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Everything Is More Connected

So, the YPAG is a group of young people who support research in the areas of mental health and ethics. The idea is that young people shouldn't be just the participants of a research project, but also be part of the process of creating that research. So that involves giving input into the design of the research, thinking about priorities for the research methodology, helping to collect data, recruit participants, analyse and interpret that data, right up the chain. The idea is that they would be active participants, protagonists in the process, not just passive recipients of the research.

I am doing a postdoc on the project. At the time when I joined the team, I had done very little participatory research of this type. The research I had been doing was in experimental Psychology, stuff that didn’t have to do with children's rights directly. So, I had to learn a lot about how to approach this process. I've been involved with the group since the beginning, I was coordinating, so I would lead the sessions and so on. And then, maybe a year ago or a bit more, I took a step back to focus on writing up all that we had done together.

So basically, we would bring projects to the YPAG, projects that were just at the idea stage. Say, we need to do a project around young people's perspectives on early intervention in Alzheimer's disease. We would bring them the idea and then say, ‘Okay, does this resonate with your experience? What do you think about it? What would you like to ask from young people?’ And then we would evolve this process, creating the methodology for the study together, and then actually conducting the research. On some projects they had a more advisory role. They were just sort of confirming things were okay or giving an idea here and there. But on other projects they took a very extensive role, including co-authoring the pieces.

At the beginning, I think I was slightly scared of how to approach this. For them as well, it was a learning process. But it became more and more informal and more comfortable as we progressed. At the beginning, we were more closely supervising their input. And as the group evolved, and we evolved as well in our thinking about it, we, the researchers, started taking a much more passive position in the group. We would just say, ‘Okay, we need to create this’, and then they would work independently in small groups to generate an output.

On one of the projects, for example, we wanted to understand what young people do day-to-day that they feel is right or wrong – young people’s everyday morality. We worked together with the YPAG, thinking through, ‘Okay, how are we going to ask young people to report their morals?’ You know, it's a very personal thing to reveal. You're gonna be reporting your wrongdoings. It was so crucial that we had YPAG support. We got some very honest responses that we would never have gotten otherwise. I think it was a wake-up call for me, realising that this process of working collaboratively with them is so important for good quality research. You just get better information from young people. It just speaks their language in some way.

There’s no going back when you start working in this more participatory way. The research just produces outputs that are much stronger. I don't feel that I'll ever go back to doing research the way I used to. That is one very significant impact. Another is also the focus of my research, which changed because of my involvement with the YPAG. So, the BeGood project I’m on now is about the ethics of early intervention in psychiatry, and bringing young people's views in. Because of my involvement in the YPAG, I got increasingly interested in that process of empowering young people, giving them a voice. And also, realising that they are much stronger than you think, their ideas are so innovative – realising their huge potential. I think sometimes we don't explore that, for example, in the education system – young people tend to take a passive role in many ways.

So, in addition to using the YPAG as a method I started researching these processes of participation, and also empowering young people to take an active role in other areas related to mental health - so delivering interventions, making up interventions, participating in policies. I always felt strongly that young people should have their say, that they should be integrated into society. And I was already a fan of participatory processes in education. But I wasn't that vocal about it. And my involvement with the YPAG just really grew in me the importance of actually reaching out, making that connection between adolescents and decision makers, so that they can make a difference that is going to be lasting. I became much more of an activist.

Perhaps the most impressive example, from my perspective, was when we were setting up a group of global young people, to support a dissemination campaign for a mental health report. I got a suggestion to invite this young lady from Rwanda, who had a history of mental health challenges, growing up there with parents who had been through the war. Shortly after we started working with her, I got a chance to suggest a young person to speak at the World Ministerial Summit in London. They had invited Ministers of Health from different countries, and they wanted a young person in a panel with researchers and Ministers. She flew all the way from Rwanda to London, and she just wrote the most beautiful speech. After that, everything sort of took off for her in terms of career and advocacy in mental health. She's currently advising the Wellcome Trust, and doing really interesting work locally in Rwanda. And then we also co-wrote a commentary that got published in The Lancet, about involving young people and empowering them for change in mental health. A young person gets that type of opportunity, that can cause a cascade of events that change her life forever.

I think the importance of a community was also very clear to me from the YPAG. And for them, it was really important, because it was something really unique. It was an opportunity for them to learn from the views of all kinds of young people coming from all walks of life. And just creating a very welcoming, accepting environment at the beginning of each session was important, so that they knew their presence and their opinions were valued. Things that we might take for granted, but not every young person is told that in daily life. Ilina, who is the Primary Investigator on the project, she fully supports this vision. Having that type of support and mentorship was fundamental for everything to happen, to give space to generate a strong group, funding to keep the group going, to train them properly – it's a lot of work behind the scenes. But it created a structure, without which we wouldn't be able to do any of what I'm talking about. Many YPAGs, they don't have the research time necessary to create something that survives over time, or they don't have the funding necessary, so groups just end up sort of dying out. But we were able to generate something lasting and strong, and still ongoing, which I hope will survive for many years beyond the first project.

The young people themselves were just wonderful. They were so creative, and really motivated and committed to the work. Some of them just stayed on, they never left. I think that was quite fundamental for causing change. Because they were a group that evolved, and we knew they all knew the research area, they knew how we could work together effectively. They were bright, creative, innovative, they were driving really good research. Some of them decided to study Psychology because of their involvement in the YPAG. So, it's been a lasting process, for us and for them. It wasn't just some activity, an after-school club that they joined for a term. It was something that really made a difference in terms of their life choices afterwards.

I think in terms of purpose and meaning, in my life, it has been really important. Actually making a difference in the lives of young people, I wanted to be able to do that through my job. And I think before that, in my PhD, I had the feeling that my research was very far removed from making a difference. So, for me, it has created a feeling that everything is a little bit more connected. I have this way to understand the type of change I want to see. And I understand how to get there.


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