What do young people want from mental health interventions? Nobody knows the answer to this question better than young people themselves. You might think interventions should focus on things like the mental health implications of playing videogames, but adolescents may be more concerned about problems navigating their friendships. They know the difficulties they face and how they respond to these challenges.

Unfortunately, young people are often excluded from decisions about mental health research and interventions. They tend to be seen as simply participants in research projects developed by academics who are often much older than they are. As a result, young people who have experienced a problem lack opportunities to influence the development and design of interventions that aim to help.

“Young people are often excluded from decisions about mental health research and interventions.”

When young people with relevant lived experience are excluded, researchers may make the mistake of using complex, scientific language that is not accessible to children and adolescents when developing intervention materials. They may also miss opportunities to tackle issues that really matter to young people. Involving teens makes it more likely that resources will be spent on interventions to tackle the issues they themselves consider most important.   

‘Nothing about us without us’

To address these issues, researchers and research funders are increasingly arguing that research should be developed in collaboration with people with lived experience of mental health issues. Co-production enables researchers and young people with relevant experiences to share a genuine partnership as they design research together, drawing on the vital knowledge both sides provide. This approach is encapsulated by the slogan ‘nothing about us without us’, which can be traced back to the disability rights movement and advocates involving people with relevant experience in decisions about their own healthcare. As adolescent mental health researchers, we agree that listening to the voices of young people is key.

“Research should be developed in collaboration with people with lived experience.

But what makes co-production successful? It is essential to build and maintain trust between researchers and young people, who must also agree on their respective responsibilities and expectations. Young people often attend workshops and help to make decisions about research projects. Their feedback improves research design and implementation – for example by suggesting ways to explain a study more clearly or to keep the attention of their peers.

‘You said we did’

Co-production can have a profound impact on the quality of an intervention. As researchers in New Zealand were developing a gamified cognitive behavioural therapy app, for example, they invited young people to provide feedback on the app’s look and feel so that the interface could be made as accessible as possible. Through this collaborative process, Māori and Pacific young people, who are historically underserved by the New Zealand health system, were empowered to make decisions about the mental health interventions they subsequently received. Māori values and cultural practices (tikanga) were incorporated into the app, and culturally inappropriate or insensitive concepts were avoided. The app developers created an aesthetic that appealed to these young people, and the narrative storyline in the game was shortened in response to feedback.

In our own research project – The ReSET project – we aim to build young people’s resilience by enabling them to manage their feelings and emotions more effectively and helping them relate to people around them. Young people played a key role in the design of our intervention by participating in several open, collaborative, interactive workshops. We encouraged them to suggest rules for working together, such as confidentiality and mutual respect, rather than imposing our own. We asked them how they would explain the links between social relationships, emotion processing, and wellbeing to 13- to 14-year-olds. Based on their responses, we created a cyclical diagram to clarify the science behind these concepts, which we then adapted for the intervention.

We also asked them about scenarios they encounter, which we used in the intervention as age-appropriate and relatable examples of how relationships can affect emotions – which, in turn, have an impact on mental health. Their guidance and feedback throughout helped us to make the language in the materials accessible to teens. We are open about the changes we are making – the ‘You said we did’ section on our website shows how we have responded to young people’s recommendations.

“Co-production can improve research by drawing on the experiences of young people with mental health problems.”

Co-production can improve research by drawing on the experiences of young people with mental health problems. Using approaches like ours, researchers are able to develop interventions that are relevant and accessible. This process improves the quality of mental health research, and ensures that interventions have a positive impact on the lives of young people.

Get involved in co-production opportunities

There are several young people’s advisory groups that teens can get involved in:

The ReSET Project, in partnership with UCL and The University of Cambridge, has a youth advisory group. We welcome new applications all year around. If you would like to learn more about our project and how to get involved, visit our website: resetproject.co.uk.

The Young Person’s Advisory Group at Kailo is a research and design programme aiming to “better understand and address the root causes (and wider determinants) of young people’s mental health”.

The Youth Advisory Group at YoungMinds, “the UK’s leading charity fighting for children and young people’s mental health”, regularly recruits young people to work alongside staff on different projects and ensures that everything they do is in partnership with young people.

The McPin Foundation aims to improve mental health outcomes through research that is informed and directed by people with lived experience. The foundation offers a wide range of opportunities for individuals of various ages, including young people, to help design and influence research.

GenerationR Alliance Young People’s Advisory Groups (YPAGs) are funded by NHS organisations and the National Institute for Health Research. They aim to support the design and delivery of health research involving young people across the UK. Parents and carers, too, are actively involved in co-productive research.

The Co-Production Collective is a community dedicated to all things co-production! Everyone is welcome, whether you have lived, living, or learnt experience. Together the members of this community champion co-production to create change.

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