Youth Voices at the Center: Reflections from the PATC³H-IN INSPIRE Annual Meeting in Lagos, Nigeria

Youth Voices at the Center: Reflections from the PATC³H-IN INSPIRE Annual Meeting in Lagos, Nigeria

by | May 28, 2026 | Youth Advisory Board

By: Nomujuni Neale Natukwatsa & Aishat Adedoyin Koledowo

From May 4–7, 2026, researchers, policymakers, implementers, and young people from across Africa gathered in Lagos, Nigeria, for the annual meetings of the Prevention and Treatment Through a Comprehensive Care Continuum for HIV-Affected Adolescents in Resource-Constrained Settings Implementation Science Network (PATC3H-IN) and Innovative Network on the Science and Practice of Implementation, Research, and Engagement (INSPIRE). Hosted at the Lagos Marriott Hotel Ikeja, the meeting convened voices from multiple Clinical Research Centers (CRCs) across eight African countries to reflect on progress, spark innovation, and strengthen youth-centered approaches to HIV prevention, care, and advocacy.

As members of the INSPIRE Youth Advisory Board (YAB), we arrived in Lagos, meeting in-person for the first time as the YAB, carrying more than presentations and workshop materials. We brought lived experiences, community stories, and a shared commitment to ensuring that young people are not merely participants in HIV research but co-creators, leaders, and decision-makers. More importantly, we came with a clear message: meaningful impact and engagement happens when initiatives are built with young people, not for them.

The meeting focused heavily on implementation science, sustainability of HIV programs, youth-centered innovation, and meaningful youth engagement. But one theme consistently stood out throughout the week: “Young people are no longer the leaders of tomorrow; they are the leaders of today,” – Temitope Ilori, Director General of the National Agency for the Control of AIDS. In her words:

 “They are already shaping HIV research and policy.”

 

 

Beginning with Youth-Led Dissemination

The week officially began on May 4 with a half-day Youth Advisory Board (YAB) pre-conference workshop held at the Mövenpick Hotel, Ikeja, Lagos, focused on youth-led research dissemination. The workshop reflected months of collaboration that began earlier in January, when YAB members across the eight Clinical Research Centers (CRCs) within the PATC3H-IN network came together to develop youth-friendly dissemination videos. These videos were designed to translate HIV research findings into engaging, accessible content that resonates more meaningfully with young audiences, responding to the growing need for research communication that young people can easily connect with and understand.

Fourteen youth-led dissemination videos were presented and reviewed during the workshop. The atmosphere was both exciting and deeply reflective. Participants, including external reviewers and non-YAB members, were divided into small breakout groups to review the videos using a SWOT analysis approach.

What made this workshop powerful was not simply the videos themselves, but the process behind them. Young people had taken complex research findings and transformed them into relatable stories, visuals, and messages that communities could understand. The discussions was guided by clarity, creativity, inclusiveness, and communication effectiveness.  Reviewers provided constructive feedback that challenged us to think more critically about audience engagement, storytelling, and accessibility. Rather than criticism, the feedback sessions felt like co-creation in action, with researchers, implementers, and young people learning from one another.

The workshop ended with certificate presentations recognizing the work of the YAB members and discussions on publication, dissemination plans, and future engagement strategies. For many of us, this recognition hinted at something bigger. Young people can help accelerate dissemination of research findings.

YAB Members (Back row-from left; YAB liaison Dr. Kelechi Chima, Hezekaiah Samuel, Godswill Nwoha, Anele Zulu, Asima Kapalepale, Phillip Chinseu, Claire Pimer, Raine Renatus, and Chinedu Ude. Front row-from left; Jackline Msusa, Stella Chiyonga, Nathan Nganga, Aishat Koledowo, Neale Nomujuni, and Hannah Nkhoma. Pc: Prof Joseph Tucker

Putting Youth Experiences on the Main Stage

On May 5, the official INSPIRE Day 1 of the Annual Meeting began with sessions focused on youth-led innovation, implementation science, and partnership building. One of the major highlights for the YAB was the session titled “Youth Advisory Board (YAB): Reality Check & Translation.”

Together as co-chairs, we presented an overview of the INSPIRE Cross-PATC³H-IN Youth Advisory Board, reflecting on our journey from 2025 to date. The presentation highlighted how young people across the CRCs have contributed to manuscript development, abstract submissions, social media engagement, dissemination planning, and implementation science activities.

Beyond metrics and outputs, we reflected on the importance of creating spaces where youth perspectives are genuinely valued. Too often, youth engagement is discussed theoretically. At INSPIRE and PATC³H-IN, we experienced what it means when young people are integrated into leadership, planning, and dissemination efforts in meaningful ways.

The panel discussion that followed became one of the most emotional and inspiring moments of the meeting. YAB members shared personal reflections on their journeys, the challenges of balancing advocacy and academics, navigating stigma, and learning how to speak confidently in global research spaces.  There was honesty in those conversations. Young people spoke not only as beneficiaries of HIV programs but also as researchers, storytellers, implementers, and leaders shaping the future of adolescent HIV programming.

YAB Panel Discussion (From left to right; Pimer Claire, Godswill Nwoha, Neale Nomujuni, Chinedu Ude, Aishat Koledowo, Raine Renatus  PC: Prof. Joseph Tucker

Bridging Research and Policy

During the meeting, youth engagement took another important step forward during the “Youth HIV Research Dissemination for Policy-Makers Workshop.” The session explored how youth-friendly dissemination strategies can influence advocacy and policy change.

Co-chair Neale Nomujuni had the opportunity to participate as a panelist in a discussion on disseminating research to influence policy in Nigeria, alongside policymakers, researchers, and implementation scientists. The discussion centered on a critical question: how do we ensure research findings move beyond conference rooms and journal publications into actual policy and community impact? One recurring message emerged clearly, “policymakers need evidence that is understandable, timely, practical, and community-informed”. Young people are uniquely positioned to bridge this gap because we understand how to communicate research in ways that resonate with our peers and communities.

Later that day, CRC breakout sessions co-led by Dr. Kelechi P. Chima and Aishat Adedoyin Koledowo provided an opportunity for YAB members to further refine dissemination strategies for their videos while sharing lessons learned from their respective countries. The discussions highlighted the diversity of contexts represented across the network while also revealing common challenges faced by young people and HIV programs across African settings.

 

More Than a Meeting

Beyond the formal agenda, the annual meeting became a space for connection, mentorship, and inspiration. Young people networked with researchers, policymakers, and fellow advocates from across the continent. Conversations continued in hallways, during meals, and long after sessions had ended.

There was also something deeply affirming about seeing youth voices centered throughout the meeting, not as symbolic representation, but as active contributors to scientific and implementation discussions representations.

 

Youth Co-creation Practical Guide Launch 

The launch of the Youth Co-Creation Guide further reinforced this commitment to meaningful youth engagement. The guide emphasizes that young people should be involved from the beginning of projects, not brought in after decisions have already been made.

As we returned home to our different CRCs, many of us carried renewed motivation and clearer purpose. The week in Lagos reminded us that youth-led work matters. Young people are capable of translating evidence into action, transforming research into stories, and turning lived experience into leadership.

The future of adolescent HIV prevention and care cannot be designed without young people at the center. In Lagos, that future felt visible, collaborative, and already in motion.

“Engagement should move beyond consultation to co-creation because the most sustainable HIV youth solutions are built with young people, not for them”

Back row from the left; Dr. Kelechi Chima, Stella Chinyonga, Hezekaiah Samuel, Asima Kapalepale, Claire Pimer, Anele Zulu, Nathan Nganga. Front row from the left; Beene Chitempa, Raine Renatus, Chinedu Ude, Jackie Msusa, Hannah Nkhoma, Godswill Nwoha, Neale Nomujuni, Phillip Chinseu, Aishat Koledowo, Prof. Joseph Tucker, and Abdulahammed Babatunde

From Surviving to Thriving: The BeYOUtiful Mindz Movement

From Surviving to Thriving: The BeYOUtiful Mindz Movement

by | Apr 28, 2026 | INSPIRE Designathon

Written by the BeYOUtiful Mindz Team | South Africa

More Than Just a Project

For far too long, mental health conversations, especially among adolescents and young people, have been whispered in corners, shaped by stigma, or ignored altogether. But what if we shifted the narrative? What if survival was no longer the goal, but thriving became the standard?

This is the heartbeat of BeYOUtiful Mindz.

BeYOUtiful Mindz is not just another mental health initiative. It is a movement rooted in empathy, lived experiences, and the urgent need to create safe, accessible spaces for young people, particularly those navigating the complex realities of living with HIV. At its core, we recognize that young people are not just patients or statistics. They are individuals with dreams, fears, identities, and voices that deserve to be heard.


What We Set Out to Do

Our goal has been simple but ambitious. We aimed to integrate mental health support into existing adolescent HIV services in ways that are practical, accessible, and sustainable.

We trained lay counsellors, peer mentors and community health workers to deliver basic mental health support through psychoeducation and structured counselling approaches. By embedding this support within clinics, communities, and youth spaces, we hoped to bring care closer to where young people already are.

This approach allows mental health care to feel more relatable and less intimidating, while also strengthening the existing support systems around young people.

 

What We Have Learned So Far

As the Designathon continues towards June, our journey has been shaped as much by challenges as by progress.

One of our earliest lessons was that context matters more than planning. During our first training sessions, we encountered a language barrier. While the training was expected to be delivered in English, many participants were more comfortable engaging in their home languages. This affected participation and understanding, reminding us that accessibility is not only about location, but also about language.

We also faced logistical challenges. Transport had been arranged through the Department of Health, but on the first day it was not available. We had to follow up with participants individually to ensure they could attend. Although many still arrived, this experience highlighted how quickly plans can shift in low-resource settings and how important flexibility is.

Another key challenge was perception. Many participants initially associated mental health only with severe and visible conditions. When we introduced psychoeducation, engagement was slow and uncertain. It became clear that before introducing tools and interventions, we needed to create a shared understanding of what mental health actually is.

These early experiences pushed us to adapt in real time. We moved our training venue from our office in Vincent to a decommissioned clinic in Mdantsane, closer to the community health workers and lay counsellors. The space was simple, but it was functional, with running water, electricity, desks, and chairs. More importantly, it was accessible.

This shift made a noticeable difference. Reducing the distance between participants and the training space improved attendance and engagement. It reinforced an important lesson. Proximity and convenience are not minor details. They are central to participation.

As the days progressed, we began to see change. Participants became more engaged, more open, and more willing to take part in discussions. Conversations that once felt hesitant started to flow more naturally. There was growing curiosity and a sense of ownership over the learning process.

This shift did not happen overnight. It required patience, adaptation, and continuous support. It also showed us that resistance is not rejection. Sometimes it is simply unfamiliarity.


Why This Work Matters

Through this process, we have been reminded why integrating mental health into HIV care is so important. Survival often looks like attending clinic visits, adhering to treatment, and managing daily challenges quietly. But thriving goes beyond that.

Thriving means feeling seen, understood, and supported. It means having the language to express emotions, the confidence to seek help, and the ability to build meaningful connections.

By working through peer mentors, lay counsellors and community health workers, we are helping to create spaces where young people can share their experiences without fear of judgment. These spaces are not just about support. They are about connection, identity, and belonging.

Looking Ahead

As we approach the final months of the Designathon, we carry forward the lessons we have learned so far. We have learned that flexibility is essential, that community voices must guide implementation, and that meaningful change takes time.

We are continuing to refine our approach, strengthen engagement, and build confidence among those delivering the intervention. Each challenge has helped us better understand what it takes to make mental health support work in real-world settings.

BeYOUtiful Mindz is not only about addressing mental health challenges. It is about changing how young people experience care. It is about creating a shift from surviving to thriving, one conversation, one session, and one connection at a time.

 

Because thriving is not a privilege. It is a right.

 

Tugambe, Talk to Us

Tugambe, Talk to Us

by | Mar 23, 2026 | INSPIRE Designathon

Written by: Patricia M. Nabifo, Ochen Eric, Kintu Timothy Mwanje, Raymond Bernard Kihumuro | Team Tugambe 

Tugambe is a word in Luganda that means “talk to us.” The phrase captures a reality we kept missing in HIV clinics. Imagine this: a teenage girl sits across from a healthcare provider who is rushing to keep up with a long queue of patients. Her viral load is reviewed and her medication is dispensed, but no one asks how she feels. Antiretroviral therapy keeps her body healthy, yet the health of her mind often remains unseen.

Here’s something most people don’t know: Up to one in three young people living with HIV in sub-Saharan Africa experience depression. As young adults with a medical background in HIV care, our team recognizes that depression is a significant concern. Because depression is quiet, it is easy to miss. Crowded waiting rooms, ten-minute consultations, and overwhelmed providers create a system where mental health gets pushed aside. We had to do something.

The turning point came when we were accepted into the INSPIRE Designathon. Suddenly, there was space to think differently. We asked the simple questions: What if mental health screening did not have to compete with busy clinics and limited time? What if young people could engage on their own terms, privately and without pressure? 

These questions led us to Interactive Voice Response (IVR). IVR is not glamorous. It does not require smartphones or internet access. It is the same technology behind appointment reminders and automated phone menus. We believed its simplicity is its strength. A young person can call from any phone, listen to prompts in their own language, and respond using their keypad. No forms. No waiting rooms. No eyes watching.

Hand texting on phone.

Still, we did not know whether this approach would feel acceptable, which language would feel safe, or whether an automated system could be trusted with something as personal as emotional wellbeing. So instead of quickly building, we chose to slow down. We focused on formative work. The goal became listening before designing and learning before scaling.

As the idea took shape, we told our story; this time in a competitive pitching space. We shared not only the idea, but also the uncertainty behind it. We spoke honestly about our concern for young people living with HIV and our belief that IVR could help surface depression earlier. Emerging among the winners mattered. It gave us confidence and direction. It also helped us see this work beyond a single pilot. Our vision now stretches over the next several years, with the goal of making depression management a routine and integrated part of HIV care.

Progress, however, has not been straightforward. Like much research in Africa, one of the biggest challenges has been navigating ethics and regulatory approvals. As early career researchers, we have learned how slow, political, and demanding these processes can be. Inefficiencies within regulatory systems can delay promising work and strain limited resources. Learning how to maneuver these structures without losing momentum has required patience and resilience.

Beyond approvals, this journey has taught us how to pitch ideas clearly, how to develop community engagement plans that go beyond checklists, and how to listen during monthly engagements rather than defend assumptions. We have built new relationships, expanded our networks, and learned to recognize opportunity when it appears. So far, the work has been less about technology and more about people, trust, and learning to sit with uncertainty.

We now look ahead to securing institutional ethics approval and national regulatory clearance so the research can begin. That step matters, but it is not the point of this work. The point is whether young people living with HIV finally have a safe way to say how they are really doing.

This journey has taught us one clear lesson. Mental health in HIV care will not improve by adding more tasks to already overstretched clinics. It will improve when systems are designed to listen. If Tugambe succeeds in doing just that, in creating space for young people to speak without fear, interruption, or judgment, then it will have done something far more important than deploying a tool. It will have broken the silence.

The Fragility of Peer Power: What an IDP Camp Taught Us About Youth-Led HIV Outreach

The Fragility of Peer Power: What an IDP Camp Taught Us About Youth-Led HIV Outreach

by | Mar 17, 2026 | INSPIRE Designathon

Written by: Julianah Adebisi and Miracle Adesina | IMPACT Team, Nigeria.

We didn’t notice it at first, but something had changed.

Just weeks earlier, Zainab had become a major driving force behind HIV outreach in the camp. Young people were showing up to discussions. Her peers listened, showed up, and stayed engaged.

“Zainab” engaging her peers during an HIV outreach session in the camp. Peer trust is often the foundation of youth health programs.

 

There was energy, the kind you hope for when working with peer-led models.

Then, a personal conflict disrupted those relationships, and with it, the flow of new participants into the program.

Our most successful outreach channel had slowed to a halt.

That moment made us rethink what we thought we understood about peer-led models, especially in displacement settings.

 

Why we chose a peer-led approach

Young people often learn about sex, relationships, and risk from their peers long before they encounter formal health services. Peer-led outreach taps into these existing social networks. The logic is simple, versatile, and compelling: young people trust their peers, understand each other’s realities, and communicate information in ways that feel relatable.

For the Innovative Mobilization and Participatory Action for Community Transformation (IMPACT) project, this approach felt especially appropriate as we worked with young people living in Internally Displaced Persons (IDP) camps in Nigeria.

We trained a small group of youth champions and encouraged them to reach out to peers in their own social circles: friends, neighbours, and classmates at camp. It was a snowball approach. Each young person could bring others.

It seemed to work; we were gaining momentum.

 

Where we hit a wall

One champion stood out. Zainab was motivated, well-respected, and committed to the project. Through her efforts, we saw a noticeable increase in participation. Her peers listened to her. They showed up. Momentum began to build.

Without realizing it, we began to rely heavily on her network.

So, when conflict emerged from within her circle, the impact rippled outward. She stepped back from active recruitment. The peers she had mobilized became less engaged. New participants stopped coming.

At first, it felt like a setback. We had invested in training. We had seen progress, and now the progress was slowing.

However, with reflection, we realized that this wasn’t a failure of Zainab or her peers.

It was a gap in our project design.

 

What this taught us about peer networks

Peer-led models often assume that social networks are stable. In some communities, that may be true. However, in IDP camps, relationships live under constant strain.

Young people are navigating economic stress, family trauma, uncertainty about the future and competition for limited resources. These pressures do not stay outside the room when we hold HIV sessions; they affect how young people relate to each other.

In that environment, small disagreements can grow quickly.

Emotional strain is high, and when leadership is concentrated in one person, a single strained relationship can stall momentum.

What slowed our outreach was not resistance to HIV education. It was the fragility of relationships in a high-stress setting.

An illustration of shared leadership in youth outreach. Programs are strongest when responsibility is distributed.

 

An illustration of shared leadership in youth outreach. Programs are strongest when responsibility is distributed.

Rethinking how we support youth champions

The situation compelled us to reassess our support for young people who assume leadership roles in health programs.

Being a youth champion is more than delivering information; it means managing friendships, expectations, and sometimes tension, all while mobilizing others.

From this experience, we learned that peer-led models work better when leadership is distributed, rather than concentrated. Recruiting champions in clusters makes the program less vulnerable to the ups and downs of a single relationship.

We also learned that conflict is not a disruption to community work but a part of it. Creating space for early conversations, mentorship, and mediation matters more than we initially realized.

 

Designing youth health programs for real-life complexity

In displacement settings, health education competes with urgent daily needs influenced by economic pressure, emotional stress, and unstable social relationships, all of which affect how young people engage with HIV prevention.

Peer-led approaches need to be designed with flexibility and empathy, recognizing that health is only one part of what young people are dealing with every day.

Our experience reminded us that effective youth health programming in humanitarian contexts requires careful design, including:

  • Avoiding over-reliance on one champion
  • Investing in supporting relationships, not just training
  • Linking HIV outreach with livelihood support, psychosocial services, and other programs that respond to young people’s everyday realities

 

Moving forward

The setback in our recruitment was not the end of the story.

It pushed us to distribute leadership more intentionally, to check in more frequently with our youth champions, and to treat relational dynamics as part of program design.

Peer power remains one of the strongest tools in youth HIV prevention.

However, these peer-led models are only as strong as the relationships that sustain them.

Youth champions and participants during outreach. Peer power continues, strengthened by shared responsibility.

When Data Isn’t Enough: Listening to Youth Living With HIV

When Data Isn’t Enough: Listening to Youth Living With HIV

by | Mar 10, 2026 | INSPIRE Designathon

Written by: Damilola Ayowole, Temitope Oluwadare, Soneye Islamiat & Azees Ayotunde | Team Abeokuta, Nigeria

We have spent years working with numbers, prevalence rates, treatment coverage, viral suppression targets. Data shapes how we understand HIV, how we design programs, and how we measure success. Yet, during the designathon that birthed HIV-In-Colors, we confronted a difficult truth: data alone does not tell the full story of adolescents and young people living with HIV.

That realization became both the greatest challenge and the most important lesson of this project.

 

The challenge: when evidence feels incomplete

As public health physicians, we are trained to trust evidence. Surveys, indicators, and clinical outcomes guide our decisions. But as we began designing HIV-In-Colors, we felt an uncomfortable gap between what the data said and what young people actually lived.

The numbers told us that adolescents were on treatment. They did not tell us how it felt to hide medication from friends, to fear disclosure at school, or to internalize stigma long after a clinic visit ended. The data showed retention rates; it did not show shame, silence, or resilience.

At the designathon, our initial instinct was to “strengthen psychosocial support” in familiar ways, add counseling sessions, integrate screening tools, train providers. These ideas were evidence-based, but they were also top-down. We were designing for young people, not with them.

That was our first major challenge: unlearning professional certainty.

 

Learning to listen differently

The designathon forced us to slow down and listen, not through questionnaires, but through stories. Conversations with fellow participants, mentors, and youth advocates pushed us to ask a different question: What if young people could show us their experiences instead of explaining them?

That question reshaped the project.

Photovoice emerged not simply as a research method, but as a listening tool we needed to learn. The idea that adolescents could use images to document stigma, hope, isolation, or healing shifted the balance of power. Instead of extracting information, we created space for expression.

This approach challenged us deeply. As researchers, we value structure, defined tools, measurable outcomes, clear endpoints. Photovoice resists rigidity. It is emotional, unpredictable, and deeply personal. It demanded trust: trust in participants, trust in the process, and trust that meaning could emerge without being forced.

The designathon lesson: Youth are not just beneficiaries

One of the most powerful lessons from the designathon was realizing that youth expertise is not symbolic, it is practical. When adolescents and young people living with HIV became central to the design conversation, the intervention evolved in ways we had not anticipated.

Healing circles, for example, were initially framed as group therapy sessions. Youth feedback transformed them into something broader: safe, recurring spaces for shared silence, laughter, anger, and belonging. The emphasis shifted from “intervention delivery” to community formation.

We learned that stigma is not only external. Many young people spoke about stigma they had absorbed into their self-identity. No survey captured that adequately. Their stories did.

Listening also revealed constraints we might otherwise have overlooked, fear of being photographed, concerns about confidentiality, emotional fatigue. These realities shaped our ethical safeguards and implementation strategies far more effectively than any protocol draft.

 

When impact is not immediately measurable

Another challenge was resisting the urge to define success too narrowly. In public health, we often prioritize quick wins and easily measurable outcomes. But psychosocial healing does not follow linear timelines.

Some lessons from HIV-In-Colors were subtle: a participant speaking for the first time in a group, someone choosing a metaphor instead of words, another deciding not to share an image publicly, and feeling empowered by that choice.

The designathon helped us recognize that process itself can be impact. Creating a safe space is not a precursor to intervention; it is the intervention.

This reframing was uncomfortable. It required us to accept outcomes that are harder to quantify but no less real.

 

What we will carry forward

Looking back, the most important lesson from HIV-In-Colors is this: programs fail when we confuse participation with inclusion. Inviting youth to attend sessions is not the same as inviting them to shape meaning.

Listening requires surrender of expertise, of timelines, of control. But it also creates interventions that breathe, adapt, and endure.

The designathon strengthened our belief that innovation in HIV care does not always mean new technology or complex systems. Sometimes, it means creating space for young people to be seen, heard, and trusted as narrators of their own lives.

As we move forward with this project and others, we carry a quieter confidence. We still value data deeply, but we now ask different questions of it. We look for the stories it misses and the voices it cannot capture.

Because when it comes to adolescents and young people living with HIV, listening is not optional, it is the work.