UCL PhD student Rachel Perowne shares how her perspective on involvement in research shifted, and why sharing lived experience is key to a brighter future for young people.
Rachel Perowne
A few years ago, I had a lightbulb moment that reshaped my perspective on ‘involvement’ in research.
During my MSc in Behaviour Change at UCL I was investigating, with the support of my supervisor Professor Leslie Gutman, the moderation of self-harm content on an online forum for young people.
The goal was to interview moderators – those responsible for overseeing discussions and ensuring safety within the forum. However, when I sent out recruitment emails, I did not receive the rush of responses I was hoping for.
An involvement ‘lightbulb moment’
At first, I was puzzled. Was it the incentive I offered? A bad time of year? After some reflection, I wondered how comfortable my potential participants were likely to be with participating in a face-to-face interview over Zoom.
After all, these were participants – often young people themselves – whose role was to engage with other young people via online forums.
This prompted a shift in my approach; I offered a cameras-off option (whilst still being sure to verify each participant). I was pleased (and relieved) that this small adjustment led to a significant increase in participation, allowing me to gather valuable data and publish the study.
The experience taught me a transformative lesson: the importance of involving the people being studied, from the outset.
Involving young people from the start
The experience taught me a transformative lesson: the importance of involving the people being studied, from the outset.
Had I consulted with the moderators beforehand, I could have designed a study that better met their needs. This realisation sparked my interest in how young people engage with mental health research more broadly.
This is what has shaped my studies for the past three years. I discovered that young people’s involvement in mental health research is still patchy, and this led me to a PhD focused on optimising young people’s involvement.
What do we mean by involvement?
My first challenge came in defining what we mean by ‘involvement’. It’s a term that can be misunderstood or misinterpreted.
I know I’m preaching to the converted when I say that it’s more than just having young people as participants in a study! It encompasses a wide range of activities – from young people being advisors to co-researchers or, increasingly, taking a leading role in shaping research priorities.
Through this study I continued to be struck by the inconsistency in terminology; different stakeholders often use the term ‘involvement’ in different ways.
Creating clarity in research involvement work
Fast forward to my most recent study, “Understanding and Defining Young People’s Involvement and Under-Representation in Mental Health Research: A Delphi Study.”
This research brought together 27 experts, including academic researchers and young people (including some from McPin’s Young People’s Network, to whom I’m very grateful), to explore various dimensions of involvement.
It was overseen by my supervisors, Prof Leslie Gutman and Dr Sarah Rowe, and a fantastic group of young people, advising along the way.
Through this study I continued to be struck by the inconsistency in terminology; different stakeholders often use the term ‘involvement’ in different ways. This lack of clarity can create barriers for researchers who want to understand how to include young voices in their work.
One of the outputs we hope will be most helpful from this study is the matrix we created that highlights and defines a spectrum of involvement activities, showcasing the many ways young people can engage in mental health research.
Interestingly, we found that, while researchers are increasingly recognising the importance of youth involvement, fewer projects seem to include young people at the outset, particularly when setting research priorities, or at the end when deciding how to communicate findings or evaluate results.
Our findings suggested that representation is crucial, and we must ensure that the voices of potentially marginalised young people are heard in the research process.
Involving systemically underrepresented voices
The experts in the study also identified a clear need for improvement in how we involve young people from under-represented backgrounds, for example young people from minoritised ethnic groups or lower socio-economic backgrounds or those with disabilities.
Our findings suggested that representation is crucial, and we must ensure that the voices of potentially marginalised young people are heard in the research process.
However, we can’t do this unless we know who is currently being represented in activities such as Patient and Public Involvement (PPI) and co-production. At the moment our data is not that great.
I’ve started work on my next study, which is a systematic review of barriers and enablers to underrepresented young people being involved in mental health research and I can already see that many studies don’t report on the characteristics of the young people involved.
Of course, there are sensitivities with this, as confidentiality is so important, but by using existing tools (such as the GRIPP2 checklist), by asking young people what data they are happy to share, and by following clear ethical guidelines, it is possible.
The future of research
Overall, it’s clear that more work is needed to ensure that mental health services meet the needs of all young people and young people themselves are key to making this happen, through their involvement in all stages of the research process.
I’m excited about the next steps in this journey. Our next project will focus on talking directly to young people to better understand the barriers they face and how we can effectively overcome these challenges.
If you’re interested in exploring deeper into this subject, please take a look at the full study on understanding and defining young people’s involvement and under-representation in mental health research.
Additionally, feel free to get in touch with me directly at [email protected].
Let’s continue this important conversation and work towards a future where all young people have the opportunity to shape the research that affects their lives.
Rachel is currently in the third year of her PhD at University College London, within the Centre for Behaviour Change. Her research focuses on improving the involvement of young people in mental health research.
To find out more about McPin’s experience and advice for working with young people in research, take a look at our 10 for 10 resources:
- Working as a co-researcher: Looking at how co-researchers shape young people’s mental health research
