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The Crossing Of A Threshold

I'm a Professor of Neuroscience and Society at Oxford University. I started interviewing kids as part of my academic research around 2006. At that point, it was considered to be a very difficult thing to do. I like to tell the story where the grant that initially funded my first independent research project was rejected six times by different funders, because it looked to interview kids about moral and ethical concerns around their psychiatric medication. I got back responses from reviewers saying: ‘Well, kids aren't trustworthy, and how can they talk about these complicated ethical matters anyway? And you should really leave decisions about medication to clinicians.’ I was finally funded through a Wellcome Trust University Award for a project called ADHD VOICES. In the 6 years of that project, this idea of embedding young people in research became an increasingly important focus. When I was funded by Wellcome again in 2015, for the BeGOOD project, I knew that a young people’s advisory group needed to be at the heart of the work. I wasn't going to do research in child and adolescent mental health ethics without having young people at the centre.

I have to say, I felt very lonely on my first project, the ADHD VOICES project, and really terrified, because it was all on me. I had a one-day-a-week research assistant and we interviewed 200 kids in America and the UK for months and months on end. Traveling all over the UK and all over America was a huge, huge task. That’s what a first independent research project can be like, if you’re not funded to have a team. By contrast, in this project, there's no question, I couldn't have done it alone. The project itself was too big to begin with. I've worked with some really great postdocs and research assistants. I've been especially proud of the team’s work in creating our young people's advisory groups. We have achieved a lot because we have thought hard about equality, inclusion and diversity; and we have developed a portfolio of novel methods to conduct research and to engage with young people around mental health ethics.

Even in my very first project, my approach was to try to triangulate methods. It's not enough to ask a young person a difficult question that engages their sense of ethics or morality just in one way. We tend to come at questions using different tools, and different approaches, which empowers young people to get to grips with the question, and enables us as researchers to feel we have valid and reliable answers. Triangulation is one thing we do. The other thing we do is we make sure that young people are capacitated to actually engage in the question. You have to help young people be able to answer the question well, trying to avoid what we in ethics call reasoning errors. Reasoning errors are often based on inadequate information, or kneejerk responses. So, it's not to say in any way that young people aren't equipped to do these things, but you have to help, you have to help capacitate them.

As we in mental health science begin to become allies of young people, and use these methods to bring their voices in, I think there is a really important question that needs some more rigorous thinking – what happens when research morphs into advocacy? Do we do we lose a critical sensibility? This is something that anthropology, for example, has thought about for decades, because anthropologists have tended to conduct research as participant observers in communities. They become part of these communities, but they are also researchers who are supposed to be objective, which is really hard. It's hard on your soul, as much as anything else.

I’m glad that I have pioneered approaches to bringing young people’s voices into mental health science. And I’m proud of the BeGOOD project because I feel we have very successfully furthered that mission. But as more funders and researchers also embrace this idea, I'm realising that maybe there’s a different question that needs to be addressed: how do we maintain a critical edge, but without a top-down approach, in our work with young people? There’s a new concept that I don’t like very much, which is used to describe people with experience of mental health challenges: ‘experts by experience.’ The term is meant to equalise the status of the researcher and the person with experience of mental health challenges. Does it do that? Do young people with experience of mental health challenges see themselves as ‘experts’? I think we need to understand if this concept fits with young people’s understandings of themselves in the context of a research relationship.

There are other important questions that our methods innovations in BeGOOD have brought up: How do you scale up and not lose the individual? I do think we've managed that well actually. It’s making sure the tools we use to scale up have involved and engaged young people all the way through, in very personal ways. We've done some really cool and inventive and different stuff. There’s a sense of creativity that we've brought to our work. I talk a lot about the need for rigorous methodology, and I do believe that, but there's also been a lot of fun and play and imaginative stuff that has been really powerful for me.

I’ve said that one big idea I've had in my research career is that we should talk to young people. You wouldn't have thought that that was sort of a rocket science idea, right? But across the board, you know, parents, clinicians, researchers are like: ‘Really? Gosh, that, that's interesting!’ And so I suppose the thing that has changed in me as a person is that that idea has become part of everything I do, including with my own kids. This idea that you have to listen, you need to engage, you need to be thoughtful about how you're listening, and that you need to give young people a chance to express who they are. Early on, I hadn't quite realised that that is such a core part of what I bring to research and to being a human being in the world.

Now, I look at young people's movements, and I think about the social media stuff that can be so damaging to them, and it seems to me that a lot of it is about young people just needing to say, ‘Here I am,’ you know, ‘Listen to me, to us’. Maybe if we did more of that in the world, on a day-to-day basis, we wouldn't have people needing to shout so loudly. Some of the ways young people have collectivised through social media is amazing – including in mental health advocacy. But I also think that social media is a hard and unforgiving place to make an impact, particularly for the kids coming up in the world. I feel that much more strongly than I did at the start.

I also feel older. I feel significantly older, really, I do. At the start of my first project, I could still come into a room and sit down on the floor with a kid and get them to talk to me as though I was more or less a buddy. I don't think that would happen anymore. My sense is that other young researchers really need to come into mental health ethics. I want to be a person who enables other young researchers to do this work – thinking outside the box, innovating different approaches. But always with the sharpest intellectual edge. Because I think that there is a way in which young people relate to young adults that’s harder to accomplish with an older person.  A lot of the people who've been in the BeGOOD team have been in their 20s. That's young!

I've grown up in the course of this project, I've crossed some kind of threshold clearly, that I wasn't necessarily aware of. I've graduated to that place of senior academic, where one is sort of a mentor and a manager, a person who sits more at the vision level, rather than at the execution level. And while I am sad about that in some ways (I miss doing the research myself), I also think that's what success looks like in academia, or one version of success. I feel good about that, because it's allowed everything else to work. You can't do the same thing your whole career. And part of success is enabling the young people in the team to progress themselves. To empower and enable them has become part of how I see myself.


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