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.

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.

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.

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.

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.

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.

Click on a name to learn more.

Contributor:

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

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.

While youth engagement in innovative research methods is growing, it remains critically low in conventional health leadership across local and national systems. However, there is increasing recognition of the importance of involving young people in initiatives that directly affect their lives. This shift has prompted a move toward working with youth rather than for them, emphasizing their active participation in decision-making processes.

Co-creation is an iterative, bidirectional collaboration between researchers or stakeholders and the community to create knowledge, fostering broader public engagement in medical research. ^1,2 Youth co-creation ensures that programs are more relevant and inclusive and empowers young people in decision-making that shapes their lives with attention to power imbalances. However, there is limited understanding of the practical tools needed to implement various youth co-creation approaches, highlighting the necessity of developing a structured guide to facilitate this process.

The INSPIRE team, Social Entrepreneurship to Spur Health (SESH), and Social Innovation in Health Initiative (SIHI) jointly launched a youth co-creation crowdsourcing open call. Crowdsourcing is defined as having a large group solve a problem and then share their solutions with the public.³ Crowdsourcing allows for diverse perspectives and encourages the participation of those outside traditional research circles and it typically does not set strict limits on participation. The purpose of this crowdsourcing open call is to gather experiences, good practices, and practical tips on youth co-creation to inform the development of a practical guide to support stakeholders with effective insights in researching, designing, implementing, and evaluating youth-focused programs to enhance health and well-being. The crowdsourcing open call steering committee included fifteen (15) representatives from Africa, Asia, Europe, and North America. The committee represented experts in youth engagement, participatory research, and co-creation in diverse sectors such as academia, non-profits, development agencies, and startups. The steering committee members, who met every other month on Zoom, provided high-level guidance on the specifics of the open call.

The SESH website announced the open call and provided key details along with the challenge question: “How can we best design, execute, or evaluate successful youth-focused co-creation health programs or research projects?” Social media assets (infographics, short videos, and e-mails) were developed, translated, and disseminated across social media with the support of the steering committee, the organizing committee, and partner organizations.

The call was open until January 25, 2025. All submissions received were screened for eligibility and to also remove incomplete, duplicate, and bot submissions. The final 51 eligible submissions were evaluated by 14 independent expert judges using the following five criteria: 1). relevance to the call, 2). clear and concise description, 3). adaptability, 4). feasibility and scalability, and 5). promotion of equity. The steering committee shortlisted submissions with a mean score of at least 7.5/10 for a videoconference deliberation to select finalists. Four finalists were selected from Kenya, Nigeria, South Africa, and the Philippines. Below is a summary of the finalists’ submissions:

1. Youth Pulse: Empowering Resilient Minds Through Co-Creation (William Muthama | Kenya)

Youth Pulse empowered young people to become creators of mental health solutions through a dynamic three-stage engagement model. Youth-led ideation sessions using empathy tools collaborated in design sprints with platforms like Miro and Figma and later became peer mentors driving localized campaigns. Safety measures included mental health first-aid training and anonymous feedback. To tackle cultural stigma, youth co-created comic books in local dialects; to sustain engagement, gamified “Youth Co-Creation Olympics” were introduced. Outcomes included an 82% boost in mental health literacy, with 70% of youth are producing prototypes (40% adopted locally), while also igniting youth leadership and shifting public perceptions.

2. Unplugged: Youth-Driven Solutions for Digital Addiction (Mdoo Emmanuella Tormough and Joseph Asipitha Onipe | Nigeria)

The Digital Wellness Toolkit co-creation activity engaged young people in addressing digital addiction and promoting mental health by identifying key challenges, co-designing solutions, and shaping outreach strategies. Youth stayed engaged through interactive techniques like role-play, creative labs, and storytelling workshops, alongside expert mentorship and gamified tasks. Icebreakers such as the “Digital Detox Challenge” fostered open dialogue, while power imbalances were tackled by forming a youth advisory board. Flexible scheduling and stipends ensured inclusivity. Success stemmed from a youth-driven agenda, real-life impact through pilot programs, and formal recognition, which collectively inspired continued participation and empowered youth to lead change in digital wellness.

3. Youth Co-Creation for Mental Health Innovation: Empowering Young Minds (Palesa Tsotetsi | South Africa)

The Youth Co-Creation for Mental Health Innovation project empowered over 200 young people through brainstorming sessions, design sprints, and peer-led focus groups to develop mental health solutions. Activities like innovation bootcamps, hackathons, and storytelling circles encouraged empathy and creativity, supported by community mentors and gamification. Digital tools enabled inclusive participation, with rural access facilitated via community center partnerships. Outreach through schools and NGOs ensured diverse representation. A key outcome was the development and pilot of a mental health app in two schools. Trust-building, regular feedback loops, and flexible facilitation emerged as critical to fostering authentic engagement and reducing mental health stigma.

4. Co-creating Social Innovation for Sustainable Community Transformation (Jo-Ann Caberoy and Fababaer Emerson | Philippines)

The Urban Farming Co-Creation Workshop engaged youth in sustainable community transformation by promoting awareness of local food systems and activating green spaces for social connection and physical activity. Using the Living Lab Bayanihan framework, participants collaborated through case challenges, brainwriting, and local games to co-create practical solutions rooted in Filipino values of unity and shared responsibility. Youth leaders shaped the workshop design, while mentoring and harvesting sessions deepened engagement. Communication tools like WhatsApp ensured coordination, and trust was built through consistent community interaction. Partnerships with youth councils and local governments enhanced impact, while flexibility addressed weather disruptions and logistical challenges.

Prizes and next steps

Findings from the thematic analysis of the eligible open call submissions will inform the development of a consensus practical guide. A systematic review of youth co-creation and a co-creation conceptual framework will provide supplementary data to make the guide comprehensive. We are simultaneously organizing a series of participatory co-creation sessions between May and July involving the finalists, commended submissions, and the public to co-create social media assets and selected sections of the practical guide. The four finalists have also received invitations to attend the participatory co-creation workshop at the STI/HIV 2025 World Congress in Montreal, Canada, with full travel support from the INSPIRE team.

Acknowledgement

We acknowledge the Social Entrepreneurship to Spur Health (SESH), Social Innovation in Health Initiative (SIHI), and the Innovative Network on the Science and Practice of Implementation, Research, and Engagement (INSPIRE) team. The INSPIRE Center advances dissemination and implementation (D&I) science to adapt, scale, and sustain evidence-based HIV interventions for adolescents and young adults (AYA) in low- and middle-income countries (LMICs). As part of the PATC³H-IN network, INSPIRE applies an Appreciative Inquiry approach that builds on system strengths to drive change. Through its Capacity Supporting Core, Advanced Methods and Modeling Core, and Community Engagement and Dissemination Core, INSPIRE supports training, advanced methods, and engagement strategies across six PATC³H-IN countries: Nigeria, Malawi, Kenya, South Africa, Zambia, and Tanzania. INSPIRE’s vision is to end the HIV epidemic among adolescents and young adults aged 10–24 years. The Center is supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health under Award Number UM2HD116395.

References

1. Oertzen, Anna-Sophie & Odekerken, Gaby & Brax, Saara & Mager, Birgit. (2018). Co-creating services—conceptual clarification, forms and outcomes. Journal of Service Management. 29. 10.1108/JOSM-03-2017-0067.
2. OECD (2019), The Innovation System of the Public Service of Brazil: An Exploration of its Past, Present and Future Journey, OECD Public Governance Reviews, OECD Publishing, Paris, https://doi.org/10.1787/a1b203de-en.
3. Crowdsourcing in health and health research: a practical guide. Geneva:  World Health Organization; 2018. TDR/STRA/18.4.  Licence: CC BY-NC-SA 3.0 IGO.