitigation measures such as condom use.\u003c/p\u003e \u003cp\u003eThe study's findings are interpreted in light of the Health Belief Model [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e], which helps to explain AGYW decisions to pause, or restart PrEP use depending on their perceived health risks and benefits. Perceived barriers, such as side effects, mobility, PrEP access during travel far away from the study clinic, and financial constraints, were barriers to continuing PrEP use. The perceived susceptibility was also evident when some AGYW in stable relationships or with less engagement in sex work had lower perceived risk of getting HIV, resulting in a pause on PrEP. On the other hand, the high perceived HIV risk among others who continued to engage in sex work and had multiple partners of unknow HIV status motivated PrEP restart. These decisions are consistent with the model's premise that people act based on their beliefs about the likelihood of developing an illness [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e] making it important to understand peoples beliefs about an intervention such as taking oral PrEP for it to succeed.\u003c/p\u003e \u003cp\u003eIn this study, we found that side effects were the main reason for pausing of PrEP. This is similar to various PrEP adherence studies conducted in Uganda [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e] and elsewhere in East Africa [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e] and South Africa [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. What differentiates our study is the observation that some AGYW consulted healthcare workers or counselors before deciding to pause PrEP. During these discussions, some AGYW received explanations about the temporary nature of the side effects, leading them to continue PrEP, while others opted to pause but expressed intentions to restart later. Our study\u0026rsquo;s contribution is supported by the recommendation of Reddy et al., (2023) where they stress that challenges experienced during PrEP use could be managed by the provision of effective counselling and management of side effects [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. Indeed, those in our study who sought counselling planned to continue or continued with PrEP after pausing. The few individuals hoping to restart PrEP even after side effects implies that AGYW should be encouraged to always consult with the healthcare workers, before choosing to pause or stop. This is more likely to lead to safe pauses, increase PrEP restart, and continuation, hence adherence.\u003c/p\u003e \u003cp\u003eThe mobility of the AGYW for sex work or other work away from their residences also resulted into pausing of PrEP. This concurs with other studies that found mobility of participants to be affecting PrEP adherence in Uganda [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e], in Namibia [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e] and elsewhere in South Africa [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. This necessitates the need for long-acting PrEP like lenacapavir which can be offered twice a year and can alleviate challenges of AGYW missing PrEP refills or failing to find PrEP providers due to mobility. Rossue et al (2021) in South Africa implemented a successful community based mobile clinic to provide PrEP to AGYW, however, mobility of AGYW was a challenge as the mobile clinic van would be in their communities when they were away [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. Like in our study, this indicates mobility as a big challenge to adherence and points out the need for making PrEP options including long-acting injectable PrEP widely available and accessible to overcome some of these challenges. Related to mobility, PrEP access has been identified as a challenge in achieving PrEP adherence [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. Some of the AGYW in our study had PrEP access challenges in the areas they moved to for sex work. Therefore, in addition to providing long-term injectable PrEP, provision of PrEP in hard-to-reach areas that are frequented by young women selling sex can also help to solve access challenges to mobile AGYW. Butler et al., [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e] offered remote PrEP delivery services during COVID-19 through placing PrEP in local private pharmacies, community based organizations and university halls of residence. Similar models could be tested and adopted or tailored to different contexts to ensure availability of PrEP in local pharmacies/clinics in the hard-to-reach areas to improve access challenges.\u003c/p\u003e \u003cp\u003eThe World Health Organization (WHO) recommends offering PrEP to pregnant and breastfeeding women who are at high risk of acquiring HIV [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. In our study, some participants paused PrEP upon conceiving due to concerns over possible harm to their unborn babies. Despite participants receiving information that oral PrEP could be used during pregnancy, this perception among participants could be attributed to the common knowledge that some drugs are dangerous to the fetus during pregnancy [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. This finding is similar to other studies that found anxiety among participants in taking PrEP while pregnant [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. This necessitates the need for robust health education by the healthcare workers, counsellors and peer educators addressing the fears around the unborn baby for pregnant mothers and lactating mothers as well. In other studies, such as a study conducted amongst pregnant women in South Africa, a large number of women were taking PrEP while pregnant and continued with sex work for up to 5 months and paused PrEP and sex work due to perceived dangers of having sex with multiple partners during pregnancy [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. Our participants having reported fear of taking PrEP while pregnant could imply that, even after pausing PrEP, they could have continued with sex work while pregnant, and this would lead to a risk of mother-baby transmission in case they acquired HIV infection during that period. A woman\u0026rsquo;s risk of HIV acquisition doubles during pregnancy and breastfeeding [\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e, \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e]. Therefore, even though it is widely perceived and known that women do not take some medications in early pregnancy, information about the proven safety of oral PrEP during pregnancy must be incorporated in PrEP messages to encourage PrEP continuation among those who become pregnant while taking PrEP to prevent HIV acquisition and onward mother-to-baby transmission.\u003c/p\u003e \u003cp\u003eThe AGYW in our study paused PrEP while having other health conditions or taking other medications, as it was considered burdensome to take PrEP alongside other medications. This is similar to other studies in Australia where participants paused PrEP while taking other medications due to failure to manage schedules for taking both medications [\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e]. This necessitates the need to include the safety of taking PrEP alongside other medications in health education programs and counselling to foster PrEP persistence during such situations.\u003c/p\u003e \u003cp\u003eOur study also found reduced HIV risk perception as a reason for pausing PrEP. This is similar to other studies that found AGYW and FSWs pausing PrEP due to perceived low HIV risk [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e, \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e]. This indicates changes in risk perception or risk re-evaluation. The baseline interviews of our study indicated all participants perceived themselves to be at high risk, but over time the risk perception changed based on sexual behavior. This is not only unique to our study, but similar with other findings where risk re-evaluation occurred due to factors such as changes in relationships and getting pregnant, which resulted into pausing sex work [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. Risk perception is very crucial in PrEP uptake and continuation. PrEP uptake in this population is influenced by high HIV perceived risk [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e]. However, what is unique with our study, we found risk mitigation amongst AGYW who pause PrEP because of reduced risk perception. They replaced PrEP with other HIV prevention methods such as condom use or HIV testing, especially those who mentioned reducing sexual partners. This implies PrEP education and HIV prevention programs should also emphasize and promote other HIV prevention methods alongside PrEP, this would give AGYW other options in case they paused PrEP due to intentional or unintentional factors. Whereas to some AGYW, reduced HIV risk perception resulted into pausing of PrEP, high HIV risk perception was the major factor that motivated PrEP restart, consistent with findings from other studies in East and Southern Africa [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. This indicates the importance of HIV risk re-evaluation on PrEP uptake, thus necessitating the need to have programs that make AGYW aware of their HIV risk. A study in South Africa recommends the use of HIV risk assessment tools to make AGYW recognize their HIV risk [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e] because poor assessment of risk may lead to poor use of PrEP [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. These risk assessment tools could be adopted at community levels as well as clinical levels or incorporated into sexual and reproductive health services to make girls aware of their HIV risk. Additionally, peer support groups should integrate discussions on HIV risk so that AGYW can learn from peers\u0026rsquo; experiences and better assess their own vulnerability. The self-awareness of HIV risk can result in PrEP initiation and continuation after pausing.\u003c/p\u003e \u003cp\u003eOpposed to our study findings, a study in South Africa [\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e] found that the fear of being scolded by health care workers for missing refill resulted into fear to return for refill despite South Africa having good adolescent friendly services, however, it\u0026rsquo;s important to note that in this South African study, the fear reported is just perceived but not experienced. In our study, however, we did not receive cases of AGYW fearing to approach healthcare workers, this could have been the reason why AGYW consulted them before pausing of PrEP. The study team were well trained and had experience working with AGYW in previous HIV prevention studies, hence provided a friendly environment. Thus AFYW should be encouraged to always make consultations without fear.\u003c/p\u003e \u003cdiv id=\"Sec26\" class=\"Section2\"\u003e \u003ch2\u003eStudy strength and limitations\u003c/h2\u003e \u003cp\u003eWe used in-depth interviews among purposively selected participants (PrEP starters) which offered rich and deeper insights about PrEP experiences, pause and restart. However, as with qualitative interviews, these findings may not be generalized to all populations but based on the depths of the discussion with the AGYW interviewed on pausing of PrEP and restart, the findings can be transferable to AGYW in similar settings and social economic demographics such as AGYW who practice sex work and dealing in hospitality and entertainment.\u003c/p\u003e \u003cp\u003eData reported in this study is based on the individuals who were interviewed after six months in the study, whereas this provided reasons for pausing PrEP and restarting, there is a need for understanding pausing of PrEP and restarting in longitudinal studies such as after one year or two years and beyond to examine the changes in PrEP journey over a long period. This would help to capture PrEP persistence amongst those who restarted it and compare factors based on duration such as six months, 12 months and above. This study does not report data on the persistence of those who restarted which would be picked from following up those who restarted over a certain period in a longitudinal study.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe findings suggest that some of the AGYW who pause PrEP typically do not stop entirely but rather interrupt their usage due to specific challenges encountered during their PrEP journey while maintaining hopes of restarting in the future. The study also highlights that AGYW often engage in risk mitigation strategies after pausing or discontinuing PrEP. Therefore, comprehensive tailored health education messages should be given, emphasizing the importance of resuming PrEP when challenges arise and promoting the use of alternative HIV prevention methods during periods of interruption e.g., pill burden due to taking oral medications for other illnesses and improving accessibility to long-acting injectable PrEP for highly mobile AGYW. Our findings further suggest that effective health worker support, and targeted education, particularly around creating risk awareness, managing side effects and addressing concerns during pregnancy, can significantly enhance oral PrEP continuation and restart rates among AGYW whose preferred HIV prevention method is the oral pill.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003ePrEP: Oral Pre-Exposure Prophylaxis\u003c/p\u003e\n\u003cp\u003eAIC: Aids Information Centre\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eI: Interviewer\u003c/p\u003e\n\u003cp\u003eR: Respondent\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWHO: World Health Organization\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAGYW: Adolescent Girls and Young Women\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eHIV: Human Immunodeficiency Virus\u003c/p\u003e\n\u003cp\u003eSSA: Sub-Saharan Africa\u003c/p\u003e\n\u003cp\u003eTDF: Tenofovir Disoproxil Fumarate\u003c/p\u003e\n\u003cp\u003eRCT: Randomised Controlled Trial\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eHBM: Health Belief Model\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMRC/UVRI \u0026amp; LSHTM: Medical Research Council/ Uganda Virus Research Institute and London School of Hygiene and Tropical Medicine Uganda Research Unit\u003c/p\u003e\n\u003cp\u003eIDI: In-depth interview\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFSWs Female Sex Workers\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003ch2\u003eEthics approval and consent to participate\u003c/h2\u003e \u003cp\u003e The study received ethical approvals, and the participants also provided written informed consent.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eConsent for publication\u003c/strong\u003e \u003cp\u003eThe participants consented for anonymized information to be published.\u003c/p\u003e \u003c/p\u003e\u003cp\u003e \u003ch2\u003eCompeting interests\u003c/h2\u003e \u003cp\u003eThe authors declare no competing interests.\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e \u003cp\u003eThis project was part of the second European \u0026amp; Developing Countries Clinical Trials Partnership (EDCTP2) program supported by the European Union (CSA2020NoE-3102). The contents of this manuscript are the responsibility of the authors and do not necessarily state or reflect those of EDCTP.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eYM conceptualized and designed the study, developed the data collection forms, and was the principal investigator of the project. IK and ZN collected data. IK, ZN, LM did data transcription and translation, LM planned the analysis process (Iterative Categorization) and led the draft of the manuscript. IK led the analysis process, filling all transcripts on a secure drive and anonymizing them. IK, YM, ZN, and LM participated in developing the codebook, coding and iterative categorization. All the authors iteratively provided feedback and reviewed the manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003e The authors would like to acknowledge the study participants, AIDS Information Centre (AIC), peer educators, and the entire research team including Catherine Nakirijja, Hellen Kalungi, Zidah Najjuma, and Rachel Wanyana. We also acknowledge Dr Praise Adeyamo for her feedback and editing the manuscript.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe data used for the analysis of this project can be accessed through an email request to [[email protected]](mailto:[email protected]) . .\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eBaeten JM, et al. Antiretroviral prophylaxis for HIV prevention in heterosexual men and women. N Engl J Med. 2012;367(5):399\u0026ndash;410.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCelum C, et al. PrEP uptake, persistence, adherence, and effect of retrospective drug level feedback on PrEP adherence among young women in southern Africa: results from HPTN 082, a randomized controlled trial. PLoS Med. 2021;18(6):e1003670.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eUNAIDS. \u003cem\u003eGlobal AIDS update. Miles to go: closing gaps, breaking barriers, righting injustices. Geneva\u003c/em\u003e. 2018.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eUNAIDS. \u003cem\u003eUNAIDS_FactSheet_en. DATA Sheet, AIDS Fact.\u003c/em\u003e Available online: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.unaids.org/sites/default/files/media_asset\u003c/span\u003e\u003cspan address=\"https://www.unaids.org/sites/default/files/media_asset\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e, 2021. (accessed on 7 April 2022).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eUNAIDS,2024 Global Aids update. Thematic briefing note. HIV and Adolescent Girls and Young women \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.unaids.org/sites/default/files/media_asset/2024-unaids-global-aids-update-adolescent-girls-young-women_en.pdf\u003c/span\u003e\u003cspan address=\"https://www.unaids.org/sites/default/files/media_asset/2024-unaids-global-aids-update-adolescent-girls-young-women_en.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eZuma K, et al. New insights into HIV epidemic in South Africa: key findings from the National HIV Prevalence, Incidence and Behaviour Survey, 2012. Afr J AIDS Res. 2016;15(1):67\u0026ndash;75.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDellar RC, Dlamini S, Karim QA. Adolescent girls and young women: key populations for HIV epidemic control. J Int AIDS Soc. 2015;18:19408.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWHO. \u003cem\u003eWorld Health Organization. WHO Technical Brief: Preventing HIV during pregnancy and breastfeeding in the context of pre-exposure prophylaxis (PrEP).\u003c/em\u003e. 2017.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWHO World Health Organization. Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection.. 2016. second edition.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWHO. \u003cem\u003eWorld Health Organisation. Guideline on when to start antiretroviral therapy and on pre-exposure prophylaxis for HIV. (2015).\u003c/em\u003e. 2015.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eThigpen MC, et al. Antiretroviral preexposure prophylaxis for heterosexual HIV transmission in Botswana. N Engl J Med. 2012;367(5):423\u0026ndash;34.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCelum CL, et al. Incentives conditioned on tenofovir levels to support PrEP adherence among young South African women: a randomized trial. J Int AIDS Soc. 2020;23(11):e25636.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDe Tapsoba D. Persistence of oral pre-exposure prophylaxis (PrEP) among adolescent girls and young women initiating PrEP for HIV prevention in Kenya. AIDS Care. 2021;33(6):712\u0026ndash;20.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRousseau E, et al. Adolescent girls and young women\u0026rsquo;s PrEP-user journey during an implementation science study in South Africa and Kenya. PLoS ONE. 2021;16(10):e0258542.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCelum CL, et al. HIV pre-exposure prophylaxis for adolescent girls and young women in Africa: from efficacy trials to delivery. J Int AIDS Soc. 2019;22:e25298.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRousseau-Jemwa E et al. \u003cem\u003eEarly persistence of HIV pre-exposure prophylaxis (PrEP) in African adolescent girls and young women (AGYW) from Kenya and South Africa\u003c/em\u003e. in \u003cem\u003eAIDS Research and Human Retroviruses\u003c/em\u003e. 2018. Mary Ann Liebert, inc 140 Huguenot Street, 3rd fl, New Rochelle, NY 10801 USA.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKhadka N, et al. Evaluating the use of oral pre-exposure prophylaxis among pregnant and postpartum adolescent girls and young women in Cape Town, South Africa. Front Reproductive Health. 2023;5:1224474.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCamlin CS, et al. Understanding demand for PrEP and early experiences of PrEP use among young adults in rural Kenya and Uganda: a qualitative study. AIDS Behav. 2020;24:2149\u0026ndash;62.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGombe MM, et al. Key barriers and enablers associated with uptake and continuation of oral pre-exposure prophylaxis (PrEP) in the public sector in Zimbabwe: qualitative perspectives of general population clients at high risk for HIV. PLoS ONE. 2020;15(1):e0227632.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMayanja Y, et al. Oral pre-exposure prophylaxis preference, uptake, adherence and continuation among adolescent girls and young women in Kampala, Uganda: a prospective cohort study. J Int AIDS Soc. 2022;25(5):e25909.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBaron D et al. \u003cem\u003eYou talk about problems until you feel free: South African adolescent and young women\u0026rsquo;s narratives on the value of HIV prevention peer support clubs.\u003c/em\u003e 2020.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRao A, et al. Longitudinal patterns of initiation, persistence, and cycling on preexposure prophylaxis among female sex workers and adolescent girls and young women in South Africa. AIDS. 2023;37(6):977\u0026ndash;86.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNdimande-Khoza MN, et al. Family influences on oral PrEP use among adolescent girls and young women in Kenya and South Africa. PLoS ONE. 2023;18(11):e0292529.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKayesu I, et al. Uptake of and adherence to oral pre-exposure prophylaxis among adolescent girls and young women at high risk of HIV-infection in Kampala, Uganda: a qualitative study of experiences, facilitators and barriers. BMC Womens Health. 2022;22(1):440.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNalukwago GK, et al. Adherence to oral HIV pre-exposure prophylaxis among female sex workers in Kampala, Uganda. Afr Health Sci. 2021;21(3):1048\u0026ndash;58.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eToledo L, et al. Knowledge, attitudes, and experiences of HIV pre-exposure prophylaxis (PrEP) trial participants in Botswana. World J AIDS. 2015;5(2):10.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAmico KR, et al. Experiences with HPTN 067/ADAPT study-provided open-label PrEP among women in Cape Town: facilitators and barriers within a mutuality framework. AIDS Behav. 2017;21:1361\u0026ndash;75.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eVan der Elst EM, et al. High acceptability of HIV pre-exposure prophylaxis but challenges in adherence and use: qualitative insights from a phase I trial of intermittent and daily PrEP in at-risk populations in Kenya. AIDS Behav. 2013;17:2162\u0026ndash;72.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEakle R, et al. I am still negative: Female sex workers\u0026rsquo; perspectives on uptake and use of daily pre-exposure prophylaxis for HIV prevention in South Africa. PLoS ONE. 2019;14(4):e0212271.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eClarke V, Braun V. Thematic analysis. Encyclopedia of critical psychology. Springer; 2014. pp. 1947\u0026ndash;52.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNeale J. Iterative categorisation (IC)(part 2): interpreting qualitative data. Addiction. 2021;116(3):668\u0026ndash;76.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMaiman LA, Becker MH. The health belief model: Origins and correlates in psychological theory. Health Educ Monogr. 1974;2(4):336\u0026ndash;53.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eChampion VL, Skinner CS. \u003cem\u003eThe health belief model.\u003c/em\u003e Health behavior and health education: Theory, research, and practice, 2008. 4: pp. 45\u0026ndash;65.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAbraham C, Sheeran P. The health belief model. Predicting health Behav. 2005;2(1):28\u0026ndash;80.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTarkang EE, Zotor FB. Application of the health belief model (HBM) in HIV prevention: a literature review. Cent Afr J Public Health. 2015;1(1):1\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLin P, Simoni JM, Zemon V. The health belief model, sexual behaviors, and HIV risk among Taiwanese immigrants. Volume 17. AIDS Education \u0026amp; Prevention; 2005. pp. 469\u0026ndash;83. 5.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eErsin F, Bahar Z. Effect of health belief model and health promotion model on breast cancer early diagnosis behavior: a systematic review. Asian Pac J Cancer Prev. 2011;12(10):2555\u0026ndash;62.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLimbu YB, Gautam RK, Pham L. The health belief model applied to COVID-19 vaccine hesitancy: a systematic review. Vaccines. 2022;10(6):973.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJoshi S, et al. PrEP uptake and persistence amongst HIV-negative women who exchange sex for money or commodities in Kampala, Uganda: a qualitative inquiry assessing the influence of pregnancy. PLOS global public health. 2023;3(6):e0000434.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eReddy K, Palanee-Phillips T, Heffron R. Awareness of Heightened Sexual and Behavioral Vulnerability as a Trigger for PrEP Resumption Among Adolescent Girls and Young Women in East and Southern Africa. Curr HIV/AIDS Rep. 2023;20(6):333\u0026ndash;44.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBarnabee G, et al. PrEP uptake and early persistence among adolescent girls and young women receiving services via community and hybrid community-clinic models in Namibia. PLoS ONE. 2023;18(8):e0289353.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRousseau E, et al. A community-based mobile clinic model delivering PrEP for HIV prevention to adolescent girls and young women in Cape Town, South Africa. BMC Health Serv Res. 2021;21(1):888.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eButler V, et al. Implementing differentiated and integrated HIV prevention services for adolescent girls and young women: experiences from oral PrEP rollout in primary care services in South Africa. J Adolesc Health. 2023;73(6):S58\u0026ndash;66.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eChilaka VN, Konje JC. HIV in pregnancy\u0026ndash;An update. Eur J Obstet Gynecol Reproductive Biology. 2021;256:484\u0026ndash;91.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDavey J. Risk perception and sex behaviour in pregnancy and breastfeeding in high HIV prevalence settings: programmatic implications for PrEP delivery. PLoS ONE. 2018;13(5):e0197143.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSmith AK, et al. Dosing practices made mundane: Enacting HIV pre-exposure prophylaxis adherence in domestic routines. Sociol Health Illn. 2023;45(8):1747\u0026ndash;64.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePintye J, et al. Influences on early discontinuation and persistence of daily oral PrEP use among Kenyan adolescent girls and young women: a qualitative evaluation from a PrEP implementation program. JAIDS J Acquir Immune Defic Syndr. 2021;86(4):e83\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKoss CA, et al. Uptake, engagement, and adherence to pre-exposure prophylaxis offered after population HIV testing in rural Kenya and Uganda: 72-week interim analysis of observational data from the SEARCH study. lancet HIV. 2020;7(4):e249\u0026ndash;61.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSila J, et al. High awareness, yet low uptake, of pre-exposure prophylaxis among adolescent girls and young women within family planning clinics in Kenya. AIDS Patient Care STDs. 2020;34(8):336\u0026ndash;43.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHill LM, et al. HIV risk, risk perception, and PrEP interest among adolescent girls and young women in Lilongwe, Malawi: operationalizing the PrEP cascade. J Int AIDS Soc. 2020;23:e25502.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDe Vos L, et al. Factors that influence adolescent girls and young women's re-initiation or complete discontinuation from daily oral PrEP use: a qualitative study from Eastern Cape Province, South Africa. J Int AIDS Soc. 2023;26(9):e26175. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/jia2.26175\u003c/span\u003e\u003cspan address=\"10.1002/jia2.26175\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e. PMID: 37758649; PMCID: PMC10533377.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"aids-research-and-therapy","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"arty","sideBox":"Learn more about [AIDS Research and Therapy](http://aidsrestherapy.biomedcentral.com/)","snPcode":"12981","submissionUrl":"https://submission.nature.com/new-submission/12981/3","title":"AIDS Research and Therapy","twitterHandle":"@BioMedCentral","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"PrEP pause, PrEP restart, PrEP stop, PrEP adherence, PrEP continuation, PrEP persistence, Adolsecent girls and Young Women, AGYW, Oral Pre-Exposure Prophylaxis, PrEP","lastPublishedDoi":"10.21203/rs.3.rs-9237701/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9237701/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eIntroduction:\u003c/h2\u003e \u003cp\u003eThere is interest in PrEP uptake amongst young people at high risk of HIV. However, there is a significant decline in PrEP starting from three to six months of PrEP initiation, thus affecting PrEP persistence and continuation due to pausing and stopping of PrEP, with a few restarting it. Understanding why AGYW pauses PrEP use and what motivates the few to restart is critical for enhancing PrEP adherence and continuation. We explored pausing of PrEP and restarting it amongst AGYW in an HIV prevention program, in Kampala, Uganda, to inform future HIV health education interventions aimed at strengthening PrEP continuation.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eBetween November 2023 and March 2024, a qualitative study using 17 follow up interviews was carried out in Kampala, Uganda at month six of PrEP initiation. Participants were purposively sampled from AGYW aged 14 to 24-year-old who were HIV-negative and at high risk of acquiring HIV. Data were transcribed verbatim, coded in Nvivo 14, analyzed thematically using iterative categorization, and interpreted using the Health Belief Model.\u003c/p\u003e\u003ch2\u003eFindings:\u003c/h2\u003e \u003cp\u003ePrEP side effects were the major reason for missing and eventually pausing. Mobility of AGYW led to pausing PrEP, as some reported forgetting to travel with their pills, or travelling with inadequate pills, and lack of access to PrEP in new locations. Anxiety about using PrEP during pregnancy, having other new health conditions requiring long-term oral medication led to pausing of PrEP. The major reasons for PrEP restart were high HIV risk awareness, including having multiple sexual partners of unknown status. Inconsistent condom use such as refusing or removing condoms, and higher pay for condomless sex motivated restarting PrEP. Lastly, future marriage prospects and getting into long-term relationships motivated AGYW to remain HIV-negative through PrEP use.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eSome AGYW who pause PrEP intend to restart in the future, and during the period of pausing PrEP, they mitigate HIV risk by using other HIV prevention methods. Therefore, tailored comprehensive HIV messages should be implemented addressing the challenges in the PrEP journey, emphasizing the importance of restarting PrEP and the use of other HIV prevention methods during the pause period to enhance HIV prevention persistence and continuation.\u003c/p\u003e","manuscriptTitle":"Oral PrEP pause and restart among Adolescent Girls and Young Women (AGYW) who initiated PrEP in an HIV prevention program in Kampala, Uganda. A qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-02 16:20:44","doi":"10.21203/rs.3.rs-9237701/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-04-21T16:15:00+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-21T15:48:02+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-20T17:48:05+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"66340410176619650870038427648414290074","date":"2026-03-31T14:39:54+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"173229608010363240778198552411032425998","date":"2026-03-30T12:53:06+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-03-29T14:30:24+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-29T00:27:14+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-28T16:40:35+00:00","index":"","fulltext":""},{"type":"submitted","content":"AIDS Research and Therapy","date":"2026-03-26T19:42:31+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"aids-research-and-therapy","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"arty","sideBox":"Learn more about [AIDS Research and Therapy](http://aidsrestherapy.biomedcentral.com/)","snPcode":"12981","submissionUrl":"https://submission.nature.com/new-submission/12981/3","title":"AIDS Research and Therapy","twitterHandle":"@BioMedCentral","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"9c6386b8-9b7c-4310-b5f6-569ed6b98aae","owner":[],"postedDate":"April 2nd, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-05-12T14:01:43+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-02 16:20:44","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9237701","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9237701","identity":"rs-9237701","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}