In this blog, NCB's Rhea Singhvi and Tessa Morgan from the University of Cambridge reflect on a new collaborative study that outlines a framework to prioritise emotional safety when co-producing research with underserved populations.
New research led by the University of Cambridge reveals how emotional safety can be used as a framework to not only minimise distress when discussing sensitive topics but also maximise the empowerment of participants so they feel like partners in a co-produced process.
A research team that included four experts-by-experience (EbyEs) reviewed a total of 21 studies involving active EbyE co-production on sensitive topics and found three key factors at play:
- While being the focus of research can, understandably, make people feel vulnerable and uncomfortable, especially when sharing personal anecdotes, this discomfort is not always received as adverse. Ultimately, it can encourage reflection and evoke passion and feelings of community.
- The review recommends that ahead of any discussions with EbyEs, researchers have adequate trauma-informed training to be able to anticipate the needs of participants and recognise early signs of difficulty. It is important to have access to clinical mental health support and dedicated and confidential debriefing spaces to support the wellbeing of participants, so they come away from the research project feeling seen and validated.
- Symbolic and cultural capital can play a huge role in accessing emotional safety. For example, it can shape young people’s perceptions of who ‘deserves’ to be a part of research and who doesn’t, where lack of access to institutional support and resources can cause a lack of belonging.
Making support available throughout projects
The Cambridge-led review, which is funded by the Three NIHR Research Schools' Mental Health Programme, recommends that both EbyEs and Learned Experienced Researchers engage in live, reflexive discussions throughout any research project about the social, economic, and institutional conditions that make it possible to think, share and feel certain things and not others.
It also suggests that any co-production process must strive to support EbyEs to gain educational qualifications or other markers of value, including having their names on publications. This approach will ensure that the forms of cultural capital they accrue during the process (e.g. knowledge, skills and experience) will be recognised beyond the confines of a specific research project.
Peer support is crucial for emotional safety when co-producing, as it helps activate empowerment. The review also recommends that any engagement with underserved populations continue from conception at design until the end, including centring them in the disseminating process as well.
Jack Smith, expert-by-experience, shares his thoughts on a review of co-production practices
Why emotion is a key element
Participation of underserved populations in research concerning sensitive topics, or co-production, has been acknowledged by researchers as an important tool for knowledge production.
Emotion is central to this kind of participation, where experiential knowledge is considered having value in and of itself. This has been the cornerstone of the approach to involving young people in research projects like COACHES and Living Assessments.
Previously, the National Children’s Bureau (NCB) has facilitated creative and sustainable engagement with young people, for example through our online art gallery and theatre workshops, alongside regular online meetings. A crucial aspect of sustainable engagement in Living Assessments has been making available pre-established support and safeguarding systems, especially considering the lengthy design of projects. Wider care networks and existing research collaborations have given way to further recruitment pathways for some of these young people, creating further opportunities.
As co-production practices gain popularity in both academic settings and the voluntary, community and social enterprise sector, it is important that we collectively reflect on principles that make participation intentional and meaningful more than merely tokenistic.
Recommended guidelines for co-produced research projects
The review has produced a set of 15 recommended guidelines for future co-produced research to act as a set of prompts to be adapted according to the needs of each project:
- Co-create list of range of available support options including clinical mental health support and other supports for wellbeing/ cultural needs.
- Involve expert-by-experience from the start in designing the co-production process.
- Make space for all members of team to discuss vulnerabilities and distress and ensure the expert-by-experience has a designated person they can go to.
- Foster peer support and “backstage” conversations between the experts-by-experience.
- Ensure any self-disclosure is on the expert-by-experience's terms.
- Schedule chill out and social time.
- Provide training in research skills and make sure the learning can be externally certified/recognised.
- Ensure the Learned Experience Researcher is trauma-trained and confident in handling distress in the moment.
- Ensure Learned Experience Researcher has access to emotional support and job security.
- Strengthen connections between the experts-by-experience and the Learned Experience Researchers and other groups supporting the research.
- Promote flexibility throughout the research journey, including the capacity to take pauses or change format.
- Centre experts-by-experience in dissemination and communicate impact.
- Offer support through the end of the project, including discussions about potential impact on identity.
- Renumerate ethically as well as valuing fun.
- Celebrate and account for varied life experiences and intersectionality. These factors will shape access to feelings of safety.
I think the point about managing distress and not making it go away is important. Sometimes researchers think they need to put a barrier up and you can only cross over into this work if you are going to become a professional. But speaking from the heart is what EByE are good at which is why celebrating emotion is really key.
Having ethical pay is important - it’s not just about the amount but also about being able to offer options like vouchers or salary. Thinking about this project, I wish I could have got a qualification out of it which would have helped with getting jobs after it because lived experience work is a bit niche.
Jack Smith
Expert-by-experience and co-author of this review
My experience has been that if there isn’t a walkway then not everyone is going to make a leap of faith. This is particularly true of universities and charities which often struggle to implement meaningful participation for lived experience people. Because every learning journey is different these recommendations are meant to promote discussions to make sure the research reflects the needs of the particular research team. All EbyEs come into the research space to make life a bit easier for someone else. I think hope should be something we hold onto and grow through the research journey.
The biggest gap is the lack of attention to the emotional safety of learned experience researcher. To create situational safety the lived experience researcher needs to be cared for too as they are often juggling the power dynamics of our EbyE group and the institution.
Taliah Drayak
Expert-by-experience and co-author of this review
Glossary
Experts-by-experience (EbyEs)
Researchers whose expertise is based on their lived experience
Learned Experience Researchers (LERs)
Researchers whose expertise is gained from their academic training
Co-production
The process of EbyEs and LERs working together across multiple stages of the research project in an equal, mutually beneficial partnership with reciprocal contributions
Sensitive topics
Research themes often personal in nature, including death, abuse, intimate relationships and sexuality, racism, and other aspects of stigma that impact health
Emotional safety
Proceeding without the threat of undue distress whilst also offering capacity for positive feelings
Symbolic capital
Perceived levels of status, prestige and respect held by individuals within and beyond immediate social networks
Cultural capital
Tastes, values and preferences that may indicate social class and educational background
Rhea Singhvi is Policy and Communications Coordinator at the National Children's Bureau.
Tessa Morgan is Assistant Research Professor in Sociology and Health, and a Wellcome Fellow in the Applied Social Science Group at the University of Cambridge.