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.

Breaking the Silence: Youth-Led Fight Against HIV Stigma in Northern Nigeria

Breaking the Silence: Youth-Led Fight Against HIV Stigma in Northern Nigeria

Guest Authors: Favour Christiana Ogbuagu, Abubakar Ismail Zango, Makkiyyah Sulaiman Muhammad, and Abdulmalik Ya’u | Youth Against HIV, Nigeria.

This blog post is the second in a series written by teams participating in the 2025 INSPIRE Designathon. Chosen from hundreds of submissions, these teams participated in a dynamic three-day sprint to sharpen their ideas and pitch innovative solutions to a panel of expert judges. Each team received funding to implement, adapt, and scale-up HIV interventions for adolescents and young adults over the coming year.

 In Northern Nigeria, conversations about HIV among adolescents are often silenced by stigma and shame. Studies show that more than nine out of ten young people in Nigeria hold stigmatizing attitudes toward people living with HIV, a reality that discourages testing, treatment, and open discussion.

This stigma weighs even more heavily on adolescent girls, who face layers of judgment tied to gender norms and patriarchal expectations. Many young people internalize these negative messages, hiding their fears, questions, or even their HIV status. Myths persist from the belief that HIV only affects “immoral” people to the idea that it can be cured with traditional medicine. In addition, reliable HIV information is not always available in Hausa, the most widely spoken language in Northern Nigeria. This gap leaves many adolescents uninformed or misinformed.

Our team— Youth Against HIV (YAGH) — saw these challenges firsthand and knew we needed to respond differently. Through the INSPIRE Designathon, we designed a project to:

  • Train peer champions to lead conversations on HIV
  • Strengthen digital tools to include Hausa-language support
  • Establish school-based HIV awareness clubs that can sustain these conversations over time

Why Youth-Led Approaches Matter

Young people often tune out when adults lecture them about HIV. But when the same message comes from a peer – someone who shares their language, humor, and lived experience, it resonates differently.

That is why we placed young people at the center of this intervention. We are training medical students to serve as HIV peer champions not as lecturers, but as conversation starters. Their mission is to create safe spaces where secondary school students feel comfortable asking questions they might otherwise keep hidden.

The Role of Digital Innovation

Language emerged as a key barrier. Much of the available HIV content is in English, leaving many Hausa-speaking adolescents excluded.

To address this, we are strengthening the Youth Leading HIV Awareness Campaign (YOLHAC) digital platform owned by Bridge Connect Africa Initiative by enabling its AI-powered chatbot to function in Hausa during the project period. This allows adolescents to ask questions anonymously, in Hausa or English, and receive accurate, evidence-based answers.

The classroom sessions will open the door to conversation, while the chatbot ensures those conversations can continue privately, at each student’s own pace. For many, that privacy is what makes it possible to ask sensitive questions without fear.

Implementation in Kano: Our Journey

Our journey to this point has been anything but linear. We initially planned to launch in Katsina State, but prolonged ethical clearance processes stalled the timeline. To keep momentum, we pivoted to Kano, which shares Katsina’s cultural and linguistic context.

In September 2025, we successfully trained a dedicated group of YAGH Champions, ten medical students passionate about changing the HIV narrative among their peers. Over two days, they gained skills in:

  • HIV education and stigma reduction
  • Communication and facilitation
  • Digital literacy
  • Professional conduct and community engagement

The sessions were interactive and practical, equipping the champions to confidently reach secondary school students and lead meaningful discussions. This training marked a key milestone: the transition from planning to action.

Lessons Learned So Far

Even before school implementation begins, the training phase has provided valuable insights:

  • Young people are eager to lead. The energy and commitment of our champions confirmed that youth want to be part of the solution, not just passive recipients.
  • Training builds confidence. Many champions had never facilitated HIV discussions before, but left the training prepared and motivated to step into schools with clarity and purpose.
  • Digital tools need visibility. The YOLHAC webpage and chatbot are powerful resources, but they must be actively promoted so students trust and use them.
  • Partnerships are key. Support from schools, teachers, and community leaders will be crucial to gaining access and sustaining the awareness clubs we aim to establish.

 

Looking Ahead

With the champions trained, the next step is implementation. Over the coming weeks, YAGH champions will visit five selected secondary schools in Kano to lead peer-to-peer HIV awareness sessions. These sessions will not end in the classroom. Students will be introduced to the YOLHAC platform, allowing them to continue learning privately, in their own language, and at their own pace.

We are also committed to establishing HIV Awareness Clubs in these schools. These clubs will serve as safe spaces where students can keep the conversation alive, supported by peer champions and teachers. Robust monitoring and reporting systems are in place to track progress, capture stories, and guide future scale-up to other states in Northern Nigeria.

Our journey so far has been about building a strong foundation, understanding the barriers, designing solutions, and equipping young people to lead the charge.

Training the YAGH champions is just the beginning. As they enter classrooms, they carry more than information; they carry hope, representation, and a promise: that HIV awareness can be youth-led, stigma-free, and accessible to every adolescent, in every language. Combining peer leadership with digital tools is more than an intervention; it is a pathway to breaking the silence and reshaping the narrative around HIV for young people across Northern Nigeria.

And this is only the beginning.

Co-Creating Change: Reflections from INSPIRE Finalists in Montreal

Co-Creating Change: Reflections from INSPIRE Finalists in Montreal

Guest Authors: Jo-Ann Caberoy (Philippines) and William Muthama (Kenya), INSPIRE Youth Co-creation Open Call Finalists

At the STI & HIV World Congress 2025 in Montreal, Canada, INSPIRE finalists joined a global co-creation workshop that brought together researchers, youth advocates, and communities to explore new ways of addressing sexual and reproductive health challenges. For INSPIRE, this was a proud moment, seeing young leaders not only participate but shape conversations on how inclusive, youth-driven solutions can take root.

The reflections of these finalists capture the spirit of collaboration, storytelling, and shared power that defined the workshop. This piece brings their voices together to highlight the lessons they learned, their personal experiences, and why co-creation is central to building more sustainable health solutions.

Why co-creation matters

Too often, sexual health interventions are designed for communities rather than with them. Both finalists agreed that the workshop challenged this traditional model by positioning youth and people with lived experiences as active co-creators.

One finalist explained, “Communities, including youth, co-define what matters. Lived experiences are treated as expertise. Solutions are developed and owned together. It’s not just engagement—it’s power-sharing.” For them, co-creation represented more than participation, it was about genuine collaboration and equitable partnerships that give young people the opportunity to lead.

Lessons from Montreal

The workshop unfolded in three parts: opening presentations and panel discussions, hands-on co-creation activities, and finally, refining the draft TDR/UNICEF practical guide on youth co-creation in health research. This design ensured that participants were not passive listeners but active contributors throughout.

For one finalist, authenticity stood out as a central value, “Personal stories and lived experiences enriched every conversation. Asking the right questions fostered genuine participation, not just token engagement.”

Another finalist noted how the Congress as a whole was a turning point in how young people are seen, “It was inspiring to see young people recognized not just as vulnerable groups, but as innovators and active partners in health solutions. The workshop showed that co-creation can and should be integrated even into traditionally hierarchical fields like HIV programming.” These reflections underline how co-creation is not just a method but a mindset shift, one that insists on valuing diverse voices and creating equitable space for dialogue.

The power of storytelling

Both finalists emphasized the transformative role of storytelling. One, who founded Youth Pulse in Kenya, shared how the co-creation approach deepened their belief in the power of stories to shift narratives, “In my work as a journalist, I’ve always believed in the power of storytelling, not just to inform, but to spark change. At Youth Pulse, storytelling is no longer a one-sided report—it’s a collaborative tool, letting young people shape their own stories.” This message resonated across the workshop, where stories from different cultural and professional backgrounds highlighted a shared question: How do we build solutions that truly reflect the people they’re meant to serve?

Collaboration and community spirit

Beyond structured sessions, the workshop fostered friendships and a spirit of collective action. Participants left not only with new insights but also with solidarity that transcended borders. “It was comforting to know that despite our diversity, we understood that working with people, especially those with lived experience requires openness and humility. We ended the day with new ideas and new friends rallying together against STIs and HIV,” one finalist recalled. This spirit of community was perhaps one of the most impactful outcomes. It showed that co-creation is not just about producing outputs, it is about building networks of trust and collaboration that continue long after the workshop ends.

Looking ahead

For both finalists, Montreal was not an endpoint but a beginning. One finalist left motivated to expand co-creation beyond mental health to sexual and reproductive health, youth civic engagement, and media production. “They say youth are the future, but co-creation taught me we are already the present. If given the space, tools, and respect, we don’t just contribute, we lead the way.”

The other finalist called the workshop “more than just a workshop—it’s a movement,” emphasizing the need to continue building participatory approaches in health research and advocacy. “We look forward to the outcomes of our sessions, which will contribute to enhancing community engagement and co-creating inclusive STI campaigns led by young people.”

Taken together, these reflections underline a powerful truth: co-creation transforms the way health challenges are addressed by valuing lived experiences, fostering authentic collaboration, and amplifying youth leadership. The STI & HIV World Congress 2025 Co-creation workshop was not just a space for dialogue, it was proof that when young people are given the opportunity to co-create, they bring innovation, resilience, and solutions that can reshape the future of global health.

How we turned our safe space into a digital lifeline

How we turned our safe space into a digital lifeline

Guest Authors: Aness Simon and Tamanda Chingoli, Team HushBuddy, Malawi

This blog post is the first in a series written by teams participating in the 2025 INSPIRE Designathon. Chosen from hundreds of submissions, these teams participated in a dynamic three-day sprint to sharpen their ideas and pitch innovative solutions to a panel of expert judges. Each team received funding to implement, adapt, and scale-up HIV interventions for adolescents and young adults over the coming year.

Hush Buddy is a team of four from Malawi. When we first started working with adolescents and young adults (AYA) living with HIV, we saw the difference a safe space could bring. Through the Comfort Corner—a youth-friendly drop-in centre—we offered support groups, mental health counselling, vocational training and antiretroviral therapy (ART) adherence support. However, we noticed that our target population was not patronizing the Comfort Corner as much as we had hoped. Some were afraid of being seen at the clinic and having their status exposed. Others could not afford to spare time or the cost of travel for in-person sessions. As much as they wanted help, fear and circumstances kept them away.

The birth of Hush Buddy

We wanted to take everything good about Comfort Corner and make it accessible on any phone, whether smart or not. We answered the questions, “What if support didn’t require physically showing up?” and “What if help could meet young people exactly where they are, safely, quietly and privately?”

Hush Buddy is our answer. Hush Buddy is a mobile app based on Unstructured Supplementary Service Data (USSD), meaning it works on any phone and without needing internet or data—something the average Malawian does not have access to. With a few keypad presses, AYA can access mental health check-ins, connect with an accountability buddy, get medication reminders, or find a vocational training referral. Anonymously.

One challenge has been translating the warmth of in-person sessions and the sense of community that the Comfort Corner brings into a digital format. Some users weren’t sure how to use the USSD system or didn’t trust that help could really come from their phones. Others started using it but dropped off after a few tries. We had to simplify the language and make it feel like someone was on the other side. That human touch, even on a keypad, matters. We are learning that privacy is just as powerful as presence. When someone feels safe enough to reach out, that’s when real change starts.

Participating in the INSPIRE Designathon

Coming into the INSPIRE Designathon, we knew what we wanted to do, but we didn’t know how to explain it in a way that made sense beyond our circles. As nurses and program leads, we were used to thinking in care plans, community outreach, and session scheduling, not frameworks and logic models.

At first, we were nervous. The room was full of academics, researchers, and people using language that felt so far from our everyday work. But we listened. Slowly, things started to click. Through the mentorship sessions, we learned how to present our idea clearly and build a real pitch deck. The RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) framework helped us look at Hush Buddy from all angles.

We also learned how to collect meaningful qualitative data using focus group discussions, and how that data could be used to improve the service, not just for monitoring. Before the Designathon, we saw feedback as something you did at the end. Now, we see it as something that shapes the process from the start.

The participatory learning meetings continue to give us more than technical knowledge. The Designathon has given us a community. Hearing from other teams reminded us that everyone is learning as they go. We saw people trying, failing, reworking and that made space for us to show up honestly, too. It’s easy to feel like you’re behind when you’re still figuring things out, but through these meetings, we realized that showing up with questions is part of what makes this work real.

Piloting the Hush Buddy app

One of our biggest lessons came after we launched the pilot. We realized we had made assumptions. We thought a USSD platform would be easy for anyone to use. It wasn’t. Some users were confused by the menu. Others didn’t know whether pressing “1” would lead to real help or just a message. And a few didn’t return after trying it once.

We didn’t take that lightly. We held a feedback session with some of our youth participants and asked what would make it easier. The responses were honest: “Make it shorter,” “Say it in Chichewa,” “Tell us what to expect first.” We used that feedback to simplify the menu, adjust the tone of our messages, and rework our scripts to explain the steps more clearly. This process reminded us that youth are not just users; they are co-creators.

We want to see Hush Buddy reach youth in rural districts where HIV support is even harder to access and stigma is higher. We’re exploring partnerships with mobile networks like Airtel and TNM so that the USSD code can be zero-rated and truly free to use. Long-term, we hope the Ministry of Health and other national partners will adopt it into Malawi’s broader HIV support system, especially as a digital bridge for AYA transitioning out of Teen Clubs.

The process of building Hush Buddy has helped us grow as a team—from struggling to turn our idea into a pitch, to confidently presenting it to reviewers, to rewriting menus based on real user voices. We have been stretched in the best way. Innovation isn’t always tech-heavy. Sometimes, it’s about quietly creating something that meets people exactly where they are.

For us, Hush Buddy is not just a mobile tool. It’s a promise that support doesn’t have to be loud or public to be powerful. It can be quiet. It can be private. And it can still save lives.