Skip to main content
. Author manuscript; available in PMC: 2022 May 1.
Published in final edited form as: J Acquir Immune Defic Syndr. 2021 May 1;87(1):e150–e158. doi: 10.1097/QAI.0000000000002625

Table 2:

Interplay of person, interpersonal, facility, community factors discouraging continuous PrEP use

Summary Abbreviated Narrative of reasons for stopping PrEP
Side effects, not physically living with partner [With PrEP], I used to feel dizzy and loss of appetite. I called him [health care provider] and talked to him about the side effects. He encouraged me to continue taking it and he recommended me to go back two months later then he gave me another two tins…… I took one tin and then I lost my weight completely. I stopped taking it from that time. I have one tin that I did not take, then my husband is not in Kenya, he is in Uganda and we don’t meet. 27-year-old Female
Pill burden, stigma of CCC The pill is so big and it chokes, so I found it so difficult….. [W]e were getting it together with those who are HIV positive and there was a lot of stigma. You see that people really stare and once you are there, it makes you to be so afraid because it makes you feel that everyone is now aware that you are HIV positive too. So I feel that PrEP should be delivered in a different side that is not the CCC. I feel that, that would be very nice. 29-year-old Female
Wait time burden, relationship stress due to infidelity, no sex with partner Sometimes I would get there [CCC for PrEP] at 10:00 AM and leave at 2:00 PM and that was the problem…...I didn’t like that because I wanted get there, get my refill and leave and not have to wait like the rest……I used to trust my husband but when he started telling me about himself, I got upset. I told him that I didn’t want PrEP. I had trusted him and he was doing such things [seeing another woman]. It made me stop using PrEP again even after I had decided to use to save my children’s lives but he wronged me…. …When my husband is around, we are never together (sexually) because he stays for 3 days then he leaves 22-year -old Female
Motivation to overcome side effects, temporary partner separation I was using because I loved her that was the only thing… I think I would have gotten used to the side effects…You see taking PrEP it starts with motivation…it is not just because you are engaging in sex with a person who is infected but because you love that person because if you don’t take them you won’t love that person and there will be a chance of you getting the virus… I will resume PrEP [when partner returns] 24-year-old Male
Pill burden, relationship breach of trust demotivating, drugs stigmatizing I have never been subjected to long-term drugs and that thing disorganized me terribly and that is why I stopped. There were no side effects but I have always had problem with taking drugs, you better give me an injection. I decided to stop PrEP because that thing was traumatic to me. Imagine you are just starting your marriage and then all of a sudden within a short period of time…what kept me in that marriage up to now is that the lady was pregnant and I had thoughts of leaving her. The baby is the only reason why I have kept her around…. those drugs are big and they are of the same size and you cannot differentiate because one day…there was one time I travelled home in April, I was hiding my small bag so that someone should not come across them and you know the society that I am from. I was worried for someone to see them 34-year-old Male
Partner discourages PrEP use, stigma CCC I decided to stop using PrEP for two reasons…. I stopped using PrEP because I did not like the delivery point for PrEP, because we were being mixed with those who are HIV positive... But the bigger reason why I stopped using PrEP was because of my partne … My partner was never happy each time that I took PrEP… I think he would only feel happy if both of us are HIV infected. So when I disclosed to him that I had tested and I was HIV negative and so the doctors opted to initiate me on PrEP, that made him unhappy..…Each time that I took PrEP he would insult me and quarrel a lot…. He would insult me that I am a prostitute, that I am stupid or even that I am boasting that now I am HIV negative and he is not. He used to have so many insults that would vex my spirit and that made me to decide to stop using PrEP because all along he had been taking his ARVs and I had not been infected with HIV. So I felt that still, I will be safe even if I stop using PrEP. 24-year-old Female
Facility distance inconvenience/cost, side effects, not with partner I started getting effects from the medicine. …I was vomiting a lot and I was not feeling well. …………I haven’t seen my partner for a while, she travelled to another town….I do meet [other partners along the transport route] but I stopped taking PrEP because of vomiting…. I used to come to the clinic but it’s too far from home, so I used spend a lot of money on transport, so I wish there was a place closer where I could pick it and even getting medication for the side effects would be better… 27-year-old Male
Daily pill burden, pill stigma, condom preference, virally suppressed partner The main reason why I stopped using PrEP is because it is something that is difficult to take especially if you are not sick but still it forces you to take it daily. Again I had already gotten whatever I wanted…yes, my objective was to give birth to a HIV negative baby and that was pushing me to use PrEP. So once I had already achieved that objective, I decided not to continue taking it. ….Okay another thing is that I had to carry it with me everywhere that I went and some people who were close to me were wondering what kind of drug I was taking. Another thing its color is like the regular ARV so some people talked badly about me, but okay because I knew what I wanted, I just continued taking it…but carrying it with me and taking it every day was something that I did not like. I stopped using [PrEP] because he told me that he is now virally suppressed and that was why I did not see the need to continue using PrEP because I can still as well use condoms and all will just be well…..I am just comfortable with that. 32-year-old Female
PrEP stigma, partner and family opposition, end of relationship I decided to use PrEP because I saw it on social media and learnt that it could help me not get HIV …….Despite of me having one boyfriend I don’t know if he has other girlfriends. So that’s why I got motivated to go for the drug to reduce my chances of getting HIV. …. [I] am staying with my parents and am also a student, so when I was going to work and my sister was cleaning the room, they came across the drug and went and discussed with my parents…..So when I came back in the evening, I was called and it was like a meeting meant for me and I was the agenda. And I was asked why I was using PrEP…… They even told me to tell them if I was HIV positive and I told them I am not and I was using PrEP to help me reduce chances of getting HIV…..So my dad and mum started saying that am a prostitute and that the drug is used by prostitutes and that’s why am using it…..So it was that much and I decided that I would get consolation from my boyfriend and I went and shared with him, but he also became mad at me …..So he said if it’s PrEP then it means that I have multiple partners and I do not trust him. So he couldn’t tolerate it and he started a fight and even said that if it’s about PrEP we better end the relationship because it was clear that I have multiple partners….So when I came back I had a lot of stress and everybody was against me at home. People were saying I am HIV positive, my boyfriend dismissed me so I had no peace of mind. And that’s how I decided to stop PrEP…. He’s no more in my life. …if awareness is created so that people like my parents get to know that it’s taken by people who are negative then I will [restart], and then another thing if I can move to my own place where I can just keep it without anyone interfering with it the I will just continue using it. 19-year-old Female
Side effects, stigma, partner opposition, relationship end Taking pills every day is a problem, that was the big issue because itching of the body, vomiting. I was told they would go with time, depends on one’s hormones. But taking pills every day, I felt was hectic because sometimes I forgot to take it.….. The package is very bad. It’s like… one day I carried it and I was with my boyfriend, we started fighting because he didn’t realize the difference between them and ARVs. Until now, we are separated with that man because of that, he doesn’t want to listen to me, he thinks that I’m on ART while actually I’m on PrEP, so that package annoyed me.…… I really persevered during those two months because I had a partner whose status, people used to say he’s positive. So, when I broke up with him, I decided now to hell with the PrEP. … [Now] I’m not seeing anyone. If I start seeing someone, first of all we have to be tested…. and we start using PrEP, both of us. So that there is no blame game. 26-year-old Female