Designing PrEP Messages That Work for Young Women: Learning from the Jilinde PrEP project in Kenya

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”.

Swahili slogan

“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 AGYW Sgements Chart

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:

What’s All the Fuss About F/TAF? A Trailer for Action in 2020

What’s all the fuss about F/TAF for oral PrEP? The US Food and Drug Administration (FDA) approved drug maker Gilead’s Descovy (also known as F/TAF) as daily oral PrEP in October 2019, with 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 safety and efficacy trial in cisgender women on a timeline that aims for data by 2025.

In the aftermath of this approval, there are questions about the differences between these two forms of PrEP, what contribution F/TAF might make to the pipeline of prevention, and the vital role of stakeholder engagement as Gilead drafts the study protocol for a trial of F/TAF in women. We explore all this and more in this episode of Px Pulse.

Materials

Now what with F/TAF for PrEP? A call for action in 2020

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!

The Challenges for Young Nigeria

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

AVAC’s “3D” View of the World: 2019 and beyond

This infographic lays out AVAC’s top-line recommendations from AVAC Report 2019: Now What? The recommendations fall into three categories: deliver — prevention programs whose impact is well-measured and -defined; demonstrate — next-generation engagement for next-generation trials; develop — new targets for the post-2020 world.

UNAIDS Fast-Track Targets: The plan and the progress

The most widely-known UNAIDS Fast-Track goals were the 90-90-90 targets focused on diagnosing people with HIV, linking them to ART and supporting them to achieve virologic suppression. But these were only part of what the UNAIDS modelers said was needed to reduce new HIV diagnoses to 500,000 per year; the model also included significant scaling up of primary prevention including the targets listed below. There are gaps across the board, which helps explain how the world fell short of the hoped-for reduction in new HIV diagnoses.

Excerpted from AVAC Report 2019: Now What?

A Generic and Unifying HIV Prevention Cascade Framework

What get’s measured matters if and only if that measurement is linked to impact. The most common approaches to evaluating primary prevention don’t measure up. They measure commodities but not use. A count of the condoms or PrEP bottles handed to people does not tell you whether the condoms were used, the pills were taken—or even, often, whether the people receiving the commodities were at high risk of HIV. A simple, universal prevention cascade could help change that. This one, which presumes that HIV testing has happened and is focused on people at risk of HIV, suggests four stages (see A) and then shows how solutions could be tailored to fix the cascade (see B).

Excerpted from AVAC Report 2019: Now What?

Visualizing Multisectoral Prevention: The DREAMS program theory of change

This is PEPFAR’s own visualization of how its AGYW programs can effect change. It’s notable for the definition of a care package that touches on the individual and her community, and for the way it defines a range of outcomes. There isn’t anything comparable for PEPFAR’s Key Population Investment Fund, which is infusing resources into a range of countries. Some of that funding is going for ART; for primary prevention, a theory of change linked to incidence is a must. AVAC is working with allies in KPIF countries to make this demand.

Excerpted from AVAC Report 2019: Now What?

Monitoring Primary Prevention: What to look at and why it matters – for oral PrEP and more

A look at four major factors relevant to primary prevention and correlated interventions to support their impact.

Excerpted from AVAC Report 2019: Now What?

What Gets Measured Matters

There is enormous variability in country and funder/normative approaches to tracking PrEP program rollout. Assessments of progress require common, comprehensive measures against and estimates of the parameters seen here.

Excerpted from AVAC Report 2019: Now What?