From Passion to Action: Youth Advisory Board Reflections

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.

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