2nd December 2020 Blog

We often discuss why lived experience improves research quality, but what about the ‘how’?

We often discuss why lived experience improves research quality, but what about the ‘how’?

Rachel Temple

When I first discovered the ‘Trainee Researcher’ job vacancy at McPin back in 2017, I was immediately attracted. I’d been on the hunt for an opening into mental health research for what felt like forever. But what really captivated me about this role was the lived experience aspect: the opportunity to draw from my personal experiences of mental health issues to shape and improve research quality. For a long time, my mental health issues had been a major barrier for me. Not only has McPin enabled me to overcome these barriers, but I’ve felt valued in the process – like my experience adds to a greater cause. This got me thinking about how we often discuss why lived experience improves research quality, but what about the how? So, I wanted to reflect on ways I have used my lived experience – often without realising – and how this may have improved the work I have carried out.

Facilitating young people’s involvement: beginning the conversation

My main role at McPin is to facilitate young people’s involvement in mental health research. I’ve found that my lived experience as a young person with mental health issues has come in handy here (although, I am very quickly leaving that age bracket!). In many ways, I act as the ‘go-to’ between researchers and young people; leading and tailoring the involvement activities to ensure they are appropriate, accessible and meaningful. My lived experience has informed my understanding of these things. In some cases, it makes me better placed to know what to ask, how to ask it – and how not to ask it. I can use this inside knowledge to assist any judgement calls for determining what’s triggering, distressing, or simply unappealing. My lived experience can help to steer the involvement process before the conversation has even begun.

As a facilitator: making things comfortable

A central aspect of my role is chairing meetings. In these meetings, researchers share their project ideas and developments with a group of young people who have been specifically recruited to apply their lived experience expertise to inform and shape these works. Plenty of planning goes into those meetings. The way that the meetings are structured is carefully thought through, based on the needs and preferences of the group. In addition to this, I also draw from my own lived experience. While everyone has their own style of facilitating, mine is very much based on my experiences of social anxiety. For example, I do my best to avoid tasks that put people ‘on the spot’ and explore other options of ensuring people have a chance to contribute. At school, I used to dread being called upon, but at the same time, I had no confidence to put my hand up. I wanted to feel heard – but I didn’t want everyone looking at me! While this isn’t the case for everyone, those experiences have framed my facilitating approach:

  • I avoid the ‘creeping death’ approach as much as possible (in other words, don’t work around the room, one by one, asking for input!)
  • I open questions to the whole group (that way, people have the choice to speak up if they want to, rather than it being forced upon them)
  • I encourage small group work (especially for those less confident to speak in front of the whole group)
  • I collect written, as well as verbal, responses (whether it’s post-it notes, the chat feature on zoom, or written notes post-session)

As a facilitator: disclosure

I have found it can be beneficial to share my lived experience with those that I work with. I’ll do this when I feel it’s appropriate to do so and more importantly, if I’m comfortable enough. Disclosure can make you feel vulnerable – especially if you’re currently struggling. I’ve occasionally brought my experiences into the conversation when trying to support the needs of others during these times, or when trying to identify if they would be comfortable with a particular activity. If they aren’t, I can work with them to identify alternative options.

For example, if someone expresses anxiety about travelling to a meeting alone, I might share my own anxieties around this situation. I could say something like, “I understand how stressful that can be! I actually really struggle with travelling to new places by myself, too. I get so anxious! Something that helps me is when a colleague meets me at the station, or halfway there. How does that feel for you? Is there anything else we could try?”

I’ve also mentioned my experiences during meeting introductions, or simply during a relevant conversation in the meeting. Often I do this with the hope that it helps people to feel more confident when sharing their own experiences in the session. It can lead to a major shift in the room: one full of trust, acceptance and empowerment. I’ve really valued the moments where, not only am I chairing, but I’m also able to join the conversation from a lived experience point of view. While I’m not acting as a representative for the voices in the room, I’m able to relate to points being made, enabling me to steer the conversation in a unique way.

I’ve listed a few ways in which I have found my lived experience to be helpful. It goes without saying that experiences differ. My own lived experience does not, by default, mean that I know best. At McPin, we use techniques that have not only been shaped by expertise from lived experience of mental health issues, but by other forms of expertise too. Everyone has expertise to bring. Reflecting on how I’ve used my lived experience has shown me just how useful these insights have been in shaping the work that I’ve done at McPin over the past three years. But this is just the start of my journey. I think it is important to try and continually improve how we do things – but most of all, to take care along the way.

Rachel Temple is a Public Involvement in Research Manager at McPin