Background
Methods
ECHO Trial overview and procedures
Oral PrEP provision during the ECHO Trial
Current study procedures
Ethics
Results
Characteristic | n (%) or median (range) |
---|---|
Median Age (range) (years) | 22 (18 to 25) |
Marital Status | |
Never married | 13 (100) |
Education | |
Secondary school (incomplete) | 5 (38) |
Secondary school (complete) | 5 (38) |
Post-secondary school | 3 (23) |
Lives with Partner | |
Yes | 1 (8) |
No | 12 (92) |
Earns own income | |
Yes | 4 (31) |
No | 9 (69) |
Reasons for initiating oral PrEP during the ECHO Trial
“The reason that [I] decide that I’m using the PrEP was just make sure my to be safe for myself … because I don’t trust my boyfriend most of the time.” (26 years)
Reasons for using oral PrEP | Quotes |
---|---|
Condom-related | |
Inconsistent or non-use of condoms Fear that condoms might “break” during sex | “I decide to use PrEP because most of the time when I’m doing sex with my partner we don’t use condom.” (23 years) “Uhm I decided to use PrEP because uh sometimes uhm as we are teenagers let me uh just not say we teenagers, like we [are] girls … We don’t like condoms” (22 years) “My decision to use PrEP … is in order to protect myself because we know that you can use your condom but it’s not 100% sure it can break.” (24 years) |
Partner related | |
Does not trust partner Partner is unfaithful | “reason that decide that I’m using the PrEP was just make sure my, to be safe for myself … Because I don’t trust my boyfriend most of the time.” (26 years) “the reason why I decided to use PrEP it’s because they said it will prevent HIV even if your partner is not faithful” (29 years) |
To prevent/protect oneself from acquiring HIV and/or to feel safe | “because I saw the whole benefit of it [PrEP] … it help you to prevent HIV and AIDS” (26 years) “I want to be to be protected that’s why I decide to use PrEP” (23 years) |
Gender stereotypes | “You cannot cannot trust anyone in this world especially mens you cannot trust them … those people go around sleep with everyone” (27 years) “boys they playing so much … And so I decide to take PrEP” (26 years) |
Engaging in risky behavior | “I like enjoying party, so you know what happened (laughs) we got drunk … Sometimes they new people, you know one night stand … I sleep with maybe two … two different guy[s] in the one day” (28 years) |
Planning for pregnancy | “I think for the future reason … I also need to prevent [HIV] … because … I don’t want to to infect my child once I’m get pregnant” (30 years) |
Other | “Okay coz I came here [to research site] and then you’ll introduced me to PrEP and you’ll told me like the good and the bad about it, and I decided to take it coz it prevents you from being affected and it helps you … You may never know you might get raped someday you can never plan for HIV (laughs) … I need to make sure that like I don’t have, if I were to get affected it must be like not on purpose like accidently like when we getting raped or getting like, I don’t know how else you get (laughs) HIV (laughs)” (27 years) |
Disclosure of oral PrEP use
“I told them [cohabiting family members]. People were like, they were proud of me [for taking PrEP], they thought that I was like, that was a good thing to do and that that is a mature thing to do.” (27 years)
Oral PrEP continuation and use post ECHO Trial exit
Oral PrEP adherence post ECHO Trial
“[I]t is difficult I won’t lie because sometimes you forget and sometimes … you go to work and forget them at home.” (24 years)“Maybe if I’m going out with my friends … I don’t take it [oral PrEP] sometimes … maybe I’m scared if they were saying how I’m eating [why am I taking pills] … But when I’m at home I’m actually make sure I’m drinking [taking PrEP].” (26 years)
“I’m not forgetting to [take] the pills … my [family member] is HIV positive … so when they, when my [family member] take that pills and I will take mine [PrEP pills].” (28 years)
“[H]e [partner] was sharing it [PrEP] … I give him one bottle [of PrEP tablets] … When I’m going to his house, I’m using it [PrEP tablets] and he’s also using it [her PrEP pills].” (27 years)
Barriers to post-trial oral PrEP access and continuation
“The problem is that the clinic near my home … they have long lines so … I can’t wait … there’s a long queue to get in the clinic … that’s why I stopped taking it [oral PrEP].” (23 years)“The place to take [collect] the PrEP which was far from home … that’s why I didn’t take it … it was difficult because I had no money … it will take 2 taxi … I think it was uh ZAR100 [approximately USD6] return.” (26 years)
“I stopped using PrEP after the study ended because it’s very difficult to get PrEP. Most of the clinics they don’t have it.” (27 years).
“They [PrEP provider at clinic] don’t do their job properly … like when I’m talking to you [research staff] it’s confidential … They [PrEP provider at clinic] don’t keep that that thing, they shout, “[name of person], come here” and tell you this and this and this about the patient. I’m here, that … don’t make me comfortable.” (27 years)
Facilitators and barriers to oral PrEP access after exiting the ECHO Trial
“It’s [the clinic] just a walk it’s not far you don’t have to take a taxi there.” (24 years)“It [collecting PrEP] was quite quick, quick and easy. There wasn’t any queue.” (30 years)
“Yes I did [take the referral letter to the clinic] … other than that they [clinic staff] wouldn’t accept me or what they will have to ask me some more questions.” (24 years)
“I think PrEP is now like exposed in many clinics … our clinic … they give a lot of information about it [PrEP]. They teach about it [PrEP], like everything. Every morning if someone goes to our clinic it will be the same thing every morning they update … they always give updates about PrEP.” (24 years)
“At the clinics they don’t attend us well … they don’t treat us they don’t trust us treat us like you do here [at the research site]. Sometimes we are not comfortable sometimes the nurse will shout at you so you end up not having appetite to go and fetch the uh PrEP at clinics.” (26 years)“It’s hard because eh the queue is long you have to stay three hours to four hours waiting for you to call you ... you had to wait three hours because you are in the same queue with the people who are sick, with the people who are going to do this and that.” (24 years)“I work every day. I only get one [day] off and the off I get it’s on weekends the clinics are closed.” (24 years)
“But was struggling to get it [oral PrEP] because it [PrEP facility] was far … there by [name and location of PrEP facility] … Yes it was far for me to go there when I try to go get it here when it was down here [different PrEP facility] … they said I must go and get a referral letter. So I wasn’t happy to get one [referral letter] again.” (30 years)
“Ja it was my decision I just I decided to just stop I don’t know why.” (29 years)
Integration of oral PrEP with other services
Interviewer: “And tell me do you get all this [family planning, HIV testing, primary health care services] at the same place where you get your PrEP, so your family planning and your HIV test, is that done there or is it done at a different place in the clinic?”24-year female: “Everything has its door. There is a door for testing, there is a door for family planning, and there is a door for pills collecting.”Interviewer: “Okay … So it’s different people that do each of these things?”24-year female: “Yes.”
Family planning access post-trial exit
HIV testing post study exit
Interviewer: “Okay did you do HIV testing afterwards [after the study ended]?”26-year female: “Yes, I did.”Interviewer: “Where did you test?”26-year female: “At the clinic at the other side but they didn’t tell me about PrEP.”
Future PrEP use
“Yes I couldn’t get transport … So it was not easy to me to come back and go there … the transport is far so there I was stopping to eat PrEP … but if you can say I can go to fetch PrEP I can even go if there is a transport I can go to fetch PrEP.” (26 years)
Suggestions to improve PrEP services
Suggestion(s) | Quotes |
---|---|
Increasing awareness and knowledge about oral PrEP among users, and increased availability of oral PrEP | “People will get education more and more and more about it [PrEP] like I think from clinics they need to be sent the PrEP, needs to go the clinics and then those, the nurses need to tell people about it … in the clinics they need to educate people about it … Even old people, tell them about it, they’ll go home and they’ll tell their children and the news will go on like that like that” (27 years) “That they should like … maybe they should tell the nurses at the clinic like that PrEP should be everywhere, educate people at the clinics. You see like condoms, every clinic has a condom. So every clinic should have uh PrEP.” (27 years) |
Increasing knowledge and awareness about oral PrEP among providers | “Like there’s this like clinic, they [clinic staff] didn’t even know about it. I was like no, I had to google it, I was like “this here” [showing clinic staff]. They [clinic staff] like, “No, we, we don’t have that here.” (27 years) |
Reduction in waiting queues and/or separate queues at the clinic for oral PrEP | “I think at the clinics they should provide the place if you come at the gate … some certain like uh uh it’s uh sort of a timetable … if you are going for PrEP you go that side, if you are going for this you go this side, so it will be easy for you if you go to the clinic if you know uthi (isiZulu word -says) you are supposed to [go to] that door rather than standing in one queue with the people who are go have different places with you” (24 years) |
Availability of longer-acting PrEP modalities | “Maybe if they can be injections, not pills … maybe people can more women can try … can do PrEP because it’s hard to take a pill everyday (sighs) … It’s hard it’s kind of hard” (29 years) |
Integrating oral PrEP delivery | “Pharmacies, they can also give PrEP because it will be easy if you have a a pharmacy next to you, you can go there and look for PrEP … even if you are at work, you you don’t have PrEP at that time, you can go to the clinic [at the pharmacy] and ask for PrEP” (24 years) |
Reminders for clinic appointments | “Maybe if there could be another place that’s based on that where they gonna call and remind you, “Do you still remember you have to come and take PrEP?” Yes because sometimes we have a lot of things we that we are doing … we go to school we are working we have to go home and all those thing maybe you even forget … you even forget your date” (27 years) |
Provision of oral PrEP in a research / trial setting | Interviewer: What do you think would make it easier for women to get PrEP when studies finish? 27-year female: It’s to continue with the study … It’s to continue with the study. That’s what I can say … Very easy and comfortable [to get oral PrEP as part of the study]. We always feel like free. Here it’s, it’s more like you were going to your own personal doctor “I don’t know how it can happen if we can have like, like uh study that basically for PrEP like how you [research site staff] uh get hold of us try to get hold of more women get them here make them sit down like how you sat down with us [ECHO Trial participants] and tell them about the PREP maybe it’s gonna make a difference. Maybe after like uh uh three months or six months you can refer them to a clinic. Then a person is used to the se uh side effects and they know what they are doing then they can for sure you can go to the clinic this will take it when someone sat you down and told you about it. (24 years) |
Clinics to provide PrEP after-hours or on weekends | “It will be easy, especially weekend time [for clinics to provide oral PrEP] … Some people they work, they are working during week” (27 years) |