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Bringing the voice of lived experience to mental health and violence research

ESRC Centre for Society and Mental Health Conference 2024

Saffron, Bianca, and Alysha

Peer researchers

07 March 2022

We recently had the opportunity to become peer researchers for a study about violence and mental health, which was funded by the UKRI Violence, Abuse and Mental Health Network. In this project we helped analyse data and used our own lived experience to interpret the findings and co-author an academic research paper.

The study examined how adolescents’ experiences of violence and neighbourhood disorder (e.g., vandalism and muggings) affects their mental health as they move into adulthood. We used data that has been collected from 2,232 British twins who were followed from birth until they were 18 years old. During this time lots of information was collected from the participants, including their experience of physical violence and the level of neighbourhood disorder where they lived during adolescence, and their symptoms of mental disorders when they were aged 18. We were also interested to find out if having supportive relationships, higher intelligence, or coming from a wealthier family might help protect adolescents from developing mental health problems following experiences of violence and neighbourhood disorder.

Being peer researchers not only allowed us to share our perspectives in order to make this research more valuable, but it has benefited us as individuals too. Here we reflect on why we got involved, what we learned, and why we think lived experience matters for mental health research.

Getting involved

We found out about the project through an online advert on the McPin Foundation website, in which researchers at King’s College London were looking for people aged 18-25 with lived experience of violence and mental health. There were many reasons we wanted to get involved:

I had been through a lot of difficult experiences during my childhood, adolescence, and young adult life. When I saw the advert, I was intrigued as to how I could impact the world of research, despite never being involved with research or academic papers before.”– Saffron

I was so interested to find out more about what this research was and how it might make a difference to others in the future. I also felt quite passionately that it is important to ensure a lived experience perspective was included, as many viewpoints as possible contribute to outcomes that have meaning and purpose.– Alysha

The main reason I personally got involved is my passion for mental health. I considered this project a good opportunity to bring awareness and de-stigmatise the topic area. I am also in the process of starting my career in psychology, and this study allowed me to expand my experience in research.– Bianca

Because of the COVID-19 pandemic we had to work together virtually. We met via Zoom and learned about how adolescents’ experiences of violence, neighbourhood disorder, and their mental health had been measured by the researchers. Then we used our own experiences to make predictions and we even got to analyse some of the data and interpret the results ourselves. We read other published papers to gain an understanding of the academic writing style and then we drafted paragraphs to describe what we found in our study. Our final task was to reflect on what we had done and identify any limitations of the research. These experiences enabled us to become a real part of the project.

We all feel that being peer researchers in this project was a valuable experience for us:

I didn’t expect to be as involved as I was, which was a lovely surprise. I thought it might just be looking at content and being asked a few questions, but we actually got to learn how to analyse statistics and learn about how a research paper is written for example. I learnt so many skills that are transferable in a supportive environment.– Alysha

Looking back on the research paper and my involvement, I do feel proud, and like my voice was heard, which is gratifying, and also exciting because I hope that it means the study will be more useful. I particularly found analysing the results interesting and talking with my fellow researchers about their interpretations - this was a chance for me to actively use my experiences to make sense of what the data showed.– Saffron

The importance of lived experience

One thing we all realised is how important it is to have people with relevant lived experience involved in research studies. Lived experience affects one’s choices, options, experiences and opinions, and these factors all influence one’s perception – and therefore we offer a more relevant perspective. This is not only important to avoid misinterpretation, but it's vital because the results of research need to echo and reflect the experiences of participants. We strongly believe that having people with real life experience as part of the research team helps make the results – and what comes from the study – more valid.

I consider peer researchers a crucial part of research as I believe it gives people with mental health issues a voice and potentially makes them feel more understood.– Bianca

Moving forward, we want to encourage more researchers to include people with lived experience in all aspects of research.

I would have liked to have been involved from the outset of the research. I feel I could have perhaps contributed to shaping the research question or how the data was collected, and then had more of my ideas within the actual research, rather than within the interpretation only.– Saffron

And we want to encourage more people with lived experience to get involved and seek these opportunities. People with lived experience offer so much value and can learn so much from taking on these roles - and most importantly, they are key to making research more relevant, useful, and impactful.

We’re excited to have submitted our research paper for publication and we hope to be able to share our findings with you soon!

Further information about our research project can be found here.