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Co-design in mental health research

Professor Andrew Thompson at Warwick Medical School is leveraging the power of virtual reality to treat psychosis. He chatted to us about the importance of involving people with direct experience of psychosis in designing his new tool.

Hi Andrew! What’s your project about, and what motivated you to do this research?

Our project is looking at the possibility of using technologies such as virtual worlds or virtual reality to help people with mental illnesses - specifically psychosis.

Young people with psychosis experience symptoms like hearing voices, difficulties getting their thoughts in order or feeling paranoid. As a result, they also often struggle with social activities. Before the project, we’d previously tried to deliver group therapy to young people, but had difficulty getting them to attend. We wondered whether using a virtual world to run a virtual therapy group might increase the likelihood of people attending. 

What is ‘co-design’ and how did it feed into your work?

‘Co-design’ or ‘participatory design’ is a process involving people that could actually benefit from the product in all aspects of its design. In this case, we involved young people with a diagnosis of psychosis and carers for people with psychosis, who worked alongside the researchers and designers.

We feel this process was instrumental to our project’s success. Our final design and some of the ways we delivered the therapy were very different to our initial ideas, which is all down to the contributions from the group.

Why do you think it’s important to involve people with experience of mental illness in mental health research?

The input of young people with direct experience of psychosis was extremely important. Their feedback radically influenced the final product and informed changes along the way, to make sure the design was something that they would be comfortable to engage with.

It was also brilliant to see them feel so empowered and able to use their experiences to feed into something that could really change the lives of other young people experiencing psychosis. We learned a lot about what might work and what would feel safe. We were lucky to be able to work with the Young Persons Advisory Group that had been set up by MQ.

What feedback from the group stuck with you – did they have any thoughts that surprised you?

There were a number of things we were surprised about. Initially, our designer had built a virtual world ‘setting’ for the group to have therapy based on classically relaxing environments such as beach scenes. These settings were generally rejected by the group, as people wanted an environment that represented more traditional therapy spaces. This was actually a running theme - anything that had a more fantasy element in the virtual world (such as being able to fly and pick an avatar that was not human) ended up being switched off or removed.

The group also made suggestions like designing a virtual library that they could go back into after each therapy session was finished.

What are the next steps for this work, and how will you use co-design in the future?

We’re hoping to get funding to do a larger trial of our virtual therapy world design. This will involve further adaptations to the design, and we’ll be setting up a similar co-design group with young people as part of this process.

How can young people who are interested get more involved in research?

There are a number of ways to get involved directly in research. Most Universities and Hospital Trusts have people who try to help young people with lived experience get involved in commenting on planned research and perhaps then getting further involved in research planning and design. MQ and other organisations such as the McPin Foundation also have a developing network of young people getting involved in research and leading the research agenda.

Last updated: 13 June 2019

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