Personal factors.

The study findings indicate that individual factors were identified as the main barriers hindering uptake to PrEP among AGYW who are at risk for HIV. These reported self-perceived barriers encompass pre-requisites for PrEP initiations, disbelief in the effectiveness of PrEP, interference of refill hours with working hours, financial constraints, and PrEP medication adherence, as discussed in detail below.

The prerequisites for initiating PrEP.

The participants noted that the mandatory requirement of HIV testing prior to PrEP initiation is a barrier for several AGYWs intending to initiate PrEP use. The primary factor contributing to the participants’ reticence that was revealed during the interviews was their apprehension about knowing their HIV status. One participant explained her hesitation experiences of PrEP initiation.

“When they told me that I need to be tested first, I wanted to stop reaching decisions of using PrEP because I thought what would happen if I was tested and then I was found to have HIV infection. That is it, testing was giving me a lot of fear” (P1, Age 17, Dar es Salaam)

Disbelief effectiveness of PrEP.

Participants reported that peers are sceptical of the efficacy of PrEP in providing protection against HIV, hence they do not access the services as explained below;

They don’t believe it can prevent HIV, but PrEP is used in small amounts; a few percent is not much. I think because they don’t know, they don’t believe that the preventive medicine (PrEP) can work and that it prevents HIV; that is, they do not believe it works. (P38, Age 24, Tanga)

Another participant who already uses PrEP, further elaborates on how she does not believe PrEP provides protection, and therefore they continue to use PrEP and condoms together as explained further by one participant;

“Despite that, I had education about PrEP, but I could not stop using condoms because the first time they tell you about PrEP, it is as if they (HCF) are liars, and you think they are not useful. Now, after you go to the test, you are told good answers, and as you continue, you start to believe little by little that faith is coming” (P20, Age 24, Dar es Salaam)

Interference of refill hours with working hours.

Some participants reported that have not disclosed PrEP use to many in their immediate support system such as family members, friends, colleagues and employers. Due to the latter many find it difficult when asking permission to visit the HCF, since they cannot say they are going for PrEP some participants have reported being denied permission to visit the health centre;

“because for a while I was stuck at work, because you know at work at other times, the boss does not let you leave just like that” (P45, Age 23, Tanga)

Other participants further reported that due to the scheduling conflicts between PrEP refill hours and work hours, there were some time conflicts which made them unable to visit the HCF for PrEP refills;

“It has happened before because here, where I work, there are times when it becomes difficult to go out, so I cannot go to get PrEP services, although there are times when I have permission from work and the drugs are not available” (P9, Age 17, Dar es Salaam)

Financial constraints.

Several participants indicated that in order to reach the HCF, they were required to utilise various available modes of transportation, such as buses, motorbikes, or tuktuk (bajaji). However, they have acknowledged that they do face difficulties in obtaining the necessary travel fare and seeking PrEP services at the HCF. As a result of these circumstances, participants have reported several instances when they have chosen to defer or reschedule their trips to HCF for the purpose of accessing PrEP treatments, as documented below;

I was unable to go for refills because I did not have transportation fare, and the health facility is far from here (P19, Age 20, Dar es salaam)

Adherence to the pills.

AGYW noted that adherence to take PrEP medication everyday was one of the concerns they had to consider before initiating PrEP. The burden of taking pills everyday prevented many from accessing PrEP. The perceived fear of long-term side effects of taking the pills everyday also was reported as a significant issue that limited many participants to initiate PrEP use;

“For the first time it is not easy to agree with that thing (PrEP), it is not easy to directly accept PrEP to use it… .at the very beginning I was wondering, just asking myself the purpose of the medicine, how do you take the medicine every day” (P22, Age 20, Dar es Salaam)

Interpersonal barriers.

Participants identified several barriers with their immediate social groups, support system such as workmates, family members and friends that discouraged them at first to access care in the HCF. Among the reported barriers at this level are misconceptions of PrEP pills as ART and the labelling of PrEP users.

Misconceptions about PrEP pills.

Some participants using PrEP expressed that several of their peers, friends, workmates, and significant others believe that PrEP is an ART that is used in the treatment of HIV rather than its intended purpose of prevention. The identified misconception also made some individuals worried and scared to initiate or continue with PrEP uptake at the beginning, because people in their social environment associated PrEP use with HIV.

“I don’t have friends who use it, my friends themselves think that the drugs are for HIV, so I lose them because they talk…they think ooh I don’t know this and that, or you will find yourself arguing with them "ooh I’m healthy" (P43, Age 23, Tanga)

Moreover, participant revealed the misconceptions that peers have about PrEP, is due to lack of knowledge and appropriate information about PrEP in their communities;

“It depends on the understanding of the person who will be understood and whether they agree with it or not, because some say that it is not something to prevent, but it is a person who has already experienced the effects and is using it (PrEP). Therefore, others are growing to know that these are drugs used by affected people and not preventive medicine. Many are still worried about preventive medicine” (P42, Age 21, Tanga)

Labelling of PrEP users.

Participants identified that in their communities, when people learned that they use PrEP they label them as HIV positive. Moreover, they spread information in the community and people start pointing fingers at you as and tell you that you are HIV positive, as explained below by one participant.

“There was a time when my friends came to my house and took a picture of my PrEP can and started announcing that I am affected because I use those pills (PrEP)” (P45, Age 23, Tanga)

The labelling does not end with people learning that they are using PrEP. Additionally, several participants identified that in most of HCF they seek care both PrEP and ART (for HIV treatment) are offered in the same building, the CTCs. As they are seen by people going into the CTCs or meet someone, they know inside they are also being perceived and labelled as HIV positive. The latter has resulted in a reluctance to uptake PrEP services due to fear of being identified or labelled as HIV positive. One participant provides a detailed account of her personal experience in the next below;

“These PrEP services are available at the same time and area, with those of people who use (HIV)anti-infection drugs, that’s where the challenge arises, when you meet someone, from the same street, so they automatically assume that I am also taking HIV drugs of infection. That’s where the trouble begins, they start spreading the information that I’ve met him somewhere he’s taking HIV anti-retroviral drugs” (P22, Age 20, Dar es Salaam)

Moreover, a few participants revealed that they are afraid to be seen going to HCF to take PrEP as use is associated with sexual promiscuity and HIV positivity;

“I am just afraid to say that maybe people will think bad of me, if it’s not bad I’ll tell them too! They will see me like me, maybe this girl is selling herself, that’s why she’s using PrEP. I’m not free to because when I come to (HCF) I’m tight and I have to hide myself because if people see me, they will also know that I have HIV virus (AIDS)”. (P52, Age 19, Tanga)

Institutional barriers.

Participants in this study have reported several barriers that they face at the institutional level when accessing PrEP services in the HCF. These include inadequate privacy, PrEP drug stockout, long waiting times and distance to the HCF. These barriers are further elaborated below;

Inadequate privacy.

Inadequate privacy is reported based on the area of HCF where PrEP services are offered, the location of the facility, and while waiting for services. Participants reported that PrEP services in the HCF are offered in the CTCs, an area that is commonly known for providing HIV treatment care for people who are HIV positive. Many identified that they feel uncomfortable accessing PrEP in the CTC, and in some situations, they send someone else to pick up their pills for the CTCs;

“Another challenge that I see is that if someone like this comes to take medicine, someone knows that maybe you have come to take AIDS medicine……. for example, when you enter here, people know very well that this person is going to take HIV treatment medicine (ARTs)… eenh of the unit, when it is not ARTs there are other preventative medicines (PrEP)” (P44, Age 24, Tanga)

They further revealed that the CTC building within the HCF compound is located in an open location where they can easily be spotted by anyone who knows them. Apart from the latter, participants outlined that their privacy is still compromised even after entering the CTC building, arguing that PrEP users and HIV-positive individuals all receive care in the same area or room. Their major concern is the fear of being identified by someone they know;

“The environment is bad because when we take PrEP in the same area where people with HIV are treated; that’s what they do." So if someone passes by from a distance, they will say you are in the same group, so I don’t like it. I’m not free. The interaction is good, but I don’t like it. Staying with people with HIV, even though we’re all humans. It might even happen that your person (referring to your man) saw you sitting there (CTCs); he will not care; he will perceive that you are already infected. Yes, they stopped giving you money for food. He ran away from you while you were there to take preventive medicine that protected him too.” (P43, Age 23, Tanga)

PrEP drug stockout.

Participants highlighted there is infrequent availability of PrEP in HCF and this discourages many from continuing to seek PrEP services. While other participants further describe that they visited the HCF up to twice-thrice attempting to either initiate PrEP or refill pills on all occasions they were told PrEP is not available;

“But we went there (HCF) three times, and each time we went, the medicines were finished. First, when we went, there were so many of us, so we found a long queue. When it was our turn, they told us the medicine was finished and we should return the following week. When that date arrived, we went and were told again to return on a certain date, but we did not go back” (P9, Age 17, Dar es salaam)

They reported that HCP informed them that the inconsistences in the availability of PrEP is due to the expired medications, and they were waiting for new drug stock and generally PrEP is scarce in the country, and they should patiently wait for them to be available.

Turned away by HCF.

Participants outlined that there are some few occasions that they run out of PrEP prior to their refill date, and they approached the HCP seeking pills but were denied without any regard for the time and transportation expenses they had incurred. The denial was primarily due to the fact that it was not a designated day for PrEP distribution or because they did not have a scheduled appointment. One participant recounts her experiences below;

“The day I went was not the day of those services. I was told to come on a certain day, and I actually went and was given care.I felt bad because I looked at the medicines, I had run out… .I had only one pill left. Since I knew the importance medicines are important, I felt bad for missing taking them(PrEP)” (P40, Age 22, Tanga)

Long waiting times.

The amount of time spent waiting for PrEP services at the HCF was a major concern for AGYW we interviewed. They described that the long waiting times were primarily due to a mismatch between the number of HCPs in the CTCs and the number of clients or patients they needed to serve. AGYW recounted experiences of long queues and instances where only one nurse was available to serve the CTCs. They also noted that the waiting times were particularly long during PrEP initiation, as this process requires screening and numerous tests before administering PrEP.

"I see that the services are not good, it is challenging, because there are delays in getting the service. The lack of nurses causes us to take a long time, but if there were more nurses, the procedures would be done more quickly" (P3, Age 17, Dar es salaam)

AGYW further uncovered that the waiting is exceptionally long when going for PrEP initiation, as they are required to be screened and run numerous tests before administering PrEP.

Distance to the HCF.

Several participants indicated that the proximity to the healthcare facility (HCF) did not pose a significant issue, either it was short, or they had access to several transportation choices, particularly when they had bus fares. There are instances in which some AGYW found to be without the necessary funds to pay for bus transportation. Consequently, they resorted to walking for a duration of between 45 minutes to 2 hours, depending on the distance, in order to reach the HCF. As a result, there were multiple occurrences in which the individuals had a delay in obtaining a refill of PrEP medication;

“There are those who get services in nearby places and there are those who come from distant places. There are those who spend even two hours on the journey just to reach the health center” (P5, Age 19, Dar es Salaam).

Additionally, AGYW delineated concern of accessing PrEP in HCF that are located within a shorter distance to their vicinity, with them being scared of being labelled and being identified as using PrEP;

“When you look at the environment, for example, I can’t be living here and go to the nearest healthcare facility to take PrEP, people will misunderstand me, you know?… .… .but going to healthcare facility far away it’s becoming normal here. Around hear (Place of residence) people will start to judge that I have started to eats HIV treatment drug (ART) and is not preventive medicine (PrEP)” (P20, Age 24, Dar es Salaam)

Personal facilitators.

Among personal facilitators for accessing PrEP services in HCF that were reported by participants in this study included experienced benefit of PrEP, accessibility of PrEP, adequate PrEP knowledge, having multiple partners, perceived risk due to the nature of the work and PrEP ensure privacy.

Experienced benefit of PrEP.

Several participants mentioned the experienced protective benefit of PrEP against HIV is what motivates them to continue utilizing PrEP;

“I just liked to use it because I love it and care a lot about my health. That is, I don’t want to get HIV infection. They (HCP) told me to use those drugs because they are good. They told me that according to the environment I live in, those drugs are good because I can have sex with a person with the HIV virus and I will be safe” (P8, Age 16, Dar es Salaam)

Adequate PrEP knowledge.

Several participants said that their utilization and access to PrEP were improved as a result of receiving adequate information about PrEP from HCP and friends;

"Mmmh… actually what attracted me was that I was satisfied with the information the doctor gave me while giving me medicine (PrEP), so I saw that it was the right way for me" (P14, Age 19, Dar es Salaam)

Having multiple partners.

Some of participants conveyed that their decision to adopt PrEP was primarily influenced by their engagement in sexual intercourse with many non-permanent partners. The participants expressed that the usage of PrEP provided them the ability to engage in sexual activity with several partners without being aware of or concerned about their HIV status, particularly in situations where their partner declined to use a condom. Many participants in the study acknowledged that their primary motivation for engaging in sexual relationships with multiple partners was the financial support they received. This financial incentive played a key role in shaping their relationship choices. One of the participants provides additional clarification in the subsequent section;

“"I’m motivated to continue using PrEP because I’m myself, that is, I don’t have one partner, Eeenh, that is, I don’t really have a permanent” (P37, Age 24, Tanga)

A few participants also pointed out that their access to PrEP services was facilitated by the fact that they have a relationship with people who are living with HIV, as explained by one participant;

"What convinced me was because I was living with a partner who was living with HIV infection, so I was convinced because there was an element that specifically says that the person who is supposed to use PREP is me who lives with a partner who is infected" (P51, Age 24, Tanga)

Perceived risk due to the nature of the work.

Certain participants employed in high-risk environments, such as bars, male saloon, and those engaged in sex work, have acknowledged that their perception of the hazardous nature of their work environment plays a role in shaping their inclination to continue accessing PrEP. The participants in the study indicated that they encounter situations at their workplace where they are enticed by financial incentives from clients. Consequently, they engage in sexual activities with these clients without being aware of their health status or utilizing protective measures such as condoms. Therefore, the utilization of PrEP serves to guarantee consistent protection in such instances;

“What led me to say let me use it is because of the work we do we encounter many challenges when we are at work, we meet people we do not know, and we cannot test them to know if they are sick or healthy. So, when I got the information about these medicines (PrEP), I was grateful because they protect me, then before using I checked my health and found that I was fine so I used it with confidence, and I know that I am using it to protect myself” (P9, Age 17, Dar es Salaam)

PrEP ensured privacy.

Several participants in the study expressed that the absence of a requirement to disclose the use of PrEP, like the use of condoms, served as a facilitator for their continued access to PrEP. The participants expressed difficulties in engaging in discussions regarding condom usage and HIV testing with the numerous short-term partners they encountered. Therefore, many perceive the use of PrEP to ensure ongoing safeguard against HIV in these particular situations;

“I can say these medicines (PrEP) are good because they give you the assurance of not getting an infection. The most interesting thing is that you can use these drugs even if your partner doesn’t want to, because you can use them without him knowing, this is completely different from other methods like using condoms because you both have to agree” (P6, Age 17, Dar es Salaam)

Support from social networks.

Several participants expressed it is the encouragement and influences that they get from their family members, friends and workmates that encourages them to continue accessing PrEP. Participants mentioned incidences where they received advice from friends to initiate use, to take the pills and reminder to go for PrEP refills from friends. Arguing the acquired support facilitated them to access PrEP services easily;

“I heard people were talking on WhatsApp groups only, they were to be talking and talking. So, to me I found someone, and I went and asked him to explain to me about this because she is an adult and I told him then it’s fine and I started using PrEP” (P32, Age 17, Dar es Salaam)

“but when I involved my friend, she encouraged me, I came back the next day and tested, and it was negative. That is when I found the strength to use PrEP” (P1, 17 years-Dar es Salaam)

Institutional facilitators.

Participants indicated that institutional facilitators encouraging their continued uptake of PrEP include the availability of the medication at no cost and the provision of refills.

Free availability of PrEP.

Some participants mentioned that the fact that PrEP pills and related services are available for free was viewed as an opportunity and motivated many to continue accessing care/services. As reported by one participant below;

“First, I saw that we are given for free, as well as that we are kept in a good environment of not being infected with the HIV virus whenever we have sex with an infected person” (P3, Age 17, Dar es Salaam)

Other participants revealed to them what facilitated to continues access PrEP was close proximity to the HCF;

I think it is easy and convenient to use PrEP probably because I am close to where I go to take my medicine. (P46, Age 20, Tanga)

Receiving refills reminders.

According to participants, receiving refill reminders from HCP or their peer educators helped them to remember accessing PrEP services in the HCF. They outline the phone calls and text reminders from HCP close to the date of refills or on the day of refills played a crucial role in enhancing their utilization of PrEP services;

“Something that makes it easier is sometimes they remind us of when the date is approaching, they call us. They send us a message as soon as the dates are approaching” (P15, Age 21, Dar es Salaam)

“There were still about three days left when I got a call, and he told me that the medicine was about to run out. If you’re going to be a while, come and pick it up, don’t wait until that date arrives, come pick it up, we’ll be there for you” (P46, Age 20, Tanga)

Moreover, other participants mentioned that having the clinic card that contains information about their next visits to the clinic also was served as a useful reminder to go to the HCF for refills.