Lived Experience

Researchers with lived experience or the art of being caught between two stools

netECR

By Pauline Rivart

In early 2026, I published a paper on trends in methods of suicide in mental health patients. I was fresh out of an event on impact when the paper was published and I of course had to apply everything I had just learned. One very carefully crafted LinkedIn post later, I was pleased with how much it was being shared and how fellow researchers were critically engaging with it. What I had not anticipated was a comment from a lived experience researcher sharing concerns about the language I had used in the paper and the potential for the paper to be triggering material. I thanked the commenter for sharing their concerns and agreed that the language we use in epidemiological research can feel very cold. And then, without thinking much about it, I disclosed my own lived experience.

I have been working in suicide research for four years and, prior to this, conducted research on suicide bereavement as part of my master’s dissertation. Over the years, I have chosen very carefully how much of my lived experience to disclose to supervisors and colleagues. To this day, there are bits I do not share in work settings, for fear of being treated differently and perceived unfit to do my job. So I will often say “I have lived experience of suicidality and suicide bereavement” and leave it at that. This (limited) disclosure has however never made it into any of my published work. This was actually picked up in a blog about my first ever publication. While I try and look back kindly on this paper, which I worked on with very little research experience and locked away in my student bedroom during successive Covid lockdowns, looking back, I’m annoyed at myself for deciding to omit my positionality statement, which did exist in my dissertation, from the published manuscript. I was working against a very tight word count imposed by the journal and, not knowing as much as I do now about qualitative research, I just removed the paragraph. The blogger pointed this out and rightfully so – you need to read this paper about suicide bereavement in ethnic minority groups with the understanding that 1) I am White French-British, and 2) I have been bereaved by suicide. Both have shaped my analysis.

There is a difference between positionality statements and disclosures though. Positionality is conceptual, it acknowledges how identities shape research and aims to identify circumstances within a research team that could lead to bias and subjectivity[1]. It is an integral part of reflexivity, transparency and rigour in qualitative research and positionality statements are therefore expected in qualitative work[1]. Some have however argued they can end up being tick-box exercises[1] and portray lived experience as incompatible with high-quality, robust research[2]. For decades, feminist scholars have challenged the assumption that ‘outsider’ researchers (that is, people with no lived experience of the topic being researched) are more objective, as this fails to recognise that no research is free of bias and subjectivity, even when conducted by outsiders[3]. Wilkinson and Kitzinger[3] argue that there have been less opportunities to challenge this in the field of psychology as the discipline has been under huge pressure to commit to logical positivism. I would know – this was drilled into my skull the second I stepped onto my psychology undergraduate course. On the other hand, disclosure is empirical and focuses on what a person has experienced. Mehrabadi and colleagues[2] argue that, like positionality statements, disclosure can ensure honesty and transparency, both fundamental principles of research integrity. However, for those of us researchers with lived experience, disclosing is a very tricky act to balance. As noted in a blog by fellow researcher with lived experience Emma Nielsen[4], disclosing lived experienced as a mental health researcher is not a neutral act. Disclosing is an incredibly personal decision that can have repercussions on how you are seen as a researcher. This is especially relevant in our field as mental health research is subject to additional stigma. A study looking at so-called ‘self-relevant’ research found that psychologists and trainees had more negative attitudes towards self-relevant research on mental health topics (e.g., depression, schizophrenia, suicide) compared to physical health topics (e.g., cancer)[5]. As such, it is generally accepted that researchers should not have to disclose if they do not wish to.

Journals in our field now tend to have guidelines for reporting lived experience, especially as this becomes a requirement for submission, but there more rarely is guidance for reporting lived experience in a research team. The Lancet Psychiatry, in their author guidelines, note the following: “Please note that if any of the authors is working from a position of lived experience but does not want to disclose this about themselves, it is possible to add statements of the form ‘we involved people/a person with related lived experience in the study design and implementation’.” Unfortunately, disclosure is not always welcomed by journals, with reports of editors and peer reviewers describing disclosure as inappropriate[2,3,6], seemingly at odds with efforts towards lived experience involvement. Conversely, Baidawi and colleagues[7] reported several incidents whereby their research team was asked to disclose personal characteristics as part of peer reviews and funding applications, despite not wanting to do so. They concluded that, in efforts to promote lived experience inclusion in research, academia sometimes fails to apply core ethical principles of research to researchers, in the same way researchers are expected to with participants.

So why is it that I chose to disclose in that LinkedIn comment? Well, there is an understanding that disclosing may positively impact your research. Evidence shows that lived experience researchers are perceived as more trustworthy and credible by people with lived experience, and that disclosure of lived experience may facilitate study recruitment, and rapport and trust building between researchers and participants[8,9]. But something else happened when I drafted my response to the comment and chose to disclose: I felt angry that an assumption had been made whereby I was insensitive and had lost sight of the very real people behind my data. In hindsight, I think I was also trying to say “I’m on your side”. In reality, there are no sides because the binary concept of ‘insider vs outsider’ only works if you are looking at one single parameter at a time (e.g., being White or not)[3] and is somewhat incongruent with people’s inherent intersectionality. Instead, Hawke and colleagues[10] proposed three dominant identities among researchers with lived experience: (1) lived experience-dominant identities where lived experience is known and an integral part of the researcher’s career; (2) academic-dominant identities where the researcher’s career is primarily built on their academic identity, with their lived experience being a less dominant feature of their work, and (3) fully academic identities, where lived experience is a very minor part of the researcher’s identity. They note that these identities each come with their unique challenges: researchers with predominantly lived experience identities may find their work more emotionally demanding, while those whose identity is predominantly tied to academia may find that their lived experience gets dismissed[10].

Cue the second stool. As previously noted, I choose very carefully what I share at work, but it can backfire if you are already wrestling with where you stand as a lived experience researcher. Not long after the LinkedIn post, I was working on a mixed-methods study on clinician bereavement and was specifically leading on the qualitative element of the study. After months of analysis, our research team agreed on the final themes and I was quite proud of the narrative we had built, considering the sensitivity of the topic. Comments from co-authors came through and my identity crisis resurfaced. Some of the feedback noted the language I had used to describe the experiences of bereaved clinicians might be perceived as insensitive by bereaved families. I wanted to shout “but I am family!!!” into the void (I shouted it at my poor partner over dinner instead).

They raised a fair point though, lived experience or not, this had to be considered. In this case, time has been on my side, my grief is objectively nowhere near what it once was, and the words I used in the paper might not have been perceived in the same light by another bereaved individual. In addition, I read the accounts of over 600 clinicians who had lost patients to suicide and felt their grief, over and over again, for several months, and I realise that readers will never experience this. My lived experience as a researcher has the potential to bring a deeper, richer and more nuanced understanding of the topics I research, but it should not replace the voices of other peers with lived experience. There are realistically as many lived experiences on a particular topic as there are individuals with experience of this topic, and while we cannot include every single person or view, we have a duty to involve people with varied experiences to try and reflect this diversity.

Photo by Pixabay.

There is another, more uncomfortable consideration here. My identity as a researcher, and the position of power and privilege that comes with it, can be at odds with peers with lived experience. Once a year, I teach Master’s students on a forensic psychology course about research ethics. The final goal is for them to be able to critically pick apart research, including theirs, with an ethics hat on. To do that, I need them to understand the history of ethics and the wider context in which they operate as researchers. Historically, research in psychiatry and psychology has caused harm to vulnerable participants and there are plenty of examples of abuse and coercion. The inclusion of lived experience was non-existent and there was no consideration of how research would affect the very people it was studying. It’s easy to say to my students “please do not run the Stanford Prison Experiment” and for them to leave the lecture knowing how to fill in an ethics application. Crucially though, I also need them to understand and acknowledge how this history has impacted and continues to impact research, and how it is perceived outside of academia. Lived experience involvement is now a requirement in most grant applications (e.g., NIHR, ESRC, the Wellcome Trust), with clear guidelines on how to involve and remunerate lived experience collaborators. I see excellent examples of co-production and co-design on a regular basis, including in my own department. Nevertheless, the mistrust between researchers and people with lived experience remains. So my job is to make sure students understand why lived experience involvement is central to high-quality research, and recognise they have the opportunity to repair the relationship between researchers and people with lived experience with each study they conduct. Power dynamics and privilege will not suddenly go away, but the systematic embedding of co-design and co-production means we can slowly move away from the historical ‘them vs. us’.  

So where does that leave us? Often in this weird in-between, limbo-like space but I think that’s okay. My identity probably aligns most with academic-dominant identities as my lived experience is not at the forefront of what I do, but those experiences do influence who I am as a researcher. As with the insider/outside debate, I’m not one or the other and I’m not constantly switching between the two stools. I’m just me. That means I take a deep breath whenever I see people born in 2006 who have died by suicide in our dataset, the same year my 19-year-old brother was born. I take a second to think about my aunt whenever I’m going through mortality data and see someone who died in the way she did. I have worked on NHS quality improvement programmes and wished my loved one had received the relational care at the centre of these programmes, rather than the cruel and dehumanising practices I have seen on some in-patient wards. And believe it or not, none of this impacts the quality of my work.

Continued efforts to embed lived experience into everything we do and advocating for our fellow lived experience peers in less privileged positions are key to our research being high-quality, acceptable, meaningful and impactful. And while it will always be down to researchers with lived experience to disclose however much they want to, let’s keep in mind we are very much there, even when we say nothing or are a bit vague.

 References

  1. Sibbald, K.R., Phelan, S.K., Beagan, B.L., & Pride, T.M. (2025). Positioning Positionality and Reflecting on Reflexivity: Moving From Performance to Practice. Qualitative Health Research, 0(0). https://doi.org/10.1177/10497323241309230
  2. Mehrabadi, A., Austin, N., Keyes, K.M., & De Vera, M.A. (2024). It’s personal: navigating research questions that stem from our lived experiences. International Journal of Epidemiology, 53(6). https://doi.org/10.1093/ije/dyae132
  3. Wilkinson, S., & Kitzinger, C. (2013). Representing Our Own Experience:  Issues in “Insider” Research. Psychology of Women Quarterly, 37(2):251–5. https://doi.org/10.1177/0361684313483111
  4. Nielsen, E. (4 September 2017). “Me too”: Mental health and disclosure as an Early Career Researcher. netECR. https://netecr.org/2017/09/04/emma-nielsen-me-too-mental-health-and-disclosure-as-an-early-career-researcher/
  5. Devendorf, A.R., Victor, S.E., Rottenberg, J., Miller, R., Lewis, S.P., Muehlenkamp, J.J., & Stage, D.L. (2023). Stigmatizing Our Own: Self-Relevant Research (Me-Search) Is Common but Frowned Upon in Clinical Psychological Science. Clinical Psychological Science, 11(6):1122–40.https://doi.org/10.1177/21677026221141655
  6. Fox, J., & Gasper, R. (2020). The choice to disclose (or not) mental health ill-health in UK higher education institutions: a duoethnography by two female academics. Journal of Organizational Ethnography, 9(3):295–309. https://doi.org/10.1108/JOE-11-2019-0040
  7. Baidawi, S., Avery, S., Ball, R., & Newitt, R. (2025). Living with Experience in the Academy: Pressures to Disclose in Routine Research Activities. Australian Social Work, 78(2):226–35. https://doi.org/10.1080/0312407X.2023.2237490
  8. Dwyer, S.C., & Buckle,  J.L. (2009). The Space Between: On Being an Insider-Outsider in Qualitative Research. International Journal of Qualitative Methods, 8(1):54–63. https://doi.org/10.1177/160940690900800105
  9. Rosenberg, S., & Tilley, P.J.M. (2021). ‘A point of reference’: the insider/outsider research staircase and transgender people’s experiences of participating in trans-led research. Qualitative Research, 21(6):923–38. https://doi.org/10.1177/1468794120965371
  10. Hawke, L.D., Sheikhan, N.Y., Jones, N., Slade, M., Soklaridis, S., Wells, S., & Castle, D. (2022). Embedding lived experience into mental health academic research organizations: Critical reflections. Health Expectations, 25(5):2299–305. https://doi.org/10.1111/hex.13586

Pauline Rivart is a Research Assistant at the University of Manchester, England (United Kingdom).

Email: pauline.rivart@manchester.ac.uk

Post featured photography by Andrea Piacquadio, on Pexels.com.

Leave a comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.