Becoming a Lived Experience Researcher – Or, in Layman’s Terms, Putting the Psycho in Psychology

My journey to becoming a lived experience researcher began not in a classroom or a research lab but in my own mental health. Experiencing mental distress through an anxiety disorder from a young age was more than just a challenging time in my life, it was an unexpected catalyst for my future career. It was during these dark times that I became interested in human behaviours, rooted in questioning why I experience and interpret the world around me so differently to my friends and family. This curiosity ignited my passion for this field, and my firsthand experiences with services and stigma fuelled my desire to contribute to research that resonates with real-world experiences. I went on to study psychology at a postgraduate level. Still, all that time, I was worried that my lived experience would hold me back and that I would need to justify my credibility and value despite having lived with an anxiety disorder. It was only while I was looking for my first job that I realised my lived experience could be a strength and that there was a way of utilising what had long been an obstruction.

Lived experience research is a methodology that values the insights of those who have directly experienced the phenomena under study. It prioritises personal narratives and firsthand accounts, providing a richer, more authentic understanding of complex issues and acknowledging that people are experts by experience. Unlike traditional research, which often maintains a detached perspective, lived experience research invites participants to become co-researchers, actively shaping the study.

A significant part of my journey involved embracing Participatory Action Research (PAR). This collaborative approach allowed me to work alongside others with lived experiences, co-creating research projects that addressed our shared concerns. During the first research study I was heavily involved in, I facilitated the Lived Experience Advisory Panel, which took an active role in creating resources, data analysis, and writing [1]. PAR is not just about collecting data - it's about empowering experts by experience, fostering mutual learning, and driving meaningful change.

The path to becoming a lived experience researcher has had some challenges. Navigating the academic world with a history of mental distress, which at times see me as one of them rather than one of us, can be daunting. Stigma and misunderstandings often lurk around the corner. Yet, these obstacles have only strengthened my resolve. Each hurdle overcome is a triumph that adds depth and resilience to my research. I have been very lucky and am grateful to have worked with and been supported by other lived experience researchers and organisations [2, 3].

One of the most rewarding aspects of this journey has been seeing the impact of lived experience research. By bringing authentic voices into the conversation, we challenge existing paradigms and advocate for changes deeply informed by real-life experiences. Whether it's influencing mental health policies, improving service delivery, or simply providing a platform for marginalised voices, our work has tangible, meaningful outcomes. Together, we can continue to transform personal struggles into powerful research that makes a difference.

Thank you for reading!

References:

1)       Parri, L. A., Barret, K., Hill, R., Hoque, A., Isok, I., Kenny, A., ... & Cella, M. (2024). Evaluating the acceptability of remote cognitive remediation from the perspective of psychosis service users. Behavioural and Cognitive Psychotherapy, 1-13.

2)       https://www.kcl.ac.uk/research/sure

3)       https://www.traumascapes.org/