Writing for the Fuse Blog, Emma Adams, Fuse/NIHR SPHR Pre-doctoral Fellow, and Experts by Experience from Fulfilling Lives Newcastle Gateshead & #HealthNow Newcastle, reflect on their experience co-producing the analysis for her study.
COVID-19, has forced all researchers to re-think engagement and how we work with people with lived experience. I like many, have been navigating how best to do this within my study that aims to explore and understand access to community-based mental health and substance use support in Newcastle and Gateshead for those experiencing homelessness during the pandemic.
Since March 2020 I have been collaborating with five people with personal experience of homelessness, mental health, and/or substance use to co-produce the analysis for this study. During that time we have discovered a very helpful approach (albeit with an imposing name) – Interpretative Phenomenological Analysis.
*Photo taken by Jeff Parker (one of the individuals with lived experience involved in our co-production) of the masks he made for each of us at our first face-to-face meeting.
Here comes the science…
This approach was very reflective and recognised that we were trying to understand how our participants made sense of what had happened to them.
We wrote exploratory comments to reflect on the word-for-word text from interviews and then used both to develop themes. This approach lent itself really well to our analysis, as we found it was less rigid than other coding-based approaches (such as thematic analysis) and had more opportunity for reflection.
The saying ‘no two things are alike’ describes how we ran our co-production meetings given COVID-19 restrictions. We sent out printed packages with anonymised transcripts for comments, held Zoom meetings to discuss our comments and thoughts, hosted in-person meetings with sticky notes and marker pens to develop themes and unpick key ideas, and used physical and virtual highlighters to identify our top quotes. Accompanied with a healthy amount of coffee, baked treats, and fruit, we set our sights on trying to understand our data.
We broke down each analysis into three sessions, with the first session focussed on reviewing the transcripts and writing comments, the second focussed on developing some initial themes, and the third focussed on identifying and refining all the themes and key quotes.
Friendship, findings and reflections
We are now starting to share initial findings and determine creative ways to present the information. Having built a strong friendship, we reflected on how much we enjoyed the collaborative co-production experience, despite the circumstances created by COVID. We also reflected that not all co-production is positive. Here we share a few thoughts from the experience.
Why did you become involved in the study?
Everyone in our group felt motivated by the opportunity to have their voices heard and make a difference.
“Because I am interested in how the pandemic has affected people and am a member of the Experts by Experience and would like to change things for the better” – Joanne
“I wanted to do a different sort of user health research having done some last year in Newcastle for Crisis and Groundswell. Getting involved in analysing the anonymised data was a fantastic opportunity for myself” – Tony
What did you enjoy and learn?
Everyone enjoyed being involved as the research continued to grow and their continuous involvement meant we could develop friendships.
“Actually being involved from start to finish, Emma baking” – Jeff
“Analysing some of the data and the group! I feel new friendships have been made” – Fiona
Although different learnings were shared, it was clear that everyone enjoyed working in a team to try out new things and have a ‘behind the scenes’ peak into doing research.
“One day I would really like to do more of this work in a permanent position as part of my continuing personal development. So it was very nice to get the opportunity to find out what this sort of work entailed and whether or not I would enjoy doing it too” – Tony
“Co-production can really work if it’s formulated with an organic and lived experience perspective at the heart of the study, the information gathered was not lost in translation and the language from participants’ interview was not tampered with” – Des
What did you find challenging and wish researchers knew?
Forcing ourselves to think about some of the things we all found challenging, we realised it is important to touch base with people involved in co-production to understand what they are struggling with and how they can be better supported.
“Biggest problem I have is getting to a venue, I have anxiety issues travelling by bus” – Jeff
“Emma would send me a gentle reminder a few days before work was due and it would spur me to either start, or finish off and get the work sent in. This really helped me” – Fiona
What would you say to a friend about getting involved in research?
Across the board, everyone said they want to continue to be involved in research projects and would encourage friends to do so.
“At first it might fly over the top of your head, but give it time and you will learn things you never knew you were capable of” – Joanne
“Go for it, maybe you can help affect change that will help others who have been through what you have. Plus, you’ll make some new friends and may enjoy yourself too” – Jeff
What are you most excited about?
When asked about what they were most looking forward to and anything else they wanted to share, responses ranged from gaining specific experience, to celebrating successes.
“It made a nice change to be more involved and now I’m doing more research with Crisis its helped me to help them shape how it can be done and how sense making is carried out” – Jeff
“The biggest rush of the project was to receive an email from the Lancet after we submitted a piece on the work. If it gets published, I’m throwing a party” – Fiona
“Emma has kept us updated throughout and involvement moving forward looks bright … and on the back of this there is confidence to come back to the university and vice versa in other research projects” – Des
Lessons learned from a researcher perspective
The depth and richness gained through co-producing my analysis is something I could have never done on my own. I learned that it is okay to admit when you are feeling a bit lost about the best approach, as that allows for an open dialogue to determine what can be done to make things better. Through our co-production, I realised how to make findings more accessible and engaging for everyone. The pandemic has meant that we have all missed out on in-person contact. Listening to our group I was shocked and humbled by how much the little touches mattered; well-timed cookies or an invite for a coffee chat can make a big difference. These small touches allowed me to develop relationships with everyone and have frank and honest conversations. From this experience, I have learned that you do not need to wait until you have findings to make a difference, rather you have a chance through co-production to make lasting impacts across the span of your research project.
Emma’s study ‘Exploring and understanding access to community-based mental health and addiction services in Newcastle and Gateshead‘ is NIHR School for Public Health Research (SPHR) ResNet funded.
This project is funded by/ supported by the National Institute for Health Research (NIHR) School for Public Health Research (Grant Reference Number PD-SPH-2015-10025). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.