Tugambe, Talk to Us

Tugambe, Talk to Us

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

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.

Beyond the Clinic Walls: Rethinking HIV Prevention Through Rural Drug Shops

Beyond the Clinic Walls: Rethinking HIV Prevention Through Rural Drug Shops

Written by: Nomujuni Natukwatsa, Florence Mwangwa, and Collins Ampaire | Team Gamba Link, Uganda

What if the first conversation about HIV prevent ion didn’t happen in a hospital but in a small drug shop down the road?

In many rural communities across Uganda, young people rarely walk into hospitals to ask about sexual health products. Instead, they rely on community drug shops and trusted community care providers as their first point of contact for sexual health needs which may include HIV prevention services. Yet these accessible and trusted spaces are often excluded from formal HIV prevention strategies. 

Our inspiration

The INSPIRE Designathon provided a platform for us to develop the Gamba Link project. Gamba means to speak, tell or address in Bantu languages in Uganda. Our project aims to onboard community medicine providers by introducing them to structured HIV prevention information in order to support them to speak to young people about accessing biomedical HIV prevention products. The Gamba Link project developed the PREP-Go toolkit, a tool box of familiar communication tools to support community medicine providers like drug shop attendants to initiate youth-friendly, non-judgmental conversations about using HIV prevention products and link adolescents and young adults (AYAs) to peer navigators for PrEP services at formal health facilities. 

The challenge that birthed Gamba Link

Pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP) are proven, effective HIV prevention tools. However, uptake among adolescents and young adults (15–24 years), particularly in rural areas, remains low. Young adolescents who are just beginning their sexual health journeys (15-20 years) are particularly vulnerable. Structural barriers such as low knowledge, fear of discussing sexual related matter with authority figures, stigma, limited youth-friendly services, and weak referral systems continue to stand in the way. 

Through community engagement and prior evidence, we learned an important insight — many rural youth do go and seek sexual health products from trusted community drug shops. These spaces are informal, familiar, and discreet. Despite this, drug shop attendants are rarely equipped with the confidence, language, or tools to discuss sensitive topics like HIV prevention. 

This gap presented both a challenge and an opportunity.

 

Turning community drug shops into gateways for HIV prevention access

We designed PREP-Go, a structured communication toolkit that supports drug shop attendants to confidently and non-judgmentally initiate conversations about accessing HIV prevention with the help of age appropriate support through peer navigators, who provide PrEP in formal health services. 

Because community drug shops are not yet authorized to prescribe PrEP, we believe PREP-Go toolkit enables them to participate in HIV prevention actively by:

  • Arousing curiosity about PrEP products 
  • Sharing accurate, stigma-free PrEP information 
  • Providing a clear referral pathway to supportive PrEP providers 

The toolkit includes a simple poster with visual information on who needs PrEP and how to access it, flash cards with PrEP choices, and a short, animated video to watch privately or share with acquaintances. All participating shops will have the name and phone contact of the nearest PrEP peer navigator. 

Designing with, not for, the community

We engaged multiple stakeholders from the start: adolescents and young adults, drug shop attendants, and peer navigators. Their lived experiences helped shape every design decision. 

Drug shop attendants told us they often wanted to help young people but feared saying the wrong things which would scare away their customers. Youth shared that they valued confidentiality, discretion, and respectful communication more than medical expertise. Peer navigators emphasized the importance of building trust in the communities. These insights informed a key design principle: keep it simple, visual, supportive, and scalable.

Testing the solution in the real world

The PREP-Go tool kit is being tested through a qualitative pilot study in four rural community pharmacies and drug shops in Lyantonde District of southwestern Uganda. The study uses a pre- and post-intervention design to assess feasibility, acceptability, fidelity, and sustainability. 

To understand how the toolkit works in practice, we are collecting data from: 

  • Drug shop attendants who are using the toolkit 
  • Peer navigators supporting referrals 
  • Trained youth mystery clients observing real interactions

By combining focus group discussions, in-depth interviews, and mystery client visit reports, we aim to capture honest feedback on how youth experience PrEP conversations in these informal health settings. 

Why this matters for youth

Young people in rural communities face a disproportionate risk of HIV due to social vulnerability, early sexual debut, limited access to services, and stigma. By bringing youth acceptable PrEP conversations closer to where youth already are, the PREP-Go toolkit helps normalize HIV prevention conversations even in commercial spaces and reduces missed opportunities for seeking these services. 

Equally important, the project builds youth leadership. Peer navigators and mystery clients gain skills in advocacy, communication, and community engagement — strengthening local capacity beyond the project lifespan. 

Looking ahead

We envision a world where talking about HIV prevention is as normal, stigma-free, and accessible as buying pain relief medicine at a drug shop. 

Through the PREP-Go toolkit, we test if well-designed communication tools can unlock big changes in how communities approach HIV prevention. With continued collaboration, learning, and refinement, this model has the potential to transform rural HIV prevention across Uganda and similar settings. 

Innovation does not always require new buildings or complex technologies. Sometimes, it starts with the right tools sparking a conversation among willing people. 

The Unseen Scars: Why Family Rejection Fuels Suicide in Adolescents Living with HIV

The Unseen Scars: Why Family Rejection Fuels Suicide in Adolescents Living with HIV

Written by: Aishat Adedoyin Koledowo, Co-Chair INSPIRE Youth Advisory Board, S-ITEST, Nigeria

Family should be an unshakeable source of love, safety, and understanding for young people. After all, it provides the foundation upon which they build the resilience needed to face the world’s challenges. Yet, for far too many adolescents, home becomes the first place of rejection.

Although these issues don’t often make headlines, abuse and stigmatization within families can drive suicidal thoughts and actions among young people with HIV. While society often points fingers at generic causes like “peer pressure” or “mental weakness,” we rarely discuss the invisible crisis unfolding behind closed doors: the isolation, the relentless verbal attacks, abuse and the constant reminder of being “different” and “useless” delivered by the people meant to protect them.

The Silent Abuse: What Stigma Sounds Like at Home

Stigma from family members is rarely a single, overt act; instead, it’s a slow-acting poison that manifests as emotional neglect, physical distancing, and cruel language, creating a deep wound of exclusion. This rejection is often rooted in fear and misinformation about HIV transmission, leading to subtle but devastating microaggressions that establish physical and emotional distance, such as a family member pulling back and instructing: “Don’t share cups with me. You need your own plate. Don’t use this! Don’t use that!” Stigma often escalates into emotional abuse that harms the adolescent’s self-esteem and future hopes, cutting deepest because it comes from a primary caregiver. It may sound like: “You are a useless child. You will never amount to anything, and this is your punishment,” or the harsh accusation of bringing shame upon the family. An adolescent, still navigating their emotional development and identity, internalizes this consistent rejection as absolute confirmation that “I am unworthy of love.”

The Breaking Point: From Stigma to Suicidal Thought

Adolescents living with HIV already manage complex challenges, including a strict medication schedule, potential body changes, and the ever-present fear of disclosure. When these difficulties are relentlessly compounded by family rejection or abuse including physical violence, harsh punishments, or deliberate social isolation to “protect the family image” their emotional resilience shatters. These experiences are direct fuel for depression, which is the single biggest predictor of suicide. Without a foundation of emotional support, young people internalize the shame until it morphs into profound hopelessness. Their inner dialogue, once focused on coping, becomes riddled with crushing anxiety and self-doubt, leading to desperate questions like, “how will I ever tell my partner about this when my own mother won’t touch me?” and, “will I ever be able to be someone important in life, or am I just a burden?” This progression of shame and withdrawal fuels suicidal ideation and a feeling that “I just want to end it all”. The tragedy is that these young people are not succumbing to the virus; they are tragically succumbing to the condemnation that has replaced the compassion they desperately need.

Stories Behind the Silent Statistics

Behind every statistic detailing youth suicide and HIV, there is a devastating, preventable story. Consider the case of a teenage girl who stopped taking her essential ARV medication simply because her mother would only communicate with her via notes, labeling her “a disgrace.” In this scenario, the fear of confrontation and rejection became a greater threat than the disease itself. There was also a boy who attempted suicide after being severely beaten for simply disclosing his status to a trusted teacher, believing he had ruined his family’s reputation forever. These are not isolated incidents; they represent countless silent battles occurring in homes worldwide where fear, often fueled by profound misinformation, tragically trumps basic human empathy and a child’s fundamental right to safety and acceptance.

A Call for Compassion

When stigma begins at home, the process of healing must also begin there. Families and communities possess the power to save lives by fundamentally changing their response from one of fear to one based on facts, and from one of shame to one of unwavering support. This begins with education, recognizing that HIV is a manageable, chronic condition, and proactively debunking myths, such as the idea that sharing cups transmits the virus. Crucially, it demands unconditional love, as research has confirmed that just one supportive adult can drastically reduce the risk of suicide among vulnerable youth. Promoting open conversations is vital, ensuring adolescents have safe spaces to ask their biggest, scariest questions about their future, relationships, and identity without the fear of judgment. For families struggling to cope, seeking professional help through counseling may help them to process the diagnosis and rebuild trust. Ultimately, governments and NGOs must recognize this link by integrating robust, accessible mental health services directly into adolescent HIV care programs, ensuring the treatment of the mind is prioritized as much as the treatment of the body.

Choose Compassion, Save Lives

Adolescents living with HIV do not need pity; they need understanding, respect, and unconditional love. When families make the courageous choice of compassion over shame, they do far more than just save a relationship they save a life. It is incumbent upon all of us to recognize the silent crisis of family stigmatization and play our part in ending the suicides it tragically fuels. If you know an adolescent living with HIV, be the reason they feel seen and valued—not ashamed and alone. We must collectively speak up against family stigma and start the necessary conversation today.

Under the Stairs: What One Conversation Taught Us About Invisible Barriers to HIV Care

Under the Stairs: What One Conversation Taught Us About Invisible Barriers to HIV Care

Guest Authors: Monica Gbuchie, Ah’mad Akande, Fana-Granville Loizy | Team EqualCare, Nigeria

We met Ada during a community outreach program. She was seated underneath the stairs of the community townhall, keeping to herself, her crutches leaning against the wall. From afar, she looked like someone simply waiting to be attended to, but when we approached her, we learned she had been there for quite some time. She had come alone because her mother could not accompany her, and even though the journey was difficult, she refused to miss another opportunity to be seen. In that moment, she reminded us how much strength it takes to navigate the healthcare system when you are living with both a disability and HIV. Her presence there was an act of quiet courage.

During our conversation with her, she told us she had missed several visits in the past, not because she wanted to, but because transport was unreliable and she relied heavily on others to accompany her. Each missed appointment left her feeling like she was losing control of her own care. She wished she had a way to stay connected to her healthcare team even when she could not make it to the clinic.

This made us even more resolute in our commitment to develop EqualCare, a digital tool designed to support young people living with HIV and disabilities. EqualCare provides treatment reminders, easy access to trustworthy health information, and a peer navigation system. As we shared the idea with different people in our circle, many were genuinely excited about its potential. They said that having someone to talk to on days when they could not travel to health facilities would make young people feel less alone. We also received feedback that the app’s supportive features could be life changing and might even be expanded in the future to serve other persons with disabilities living with chronic conditions beyond HIV. Our conversation with Ada made these invisible barriers even clearer, and they continue to guide the work we do.

Challenges So Far and Lessons Learnt

Developing EqualCare has been a real learning experience for our team. We quickly discovered that true accessibility is not achieved through a single feature. It requires thoughtful design, simple navigation, and content that works for young people with different physical abilities and digital realities. One of our biggest hurdles has been finding experts with the right technical skills to build an app that can genuinely support users with diverse disabilities. Beyond technology, securing buy-in from stakeholders has been difficult, mainly because many clinics do not keep records of young people living with both HIV and disabilities. This lack of data makes it harder to identify and reach the very group the app is meant to serve. Early survey responses highlighted this gap and reminded us how invisible this population can be within health systems.

Another is finding the community itself and earning trust has required patience. Many young people have had mixed experiences with digital tools or health programs, so building confidence has meant showing up consistently and listening closely. These interactions have shaped our understanding more than any formal assessment could.

Along the way, we have learnt that our idea, although ambitious, is needed and we remain committed to getting it right. But it is also clear that we cannot do this alone. Stronger community engagement, supportive stakeholders, and sustainable funding will be essential to move EqualCare forward.

Looking Ahead

Meeting Ada showed us why this work must continue. Collecting feedback will not always be easy. Network challenges, shared phones, and long distances all shape how young people interact with digital tools. But stories like hers show us why we have to keep going. Each experience helps us refine EqualCare into something that reflects real needs rather than assumptions.

Our goal is simple. We want EqualCare to meet young people where they are, instead of expecting them to navigate systems that were never built with their circumstances in mind. Young people living with both disabilities and HIV are often unseen in healthcare settings, and their challenges rarely influence program decisions. They deserve better.

From sitting under the stairs at an outreach event to managing care at home, young people deserve support that fits into their lives. EqualCare is our commitment to designing a tool that finally sees them.