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. Author manuscript; available in PMC: 2023 Mar 1.
Published in final edited form as: AIDS Care. 2021 Sep 20;34(3):363–370. doi: 10.1080/09540121.2021.1981217

Key influences on the decision to initiate PrEP among adolescent girls and young women within routine maternal child health and family planning clinics in Western Kenya

Zoe Rogers 1, Jillian Pintye 2, John Kinuthia 1,3, Gabrielle O’Malley 1, Felix Abuna 3, Jaclyn Escudero 1, Melissa Mugambi 1, Mercy Awuor 3, Annabell Dollah 3, Julia C Dettinger 1, Pamela Kohler 1,4, Grace John-Stewart 1,5,6,7, Kristin Beima-Sofie 1
PMCID: PMC8934309  NIHMSID: NIHMS1741889  PMID: 34543077

Abstract

We sought to understand key influences on pre-exposure prophylaxis (PrEP) uptake among Kenyan adolescent girls and young women (AGYW) whose decision on PrEP use was misaligned with their risk for HIV acquisition. Semi-structured in-depth interviews (IDIs) were conducted with 47 Kenyan AGYW living without HIV aged 15–24 years who were offered PrEP during routine maternal and child health and family planning visits at four facilities in Kisumu, Kenya. AGYW were sampled from two groups: 1) declined PrEP and had ≥1 sexual partner(s) of unknown HIV status and 2) initiated PrEP and reported having one HIV uninfected partner. IDIs were audio-recorded, transcribed, and descriptively analyzed. AGYW with HIV uninfected partners chose to initiate PrEP to address fears of HIV acquisition due to known or suspected infidelity. AGYW with partners of unknown HIV status recognized PrEP as a helpful tool for protecting themselves against HIV, yet worried about their partners’ reactions and prioritized avoiding uncomfortable or unsafe situations over taking PrEP. Among pregnant AGYW, the responsibility of motherhood and providing a future for one’s family, through staying healthy and remaining HIV-free, was a strong motivator for initiating PrEP. Among non-pregnant AGYW who desired motherhood in the future, fears that PrEP could negatively impact fertility or reduce effectiveness of FP methods led to declining PrEP. Peers positively influenced PrEP decision-making, especially personally knowing a PrEP user. More studies are needed that examine strategies to enhance PrEP uptake through messaging and delivery approaches that are tailored to AGYW, including peer-led strategies.

Keywords: pre-exposure prophylaxis, PrEP, HIV prevention, women, adolescents, Africa

Introduction

Adolescent girls and young women (AGYW) ages 15 to 24 years represent roughly 10% of the population in East and Southern Africa, yet they account for 26% of new HIV infections (UNAIDS, 2014, 2017). In Kenya, approximately 37% of all new HIV infections are among young people under the age of 24 years (National AIDS Control Council, 2017), and AGYW experience double the number of new HIV infections as their male peers (UNAIDS, 2014). The World Health Organization recommends that AGYW living without HIV (PLWoH) with substantial risk for HIV acquisition be offered pre-exposure prophylaxis (PrEP) as part of a comprehensive HIV prevention package (World Health Organization, 2018). The 2016 Kenya Ministry of Health (MOH) guidelines on the provision of PrEP include AGYW in HIV high-burden areas as a priority population (Ministry of Health, July 2016), and PrEP implementation is progressing in Kenya, with >55,000 individuals initiating PrEP as of January 2020 (AVAC, 2019).

The PrEP Implementation for Young Women and Adolescents (PrIYA) Program found that 16% of AGYW accept PrEP when universally offered within routine maternal and child health (MCH) and family planning (FP) clinics in Kenya (Kinuthia et al., 2020; Mugwanya et al., 2019), though other studies among Kenyan AGYW report lower PrEP uptake (<5%) (Dunbar et al., 2019; Oluoch et al., 2019). The majority (~80%) of young women who have a partner known to be living with HIV accept PrEP when offered, compared to <40% of those with partners of unknown HIV status (Kinuthia et al., 2020; Mugwanya et al., 2019). Additionally, PrEP uptake was approximately 12% among young women who reported having only one HIV uninfected partner and no other HIV risk factors per Kenyan PrEP screening guidelines (e.g., transactional sex, recent sexually transmitted infection, etc.) (Ministry of Health, July 2016). These findings suggest that decisions to accept or decline PrEP among some AGYW may be misaligned with HIV behavioral risk as assessed on screening tools and the rationale for these decisions remains unclear. As PrEP access expands in routine MCH/FP settings, it is increasingly important to understand PrEP initiation decision-making to inform interventions that promote appropriate PrEP uptake among AGYW most likely to benefit.

We conducted qualitative research to elicit personal narratives among AGYW who were offered PrEP within MCH/FP clinics in Western Kenya as part of the PrIYA Program. In the current analysis, we sought to understand key influences of PrEP uptake among AGYW whose decision to decline or accept PrEP appeared to be misaligned with their behavioral risk for HIV acquisition. Our overall goal was to understand factors influencing PrEP decision-making among these groups of AGYW to inform the development of PrEP implementation strategies tailored to AGYW.

METHODS

Study Design and Population

We conducted individual interviews (IDIs) with AGYW ages 15 to 24 who were participants in the PrIYA Program and were offered PrEP through MCH/FP clinics. IDIs were conducted between October and December 2018 at four facilities in Kisumu County (Pintye, Kinuthia, et al., 2018).

Recruitment

A convenience sample of AGYW who were counseled on and offered PrEP during routine MCH and FP visits were recruited to capture a range of perspectives on PrEP initiation. AGYW were invited to participate in IDIs if they either 1) declined PrEP yet had at least one sexual partner whose HIV status was unknown, or 2) initiated PrEP yet had only one HIV negative partner. Potential AGYW were identified by clinic staff and referred to study staff after services were provided. IDIs were conducted by one of six female Kenyan social scientists on the same day as their clinic appointment or scheduled for a later date. Before each IDI, the interviewer confirmed eligibility and conducted informed consent. Interviewers were not involved in providing clinical care, and clinic staff were not present during IDIs.

Data Collection

A semi-structured interview guide, oriented around the Stages of Change Model (or Transtheoretical Model) (Prochaska & Velicer, 1997), was developed to explore participant’s experiences and decisions around PrEP uptake and to assess knowledge, access, and beliefs informing these decisions. Questions included where AGYW first heard about PrEP, what factors influenced initial decisions to accept/decline PrEP, descriptions of relationship dynamics with partner(s), and whether AGYW would recommend PrEP to a friend.

Basic demographic information, including age, education, and relationship status, was collected for each participant prior to each IDI. IDIs were conducted in English, Dholuo, or Kiswahili, and lasted an average of 20–30 minutes. Interviews were audio-recorded, transcribed verbatim by the interviewer, and translated into English as needed. At the conclusion of each IDI, interviewers completed structured debrief reports to summarize their subjective impressions of the interview (participant openness and quality of the interview) and capture brief, targeted descriptions of participants’ responses (Simoni et al., 2019).

Data Analysis

Data analysis employed a combination of conventional (inductive) and directed (deductive) content analysis methods (Hsieh & Shannon, 2005). The Stages of Change Model was used to categorize the decision-making stages as AGYW decided to accept or decline oral PrEP. Our analysis was primarily focused on early phases within the Stages of Change Model, including precontemplation (learning about PrEP for the first time), contemplation (considering whether to initiate PrEP), and preparation (deciding whether to accept PrEP pills when offered during MCH/FP visits).

Conventional content analysis, including open coding, was used to derive codes that captured concepts directly from the data related to the types of information motivating PrEP decisions. A codebook organizing emerging codes was iteratively refined in phases. Debrief reports were used to compile factors that influenced PrEP decisions. A subset of full-length transcripts were reviewed to refine and expand the list until no new factors were identified. The study team established and revised definitions for categories and subcategories of influencing factors as well as specific code definitions through an iterative process of reviewing transcripts against the developing codebook and group discussion. Transcripts were analyzed using Dedoose software (version 7.0.23, Los Angeles, CA, USA: Sociocultural Research Consultants, LLC).

All transcripts were independently coded using a final version of the codebook by one member of the study team. Another team member reviewed code application to ensure completeness, appropriateness, and consistency. Disagreements in code application were resolved through group discussion until consensus was reached. Key themes were identified by running queries to compare key factors influencing PrEP uptake decisions between AGYW and different stages of change. Thematic network analysis was used to categorize individual themes into related networks (Attride-Sterling, 2001).

Ethical considerations

All study procedures were approved by the Kenyatta National Hospital-University of Nairobi Ethics and Research Committee and University of Washington Institutional Review Board. In addition, approval was obtained from the Kisumu County Department of Health and administrators in respective health facilities.

Results

Overall, 47 AGYW participated in IDIs, including 21 AGYW with known HIV uninfected partners who initiated PrEP and 26 AGYW with at least one partner of unknown HIV status who declined PrEP. The median age for all AGYW was 21 years. Most AGYW were unemployed (70%), 47% were currently in school, and approximately half (53%) were married. Characteristics were similar across groups, except for educational attainment and parity (Table 1).

Table 1.

Demographic Characteristics of AGYW Participants (n=47)

N (%) or Median (IQR)
Characteristic Total n=47 Accepted PrEP n=21 Declined PrEP n=26

Age (years) 21 (20 – 23) 22 (20 – 23) 20 (20 – 22)
Highest level of education at enrollment
 Primary 14 (29.8) 8 (38.1) 6 (30.0)
 Secondary 22 (46.8) 10 (47.6) 12 (46.2)
 University 11 (23.4) 3 (14.3) 8 (30.8)
Currently attending school 22 (46.8) 8 (38.1) 14 (53.8)
Employment status
 Unemployed 33 (70.2) 15 (71.4) 18 (69.2)
 Salaried 4 (8.5) 2 (9.5) 2 (7.7)
 Regular hourly 2 (4.3) 2 (9.5) 0 (0)
 Irregular hourly 5 (10.6) 1 (4.8) 4 (15.4)
 Other 3 (6.4) 1 (4.8) 2 (7.7)
Receives financial support from partner 33 (70.2) 14 (66.7) 19 (73.1)
Relationship status
 Single 2 (4.3) 2 (9.5) 0 (0)
 Steady boyfriend 20 (42.6) 8 (38.1) 12 (46.2)
 Married 25 (53.2) 11 (52.4) 14 (53.9)
Currently has live children
 No 19 (40.4) 6 (28.6) 13 (50.0)
 Yes 28 (59.6) 15 (71.4) 13 (50.0)
Parity
 1 21 (75.0) 10 (66.7) 11 (84.6)
 2 5 (17.9) 3 (20.0) 2 (15.4)
 3 2 (7.1) 2 (13.3) 0 (0)
Clinic Type
 MCH 33 (70.2) 14 (66.7) 19 (38.5)
 FP 14(29.8) 7 (33.3) 7 (26.9)
Knows PrEP user
 No 27 (57.5) 14 (66.7) 13 (50.0)
 Yes 20 (42.6) 7 (33.3) 13 (50.0)

AGYW=adolescent girls and young women; PrEP=pre-exposure prophylaxis; MCH=maternal and child health; FP=family planning

Three major themes emerged from the IDIs related to the decision to initiate or decline PrEP (Figure 1): 1) relationship climate shaped perceived risks and benefits of PrEP, 2) motherhood, both current and future, led to the responsibility and desire to protect one’s future, and 3) PrEP awareness and logistics influenced PrEP initiation. The complex interplay of these themes with contextual factors, such as peer influence, influenced PrEP decision-making.

Figure 1:

Figure 1:

Key themes and influencers of PrEP uptake among AGYW within MCH/FP

AGYW=adolescent girls and young women; PrEP=pre-exposure prophylaxis; MCH=maternal and child health; FP=family planning

Relationship climate shaped perceived risk and benefits of PrEP

AGYW reported that their relationships with male partners heavily influenced their HIV risk perception. Many participants described high levels of mistrust and suspected infidelity within their relationships. Conversations with peers amplified suspicions of partner infidelity and validated feelings of mistrust, positively influencing the perceived benefits of PrEP.

“…’[A] man is only yours when you are with him in the house,’ that is what my friends usually say… But when he is outside there, he belongs to many people. You cannot know how he is walking [i.e., having partners outside marriage]...that is why when I was told about PrEP then I agreed to take it….”

- MCH client, initiated PrEP

Many AGYW reported a strong sense of autonomy behind their decision to take PrEP. For some, knowing they could exercise control and make a choice to protect themselves by taking PrEP provided comfort when they could not control their partners’ behavior.

“For me, PrEP is the best because you protect yourself on your own, you have control over your own safety. You are your own driver… like this is your car and you manage it by yourself…you are in control over your body, so you take [PrEP] for your own protection.”

–FP client, initiated PrEP

Some participants felt that PrEP would provide “peace of mind” since they were unsure if their male partners had other partners. Participants described how attempting to discuss infidelity with their male partners often led to discord, or even violence. PrEP was a way of maintaining harmony by avoiding uncomfortable conversations about infidelity and HIV status while simultaneously affording women the protection they wanted from HIV.

“I liked it [PrEP] because it reduces my chances of getting HIV/AIDS…I may have one partner who may be having other girlfriends. So maybe they are having unprotected sex with those ladies, you know? So I thought, maybe if I use this PrEP I will be much safer than to keep asking, are you ok [HIV uninfected]?”

- MCH client, initiated PrEP

Although participants often recognized the benefits of PrEP for HIV prevention, some placed heavier weight on the possibility of PrEP introducing negative reactions from partners and declined use. Other participants rationalized that because they were HIV uninfected, their partner must also be uninfected by proxy:

“I thought if I started taking the medicine [PrEP], he will think “this mama, what does she think of me?”, or he will think that I don’t trust him…I just thought it will instigate a lot of issues. So, I thought to myself, I have been [HIV] negative all this while so probably he is not doing anything [e.g., cheating] that warrants me to go for PrEP.”

- MCH client, declined PrEP

“The reason why I don’t want to take it [PrEP] is because he could find it. Where I am going to store it? He can physically assault me if he finds them before I consult with him first… He can even send me away from my matrimonial home, so I am scared to carry PrEP at home with me.”

- MCH client, declined PrEP

Motherhood, both current and future, led to the responsibility and desire to protect one’s future

For many AGYW, their identity as a mother was a central force in PrEP decision-making. Most AGYW who were currently mothers felt that they had an obligation to both protect their child’s future and believed that remaining healthy and HIV-free was central to fulfilling this responsibility.

“I decided to take PrEP because of the pregnancy so that I can protect the child from getting infected [with HIV]. So that the life of the baby will be good, and my health too will be good…I was told that if I want to be safer, I should use PrEP so that me and the baby are safe because the trust is not there in our relationship.”

- MCH client, initiated PrEP

A few pregnant women declined to take PrEP because they feared that exposing the fetus to “chemicals” in the medication could negatively impact their babies. Among AGYW who were not currently pregnant, concerns about interactions between PrEP and future fertility influenced the decision not to initiate PrEP because of the strong desire for future motherhood.

“[T]he fact that I still don’t have a baby, I just have fears that it [PrEP] might [negatively] affect my fertility.”

- FP client, declined PrEP

For some AGYW currently using FP to delay or prevent pregnancy, they worried that adding PrEP could lead to harmful interactions or reduce the effectiveness of hormonal contraception.

“I had an implant inserted [and wondered]…can PrEP interfere with the implant so that it doesn’t work well? I heard that when you have a lot of medication in your system it can affect someone.”

- FP client, declined PrEP

PrEP awareness and logistics influenced PrEP initiation

AGYW described varying levels of knowledge about PrEP side-effects, which influenced their willingness to take PrEP. For some AGYW with limited or no PrEP awareness prior to coming to clinic, potential exposure to “chemicals” in unfamiliar medications and associated effects outweighed potential benefits.

“…. I thought this medication [PrEP] may contain some chemicals which I may not need because I had never heard about it [before clinic today]…..so I felt I may decide to start using it and maybe it might have negative effects on me.”

- MCH client, declined PrEP

However, having personal knowledge of others using PrEP, typically a friend or family member, provided evidence that PrEP was safe and encouraged use. While community associations between PrEP and promiscuity initially discouraged use for some AGYW, seeing peers access PrEP at the clinic helped normalize PrEP use and reduce stigma, positively influencing PrEP uptake.

“When I first came [to get PrEP], I was hiding because there were many people in the queue who may know me…I asked one if she has been using [PrEP] for a long time and she told me that it has helped her, so I got encouraged.”

- FP client, initiated PrEP

For some, the availability of PrEP at their MCH/FP clinic made it more convenient to initiate, especially if they had already considered PrEP prior to attending clinic. Others shared that the financial costs of travelling to the clinic to obtain refills eliminated PrEP as an option, and that meeting other essential needs (including food) posed bigger challenges than the risk of HIV.

“[T]he doctor told me that a bottle has like 30 pills when I was having a discussion with her, and that means that I must keep on coming back for my PrEP refill after every one month and I am someone with a low source of income. I may not afford fare to use for coming here every month for PrEP.”

- MCH client, declined PrEP

Discussion

These results highlight factors influencing PrEP initiation among AGYW in MCH/FP settings whose decision to decline or accept PrEP was misaligned with knowledge of their partner’s HIV status. Similar to prior studies, HIV risk perception, peer influence, practical logistics, and the desire to preserve relationships influenced PrEP use among AGYW in our study (Celum et al., 2019; Luecke et al., 2016; Minnis et al., 2018; Montgomery et al., 2017; Montgomery et al., 2015; Pintye, Beima-Sofie, et al., 2018). Women in this study clearly demonstrated the importance of acknowledging relationship climate and developing strategies to discreetly use PrEP when necessary. Our study adds new evidence unique to PrEP delivery within routine MCH/FP clinics, including how motherhood and the desire for a healthy family influence PrEP decision-making among AGYW. Fears of interactions between PrEP, fertility, and contraception also negatively influenced PrEP uptake. As programs consider integrating PrEP services into MCH/FP settings to reach AGYW, studies that examine strategies to enhance PrEP uptake through messaging tailored to AGYW will be critical.

We found that some AGYW with HIV uninfected partners chose to initiate PrEP to eliminate their fear of HIV acquisition due to known or suspected infidelity. AGYW with partners of unknown HIV status recognized PrEP as a helpful tool for protecting themselves against HIV, yet they worried about their partners’ reactions and prioritized avoiding uncomfortable or unsafe situations over taking PrEP for HIV prevention. Providing AGYW with skills for discussing PrEP with their partners and involving male partners in community PrEP messaging to reduce PrEP stigma could be strategies for reducing barriers to PrEP. Our results also underscore the need for more discrete PrEP modalities when partners are unsupportive. Recent studies have explored an array of novel PrEP agents (e.g. vaginal rings and long-acting injectables) (Krogstad et al., 2018; Minnis et al., 2020; van der Straten et al., 2020) and ongoing studies among at-risk AGYW (Baeten et al., 2020) including some among pregnant women (van der Straten et al., 2020). Expanding PrEP choices to include more discreet options could overcome partner-related barriers to PrEP initiation reported by AGYW in our study.

We found that identifying as a current or future mother influenced PrEP decisions. The responsibility of caring for a child and providing a future for them was a strong motivating factor for staying healthy and HIV-free. Like prior studies among older women, some AGYW feared PrEP use during pregnancy and declined PrEP, motivated by the desire to protect the child’s health from possible adverse effects (Joseph Davey et al., 2020; Pintye et al., 2017). Among non-pregnant AGYW, fears that PrEP could negatively impact fertility or reduce effectiveness of FP methods also led to declining PrEP. Current evidence from randomized trials suggest PrEP does not influence fertility outcomes (Mugo et al., 2014), nor diminish contraceptive effectiveness (Murnane et al., 2014; Patel et al., 2017; Pyra et al., 2015). Similarly, pharmacological studies demonstrate that use of hormonal contraception does not clinically alter pharmacokinetics or pharmacodynamics of PrEP in women (Tarleton et al., 2020). Dispelling myths and misconceptions about PrEP safety, including impacts on fertility or interactions with FP, and incorporating these messages into PrEP pre-initiation counseling will be critical for promoting PrEP uptake among AGYW.

Like previous studies among AGYW in East and Southern Africa, peers influenced PrEP decision-making and personally knowing someone who uses PrEP quelled fears among our participants. One study among AGYW starting PrEP in South Africa found that peer-based clubs using a structured empowerment approach offered valuable PrEP initiation support (Baron et al., 2020). To date, peer group strategies for PrEP among AGYW focus on improving adherence rather than increasing uptake. Peer groups for AGYW contemplating PrEP initiation that include other AGYW PrEP-users could be one approach for increasing PrEP uptake among at-risk AGYW. Practical considerations, including acquiring and refilling PrEP pills, also influenced the decision to initiate PrEP in our study, supporting previous findings that AGYW value convenience for accessing PrEP (Minnis et al., 2018; van der Straten et al., 2014). An ongoing study in South Africa will test whether HIV self-testing delivered by peers can increase uptake of antiretroviral therapy and PrEP among AGYW (Adeagbo et al., 2019). More intervention studies among AGYW are needed that test peer-led implementation strategies, including peer-delivered PrEP, for promoting PrEP use in this population.

Our study has limitations. We sought to describe reasons for declining PrEP among AGYW with partners of unknown HIV status and reasons for initiating PrEP among AGYW with HIV uninfected partners. The results described may not reflect perspectives outside of these groups or other risk stratification. However, the themes we identified are likely applicable to other groups of AGYW offered PrEP within MCH and FP settings. Additionally, our study included only AGYW seeking clinical services who may have more social agency than AGYW at-large in settings with high HIV burden. We also did not capture the type of contraception used by FP clients. Member checking our interpretation of results was not possible due to logistical reasons as participants did not consent to re-contacting.

In conclusion, our findings support the importance of acknowledging relationship climate when counseling AGYW on PrEP and developing strategies to discreetly use PrEP. Within routine MCH and FP clinics, the desire for a healthy family influenced PrEP decision-making among AGYW. Fears about potential interactions between PrEP, fertility, and contraception negatively influence PrEP uptake. More studies are needed that examine strategies to enhance PrEP uptake through messaging and delivery approaches that are tailored to AGYW, including peer-led strategies.

Acknowledgments:

We would like to thank the study participants for their time and contribution, and the PrEP Implementation for Young Women and Adolescents (PrIYA) Program for their support in conducting this study.

Funding:

This study was funded by the US National Institutes of Health (R01HD094630, R01HD100201, and R01AI125498). The PrEP Implementation for Young Women and Adolescents (PrIYA) Program was funded by the United States Department of State as part of the DREAMS Innovation Challenge (Grant # 37188-1088 MOD01), managed by JSI Research & Training Institute, Inc. The PrIYA Team was supported by the University of Washington’s Center for AIDS Research Behavioral Sciences Core (CFAR BSC) (P30 AI027757) and the Global Center for Integrated Health of Women, Adolescents, and Children (Global WACh).

Disclaimer: This work was funded by a grant from the United States Department of State as part of PEPFAR’s DREAMS Partnership, managed by JSI Research & Training Institute, Inc. (JSI). The opinions, findings, and conclusions stated herein are those of the authors and do not necessarily reflect those of the United States Department of State or JSI.

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