Qualitative research on PrEP often hinges on interviews with study participants. The 3Ps for Prevention (Partners, Perceptions and Pills) study (3P), which evaluates PrEP use and adherence in adolescent girls and young women in Cape Town, South Africa, decided to also try an alternative methodology: incorporate photography as a way for the young women to document their experience with PrEP. Their photographs added a visual component to the research, enhanced their agency as participants in the study, and helped them to shape the conversation about PrEP. The images they created gave researchers a unique view into participants’ perspectives on PrEP, revealing new dimensions to their experience and the factors that encourage or discourage PrEP use.

PhotoVoice is a participatory research methodology that depicts personal narratives through photography. Researchers at the Women’s Global Health Imperative program (WGHI) at RTI International conducted the PhotoVoice project in partnership with the Desmond Tutu HIV Foundation (DTHF). Six young women from adherence clubs in the 3P study volunteered to participate in the project over a two-week period in July 2018. Researchers presented PhotoVoice as a tool participants could use to reflect on what motivates or deters PrEP use and adherence. At the time of the project, they had been taking PrEP for up to one year as participants in the 3P study.

By relying on visuals with brief captions as the primary mode of communication, PhotoVoice brought to light particular aspects to their experience that may not have emerged in interviews or surveys. In research studies with young people, sustaining participant interest and motivation can be difficult. This project is “a fun way to get participants more engaged,” says Shannon O’Rourke of WGHI at RTI International. “PhotoVoice taps into a different part of young women’s brain as they try to explain their experience through this PrEP journey,” says Ariane van der Straten, Senior Fellow and Director, WGHI at RTI International. “We tend to be verbal when we are conducting research – we primarily ask questions and ask participants to answer. PhotoVoice a very different process to produce images of that experience.”

The project kicked off with an initial focus group discussion and a training session by a local photographer on the PhotoVoice method and basic elements of photography. The young women participated in a series of follow up meetings where they shared their photography and discussed what they were hoping to capture about their experiences with PrEP. While the project facilitators provided some guidance, feedback and suggestions were largely offered by the participants themselves.

The project was structured around three topics – relationships, risk perception, messaging – which came through as major themes in interviews with 3P participants. Using these same themes as a guide for the photography allowed researchers to compare the images with the interviews. Participants were also encouraged to go beyond these themes and photograph anything related to their journey with PrEP, and in so doing, they drove the direction of the research. The project culminated in an exhibition at the DTHF Youth Centre in Masiphumelele, Cape Town (where the 3P study is located).

A rich array of photos were produced, highlighting how young women saw themselves in their communities and the lives they were aspiring to lead. The images explore what empowered them, what gave them a sense of belonging, and what they found challenging. In addition to taking photographs, participants wrote captions for each image, describing its significance or symbolic meaning.

Through this process, participants created their own representations of PrEP in their lives. For instance, a photo of women dancing signified how PrEP is empowering to one PhotoVoice participant. Photos depicting a partner’s distrust, worries about sexual violence, and alcohol abuse in their communities were uniquely vivid compared to verbal accounts of these situations, filtered through researchers’ written words. “I don’t think we realize the level of stress and trauma that these young women have to navigate on a daily basis – and what that translates to in terms of creating a commitment and a habit of taking pills,” explains van der Straten. “It was important to ground the words they’re saying into something that is more visually real.”

“When your partner is with you but still looks at other girls, he can put you in danger.”

These photographs enabled young women to express feelings metaphorically, expanding the range and depth of experiences they explored with researchers. A picture of plants deteriorating represents how PrEP prevents HIV in the body; another of children running along the beach shows how PrEP can help foster a fulfilling life. While talking can draw out the rationalized reasons behind the decision to take PrEP, “there is an emotional component to taking PrEP and sticking with PrEP. These pictures render better the emotional dimension that is sometimes hard to capture when we just ask questions,” says van der Straten.

“CD4 is losing power. Taking 3P (PrEP) to avoid HIV and make my CD4 strong.”

The photos and captions revealed the shifting factors that encourage or discourage PrEP use and how they change over time, depending on how long the women had been taking PrEP. Social support was fundamental for new users, with many depicting who they could count on. Family members, particularly mothers whom participants lived with, served as both strong sources of support and in some cases opposition. Those with longer term PrEP use portrayed self-motivation to take PrEP, saying it empowered them and made them feel safer in their communities. Some explored images showing the importance they attach to acting as advocates in their community.

“Support: my mom supports me all the time.”

The photos also illuminated reasons and patterns related to PrEP discontinuation. Most of the young women who stopped PrEP pointed to external circumstances that made PrEP use less feasible, rather than questioning its value. One stopped because she went through the process of becoming a traditional healer but intended to restart after her initiation in the role. Some experienced a death in the family; others had to move out of their communities. The project also highlighted the need to better understand women’s desire to stop and restart, and how to support changes in PrEP use. Those who stopped expressed that, “this is something I will look forward to do later on – just not right now,” says van der Straten.

In fact, most PhotoVoice participants reported positive experiences taking PrEP. It gave them an avenue to communicate with their partners about sexual health that they didn’t previously have. One said the PhotoVoice process allowed her to think more about why she was taking PrEP, and as a result now feels more motivated to adhere to her pills. Another felt it was important to depict her struggle with side effects in the beginning and overcoming these barriers.

“Be who you are.”

The issue of stigma was underrepresented in photos, not because it did not play a role in young women’s lives, but because it was harder for participants to take pictures of those who reject them. One, whose mother disapproved of PrEP, took a photo with her peer’s mother to illustrate a parent’s opposition to preventive pill-taking. Whereas PhotoVoice found that supportive relationships proved central to adherence and a positive experience of PrEP use; how young women internalize stigma and social opposition merits further research exploration.

The exhibition of participants’ photos at the Desmond Tutu HIV Foundation Youth Centre in Masiphumelele created a dialogue among other young women in the 3P study who came to the exhibition, as they compared their own PrEP experiences to what was depicted in the photos.

PhotoVoice proved instrumental for the 3P study and has the potential to enrich research studies more broadly. In the 3P study, PhotoVoice cued researchers early to the need to know much more about the emotional journey young PrEP users experienced. Subsequent qualitative analysis was structured to continue to explore these questions, yielding valuable insights around different types of motivations and the process of forming an identity as a PrEP user. Other studies could similarly benefit from giving participants this alternative, expressive form of self-exploration, and a participatory process to feel more engaged in co-creating the research.

Beyond research, PhotoVoice projects could be built into the design of PrEP programs to understand how PrEP users define their emotional journey and the significance of PrEP. It would allow programs to better align with what’s happening in participants’ lives and offer tailored support. And while many researchers and implementers grapple with the question of how to improve PrEP persistence rates, PhotoVoice could unearth potential solutions. “It’s a powerful tool that is not used enough,” says van der Straten. Making research more visual offers a new window into the lives of young women and, in turn, allow programs to better serve them.

For more information on the work of the Desmond Tutu HIV Foundation and RTI International’s work, see:

• Desmond Tutu HIV Foundation Youth Centre>
• Ariane van der Straten
• Women’s Global Health Imperative

Help us collect examples and evidence that supports differentiated service delivery (DSD) models for PrEP—fill out this survey!

As part of an effort by The Differentiated Service Delivery Initiative of the International AIDS Society (IAS), AVAC and CHAI’s HIV Prevention Market Manager project and PATH are reaching out with a survey to better understand DSD models currently being piloted and implemented for oral PrEP. The survey should take approximately 10 minutes to complete.

Responses will help inform guidance and development of DSD models, which we hope will ultimately help improve access to oral PrEP and new interventions on the horizon. All data will be kept confidential and will be aggregated to inform a planned satellite session at AIDS2020.

This effort will collect and share what countries are doing to diversify PrEP service delivery models, what models are moving beyond the clinic to reach PrEP users, and what DSD models can be borrowed from treatment and family planning programs to significantly increase oral PrEP use now and for next-generation HIV prevention options as they become available.

Thanks in advance for your time and please send on to relevant networks and colleagues!

One of the most ambitious programs to roll out oral pre-exposure prophylaxis (PrEP) to populations at risk of HIV so far is Kenya’s Bridge to Scale project, also known as Jilinde, and run by Jhpiego (a Johns Hopkins University affiliate). Jilinde has built in a robust evaluation process that continuously tests and changes its messages and outreach aimed at adolescent girls and young women (AGYW), among other populations. This process was based on an iterative strategy using human-centered design and broad stakeholder engagement that could inform efforts the world over to reach persistently underserved populations with HIV prevention at scale.

The introduction of PrEP in Kenya was backed by a substantial government commitment, and as of October 2019, Kenya counts 56,000 people who have started PrEP. The only country with higher numbers is the US at approximately 132,000 people. Since launching in 2016, Jilinde (a consortium of partners that includes Jhpiego, NASCOP, PS Kenya, ICRH-K and Avenir Health) has rapidly scaled up PrEP. Kenya surpassed a national target set with PEPFAR in 2018 by 559 percent, and there are plans for bold targets in 2020. But bringing PrEP to AGYW and helping them stay on PrEP for as long as they need remains an urgent matter—AGYW age 15-24 made up almost 25 percent of all new HIV infections in Kenya in 2018.

To get PrEP to the people who need it most, in 2017, implementers in Kenya embraced a marketing strategy called segmentation, which groups end-users by behaviors, attitudes, beliefs—rather than only demographics—and develops messages for each based on the traits they share. Segmentation in the context of HIV prevention then uses those groups to inform investments in products and programs designed to meet their needs.

Jilinde’s segmentation work drew from qualitative and quantitative research with end-users conducted by ThinkPlace and Busara Center for Behavioral Economics, and from a series of workshops with young women, civil society, key populations and NASCOP.

Messages and strategies for reaching each segment of end-users were prototyped, designed and piloted. The implementation process led by Jilinde brought in civil society organizations to an early-phase workshop, and included them in efforts to pilot outreach and messages based on what had been learned. Throughout, the team kept an ear out for the distinct fears, aspirations and needs of each segment—to develop messages that spur action.

Initially, Jilinde used a single message for AGYW in the 10 counties targeted for PrEP rollout—an upbeat Swahili slogan in primary colors that reads “KujiPrEP Ni Kujipanga Poa,” which when translated to English means: “PrEP yourself, and plan yourself well”.

“We built that message from insights that young people want to be in charge of their health, that no one will care about you more than yourself, and your health is a responsibility,” said Aigelgel Kirumburu, who brings communications and marketing expertise to Jilinde. Creating messages that increase awareness of PrEP among the general population is important especially when a new intervention is first introduced. As the program matured, reaching more AGYW was a priority. Developing tailored messages that recognized and resonated with different segments of AGYW helped to tap into their different motivators for seeking HIV prevention.

Staff also took notice of research from other settings that dug deep into the complex challenges young women face when it comes to primary prevention, sexual and reproductive health, stigma, community norms, parental attitudes, personal agency and the powerful influence of male partners in their lives.

“We looked at developmental science, Adolescent 360’s Nigeria Insights and HIV Prevention Market Manager’s Breaking the Cycle of Transmission and began to understand how hard it can be for a young girl to see her own risk as both real and preventable,” Aigelgel explained. “Plus, relationships are always a primary concern—they [AGYW] don’t want to do anything that puts important relationships at risk.” For example, key insights from the Breaking the Cycle of Transmission found that AGYW in South Africa overestimate their ability to judge risky partners, are rewarded in their environments for minimizing prevention and underestimating risk. In addition, seeking current prevention strategies often involves conflict with disapproving partners, parents, and health care professionals. Meanwhile, those providers who are empathetic often transmit erroneous information to young clients.

Aigelgel says in 2019 the team reexamined the segments they had defined among AGYW. It was time to develop more tailored messages for each of them and design outreach efforts to more effectively reach the various segments. Recognizing that AGYW’s relationship to PrEP varies and can change over time, Jilinde created specific messages for each segment around PrEP awareness, uptake, adherence, and discontinuation. “We’ve realized that one segment is very different from another. What may be important to one girl would not be important to the other,” says Aigelgel.

Table 1: Jilinde AGYW Segments

Jilinde has been piloting this refined approach to engage each unique segment, work that continued through the end of 2019. When testing the new messages, Jilinde found that AGYW liked simple messages they could relate to.

“PrEP keeps me on top of my game” emerged as one message that was easy-to-understand, while AGYW thought “PrEP keeps me lit” and “Life is good when PrEP is Fly” were less clear.

“PrEP keeps me secure” and “PrEP is my future” resonated with girls who saw PrEP as a tool to cement their futures and care for their families.

Messages that didn’t spark an interest included: “PrEP is popular, using it makes me fit in” and “PrEP is fun.”

Messages that included a visual—such as photos of other AGYW in the community—got them interested in what the messages had to say.

Beyond messaging, other interventions also came out of the process. To foster girls’ sense of empowerment, Jilinde developed Brighter Future Events: community-based youth-focused gatherings. These events offer PrEP and reproductive health services alongside activities such as bead-making and entrepreneurship lessons, allowing girls to relate PrEP use to their aspirations. Additionally, satisfied PrEP users leverage the power of peer influence to identify eligible girls with whom to talk about PrEP and emphasize its benefits. PrEP users also hand out AGYW-friendly, relatable and easy-to-understand information and education materials (IEC), which reinforce the idea that PrEP is the “in” thing. This peer-to-peer engagement creates a safe space, providing ambivalent young women opportunity to discuss their reservations with their peers and hear testimonials in a non-judgmental environment.

Moving forward, Jilinde intends to incorporate preferred messages in a guide for peer educators, disseminate them to service providers, and promote unified communications for demand creation and service delivery. At the end of 2019, Jilinde transferred management of Kenya’s PrEP program over to the Kenya government’s NASCOP. As part of the transition, Jilinde has contributed to NASCOP’s technical guidance on demand creation, provided campaign materials for PrEP and transferred its PrEP communications materials and social media platforms to NASCOP. “It has been such an important priority to make this a smooth transition,” Aigelgel says.

Looking ahead in 2020, Jilinde will undertake formal research on the impact of its outreach strategies. Aigelgel emphasizes it is vital to continue to learn if AGYW like the messages, show up at Brighter Future Events, engage with the peer-driven conversations, use safe spaces, and respond to campaigns. Findings will be part of an iterative body of evidence to determine where the Kenyan government should invest and what interventions have the greatest impact.

For more resources on AGYW segmentation, see:

• Podcast: Human-Centered Design and Prevention in the Real World – AVAC
• Webinar slides: Demand Creation: Developing an Insights-Driven Strategy – OPTIONS, EpiC and RISE PrEP Learning Network
• Webinar: Quantitative results of Breaking the Cycle of Transmission research – AVAC, PMM
• Webinar: Qualitative results of Breaking the Cycle of Transmission research – AVAC, PMM
• Article: Reaching and Targeting More Effectively: The application of market segmentation to improve HIV prevention programmes – AVAC in Journal of the International AIDS Society

A new episode of our Px Pulse podcast is ready for download!

What’s all the fuss about F/TAF? Listen to this episode for a snapshot of the issue and a preview of what will take much of AVAC’s – and our partners’ – attention in 2020. The US Food and Drug Administration (FDA) approved F/TAF (Descovy) as daily oral PrEP in October 2019. But there’s was one notable caveat: the label excluded those who are at risk from “receptive vaginal sex”, indicating that more data is needed for the drug to be approved as HIV prevention for cisgender women. The FDA’s supplemental approval requires Gilead to conduct a safety and efficacy trial in cisgender women to produce the lacking data by 2025, with a draft trial protocol before the end of this year.

As Gilead drafts the protocol, civil society, advocates, communities and all stakeholders must engage with planning for this trial from A-Z. In this episode, we look at what’s different and what’s the same between F/TDF (Truvada) and F/TAF, what’s driving innovation in the proposed trial design, why it’s so essential for advocates to engage and more.

For the full podcast episode, highlights and resources, visit avac.org/px-pulse. And subscribe on Apple Podcasts, Spotify or wherever you get your podcasts!

In AVAC Report 2019: Now What?, we called out to these advocates, members of “Generation Now”, encouraging them to sustain their bold efforts in the fight against HIV. Below is one response and more are available here.

The author, David Ita, is a community HIV prevention advocate from Nigeria and 2019 AVAC Advocacy Fellow with New Vaccine and Microbicide Advocacy Society (NHVMAS).

Dear AVAC,

Reading your letter to Generation Now, made me think of my own work in HIV advocacy and the particular challenges young people in Nigeria face accessing both sexual and reproductive health services and HIV prevention options. These barriers have a particularly negative affect on young women. Adolescent girls and young women contract HIV earlier in life and have higher incidence of HIV infection than their male peers.

As an AVAC Advocacy Fellow, I promote the integration of sexual and reproductive health (SRH) services and HIV prevention for young people in Nigeria and I’m working to increase young people’s capacity to serve as HIV prevention advocates in their community. This work makes connections that simply must be made if we want to succeed in defeating HIV. For example, I have worked with civil society, the Ministry of Health and the Ministry of Education to address reducing the age of consent for HIV testing and treatment. I want to equip young people with the knowledge necessary to make informed choices regarding their health. This means integrating SRH curriculum in schools and disseminating information regarding PrEP amongst youth. Sharing knowledge is essential amongst this population. Imagine, a 2017 National Health Survey showed that only 29 percent of young women and 27.9 percent of young men in Nigeria were able to name accurate prevention methodologies! We all must awaken to how important this work is, now imperative it is to change numbers like those. It’s also important to be very serious about incorporating a range of perspectives into the work I do. I have surveyed young people throughout Nigeria on their experiences, and opinions regarding SRH and HIV prevention. These perspectives continue to inform my work with young people.

I have learned much from what they have shared with me. As the youth in my community work together to respond to serious structural obstacles and demand access to necessary services, I see their passion and dedication. To look to the future with optimism, I have made a dedication of my own, putting the younger generation in the center of my advocacy. We all must awaken to how important this work is.

David Ita