Episodic Use of Pre-Exposure Prophylaxis Among Young Cisgender Women in Siaya County,Kenya

Abstract

The concept “seasons of risk” promotes use of pre-exposure prophylaxis (PrEP) only during periods of HIV risk. PrEP guidelines are aligned on daily use in women having vaginal sex during a risk period, and daily use for 28 days after the last potential exposure is recommended. However, when starting a “season of risk,” guidelines vary on “time to protection,” and unknowns remain in pharmacological research on PrEP protection in this population. During our iterative research on PrEP persistence using photovoice and in-depth interviews, we identified an ineffective pattern of PrEP use based on current guidelines—that is, routine, episodic use—among young cisgender women (YCW) in Siaya County, Kenya. Through same-group (n = 33 participants) and mixed-group (n = 31 participants) photovoice activities with YCW taking PrEP and female peers, participants explained that YCW associate their HIV risk with the sexual behaviors of their male partners who frequently travel from home. PrEP is considered unnecessary when partners are away because of no perceived risk. YCW re-start PrEP on or around the day of their partners' return because of heightened risk perceptions. Among the YCW interviewed (n = 18), nearly all of their partners traveled for about 1 week to 1 month at a time; about one-third of these women reported stopping PrEP during their partners' absence and re-starting it soon before or immediately upon their partners' arrival home. Additional research is critically needed to better inform PrEP guidelines and the decisions adolescent girls and young women make on how to use PrEP based on their risk context. In the interim, counseling on current dosing guidance when stopping and re-starting PrEP within a “season of risk” is needed.

Introduction

Adolescent girls and young women (AGYW) in sub-Saharan Africa remain disproportionately affected by HIV even within the context of declining new HIV diagnoses globally.¹ Among youth aged 15–19 in sub-Saharan Africa in 2020,¹ adolescent girls accounted for six of seven new HIV diagnoses, and twice as many AGYW aged 15–24 were living with HIV than men. During the same year in Kenya, AGYW 15 years of age and older accounted 58% of new HIV diagnoses and almost two-thirds of people living with HIV.²

Siaya County, Kenya—the location of our research—had the highest HIV prevalence in Kenya and the third highest number of new HIV infections in 2017.³ Because of this heightened risk, the Kenyan government identified young women as a priority population for scaling up pre-exposure prophylaxis (PrEP) and recognized Siaya County as a key focus area.⁴

Oral PrEP can substantially reduce the risk of HIV acquisition in women,⁵ yet its effectiveness as an HIV prevention tool depends on whether AGYW are aware of PrEP and use it as directed for as long as their risk persists. Research has documented high PrEP awareness among AGYW in Kenya⁶ and that PrEP adherence and persistence is challenging for many people, including AGYW in sub-Saharan Africa.⁷ The high rates of PrEP uptake among AGYW in some open-label studies and local programs in sub-Saharan Africa^8,9 may suggest high interest in initiating PrEP.

However, research in Kenya has also shown low PrEP uptake among AGYW aware of PrEP,⁶ and in the HPTN 082 open-label study of young women initiating PrEP in South Africa and Zimbabwe, adherence declined after 3 months of use.⁸ In addition, the Determined, Resilient, Empowered, AIDS-free, Mentored and Safe (DREAMS) partnership has demonstrated feasibility in providing PrEP to AGYW in Kenya¹⁰ and reported a reduction in new infections among AGYW in DREAMS areas,^11,12 including Kenya;¹³ however, some DREAMS sites report limited evidence of an effect among young women,^14
–16 suggesting that ongoing challenges with PrEP adherence and persistence remain.⁹

The effectiveness of oral PrEP is influenced by individual patterns of adherence. Scientific evidence and guidance are aligned on daily dosing of PrEP for cisgender women who have vaginal sex;^17
–19 higher adherence and drug concentrations have also been reported with daily versus non-daily dosing among African women.¹⁹ However, findings from pharmacological research differ on the “time to protection” for this population,^20
–22 and hence available guidance varies. Guidelines from the Centers for Disease Control and Prevention (CDC), which are intended for United States clinicians, suggests 20 days of daily PrEP as the “time to protection” for vaginal sex,¹⁷ whereas the World Health Organization (WHO), which focuses on global audiences, suggests 7 days of daily PrEP.¹⁸

The WHO also suggests that individuals: (1) consider post-exposure prophylaxis if they believe they have been exposed to HIV before protection from PrEP is reached, (2) can discontinue PrEP when they are no longer at risk for HIV and their new no-risk environment can be sustained over time, and (3) take PrEP for 28 days after their last potential exposure to HIV, similar to post-exposure prophylaxis.^18, ^*

Given the dynamic nature of sexual behavior, oral PrEP works best when used in alignment with changing risk.²³ The concept of “seasons of risk”²⁴ emerged as a way for people to visualize and use PrEP based on their perceived HIV risk, acknowledging that PrEP is not a lifelong medication, such as HIV treatment. Following the approach, people take PrEP as directed throughout a time period when they feel at risk—typically a few months up to a few years—and then stop taking PrEP when they no longer feel at risk—for example, the reason they initiated PrEP is no longer present.²⁵ Based on WHO and/or CDC guidelines,^17,18 effective implementation of “seasons of risk” in AGYW could be interpreted as taking PrEP daily for 7 or 20 days, respectively, before an anticipated period of risk (i.e., when a new season starts), throughout the entire period of risk, and for 28 days after the last potential exposure.^*

We discovered an ineffective pattern of PrEP use based on current guidelines—that is, routine, episodic use—among young cisgender women (YCW) in Siaya County, Kenya during our community-based participatory research to identify multi-level factors influencing PrEP persistence among YCW. Episodic or event-driven use of PrEP—taking it only on or around the days when HIV exposure may occur and not daily throughout the risk period—has been shown effective in men who have sex with men;²⁶ however, episodic use may diminish PrEPs effectiveness among AGYW, although pharmacological research among AGYW is limited. In this article, we describe how we identified and further explored this pattern of PrEP use during our research and share young women's narratives illustrating episodic use of PrEP.

Methods

We used an iterative data collection approach combining photovoice with in-depth interviews (IDIs). Photovoice is a community-based participatory research method where community members use photography, stories, and critical reflection to identify, describe, and discuss community concerns.^27,28 Participants take photographs and write descriptions to communicate the relevance of the image in the photograph, share their photographs and stories about the images with others, and collectively discuss and examine factors influencing the images.

Study participants included YCW in Siaya who had access to and had taken PrEP through the DREAMS initiative implemented by Impact Research and Development Organization, a Kenyan non-governmental organization. As part of our larger study, YCW and four groups representing people in young women's social ecology—female peers, male peers and partners, adult family members, and community members—were purposely selected²⁹ to participate in two or more iterative data collection activities.

In this article, we focus on data from two participant groups: YCW taking PrEP and female peers not taking PrEP who were engaged in other DREAMS programs or were friends with young women in the DREAMS PrEP program. All data collection activities were implemented between August 2019 and June 2020, conducted in Luo or Kiswahili, audio-recorded, and simultaneously translated and transcribed.

In the initial data collection activity, YCW were asked to take pictures that visually depicted the reasons why young women stop taking PrEP for a short period of time, such as a few days or weeks, but plan on taking it again; female peers were asked to take pictures of situations where young women feel they no longer need PrEP but are still at risk for HIV. Participants in both groups then selected one photograph that best represented the overall assigned concept and wrote a brief description explaining the image's importance to PrEP persistence among young women.

Working with study staff as needed, participants used worksheets with the following SHOWeD method prompts to develop their description: (1) What do you see here? (2) What is really happening here? (3) How does this relate to our lives? (4) Why does this situation, concern, or strength exist? (5) How could this image educate others? (6) What can we do about it? Participants then met in groups within their own participant group (YCW met with other YCW, and female peers met with other female peers, referred to as “same-group discussions”) to share their selected photographs and discuss the meaning and significance of the photographs, with facilitators using the SHOWeD prompts to encourage discussion.³⁰

After the same-group discussions were completed, we reviewed participants' photographs and descriptions and the discussion transcripts. We identified a range of factors that participants said influenced PrEP persistence by grouping together similar narratives. Using a matrix-based approach, we examined the range of factors described across all participant groups and identified similar factors mentioned by one or more participant groups. We then selected participant groups who had identified similar factors to meet together for the subsequent “mixed-group discussions” (e.g., group discussions between YCW and female peers) to uncover root causes and shared perceptions.

Routine episodic PrEP use was not a topic we initially explored with participants; it emerged during the discussion of photographs within two participant groups only—YCW and female peers—in response to the broad photo assignments intended to explore factors influencing oral PrEP persistence.

During the mixed-group discussions, YCW and female peers met together to share and discuss each other's photographs and descriptions of themes that emerged during the first data collection activity (i.e., the same-group discussions). We selected representative participant photographs illustrating episodic use to be discussed, with participants' permission. We also asked participants additional questions specifically on episodic use so we could further understand the context, such as perceived frequency of episodic use among young women and how easy or hard it would be for young women to take PrEP daily for 20 days before potential HIV exposure.

After the mixed-group discussions were completed, we rapidly reviewed the transcripts to confirm that episodic use was, indeed, perceived to be practiced among young women before conducting the final phase of data collection: one-on-one IDIs.

During the IDIs, YCW were asked to share their own perceptions and experiences with several of the themes identified during the same-group discussions. Using a photo-elicitation technique,³¹ we showed participants selected pictures with images representing episodic use (from the initial data collection activity) as prompts to explore participants' individual patterns of PrEP use. Questions on episodic use explored whether their regular partners traveled away from home and, if yes, for how long; if they ever stopped taking PrEP when their partners were gone and the reasons why; and how easy or hard would it be to take PrEP for 20 days in advance of their partner's return home.

We used applied thematic analysis³² to formally analyze participant narratives from the same-group discussions, mixed-group discussions, and IDIs. Each data collection activity was analyzed separately using the similar analytical approaches. Analysts first applied structural codes to the data using NVivo³³ to segment participants' narratives on topics related to episodic use, followed by content codes to capture participants' specific comments and experiences with each topic.

Inter-coder reliability checks were conducted, and modifications were made to the codebooks and previously coded transcripts based on discussions on code application. After coding was completed, matrices were created to explore the salience of concepts, followed by analytical reports summarizing the main themes, together with illustrative quotes.

The Maseno University Ethics Review Committee in Kenya and the Duke University Health System Institutional Review Board in the United States approved the research. All participants provided their written informed consent and permission for their photographs to be used for research purposes.

Results

Study population

Overall, 33 participants (19 YCW in the DREAMS PrEP program and 14 female peers) participated in the photo assignments and the accompanying same-group discussions; 31 participants (17 YCW and 14 female peers) participated in the mixed-group discussions; and 18 YCW participated in the IDIs. Participant demographics are listed in Table 1.

Table 1.

Participant Demographics

Baseline variables^a	Data collection activity and participant group
	Same-group discussions		Mixed-group discussions		Interviews
	YCW (n = 19)	Female peer (n = 14)	YCW (n = 17)	Female peer (n = 14)	YCW (n = 18)
Age, years
Mean	22	22	23	22	23
Median (range)	23 (20–24)	22.5 (20–24)	23 (20–24)	22.5 (18–24)	23 (20–24)
Marital status
Not married and not living with a partner	3 (15.8)	6 (42.9)	3 (17.6)	6 (42.9)	3 (16.7)
Not married and living with partner	1 (5.3)	0 (0.0)	1 (5.9)	0 (0.0)	1 (5.6)
Married and not living with partner	1 (5.3)	0 (0.0)	1 (5.9)	0 (0.0)	1 (5.6)
Married and living with partner	13 (68.4)	8 (57.1)	11 (64.7)	8 (57.1)	12 (66.7)
Widowed	1 (5.3)	0 (0.0)	1 (5.9)	0 (0.0)	1 (5.6)
Education, highest level
Some primary school	6 (31.6)	0 (0.0)	4 (23.5)	0 (0.0)	5 (27.8)
Completed primary school	7 (36.8)	5 (35.7)	7 (41.2)	5 (35.7)	7 (38.9)
Some secondary/high school	2 (10.5)	4 (28.6)	2 (11.8)	4 (28.6)	2 (11.1)
Completed secondary/high school	4 (21.1)	5 (35.7)	4 (23.5)	5 (35.7)	4 (22.2)
Main occupation
Market/street vendor	9 (47.4)	1 (7.1)	8 (47.1)	1 (7.1)	8 (44.4)
Bar, tavern, club, hotel employee	1 (5.3)	0 (0.0)	1 (5.9)	0 (0.0)	1 (5.6)
Agricultural work	1 (5.3)	1 (7.1)	1 (5.9)	1 (7.1)	1 (5.6)
Student	1 (5.3)	0 (0.0)	1 (5.9)	0 (0.0)	1 (5.6)
Housewife	4 (21.1)	2 (14.3)	3 (17.6)	2 (14.3)	4 (22.2)
Not employed (non-student, non-housewife)	2 (10.5)	2 (14.3)	2 (11.8)	3 (21.4)	2 (11.1)
Self-employed, not agricultural work	0 (0.0)	5 (35.7)	0 (0.0)	4 (28.6)	0 (0.0)
Other^b	1 (5.3)	2 (14.3)	1 (5.9)	2 (14.3)	1 (5.6)
Missing	0 (0)	1 (7.1)	0 (0)	1 (7.1)	0 (0)
PrEP use, No. of months
Mean	12	n/a	13	n/a	12
Median (range)	9 (3–26)	n/a	12 (4–26)	n/a	11 (3–26)

Data presented are the mean, median (range), or n (%). Percentages may not total 100% due to rounding.

YCW reported “peer educator among fisherfolk”; female peers reported “house wife” and “house help.”

PrEP, pre-exposure prophylaxis; YCW, young cisgender women.

Photographs and same-group discussions

During the same-group discussion of photographs, both YCW and female peers stressed that young women in Siaya County are at risk for HIV primarily because of their male partner's sexual behaviors. Consequently, they explained that young women link the need to take PrEP with their partner's physical presence. Many of the images captured to represent the photo assignments focused on an episodic use pattern of young women not taking PrEP when their partners were traveling away from home for weeks to months at a time for work and then re-starting PrEP on their partner's return home (Table 2, Images A–D). Participants explained that young women are unaware of their partners' sexual behaviors when away and want to take PrEP when partners return, because they now feel an increased risk for HIV.

Table 2.

Participant Photographs, Descriptions, and Quotes from the Same-Group Discussions

Topic	Photograph	Participant description and quotes
YCW stop taking PrEP when partner is traveling away from home; YCW start taking PrEP when partner returns home	Image A	“That is a photo of my husband's trousers. It was washed and hanged on the line…he puts it on when going out. He works outside town. So, when he is not here, it makes me stop taking PrEP, even for 2 weeks. When he comes back, I just take them because maybe he might be having affairs wherever he has gone to. I don't know his (HIV) status….” —A 24-year-old YCW who is married and living with her partner
	Image B	“That is the trouser of my husband. When he is away, I don't take PrEP. When he is around, then I take PrEP…I do not know his status…I do not [know] how he moves around.” —A 24-year-old YCW who is married and not living with her partner
	Image C	Participant 1: “That is a jacket aired on top of a tree. This jacket, it's for my husband. He is always not here…he is always away. He comes back on a monthly basis. So, when he comes back is when I take medicine. If he is not in, then I don't take.” —A [different] 24-year-old YCW who is married and living with her partner Facilitator: “Thank you. When he comes back is when you start taking medicine?” Participant 1: “Yes.” Participant 2: “If that is her husband who works away from home and he comes back monthly, then they must always be communicating over the phone. Sometimes if he tells you that, you know very well the exact date when he can come or you know the dates that he always come. So, whenever he is about to come, then you start taking it before, so…that drug is already used to your body…if you have always been using it. You do not need to wait until the day he comes because he can come on that very day and demand for sex on the very same day, the same night and yet, it is when you were planning to take the drug, so that cannot help.” —24-year-old YCW who is widowed
YCW start taking PrEP in advance of their partner's return home from traveling	Image D	“It is related to our lives because that motorbike is what my husband uses to go for travelling. He is a person that builds, so at times he goes. He has gone for work very far at times. He goes for one month…So, at the time when he is there [i.e., away from home], I don't use PrEP. When he comes back—when I know that he is almost coming back—then I can use PrEP for a week…When he has travelled for work, I have taken care of myself in the house, there's not any [other] partner that I have, but when he is coming back is when I don't know how he has been outside. That is why I must now stop using PrEP when he is not here and when he is here, I use PrEP… We can educate other people, more so young women who have had husbands, at the time when your husband is out or is working outside, you have known your status here in the house, and know that ways of contracting HIV are low, so you can break a bit [from taking PrEP], and when he comes back, when he has alerted you that he is going to come back, you start taking it a week before he comes back.” —A 23-year-old YCW who is married and living with her partner Contribution on photo from another YCW: “It is a good thing to continue using PrEP, even when your husband is not around because he can catch you unaware. He can promise you to come next month and you get shocked when he comes within one week, before the weekends, and he gets you when you have not continued [with PrEP]. So, it is good for you to just continue using PrEP even when he is absent or present.” —A 22-year-old YCW who is married and living with her partner
YCW take PrEP when going to visit partner	Image E	“That photo, those are my female friend's shoes. That friend of mine, she has a male friend, so at the time when she is going to visit her male friend, she takes PrEP drugs and when she is not going to visit her male friend she doesn't take PrEP, showing that she can contract HIV.” —A 22-year-old female peer

PrEP, pre-exposure prophylaxis; YCW, young cisgender women.

For most narratives, participants simply stated that women re-started PrEP when their partners returned home; however, a few participants described taking PrEP before their partners' return, such as a week or a month in advance, or they generally noted the need to take PrEP in advance of a partner's return without describing a specific lead-in time (Table 2, Images C, D). In Image D, a YCW explained that she takes PrEP 1 week before her partners' planned return date and stressed that young women in her community must receive education about the need to take PrEP in advance of their partner's return.

Some YCW also mentioned planning for their partners' return. In discussing Image C, a YCW described that young women may have advance notice of their partner's return and therefore can take PrEP before their partner returns home, without specifying a lead-in time; however, when discussing Image D, another YCW stressed that uncertainty exists over when partners may return, making it difficult to take PrEP sufficiently in advance. For this reason, several YCW suggested that young women should take PrEP continuously when their partners are away.

A female peer described another example of episodic PrEP use that was unrelated to partner travel. This participant explained that her friend, a young woman, only took PrEP when she was visiting her sexual partner. The participant implied that taking PrEP in this way put her friend at risk, because she was not taking PrEP sufficiently in advance (Table 2, Image E).

Mixed-group discussions

During the mixed-group discussions of emergent concepts from the same-group discussions, YCW and female peers reported that it was a common and recurrent pattern for young women in their communities to stop taking PrEP when their partners leave home for a few days to several weeks and re-start it when their partners return (Table 3, Section 1). Similar to the same-group discussions, participants elaborated that young women perceive themselves at low risk for HIV because their partners are away, making PrEP use unnecessary. On their partners' return, participants described that young women feel a sense of uncertainty about their partners' sexual behaviors while away and feel at risk, which then accentuates the importance of taking PrEP at that time.

Table 3.

Participant Quotes from the Mixed-Group Discussions

Section: topic	Quote
Section 1: Frequency of episodic PrEP use	“It can happen often because…when men go to work, they always go to far places and they take a long time…the day he comes back is when you will start taking drugs.”—A 23-year-old YCW who is not married and not living with a partner
	“Young women take PrEP often when their husbands are around because they know that is when they are at [more] risk of getting HIV [than] when their partners are not around…They know that they [i.e., young women] are responsible and cannot contract HIV infection [when partner is gone] and they stop taking PrEP.”—A [different] 23-year-old YCW who is married and living with her partner
	“It happens often because every time when her male friend is not around she doesn't take, and when he is around, she takes it.”—A 24-year-old female peer
Section 2: Assumptions during 20-day lead-in period	“They would not be willing because sometimes you were taking PrEP when your husband wasn't aware, [he] will want to have sex with you, and [if] you will refuse, he will ask you that, ‘why don't you want me to have sex with you, is there someone that you have gotten outside?’ So this can bring chaos in the house. So, I feel that the twenty days are too much.”—A 22-year-old YCW who is married and living with her partner
Section 3: Pill forgetfulness without partner physical presence	“That happens more often (i.e., forget to take PrEP). It happens more often because when a man is the one that reminds you that you should be taking drugs, and when he is not around, you will stop taking drugs…you will forget taking drugs for longer periods of time, until the day that he will come back.”—A 24-year-old YCW who is married and living with her partner
	“When their husbands are around, they [i.e., women] do maintain taking PrEP… because you know that your risk of contracting HIV is high. But when he is not around, you can forget taking PrEP, because you know that your risk of contracting HIV is low, since the person who can infect you is not around.”—A 22-year-old YCW who is married and living with her partner

PrEP, pre-exposure prophylaxis; YCW, young cisgender women.

Participants had differing views about the feasibility of young women taking PrEP daily for 20 days before their partner's return. Among those who stated it would be difficult, it was assumed that young women would need to initiate the 20-day lead-in time when their partner returned while abstaining from sex during this time. Given this belief, participants explained that problems would arise because of the unwillingness of young women's partners to delay sex.

Participants elaborated that abstaining from sex is unrealistic for married women who are expected to have sex when their partner desires, for young couples who are less likely to abstain from sex for that long, and for any woman who is taking PrEP secretly as they would need to convince their husbands to not have sex without disclosing the reason (Table 3, Section 2).

A few participants also expressed that it is difficult for young women in their communities to remember to take PrEP without the physical presence of their partner given that he is perceived as the source of HIV risk. Participants explained that partner absences lead to forgetfulness in taking PrEP, but the day their partner returns serves as a reminder (Table 3, Section 3).

In-depth interviews

Nearly all (n = 16) partners of the YCW interviewed (n = 18) traveled away from home. For most participants, the partners' time away from home was about 1 week to 1 month.

The YCW's narratives linked the need for PrEP to the times they would have sex. Speaking specifically about themselves, YCW who said they did not take PrEP when their partners were away—about one-third—said they stopped because they did not feel at risk for HIV at this time as they were not having sex with their partners and therefore did not need to take PrEP. They described re-starting PrEP soon before or immediately on their partners' arrival home in anticipation of having sex with their partners (Table 4, Section 1).

Table 4.

Participant Quotes from the In-Depth Interviews

Section: topic	Quote
Section 1: Stopped PrEP when partner is away	“The time I stopped taking PrEP was only when my husband was away….That's when I always stop taking. While he is around, I always take it… I just restarted taking PrEP when he came back….just that same day. …I don't know how faithful he is… he may get a certain lady of unknown HIV status and have sex with. Sometimes that lady was HIV positive and he contracts [HIV].”—A 21-year-old YCW who is married and living with her partner
	“Because I was now alone, is why I stopped taking PrEP…I start taking PrEP when he comes back….I stopped taking PrEP when he was not around for two weeks…I usually stop taking PrEP in those situations at the time when my husband is away…I start taking PrEP when he comes back, it is when I continue with taking PrEP.”—A 22-year-old YCW who is not married and living with a partner
	“Sometimes he takes over a month, but when I realize that he is soon coming back, then I start using PrEP because I do not know his status as per the place he went to….When he was away, I wasn't using PrEP, but when he was almost coming back, I started using because I didn't know his status wherever he was, could be he had a girlfriend or he was a lone I didn't know…During those days I wasn't taking PrEP because he was not close and I also didn't have someone close to me.”—A 20-year-old YCW who is not married and not living with a partner
Section 2: Continued PrEP—PrEP protects against other HIV risks	“It doesn't mean that when your partner is away then you can stop taking PrEP, because he is not the only one who can infect you with HIV through sex. Even through accident, blood transfusion, and even sharp objects that cut people can transmit HIV to an individual…being that my husband is away, I will still take PrEP because when I am taking it daily without missing, then my body becomes strong with its protection, such that even if I travel when he is still away, and I happen to be involved in accident then my blood comes into contact with another person who is HIV positive. I may not be infected with HIV given that my body has enough protection.”—A 22-year-old YCW who is married and living with her partner
Section 3: Continued PrEP—Unknown partner sexual behaviors when away	“When he is away, I don't know how faithful he is, wherever he is…so I continue taking PrEP so that I continue protecting my health.”—A 24-year-old YCW who is widowed
	“I don't know how faithful my husband is on that other side. I can't know the people he is with…he [could] contract the disease and he can infect me. So, that's the reason why I continue taking PrEP every day…when the pill is already used to my body, therefore I cannot contract the disease.”—A 22-year-old YCW who is married and living with her partner
Section 4: Continued PrEP—YCW has other sexual partners when regular partner is away	“[When my partner is gone] I can stop taking PrEP when I don't visit a man, but when I go visiting a men, then I can start taking it early so I go to visit him in two weeks' time then I can start taking it now so that when next week reaches, it's active in my body.”—A 20-year-old YCW who is not married and not living with a partner
Section 5: Continued PrEP—Awareness of need for daily regimen	“The reason why I continue taking PrEP for that period, first is because when I started taking PrEP, I was educated about PrEP and I was not told that if my partner is not there then I should not take it; I was told that PrEP is taken every day.”—A 23-year-old YCW who is married and living with her partner
Section 6: Ease of taking PrEP for the 20-day lead-up time when partner is away	“It can be easy for me to take PrEP for twenty days before he comes back, so that I can save my life.. when he comes back, it finds when the drugs still works in my body.”—A 24-year-old YCW who is married and living with her partner
	“It easy for me to take PrEP every day even if my husband is away given that taking PrEP every day without skipping makes one to have enough protection in your body to prevent HIV infection.”—A 22-year-old YCW who is married and living with her partner

PrEP, pre-exposure prophylaxis; YCW, young cisgender women.

Approximately two-thirds of YCW said they continued taking PrEP when their partners were away. The main reason for their continued PrEP use was to protect themselves from the perceived non-sexual activity sources of HIV, such as cuts from razor blades or knives or an accident resulting in their blood mixing with others’—as well as from rape (Table 4, Section 2). A few YCW elaborated that they were unaware of their partners' sexual activities when their partners were away, so they maintained daily PrEP use during their absence specifically to keep themselves protected against HIV on their partners' return (Table 4, Section 3). A few YCW also said they continued to take PrEP or would restart PrEP when their partner was gone only if they knew they would have sex with other partners during this time (Table 4, Section 4).

A few narratives on PrEP use during partners' absences demonstrated women's awareness of the need to take PrEP daily even when partners were away (Table 4, Section 5) or the need to take PrEP in advance of possible exposure (Table 4, Section 4), although the lead-in time was not always mentioned. When considering future PrEP use, most YCW said it would be easy for them to take PrEP when their partners were gone either for the entire time their partners were away or for 20 days before their anticipated return. Participants elaborated that continuous daily use would then provide them with the protection they needed when their partners returned and protect them from HIV through other sources when their partners were gone (Table 4, Section 6).

Discussion

Through our iterative research design, we identified a pattern of ineffective PrEP use, based on current guidelines, among YCW in Siaya County, Kenya and further explored this episodic use pattern to better understand its nuances and potential regularity. We discovered that participants felt it was common for YCW to stop taking PrEP daily when their partners traveled away from home for a short period of time, typically a week to a month, and resume taking it when their partners returned home. The YCW who stopped taking PrEP linked their risk of HIV to their partners' sexual activities; therefore, daily PrEP use was perceived as unnecessary when their partners were away.

Although some participants were aware that women must take PrEP for a period of time before potential exposure for the best protection from HIV, the amount of lead-in time in participants' narratives was often ambiguous; taking PrEP sufficiently in advance of a partner's return, based on either WHO or CDC guidance, appeared uncommon. Participant narratives on pausing PrEP when partners travel also suggest that YCW are not taking PrEP daily for 28 days after their last potential exposure.^* Perceived low partnership risk, which was also described in our study,³⁴ is often cited as a reason for PrEP discontinuation.^35,36 However, our findings demonstrate that perceived high but episodic partnership risk also influences YCW's decisions about stopping and re-starting PrEP. PrEP pauses during partner travel, and awareness of “time to protection” among AGYW has also been reported elsewhere.³⁵ Overall, our findings contribute to the growing literature on the reasons why AGYW interrupt PrEP use^35

–38 while illuminating the context and significance of this potentially ineffective pattern of use among YCW.

Promoting the concept of “seasons of risk” may ease the emotional burden from taking a daily medicine and increase interest in PrEP.²⁵ To further conceptualize and measure “seasons of risk,” Haberer et al developed a paradigm called prevention-effective adherence.²³ According to the paradigm, for individuals to benefit from “seasons of risk” and PrEP, they must be able to accurately assess their risk, use PrEP as directed during the time period of risk, and take PrEP as directed throughout the entire risk period.

Prevention-effective adherence cannot be achieved with inadequate adherence, even with high persistence.²³ Findings from our study suggest that PrEP persistence during perceived periods of sustained risk (e.g., ongoing sexual relationships with main partners) is practiced among young women, yet their PrEP adherence patterns—that is, routine, episodic use—do not follow current guidance, thus potentially voiding the benefits of “seasons of risk.”

Moreover, our findings suggest that YCW likely believe their episodic PrEP use will reduce their HIV risk because it aligns with their perceived high episodic partnership risk. Existing guidelines, however, do not support episodic PrEP use among cisgender women having vaginal sex. Yet—and importantly—many unknowns remain in pharmacological research on PrEP in this population.¹⁷ Additional research is critically needed to ensure AGYW's PrEP use efforts provide benefit and are not futile.

Specifically, more research is needed to further explore existing patterns of PrEP use among AGYW and when to intervene.^39,40 Simultaneously, more pharmacological research is needed, such as the recent study by Garcia-Cremades et al that examined protective plasma levels,⁴¹ and research to determine patterns of effective PrEP use among AGYW, including whether episodic or event-driven use is effective with vaginal sex. Such research could better inform guidance on “time to protection” and demonstrate whether women experience any “forgiveness”³⁵ from lower drug concentrations with non-daily PrEP use.

As we await further research, innovative interventions to support PrEP adherence and persistence among young women are needed^8,42 and should be grounded in the known benefits and current limitations of oral PrEP. Based on our findings—and within the current context of scientific uncertainty regarding “time to protection”—PrEP counseling interventions should expand their current messages about the “seasons of risk” to also focus on PrEP pauses,³⁵ specifically starting and stopping PrEP within a season.

Messaging should emphasize informed decision making,^43,44 helping AGYW to decide how best to incorporate PrEP use into their individual risk contexts and describe: (1) the length of time before potential HIV exposure when women should take PrEP daily for protection (after the program decides which guidance to follow—7 or 20 days—or to present both), (2) that PrEP should be taken daily to maintain protection, (3) when women can discontinue PrEP (e.g., when the reason women initially chose to start PrEP is no longer present), (4) the need to continue taking PrEP for 28 days after their last potential exposure,* and (5) the need to re-start PrEP in the future if their risk context changes.

For AGYW whose partners' travel regularly and return home frequently, daily PrEP use without any pauses may be the most effective approach for now. However, our findings also highlight that YCW forget to take PrEP when partners are away and suggest that YCW may desire to take breaks from daily PrEP use. For these reasons, long-acting injectable PrEP⁴⁵ may be an alternative option for some women. Injections—if received on schedule (every 2 months)—should provide sustained protection and eliminate the need to repeatedly plan PrEP use around partner travel.

Our study is not without limitations. We purposefully²⁹ selected participants, a standard practice in qualitative research, and we collected data from a single geographic location. Other individuals in Siaya and individuals in other locations may have the same or different perceptions and experiences. In addition, socially desirable responses are always a possibility in social science research. We attempted to reduce any social desirability bias in the images captured and discussed among young women during the same-group and mixed-group discussions by emphasizing that participants can focus on their own experiences or the experiences of other young women in the community—or they can choose not to share at all. Participants often chose to capture images and tell stories of their own experiences, suggesting that concerns about sharing personal stories were limited.

In the IDIs, participants may have shared that they took PrEP more often than they did as they had previously learned that PrEP should be taken before partners' return home either through the DREAMS program or through participation in the mixed-group discussions.

In conclusion, we identified an ineffective pattern of oral PrEP use based on current guidelines that may be common among young women in Siaya County, Kenya and may reduce the effectiveness of oral PrEP. “Seasons of risk” may help young women conceptualize using PrEP and increase their uptake of PrEP; however, counseling young women on current dosing guidance when stopping and re-starting PrEP within a “season of risk” is critical to ensure protection against HIV and to avoid young women misinterpreting “seasons of risk” as “days of risk” until more pharmacological research is conducted and guidance is updated.

Footnotes

Acknowledgments

The authors would like to thank all study participants for sharing their photographs, stories, and insights with them. They are also grateful to the study teams at Impact Research and Development Organization, the University of North Carolina Greensboro, and Duke University, and to Meredith Clement, MD, LSUHSC School of Medicine, for discussions on pharmacological studies. Ms. Brooke Walker, Duke Clinical Research Institute, provided editorial review and article submission.

Ethical Approval

The Maseno University Ethics Review Committee in Kenya and the Duke University Health System Institutional Review Board in the United States approved the research.

Consent

All participants provided their written informed consent and permission for their photographs to be used for research purposes.

Authors' Contributions

A.C., B.P., K.A., and R.S. conceptualized and designed the study; A.C. and B.P. designed the data collection instruments; B.P. led the data analysis; N.M. analyzed the data; K.A. and D.O.N. provided study implementation oversight; A.C. drafted and revised the article; and B.P., D.O.N., N.M., R.S., and K.A. reviewed the article; All authors approved the final article as submitted and agreed to be accountable for all aspects of the work.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

Research reported in this article was supported by the National Institute of Mental Health under award number R21MH116778.

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