Youth led Research and Participation

@Rhoda Nakhosi Nakhosi Meaningful youth involvement remains more the exception than the rule in health research. While most institutions agree with "nothing about us without us" in principle, young people are often consulted only after research questions, budgets, and methodologies are already set.

Key Barriers to Meaningful Youth Participation

Institutional & Power Imbalances: Researchers and adult professionals often struggle to share control over the agenda, framing youth involvement as an added operational risk rather than an ethical requirement.

Tokenism: Youth are frequently brought in for one-off consultations, photo ops, or final reviews without being given true decision-making power or follow-up.

Compensation & Recognition: Expecting young people to consult for free or offering non-monetary "experience" ignores their expertise and creates significant socio-economic barriers to entry.

Rigid Academic Structures: Tight grant deadlines, jargon-heavy methodologies, and inflexible institutional review board (IRB) processes make co-design challenging.

I think meaningful youth participation should go beyond asking young people to fill out surveys or attend meetings. Young people should be involved from the start—helping shape the research questions, methods, and even how findings are shared.

Some barriers are tokenistic participation, power imbalances, lack of resources, and not creating safe spaces for young people to share their views.

For me, what makes the biggest difference is when young people can see that their contributions actually influence decisions. Being treated as partners and co-creators, rather than just respondents, is what makes “nothing about us without us” meaningful.