Mental health lived experience narratives; recommendations for avoiding misuses and adopting good practice

“This important publication is an accessible guide to methodologically-rigorous survivor-led research investigating how to respectfully and appropriately make use of lived experience narratives in research. I hope these guidelines will be widely adopted.”

Mike Slade, Professor of Mental Health Recovery and Social Inclusion, Institute of Mental Health, University of Nottingham

 Download the NEON good practice guidelines620.33 KB

The Narrative Experiences Online (NEON) study has been exploring how people’s narratives describing mental health experiences can help other people. But whilst lived experience narratives bring huge value in the unique knowledge they can bring to the understanding of mental distress, we have all encountered and learnt about various ways in which they have been misused, with real harm caused to those who narrate them, or consume them.

Back in 2021, two NEON researchers (Caroline Yeo and Stefan Rennick-Egglestone) decided to conduct a systematic review to synthesise all existing research knowledge on how lived experience narratives are used and misused. We were motivated by our personal experience of either having our own narratives misused, or seeing the narratives of others misused, and we wanted to produce a piece of methodologically rigorous research with the potential to change practice around lived experience narratives. Our review was published in the journal Schizophrenia Bulletin, which has been publishing lived experience narratives since 1979. Whilst we hope that this review by itself can contribute to good practices, we wanted to make the findings of our review available in in a form that is as publicly accessible as possible, as our contribution to try and enable people who work with narratives to adopt the best possible practices.

We have now worked with a team of experts, including survivor researchers and people who have worked with narratives themselves, to develop recommendations that are informed both by our review and by their own personal knowledge. We have presented these recommendations in a form that is freely accessible to the public (download link at top of the page). We present a summary of the uses and misuses identified in our systematic review, along with a set of seven recommendations developed by our expert contributors. Our central message is that is important not to see the challenges of using lived experience narratives ethically and appropriately as a barrier to using them at all.

Accessibility and inclusivity is critically important to us; we have worked with a design team to produce a document that is as accessible as possible to all, and friendly for use through technologies such as screen readers.

This document is funded by the NIHR [Personal experience as a recovery resource in psychosis: Narrative Experiences Online (NEON) Programme (RP-PG-0615-20016)]. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

It can be cited as: Yeo C, Rennick-Egglestone S, Ali Y, Armstrong V, Borg M, Bradstreet S, Faulkner A, Franklin D, Klevan T, Llewellyn-Beardsley J, Mottram K, Ng F, Repper J, Slade M, Voronka J, Wooldridge J. Mental health lived experience narratives: recommendations for avoiding misuses and adopting good practice. Institute of Mental Health: Nottingham, UK. 2023.