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.

Meet the New INSPIRE Youth Advisory Board Leadership Team for Year 2

Meet the New INSPIRE Youth Advisory Board Leadership Team for Year 2

The CROSS PATC³H-IN Youth Advisory Board (YAB) is thrilled to begin a new chapter as it welcomes a vibrant and passionate leadership team for Year 2. This year’s transition brings both renewal and continuity: the YAB Co-Chairs were reelected by the YAB CRC members following a thorough review of their applications, reaffirming confidence in their leadership, while the Digital Lead was newly selected through the same rigorous process. Together, this team reinforces our commitment to ensuring that young people remain at the center of efforts to end HIV. The YAB continues to be a driving force for youth advocacy, uniting young leaders whose creativity, lived experiences, and fresh perspectives shape the future of HIV prevention, care, and research.

Leading this year’s team is re-elected Co-Chair Aishat Adedoyin Koledowo from S-I TEST, Nigeria. With a strong background in public health, particularly in infectious diseases and reproductive health research, Aishat has consistently championed youth empowerment and health equity. Now in her second year with the YAB, she remains committed to equipping young people with the knowledge, access, and confidence they need to take charge of their health. Her dedication ensures that youth voices are not only heard but meaningfully embedded in strategic decisions that impact communities across the continent.

Joining her as Co-Chair is re-elected Neale Nomujuni Natukwatsa from MUJHU, Uganda. Neale brings extensive experience in youth leadership, public health, and policy advocacy, along with a deep passion for inclusive youth participation. Known for advancing health rights and social accountability, he is committed to guiding the board’s strategic vision and fostering strong collaboration among members. Together, Aishat and Neale are well positioned to lead the YAB in ways that keep young people at the forefront of HIV-related initiatives across the PATC³H-IN project and its partner networks.

The leadership team also welcomes new digital lead, Nathan Raven from RISE, Kenya as Digital Lead. With a background in fine arts and design, Nathan brings a unique creative spark to the Board. His passion for storytelling and community impact aligns closely with the YAB’s mission of elevating youth voices through digital platforms. Beyond his artistic skill, he aims to bridge communication and advocacy by offering fresh ideas and authentic insights that reflect the realities of young people. His role will be central in leveraging digital tools to share youth stories, amplify key messages, and inspire collective action.

This new leadership team embodies the YAB’s core values of youth-led innovation and shared leadership. Together, they represent a vision where young people are not passive participants but active drivers of change in HIV advocacy, research, and policy. In the year ahead, the YAB plans to deepen youth engagement, strengthen networks, and address ongoing challenges such as stigma, misinformation, and limited access to care.

As the PATC³H-IN Youth Advisory Board begins another impactful year, the energy and dedication of its leadership promise new opportunities for growth, transformation, and meaningful progress. Their continued efforts will amplify youth voices and inspire change across communities.

Next Gen Leadership: Reflecting on Y1 of the PATC3H-IN Youth Advisory Board

Next Gen Leadership: Reflecting on Y1 of the PATC3H-IN Youth Advisory Board

Guest Authors: Aishat Adedoyin Koledowo and Neale Natukwatsa Nomujuni | Co-chairs, PATC³H-IN YAB

When youth are actively involved in adolescent policy and programming, not just as beneficiaries but as leaders and decision makers, the outcomes are more relevant, relatable, and sustainable.

As the PATC³H-IN YAB marks the end of our first year, we pause to reflect on our journey so far. This year has been focused on building a strong foundation, amplifying youth voices, and ensuring young people are genuinely engaged in shaping solutions around HIV and health. From awareness campaigns to youth-centered research and advocacy, we have worked relentlessly to highlight the power of youth-led change.

The YAB

A selfie with three people in a colorful hallwayA youth advisory board (YAB) is a structured group of young people who provide their perspectives, insights, and recommendations to organizations, research initiatives, or government bodies. YABs are often part of NGOs, public health and research projects, helping to shape programs and policies that affect youth by ensuring their voices are meaningfully included in decision-making. Members typically range in age from 15 to 24, though this can vary.

The cross-PATC³H-IN YAB includes youth representatives from each of the different PATC³H-IN projects, ensuring a broad and inclusive perspective across the network. Our YAB consists of 16 members and is led by a team of elected co-chairs (that’s us!). We are committed to championing youth participation, reducing stigma, advancing HIV prevention, and strengthening access to health services in the resource-limited settings where we live.

Year One Progress and Accomplishments

Social Media Campaigns and Awareness

Throughout the year, the YAB has implemented several strategies to connect with the youth network across the different PATC³H-IN Clinical Research Centers. Our social media campaigns created digital platforms that make it easy to engage with peers. By producing creative content, we’ve been able to reach a wider range of youth audiences, sparking discussions about HIV awareness, mental health, and youth involvement. YAB members have simplified complex messages into relatable calls to action through social media.

Youth Survey and Town Hall Meeting

Growing youth discussions led to the development and launch of a youth-focused survey designed to gather perspectives on HIV-related issues across Africa. This allowed us to understand different youth viewpoints on HIV, the role of youth in HIV programming, and the impact of USAID funding cuts.

With over 190 survey responses, it became apparent that organizing a virtual town hall meeting was necessary to complement the survey distribution. This event fostered open dialogue, encouraging honest conversations to identify key issues, challenges, and potential remedies, offering a platform for young people to share their experiences, ideas, and recommendations on tackling HIV/AIDS.

We have begun to draft a research paper to highlight the findings from this process.

Spotlight Sessions and Capacity Building

Youth engagement is more than a box to check; it is the heartbeat of change. During our first year, the YAB introduced youth engagement strategies through capacity building and a social media campaign celebrating youth achievements in advocacy and health. We have stepped forward not just as participants but as leaders, shaping conversations, research, and action around HIV and health. The Spotlight Series posts were a recurring feature across the INSPIRE social media platforms (Instagram, X, LinkedIn) and designed to celebrate the achievements of our members. These curated posts highlighted individual accomplishments, milestones, or contributions within the YAB and broader PATC³H-IN community. They served as a way to recognize and uplift youth voices, promote peer inspiration, and build a sense of collective pride and visibility across our network.

YAB members are being trained in research writing, content creation, and blogging to boost personal development and YAB visibility. These skills are central to engagement, enabling youth to share stories, ideas, and solutions, impacting research, grant writing, and projects addressing genuine needs. YAB members now co-author work to transform their communities instead of being spoken for. In advocacy, they’ve raised bold voices, challenged stigma, promoted inclusivity, and paved paths for others.

 

Two lanyards with nametagsThe STI & HIV World Congress

Under the theme “Sexual Health for All,” the STI & HIV World Congress 2025 held in Montreal, Canada, in September demonstrated how co-creation transitioned from theory to practice.We were invited to attend and to facilitate a lively workshop focused on the revision of a TDR practical guide on youth co-creation. We led discussions between researchers and advocates to develop strategies for sexual health and community engagement. We were sure to emphasize the vital role of YABs in amplifying youth voices, ensuring that campaigns and innovations tell stories that genuinely reflect real needs and lived experiences. By encouraging collaboration and shared ownership, young leaders show that co-creation is more than just a process—it’s a path to more responsive and fair solutions for youth health needs.

A large group of people pose for a photo

Our Year One Impact

This year was not without challenges. Yet, the obstacles we faced only reinforced the need for innovation and collaboration. By leveraging digital tools and peer-to-peer networks, we found that meaningful engagement was possible even in difficult circumstances.

We are proud of what we’ve accomplished together, especially:

  • Reaching hundreds of youths through virtual awareness campaigns.
  • Collecting valuable insights from youth across multiple countries via our survey.
  • Engaging peers and stakeholders through our virtual town hall dialogues.
  • Contributing to the academic and policy space with our upcoming research paper and advocacy toolkit.
  • Representing African youth at the 2025 STI/HIV World Congress, amplifying youth-led solutions on a global platform.

Focus for Year Two

As we step into our second year, we will be focused on:

  • Expanding our reach to engage more with the youth across diverse networks.
  • Showcasing YAB insights at conferences, ensuring youth perspectives are visible in global spaces.
  • Building capacity, equipping members with advanced skills in writing, advocacy, and digital engagement.
  • Scaling our media campaigns, reaching even more young people with messages of awareness, empowerment, and change.

Acknowledgement:

We express our sincere gratitude to our board members, partners, and the many young people who entrusted us with their stories and energy. Year one was just the start of our journey together; we are working towards a future where youth are seen as leaders, not merely participants.

Meet the YAB

Click on a name to learn more.

Aishat Adedoyin Koledowo | Co-Chair
S-I TEST, Nigeria

Aishat Koledowo is a public health professional with a deep commitment to youth empowerment and health equity. Her journey began as a youth advocate, where she led an impactful initiatives to promote HIV self-testing, awareness and healthy behaviors among young people. That early experience shaped her strong dedication to ensuring that every young person has access to knowledge and resources to make informed health decisions.

Over the years, Aishat has built extensive experience in research, community mobilization, stakeholder engagement, and health promotion. She has worked with diverse groups and organizations, always promoting collaboration to achieve shared goals. Her work is rooted in a strong belief in inclusive decision-making and the power of youth-focused health initiatives.

Aishat currently serves as a Research Officer at Lagos State Health Management Agency (LASHMA), where she drives evidence-based interventions to strengthen health systems. She also plays a key role as a Youth Ambassador for 4 Youth By Youth (S-ITEST), leading HIV self-testing campaigns to empower youth.

Her involvement with INSPIRE began as Co-Chair of the Youth Advisory Board, where she remains an active voice in promoting global health advocacy. Aishat continues to be a driving force for positive change, always seeking new ways to uplift and empower young people.

Outside of work, Aishat enjoys mentoring youth and exploring innovative health strategies.

Neale Nomujuni Natukwatsa | Co-chair
MUJHU, Uganda

Nomujuni Neale Natukwatsa is a dedicated healthcare provider, youth advocate, counselor, teacher, and early-career researcher with a deep passion for adolescent health, HIV prevention, and mental health wellness. He serves as Head of YAB with IDRC/MUJHU and as Co-Chair of the INSPIRE Youth Advisory Board, where he champions meaningful youth engagement in health policy and programming. Nomujuni works closely with Uganda’s Ministry of Health as an Associate under the Young Adolescent Peer Support program, shaping national strategies that prioritize the voices and needs of young people.

With multidisciplinary expertise, Nomujuni brings a grounded understanding of the real-life challenges adolescents face in navigating healthcare. His work includes co-creating community-based solutions such as peer navigation, advising on youth-centered study design, facilitating consultations and public dialogues, co-developing tailored interventions, and strengthening referral pathways. Through research, advocacy, and collaboration, he is committed to building inclusive, ethical, and responsive systems—proving that youth are not just participants, but powerful leaders of change.

Stella Chinyonga | Digital Lead
ZAIMARA, Zambia

Stella Chinyonga is a devoted public health nurse with passion in health advocacy. She has made significant strides in promoting health and wellness in underserved communities. With experience as a volunteer nurse and programs manager at Tabene youth Advocacy Network, Stella developed and implemented impactful HIV/AIDS prevention programs. She currently serves as a Digital Lead for the INSPIRE Youth Advisory Board, leading the Youth Advocates for Change initiatives to amplify youth voices in implementation science. Her work has been recognized by the Center for Infectious Disease Research in Zambia (CIDRZ) for outstanding efforts in HIV/AIDS advocacy and was appointed as one of the youth community advisory board representative. Stella’s passion lies in improving health outcomes and empowering communities, particularly in HIV/AIDS prevention and management. She is committed to making a lasting impact and collaborating with like-minded individuals to create positive change.

Beene Chitempa

ZAIMARA, Zambia

Beene Chitempa is a nurse by profession with a passion for empowering young people to make informed health decisions. With experience in teaching, facilitation, community engagement, and data management, she has worked with diverse groups to drive positive change. Her journey began as a peer educator, creating safe spaces for youth to discuss sexual and reproductive health.

Beene has served as a Training Coordinator on the Southern Africa Accelerated Innovation Delivery Initiative (AID-I), promoting climate resilience among young women and youth in rural communities. As a CIDRZ Executive Committee Member and INSPIRE YAB member, she advocates for youth voices in all stages of project implementation. Throughout her career, she has championed women and youth focused initiatives, emphasizing inclusive decision making and amplifying marginalized voices.

Asanele Ndevu

ATTUNE, South Africa

Godswill Nwoha Chisom

S-I TEST, Nigeria

Godswill Nwoha Chisom is a passionate healthcare professional and youth advocate with over four years of experience in community outreach, program coordination, and peer education. Currently pursuing a degree in Guidance and Counselling at the University of Abuja, he has served as a counselor, HTS focal person, and peer educator at Kuje General Hospital. He is the Assistant Program Coordinator at Beyond Development for Africa Youth Advancement Initiative, S-I Test Ambassador for the 4YBY project, and CEO of Zoommax Cleaning and Delivery Services. Godswill has led several successful outreaches with AHF, championed youth-friendly initiatives, and has a strong track record in monitoring and reporting. His dedication, leadership, and communication skills make him a valuable asset to any cause or organization.

Raine Alamanya Renatus

MWOTAJI, Tanzania

Esther Mangadzuwa

VS4A, Malawi

Rukia Hassan

MWOTAJI, Tanzania

Nicolas Shima Aernan

RISE, Nigeria

Pimer Clare

MUJHU, Uganda

Pimer Clare is a student doing secretarial and office management work. Pimer is interested in creating youth awareness of HIV/AIDS. In addition to serving as a youth advisory board member for INSPIRE, Pimer serves as a peer and community advisory board member at Kagadi hospital under HIV prevention department

Desderata Mlachila

VS4A, Malawi

Desderata Mlachila is a well-disciplined, focused and self motivated with good interpersonal and communication skills. An innovative and creative person who quickly learns new skills and embraces changes, she has a passion for serving others on leading roles. A major achievement in her life was managing to advise children who had high viral loads that are now suppressed. Desderata loves my work and it is her wish to reach out the needy and those who fail to take drugs so that they can adhere and achieve viral suppression.

Chinedu Mbah

iCARE Plus, Nigeria

Hezekiah Samuel

iCARE Plus, Nigeria

Philip Chinseu

RISE, Nigeria

Thandekile "Tiny" Thusini

ATTUNE, South Africa

Thandekile “Tiny” Thusini is a leader, facilitator, public speaker, and human rights activist from KwaZulu Natal, Pietermaritzburg, in South Africa. She is a conversationalist passionate about youth empowerment and community development. She serves as a director of UMBONO NPO; a chairperson for Home of Hope Youth Foundation, a 2025 SunshineCinema Spark impact facilitator; Youth Advisory Board member in AHISA(SA) For Youth Adolescent Research in HIV; and a youth reporter at Sinomlando Centre and former radio presenter at UMgungundlovu FM local radio station.

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.

From Passion to Action: Youth Advisory Board Reflections

From Passion to Action: Youth Advisory Board Reflections

The cross-PATC³H-IN Youth Advisory Board (YAB) is a central component of INSPIRE’s effort to center youth voices in the activities of PATC³H-IN. YAB members help shape PATC³H-IN’s vision by fostering youth leadership in implementation science research to enhance youth engagement and improve HIV care continuum outcomes. Our YAB consists of 16 individuals who represent the eight clinical research centers that make up the PATC³H network. Each of them brings their own professional, cultural and personal experiences to their work as a YAB member to offer insights on how to improve HIV outcomes among adolescents and young adults across Africa.

INSPIRE YAB members have been nominated by a primary investigator at the PATC³H-IN clinical research center (CRC) they represent. Members serve for a term of twelve months and may be renewed based on their interest and performance. In addition to being a member of a CRC youth advisory board, members must be between the ages of 14–35 years old, have experience with youth engagement in a PATC³H-IN country, and demonstrate enthusiasm for expanding youth engagement. If you are interested in learning more about getting involved with our YAB, contact info@inspireyouthhealth.org

We asked three key members of our Youth Advisory Board to reflect on their experiences serving as members over their past year. YAB Co-chair Neale Nomujuni  Natukwatsa (Uganda) expressed the importance of incorporating youth voices from the start, Co-chair Aishat Adedoyin Koledowo (Nigeria) brought attention to the challenges of stigma and access, and Digital Lead Stella Chinyonga (Zambia) reflected on the success of the virtual town hall organized by YAB members. Read more below on the insights they gained as youth advocates and what they would advise researchers.

What surprised you the most about your involvement in HIV research?

Aishat: I was surprised by the level of stigma and misconceptions surrounding HIV, even more so among educated individuals. My involvement in HIV research has shown me that there is still much work to be done in terms of health education, awareness, and advocacy. I’m heartened by the progress made, but I’m also motivated to continue working towards a more informed and supportive environment for people living with HIV.

Neale Nomujuni Natukwatsa: What surprised me the most about my involvement in HIV research was how consistent and cross-cutting the issues affecting youth are across different settings. Whether it’s HIV acquisition, prevention, care, or treatment, the challenges young people face range from behavioral, biomedical, and social domains. These include stigma, lifestyle factors, limited access to youth-friendly health services, mental health struggles, drug use, and socio-economic vulnerability.

What is more unique is the power of peer-led models in addressing these challenges. When youth are actively involved not just as beneficiaries but as leaders and decision makers the outcomes are more relevant, relatable, and sustainable. I’ve seen firsthand how giving youth a platform to voice their realities and shape solutions leads to stronger engagement and more effective responses.

Stella: For the past year and a half, I’ve served as a youth community advisory board member at the Centre for Infectious Disease Research in Zambia. While I’ve always been aware of HIV’s existence, I was truly shocked to learn that there are still high numbers of deaths related to HIV/AIDS in Africa. This information really grabbed me and highlighted how much work still needs to be done on the ground level to reduce AIDS mortality rates across the continent. It’s a powerful reminder that despite all the progress we’ve made, the fight is far from over, and community-level education and support are more critical than ever.

Did this experience influence your career or academic interests in any way?

Neale: This experience significantly influenced both my career and academic interests. Being involved in HIV research, especially in youth centered and peer-led approaches, opened my eyes to the deep connection between public health, community engagement, and social justice. I came to realize that meaningful impact doesn’t come from top down solutions, but from amplifying the voices of those most affected particularly young people. This has further sparked my strong interest in social sciences and public health, particularly mental health and ethics in youth affected by HIV.

Beyond academics, this experience added to my passion for youth advocacy, promoting youth leadership and health. This has also motivated me to start a career as an early career researcher where I see myself utilizing research practices that include lived experiences and local knowledge.

Stella: Learning about the high death rates from HIV/AIDS has profoundly influenced my career path. As a public health nurse, it made me realize I needed to do more to help reduce these rates. This realization deepened my commitment to my daily work as a Community Advisory Board member, and I’ve found a new sense of purpose in contributing to the fight against HIV.

I’m now fortunate to be working with INSPIRE’s YAB as Digital Lead, a fantastic opportunity where I create content to raise awareness and promote HIV treatment. This experience has solidified my passion, and I plan to further my academic studies in public health to continue making a meaningful impact.

What challenges have you faced with advocating for adolescents and young adults?

Aishat: One of the biggest challenges I’ve faced is navigating the complex needs and perspectives of adolescents and young adults. It’s essential to make a balance between being supportive and empowering while also acknowledging the unique challenges and barriers this demographic faces. Additionally, issues related to accessibility, affordability, and acceptability of HIV services, which can be particularly challenging for young people.

Neale: One of the biggest challenges I’ve faced in advocating for adolescents and young adults is the deeply rooted judgment they encounter when seeking care. Too often, health service providers interpret their needs or behaviors through a moral lens, labeling them instead of listening. This judgment especially in areas like sexual and reproductive health or HIV services creates fear and discourages many young people from seeking the support they need.

Another major challenge is the way services are structured. In many settings, adolescents and young adults are expected to access care through the same systems designed for older adults. This lack of youth-friendly spaces makes young people feel uncomfortable, especially when receiving sensitive services alongside individuals they view as parents or authority figures. It not only compromises their privacy but also affects their willingness to return for continued care.

What YAB accomplishment are you most proud of this year?

Stella: One of my proudest accomplishments this year as a leader on the Youth Advisory Board was being involved in the successful development of the manuscript—Youth strengths to sustain HIV services in Africa— and organizing a powerful town hall meeting. It was challenging, but seeing our efforts come to fruition was incredibly rewarding.

I’m also very proud of being part of the communications masterclass (organized by the INSPIRE Learning Core). This experience has significantly contributed to my career development and skill set, which I’m now applying to my work. It’s truly fulfilling to see how our collective efforts are making a real impact.

What do you wish researchers or organizations better understood about involving youth?

Aishat: I wish researchers and organizations better understood the importance of genuinely involving youth in decision-making processes (co-creation), rather than just including them in a tokenistic way. Youth bring unique perspectives and experiences that can inform the development of effective solutions. It’s essential to create spaces where youth feel valued, heard, and empowered to contribute meaningfully. This includes providing opportunities for capacity-building, mentorship, and leadership development.

Neale: Researchers and organizations need to better understand and respect the individual differences among the youth. Every young person brings unique experiences shaped by their culture, family background, and socio-economic status. There is no one-size-fits-all approach to youth engagement. Creating space for each voice to be heard without judgment opens the door for trust and follow-up dialogue that goes beyond involvement.

It’s also important to meaningfully involve youth from the start, not just at the end. Too often, young people are only consulted once decisions are already made. But adolescents and young adults carry powerful lived experiences and often have creative, practical ideas for making research and programs more relevant and impactful. They understand what works in their communities and what doesn’t because they live it every day.

When youth are invited to co-create the agenda, not just review it, they feel valued and invested. Their voices help shape more inclusive, realistic, and sustainable solutions. Respect, trust, and early involvement aren’t just good practice, they are essential for research and programming that truly reflect the realities and aspirations of young people.

Stella: I wish researchers and organizations better understood the immense value and unique contributions of youth. Young people are a central element for change, thanks to their energy and capabilities. They are a powerful driving force for research projects, especially those that address issues directly affecting them.

Adolescents and young adults possess the unique ability to communicate and influence their peers effectively, which makes them crucial for gathering accurate data and insights. Involving youth isn’t just about ticking a box; it’s about harnessing their firsthand knowledge and innovative perspectives to create more impactful and relevant research.

What piece of advice would you give future YAB members?

Aishat: My advice to future YAB members would be to be bold, be vocal, and be persistent. Don’t be afraid to share your ideas and perspectives, even if they challenge the status quo. Remember that your experiences and insights are valuable, and you have a unique perspective to bring to the table. Also, be open to learning, growing, and collaborating with others. Together, we can create meaningful change and improve the lives of young people affected by HIV.

Working closely with the Youth Advisory Board has been both inspiring and rewarding. These young leaders have shown that when young people are engaged as co-creators rather than just participants, they bring fresh perspectives, creativity, and insight that help shape HIV research and programs in meaningful ways.

Progress Agboola

INSPIRE Engagement Core Coordinator

Meet the YAB

Click on a name to learn more.

Aishat Adedoyin Koledowo | Co-Chair
S-I TEST, Nigeria

Aishat Koledowo is a public health professional with a deep commitment to youth empowerment and health equity. Her journey began as a youth advocate, where she led an impactful initiatives to promote HIV self-testing, awareness and healthy behaviors among young people. That early experience shaped her strong dedication to ensuring that every young person has access to knowledge and resources to make informed health decisions.

Over the years, Aishat has built extensive experience in research, community mobilization, stakeholder engagement, and health promotion. She has worked with diverse groups and organizations, always promoting collaboration to achieve shared goals. Her work is rooted in a strong belief in inclusive decision-making and the power of youth-focused health initiatives.

Aishat currently serves as a Research Officer at Lagos State Health Management Agency (LASHMA), where she drives evidence-based interventions to strengthen health systems. She also plays a key role as a Youth Ambassador for 4 Youth By Youth (S-ITEST), leading HIV self-testing campaigns to empower youth.

Her involvement with INSPIRE began as Co-Chair of the Youth Advisory Board, where she remains an active voice in promoting global health advocacy. Aishat continues to be a driving force for positive change, always seeking new ways to uplift and empower young people.

Outside of work, Aishat enjoys mentoring youth and exploring innovative health strategies.

Neale Nomujuni Natukwatsa | Co-chair
MUJHU, Uganda

Nomujuni Neale Natukwatsa is a dedicated healthcare provider, youth advocate, counselor, teacher, and early-career researcher with a deep passion for adolescent health, HIV prevention, and mental health wellness. He serves as Head of YAB with IDRC/MUJHU and as Co-Chair of the INSPIRE Youth Advisory Board, where he champions meaningful youth engagement in health policy and programming. Nomujuni works closely with Uganda’s Ministry of Health as an Associate under the Young Adolescent Peer Support program, shaping national strategies that prioritize the voices and needs of young people.

With multidisciplinary expertise, Nomujuni brings a grounded understanding of the real-life challenges adolescents face in navigating healthcare. His work includes co-creating community-based solutions such as peer navigation, advising on youth-centered study design, facilitating consultations and public dialogues, co-developing tailored interventions, and strengthening referral pathways. Through research, advocacy, and collaboration, he is committed to building inclusive, ethical, and responsive systems—proving that youth are not just participants, but powerful leaders of change.

Stella Chinyonga | Digital Lead
ZAIMARA, Zambia

Stella Chinyonga is a devoted public health nurse with passion in health advocacy. She has made significant strides in promoting health and wellness in underserved communities. With experience as a volunteer nurse and programs manager at Tabene youth Advocacy Network, Stella developed and implemented impactful HIV/AIDS prevention programs. She currently serves as a Digital Lead for the INSPIRE Youth Advisory Board, leading the Youth Advocates for Change initiatives to amplify youth voices in implementation science. Her work has been recognized by the Center for Infectious Disease Research in Zambia (CIDRZ) for outstanding efforts in HIV/AIDS advocacy and was appointed as one of the youth community advisory board representative. Stella’s passion lies in improving health outcomes and empowering communities, particularly in HIV/AIDS prevention and management. She is committed to making a lasting impact and collaborating with like-minded individuals to create positive change.

Beene Chitempa

ZAIMARA, Zambia

Beene Chitempa is a nurse by profession with a passion for empowering young people to make informed health decisions. With experience in teaching, facilitation, community engagement, and data management, she has worked with diverse groups to drive positive change. Her journey began as a peer educator, creating safe spaces for youth to discuss sexual and reproductive health.

Beene has served as a Training Coordinator on the Southern Africa Accelerated Innovation Delivery Initiative (AID-I), promoting climate resilience among young women and youth in rural communities. As a CIDRZ Executive Committee Member and INSPIRE YAB member, she advocates for youth voices in all stages of project implementation. Throughout her career, she has championed women and youth focused initiatives, emphasizing inclusive decision making and amplifying marginalized voices.

Asanele Ndevu

ATTUNE, South Africa

Godswill Nwoha Chisom

S-I TEST, Nigeria

Godswill Nwoha Chisom is a passionate healthcare professional and youth advocate with over four years of experience in community outreach, program coordination, and peer education. Currently pursuing a degree in Guidance and Counselling at the University of Abuja, he has served as a counselor, HTS focal person, and peer educator at Kuje General Hospital. He is the Assistant Program Coordinator at Beyond Development for Africa Youth Advancement Initiative, S-I Test Ambassador for the 4YBY project, and CEO of Zoommax Cleaning and Delivery Services. Godswill has led several successful outreaches with AHF, championed youth-friendly initiatives, and has a strong track record in monitoring and reporting. His dedication, leadership, and communication skills make him a valuable asset to any cause or organization.

Raine Alamanya Renatus

MWOTAJI, Tanzania

Esther Mangadzuwa

VS4A, Malawi

Rukia Hassan

MWOTAJI, Tanzania

Nicolas Shima Aernan

RISE, Nigeria

Pimer Clare

MUJHU, Uganda

Pimer Clare is a student doing secretarial and office management work. Pimer is interested in creating youth awareness of HIV/AIDS. In addition to serving as a youth advisory board member for INSPIRE, Pimer serves as a peer and community advisory board member at Kagadi hospital under HIV prevention department

Desderata Mlachila

VS4A, Malawi

Desderata Mlachila is a well-disciplined, focused and self motivated with good interpersonal and communication skills. An innovative and creative person who quickly learns new skills and embraces changes, she has a passion for serving others on leading roles. A major achievement in her life was managing to advise children who had high viral loads that are now suppressed. Desderata loves my work and it is her wish to reach out the needy and those who fail to take drugs so that they can adhere and achieve viral suppression.

Chinedu Mbah

iCARE Plus, Nigeria

Hezekiah Samuel

iCARE Plus, Nigeria

Philip Chinseu

RISE, Nigeria

Thandekile "Tiny" Thusini

ATTUNE, South Africa

Thandekile “Tiny” Thusini is a leader, facilitator, public speaker, and human rights activist from KwaZulu Natal, Pietermaritzburg, in South Africa. She is a conversationalist passionate about youth empowerment and community development. She serves as a director of UMBONO NPO; a chairperson for Home of Hope Youth Foundation, a 2025 SunshineCinema Spark impact facilitator; Youth Advisory Board member in AHISA(SA) For Youth Adolescent Research in HIV; and a youth reporter at Sinomlando Centre and former radio presenter at UMgungundlovu FM local radio station.

Youth voices in action: Highlights from the YAB town hall meeting

Youth voices in action: Highlights from the YAB town hall meeting

Contributor:

Stella Chinyonga, Public Health Nurse and Health Advocate and Digital Lead, INSPIRE Youth Advisory Board

On 26 April 2025, INSPIRE’s Cross-PATC³H-IN Youth Advisory Board (YAB) hosted a dynamic virtual town hall meeting themed “Our Future, Our Fight: Youth, Resilience, and HIV/AIDS in Africa”. INSPIRE continues to champion youth-led action in health and implementation science. This town hall created a space for open dialogue and collaboration, giving young people the opportunity to share experiences, propose solutions, and lead the conversation around HIV/AIDS in Africa.

Centering Youth Perspectives

In the lead-up to the town hall, young people aged 10 to 30 from various African countries participated in an anonymous survey. This survey captured insights on HIV status, support group affiliations, and personal experiences with stigma, youth-led initiatives, and the impact of funding gaps.

The results clearly reflected a growing demand for inclusive platforms, accessible services, and youth-driven responses to HIV. Participants expressed a strong desire to lead with creativity, compassion, and courage in the face of ongoing challenges.

Framing the Conversation

The event opened with an overview of the work and mission of the Cross-PATC³H- IN Youth Advisory Board. Professor Joseph Tucker provided key reflections on how recent USAID funding cuts have affected youth-centered HIV programs. He emphasized the critical need for adaptability, innovation, and continued youth engagement to sustain momentum in the face of reduced resources.

 

Breakout Sessions: Shaping Solutions Together

Participants engaged in breakout sessions focused on three major themes: stigma reduction, youth engagement, and innovative financing.

In the stigma reduction session, facilitator Neale Nomujuni led an open discussion on how stigma manifests in the lives of adolescents and young adults. Participants explored the emotional, social, and institutional barriers created by self-stigma, external stigma, and secondary stigma. They highlighted the urgent need to dismantle misconceptions and harmful narratives, and emphasized the power of storytelling, peer support, and open conversation in breaking down stigma.

The youth engagement session, facilitated by Aisha Adedoyin, explored how young people can meaningfully participate in HIV prevention, treatment, and advocacy. Participants emphasized the importance of leveraging digital platforms like TikTok, creating safe spaces for youth leadership, and providing the tools, education, and resources needed to equip young people as advocates. Recognizing and celebrating youth achievements was also seen as a powerful motivator for continued involvement.

Progress Agboola led the session on innovative financing, focusing on sustainable ways to support youth-led HIV initiatives. Discussions highlighted the effectiveness of community savings groups, crowdfunding, and digital fundraising platforms in promoting local ownership and expanding reach. Participants also discussed the need for strategic partnerships with organizations committed to youth health and development.

Reflections and Strategic Directions

The town hall concluded with a strong sense of momentum and a collective vision for the future. Participants agreed on the importance of creative communication to challenge stigma—using radio, social media, and peer education to drive change.

There was also consensus on the need to mobilize local resources to reduce dependency on external funding and to support sustainability. Strengthening communication and advocacy skills among youth leaders was recognized as essential to building visibility and influence. The need for comprehensive, age-appropriate sexual and reproductive health education and consistent funding for youth-led programming was underscored throughout the discussions.

 

Looking Ahead

This town hall marked a powerful moment in INSPIRE’s ongoing work to center youth in the HIV response. It reaffirmed that young people are not just participants—they are pioneers. By investing in their leadership, ideas, and lived experiences, we build more inclusive, resilient, and impactful responses to HIV/AIDS.

As INSPIRE continues to promote youth leadership across the continent, the outcomes of this town hall will inform our strategies, shape our collaborations, and fuel the next phase of youth-led change.

When youth are given the space and support to lead, they do not just raise their voices—they transform systems.