Dr Ruth Knight and Richard Knight are academic researchers with lived experience of subjects they have studied. In this article, they discuss how researchers like them provide a unique viewpoint that can improve mental health research, but also address the privilege that comes with being a peer researcher with an academic background. They explore the challenges and emotional labour of having personal experience of your research subject, discuss lived experience in research through an intersectional lense, and how supportive mentoring can transform mental health research for the better. Ruth is part of the Emerging Minds network.
Unique perspectives and personal insights
Traditionally we think of participants and researchers as being two very different groups; the people doing the research and the people being part of the research. However, for many, the boundaries between these two groups are more permeable. Particularly in mental health research. The wisdom and knowledge of people living with the issues that they research is invaluable. Peer researchers occupy both the role of researcher and the role of participant.
Despite this, lived- experience researchers often:
- struggle to gain academic recognition
- are not given authorship on work they have contributed to, and
- are not paid on an equivalent level to traditional academic researchers, or even not paid at all.
Being academic researchers with lived experience of the issues we research, we feel that we cannot identify fully with the role of traditional researcher nor with the role of peer researcher. From this perspective, we would like to highlight some of the most relevant issues around lived experience in mental health research.
Having lived experience of the kinds of mental health issues that you are researching provides a unique viewpoint. Living through an experience, such as having an eating disorder or being a disabled therapist, gives a very particular window into an experience. Reading all of the available articles and books about a subject will never be able to capture what it’s like to actually experience that thing. There is no substitute for sitting with an experience and feeling what it is like to live through it.
What does lived-experience research bring to a project?
Given the unique perspective provided through lived experience, it is surprising that peer researchers are not valued much more highly than they are in many institutions today. From our own encounters, as well as having created co-production-based research with other peer researchers, we suggest that this lived experience can:
- help other researchers understand what the most pertinent or pressing problems are within an area of mental health
- give an idea of the kinds of methodologies that would be most accessible to the relevant participant group
- provide insight into the areas that research has got it wrong or missed out on something important; and
- help prioritise what researchers should focus on and highlight moving forwards.
Researching from a place of privilege
Given our experiences both of being academic researchers as well as having relevant lived experience, we acknowledge that researchers with these kinds of experiences who haveinstitutional support occupy a place of privilege that allows our voices to be heard over and above other peer researchers.
As mentioned earlier, peer reseachers without institutional support or academic experience are:
- less likely to have their expertise respected and valued
- more likely to not be paid in line with their skills, or to be on fixed-term contracts
- less likely to have access to the kinds of resources that universities or other institutions can provide, such as access to peer-reviewed articles, affiliations that can be used to gain access to different kinds of knowledge, financial support to publish and present their research, and
- often lack mentorship and guidance from experienced researchers or practitioners.
As well as having a negative impact on the peer researchers themselves, the quality of the mental health research that is being carried out is often poorer as a result of the lack of support for a wide range of peer researchers. If peer researchers were given equivalent resources and security, mental health research would be more likely to accurately and accessibly address the questions that are most significant for the relevant communities. This would mean we are less likely to use funding and other resources in ways that don’t create a tangible benefit for the communities we serve, something of vital importance in mental health research.
How your lived experience in research can affect you
For both of us, our own lived experience of the problems that we research has been invaluable. However, there are undoubtedly downsides and difficulties associated with this too. Just as there are boundaries drawn between participant and researcher, there are often fences in between peer researcher and academic researcher.
Being somebody that occupies both of these spaces has its own complexities. One issue that repeatedly comes up for us relates to the ways that others perceive the value of lived experience. Generally, research culture is getting better at accepting the importance of lived experience, but is more resistant to acknowledging that academic researchers often have relevant lived experience too.
There needs to be a wider acceptance of the nuances of peoples experiences and that the boundaries between roles are likely to be blurred for many people. There are also hidden costs for researchers with lived experience, particularly the impact of the emotional labour that we are more likely to be asked for. This might show up in the ways we are asked to share our own (difficult) experiences with others, or the kinds of extra emotional insight we are expected to provide in a way that researchers without declared lived experience are not.
The crucial matter of intersectionality and social justice in mental health research
People experiencing mental health problems are more likely to be marginalised in other ways as well. That might be through race, sexual orientation, gender expression, socioeconomic status, amongst others.
For us, one way that this comes up is through the experiences of being physically disabled. There are lots of ways that having disability can affect you as a researcher, particularly a researcher who has lived experience of mental health issues.
Many of the difficulties are practical. For example, not being able to access conferences or presentations. We have experience of having to deliver conference presentations from the floor where nobody could see us, because the stage where other delegates presented was not wheelchair accessible.
We may not have the energy or ability to contribute to as many projects as our able-bodied colleagues, or having to fit supervision around hospital appointments and medical procedures.
There are also emotional effects of being a disabled researcher. It can be exhausting to always be the person asking for reasonable adjustments, having to fight for extra funding because it’s impossible to do a conference trip in one night without causing a flare up, or needing to manage the shame and upset that come from having to let a colleague down.
Peer researchers from other marginalised groups experience a whole range of additional problems, many of which are misunderstood by those without lived experience. We can personally attest to the importance of supportive mentors who encourage us and value our experiences, as well as institutions that put their support for social justice into practicable actions to ensure accessibility for peer researchers.
Peer researchers, those working within and outside of academia, and those with and without traditional research training, provide invaluable knowledge, perspectives, and wisdom related to mental health research. In order to properly respect their skills, we must push for greater recognition, better working conditions, and equitable access within research institutions.
We want to underline the importance of not pushing people into narrow roles, but instead taking a pluralistic perspective that acknowledges the wide ranges of experiences that researchers from many different contexts have, as well as the myriad ways that they might experience marginalisation.
The #MentalHealthResearchMatters campaign celebrates the work of eight networks, find out more about them.