Alex Kenny talks about disclosure, empowerment and the need for breaks while working as a peer researcher on a virtual reality project.
I recently worked on a study exploring people’s experiences of an automated virtual reality therapy known as gameChange. Results from a trial of gameChange have just been published. They show that the therapy helps people with severe social avoidance and psychosis feel less anxious in everyday social situations.
I was part of the research team speaking to people who took part in the trial about the therapy, as well as about their lives before and after. This work should be published later in the year.
We used peer research methods throughout. This means means people with similar lived experiences to the research participants steered and conducted the research. In my case, this meant I was a ‘peer researcher’ as I have experience of mental health problems, including social anxiety and psychosis.
This was a new way of working for me. I have reflected quite a bit about it, so I thought I would share a few of my thoughts here.
Experiences in common
We designed the study so that we could take advantage of our common experiences to help people feel more at ease during the interviews. I was responsible for recruitment and spoke to participants several times.
During a pre-call I got to know a bit about the participant and shared some of my own mental health lived experience. I was able to choose when, how, and what to disclose and this differed between calls.
This sharing of lived experience, or ‘peer-ness’, in a sense primed the participant for the interview. It can be seen as a method of warming up the conversation to help people engage more openly in the interview. Well, that was the hope!
After the interview I spoke to them again, when the recording had stopped. Some participants opened up further and told me things that they had not shared during the interview. We could not use this information as data but it did help provide some useful context when it came to analysis.
It also helped me personally, to gauge my approach and think carefully about my role and influence in the interview.
As with all qualitative research, reflectivity of the researcher is vital in the analysis and write up phases.
Impact of the peer researcher
We also wanted to see if we could learn anything about the impact that me being a ‘peer’ had on the research. Interviewees were asked whether the presence of a peer researcher had made a difference to their decision to participate and in their experience of it. We were aware this was a slightly leading question but wanted to get some feedback.
We spoke to 20 people in total. 10 said it encouraged them to take part and 14 said it made them more comfortable sharing during the interview. Of course, some may have said this to please us, but 14 wanted an additional post-interview call with myself, during which some had specific questions about my lived experience.
Perhaps this suggests that they really did find these extra conversations helpful. Or maybe they just needed someone to talk to. My feeling is a bit of both.
We are currently looking at the data to see what we can glean about how peer disclosure effected the interview.
I believe that through sharing small bits of my personal story, the participants were encouraged to open up and share more about what had happened to them. A slightly different interview relationship was built between myself as the peer researcher and the participant. Different information may have been shared.
Just because I have similar experiences on paper to the research participants, it doesn’t mean that our experiences are the same. I was very aware of this during the interviews. I tried not to make assumptions or give the impression that I always understood them.
This was also important during the analysis of the data. I could draw on my own experiences to open up possible ways of interpreting the data, but it always had to be grounded in the data itself and not imported from my experience. The whole process has been an interesting learning journey for me.
There are some practical challenges to working as a peer researcher. It was important that I only disclose as much as I felt comfortable with and in a way that was natural to me in each situation. In practice, sometimes I avoided explicit personal disclosure by talking about “my friend with psychosis says…” or referring to “someone with social anxiety may want…”.
On other occasions, I felt comfortable to refer directly to my personal experience and that the situation warranted it. I found that when I had a particularly strong rapport with the participant, this was easier to do.
Ripples of disclosure
When sharing, I did wonder how much it was helping. The impact was not always obvious in the moment.
I also wondered about the ripples of my disclosure. Were the participants going to talk about what I had shared, with other people? There was no confidentiality agreement about the sharing of my lived experience, while the participants had signed a consent form so they are protected.
I had to be mindful of guarding my personal boundaries and not being a verbal open vault. Both to protect myself but also when doing qualitative research, my role is to hear the experiences of others, not impart my own story.
At times I needed to debrief with supportive colleagues when issues discussed with participants and project members were a bit too close to home. Sometimes the emotional labour of the work took its toll, something others have discussed in a peer context.
At one stage, I couldn’t face the work due to feeling unwell and I needed to take a break. Another time, the three members of the analysis team suffered from burn-out, something that was likely compounded by two long years of a pandemic.
I learnt about the importance of taking breaks to refill one’s cup, days off and vacations including during the pandemic.
Using lived experience at work
Working on this project was a learning curve. It was great being part of a research team who share your values and are working to tackle an important social issue. The experience was confidence building and was a stepping-stone into full-time employment (I began as a research advisor and then became a Peer Researcher working full time).
I learnt new skills and developed my career in mental health research. There was opportunity for networking and building links with universities and other organisations.
The peer research aspect has been empowering and rewarding. I am working for an important cause which is relevant to my life. It was easy to use my lived experience in my work as I had reached a stage in my own journey where I was comfortable sharing it.
I was able to manage my mental health while in employment, nurture self-awareness of my mental health and become better able to tackle my symptoms. It felt empowering to hear the stories of others and make further changes in my own life. Changes which many of the participants had made since taking part in the gameChange therapy themselves.
Alex Kenny is a Peer Researcher and a Public Involvement in Research Officer at McPin.
WATCH Alex and Jess talk about how they think a peer research approach impacted data collection: