Youth led Research and Participation
One of the core principles of adolescent health is 'nothing about us without us.' But how often do we truly involve young people in designing, implementing and evaluating research? What are the barriers to meaningful youth participation in research? What has worked well in your experience? Do you have examples of youth led or co-designed projects that made a real difference? For the young people in this group, what would make you feel more included and valued in research processes?
#YouthLed #NothingAboutUsWithoutUs #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.
@Nonvicks, your four barriers are the clearest articulation of this problem I have seen in one place, and I want to press on the one that I think is most often treated as unfixable: compensation. You are right that offering "experience" instead of payment creates a socio-economic barrier, but I have also seen institutions hesitate because they do not know how to pay young people without triggering safeguarding, tax, or contractual complications. Has anyone in this group found a practical model that works; stipends, honoraria, youth advisory contracts and does it survive an audit? Because if the answer is "it is complicated," that complication quietly becomes the reason it never happens. I would like this thread to end with something someone could actually copy.
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.
@Desmond Angira, your point that young people should see their contributions actually influence decisions is the test that separates participation from performance. What I want to ask is how you have seen that made visible. In my experience, young people disengage not because they were consulted but because they never learned what happened to what they said. Has anyone tried closing that loop deliberately by reporting back what changed because of youth input, and what did not and why? I think the "why not" matters as much as the "what changed," because it signals that their input was taken seriously even when it was not adopted.
Rhoda, thank you for naming this so directly —
and Nonvicks and Desmond, your points on tokenism and power imbalance are ones
I want to build on rather than repeat.
At Purpose Rwanda, "nothing about us without
us" isn't primarily a research-design principle for us — it's the entire
operating structure. Our Purposeful Agents of Transformation are not youth
consulted about a program; they are the program, trained and deployed
to mentor others walking the same path they once walked. So I want to offer a
distinction I think this thread hasn't fully separated out yet: youth
participation looks structurally different depending on which youth you're
talking about, and treating "youth" as one population with
one set of barriers risks solving the problem for the easiest group while
leaving the hardest-to-reach group exactly where they started.
We work across four distinct youth populations —
in-school, university, formal and informal labour market, and young people who
have dropped out of school entirely — and each faces a genuinely different
barrier to meaningful participation, not just a milder or stronger version of
the same one:
For in-school and university youth,
the barrier is closer to what's already been named here: institutional power
imbalance, rigid timelines, and participation that stops at consultation rather
than continuing into real decision-making.
For youth in the informal labour market,
the barrier is often structural invisibility before it's even a participation
problem — there's frequently no institutional touchpoint that reaches them at
all, so the "nothing about us without us" conversation never starts,
because "us" was never mapped as a stakeholder group to begin with.
For out-of-school youth, the
barrier Nonvicks named — expecting free labour, calling it
"experience" — is especially sharp, because this group has often
already been economically excluded once by the systems that failed to keep them
in school. Asking for further uncompensated time from someone in that position
isn't a minor oversight; it repeats the exact exclusion the research claims to
be studying.
Where this becomes genuinely actionable, not just
descriptive: our own PATs are compensated, trained, and given real authority
over how they deliver support to their peers — not simply invited to comment on
a design researchers already finalized. If there's one addition I'd make to
this thread's excellent list of barriers, it's this: meaningful participation
research should ask not just "were young people involved," but
"which young people, and did the model of involvement match the actual
barrier that population faces" — because a single participation framework
applied uniformly across in-school, university, informal-sector, and
out-of-school youth will succeed for some of them and quietly fail the rest.
Rhoda, thank you for pressing on this - you are right that the first barrier is invisibility.
To answer directly: You do not map a population that has no institutional address through institutions. You map it through relationships. This is where I build on Nonvicks and Desmond - tokenism and power imbalance assume youth were at least invited to the table. For informal and out-of-school youth, there is no table.
The PAT model works precisely because it inverts the theory of participation. It is not consultation, it is delegation. A peer who has lived that exclusion is already inside that network, speaks its language, and holds trust that no survey or institutional outreach can purchase. They are not informing our intervention; they ARE the intervention, compensated, trained, and authorized to adapt it.
This also answers your earlier question on compensation and closing the loop. Nonvicks named the audit fear,
Desmond named the visibility of influence. Our practice: PATs are on service contracts with clear deliverables, stipended monthly, and we close the loop in two directions - reporting back to the youth what changed because of their input, and reporting back to PATs how their peer work shaped program decisions. That makes participation auditable and accountable, not performative.
Perhaps the framework this CoP needs is not one youth participation model, but differentiated models for differentiated youth realities - with a specific theory for those who are structurally invisible.