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Independent guidance for better public participation in health and care research
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Involving children and young people

Children and young people bring knowledge of their own lives, priorities and communication needs. Their involvement can help research become more relevant, accessible and focused.

Why this matters

Make room for perspectives that adults may miss

Involvement can help research teams identify questions that matter to children and young people, test whether plans make sense and communicate in ways that are engaging and clear.

Meaningful involvement is more than asking for a response to a finished idea. It gives children and young people an appropriate opportunity to influence priorities, materials and decisions, with support that recognises different ages, experiences and circumstances.

What involvement can improve

Practical contributions at every stage

Young people can contribute in different ways depending on the research question, the stage of the project and the support available.

Set relevant questions

Discuss which issues feel important, what outcomes matter and how a research question connects to everyday life.

Improve information

Review questionnaires, invitations, leaflets and summaries for clarity, tone, length and usefulness.

Keep the focus grounded

Bring attention back to the experiences, priorities and practical realities that research aims to understand.

What good support includes

Design involvement with care

01 / Prepare

Clear, age-appropriate information

Use straightforward language and provide material in formats that children and young people can navigate.

Explore plain-English guidance
02 / Include

Accessible ways to contribute

Offer suitable activities, time to think and more than one way to share ideas where possible.

Consider inclusion in involvement
03 / Support

Realistic expectations

Be clear about roles, boundaries and the support available before, during and after involvement.

Develop training and support
04 / Respond

Visible feedback

Explain what changed after discussions, what could not change and the reasons for each decision.

Read planning guidance
A useful approach

From invitation to shared learning

A thoughtful process helps contributors understand their influence and helps teams use what they learn.

Start early

Invite input while priorities, questions and methods can still be influenced.

Agree the role

Describe the purpose, activities, timescale and what the team will do with contributions.

Work in accessible ways

Use formats and language that support informed, comfortable participation.

Share the learning

Close the loop with an honest account of decisions, changes and next steps.

Related material

Continue your learning

Use these links to find practical material, research references and focused guidance.

Resources for involvement

Find organisations and practical resources for involving children and young people in research.

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References and evidence

Browse references relating to involving children and young people in research.

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Articles and learning

Read articles about involving and engaging children and young people in research.

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Common questions

Involving children and young people FAQ

When should children and young people be involved?

Involvement is most useful when it begins early enough to influence the research question, priorities or plan. It can also be valuable at later stages, such as reviewing information or sharing findings.

Is involvement the same as taking part in a study?

No. Taking part in a study means contributing data. Involvement means helping to shape decisions about research, its materials or how it is communicated.

How can information be made easier to use?

Keep language clear, explain essential terms and test material with the people it is intended for. Use feedback to improve the format, length and content.

What should a research team explain at the start?

Set out the purpose of involvement, what decisions are open to influence, what activities are expected and when contributors can expect feedback.

How can teams avoid tokenistic involvement?

Plan for genuine influence, allow sufficient time and resources, record contributions and explain clearly how views affected decisions.

Where can I find more detailed resources?

Visit the resources page or read the report on involving children and young people in research.

Need a starting point?

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