Living with diabetes during Covid-19: a public engagement project bringing together diverse lived experiences of type 1 and type 2 diabetes for community reflection
A public engagement project with a difference, led by Jamie Hartmann-Boyce and Liz Morris from the Nuffield Department of Primary Care Health Sciences, combined working with artists and members of the public living with diabetes, to create three pieces of community artwork – and a space to share and reflect on experiences of the pandemic and lockdown. The pieces of artwork is now on display at “Do you feel forgotten? COVID: stories from a segregated society”, the Museum of the History of Science in Oxford.
Here, Liz Morris, Wellcome Trust Clinical Doctoral Research Fellow and DPhil student in the Health Behaviours team, explains more about how the project came about and what they found.
At the height of the Covid-19 pandemic in 2020, like everyone else working in healthcare and healthcare research, I could see the mounting effects on the pandemic on my patients and the people with diabetes who usually took part in my research, and wanted to do what I could to help answer their questions – what did the pandemic mean for them? I joined a team led by Jamie Hartmann-Boyce conducting evidence synthesis research into the challenges arising for people with diabetes, where we worked on rapid systematic reviews and briefings for the World Health Organization exploring the risks of and from Covid-19 in people with diabetes.
During these projects, we were struck by the depth of the responses we received when engaging with members of the public with diabetes in our PPI work, and the extent to which people were keen to share their experiences with us, which was unlike anything we had experienced in our PPI work up to that point.
“During the last few months, I have been made to feel vulnerable because of my medical label; for the first time in my life I have felt old. Even if we ever get to a point where COVID-19 is eradicated, I will still have T1D and will, therefore, likely be deemed “vulnerable” to whatever else may be around the corner.” (PPI contributor, with type 1 diabetes)
It really hit home that the traditional research methods we were using were not capturing the reality of living through the pandemic for this group of people. Building on the depth of feeling we encountered, we wanted to create a project that could bridge the gap between objective research into the impact of the Covid-19 pandemic on PWD, and the reality of their lived experience.
What did we do?
Along with Clare Goyder, and our PPI collaborator Gaynor Allen, Jamie and I applied to the University Public Engagement in Research Seed Fund for a grant to fund a socially-distanced public engagement project. Working with a team of artists, Yejeong & Johannes Mutter, we set out to create a collaborative physical art installation and digital interactive exhibition of artwork, designed to capture individual experiences of living through the pandemic with diabetes.
Using art to engage the public with research can widen the demographics of those participating, enable contributors to express themselves in different ways that are personal to them, and attract wide audiences. [1], [2], [3]. Outside of research, “community art” has been used throughout history to commemorate and represent emotive and significant events, such as the NAMES project Aids Memorial Quilt.
People with any form of diabetes, or connection to diabetes, were invited to submit art or written work in any form for inclusion. This could include drawings and paintings, photos, poems and written reflections, or any medium they wanted to use express themselves. We publicised the project via local PPI dissemination and research channels, as well as diabetes charities, and social media, where growing communities of people living with diabetes were emerging throughout the pandemic.
What did we find?
We received 26 amazing and wide-ranging submissions from people living with diabetes and their carers. These ranged from talented line drawings and paintings of how they perceived their life and themselves during the pandemic, to photographs capturing their daily life and interactions with healthcare, and word clouds or sections of prose capturing their reflections on how life had changed, and what was occupying their daily thoughts. One particularly emotive painting was titled “why can’t the vulnerable just isolate”, with the artist reflecting on their own vulnerability and how this version of public opinion made them feel. We were glad to find we had reached a wide range of ages of people (16-74 years) and engaged with people with a range of different experiences of diabetes (type 1, type 2, and gestational diabetes, as well as people caring for someone with diabetes).
Picture 1: themes of the submitted artworks
We produced two pieces of physical artwork, and a digital exhibition. The first piece of artwork was a collage of everyone’s submissions, printed on layers of breathable fabric to allow people to explore and view the different layers of people’s experiences. The second piece of artwork reflected the artist’s contemplation on “what we are seeing and not seeing in people with diabetes” – here she used specialist paints to depict characters and words representing the experiences people had communicated, with the unique pieces only visible when UV light is shone over them. The digital exhibition forms a kaleidoscope of people’s views and experiences, where you can browse through all the submissions. You can view each of the pieces and find out more about the artist’s interpretation, as well as explore the digital exhibition, at diabetescovid.art.
Picture 2: Collage of the community submissions of experiences of the covid pandemic from people with diabetes, printed on breathable fabric layers
Over 780 people visited the digital exhibition in the first 2 months. Visitors had the option to complete an online survey sharing their thoughts about the project. Their responses to the open-ended question, “how would you describe your experience of or feelings about this artwork in three words or phrases” included: brave, overwhelming, scary, resonating with personal experience, community giving voice, thought provoking, moving, emotional, motivating, insightful, interesting, fascinating. Everyone who answered the question said they had learned things from the artwork.
What did we learn?
The PER seed funding gave us the opportunity to try a different approach to public engagement, and it was a rewarding, moving and engaging experience. It definitely encouraged us to step out of our usual comfort zones and embrace a very open approach to hearing and capturing public opinions and experiences, and to experience collaborating with people from very different disciplines to our research field with a common goal of understanding and reflecting patient experience. This was not without its challenges – finding a common language to communicate between artists, researchers, clinicians, and members of the public so we were all on the same page with what we hoped the project would produce and become was a steep learning curve! The physical restrictions of the pandemic were a challenge too – while we had designed the pieces for display at the local diabetes centre, to allow people from research, clinical practice, and people living with diabetes all to see and engage with them, this wasn’t possible in the timeframes we had hoped due to the ongoing pandemic.
Overall, learning from the challenges we encountered and embracing new approaches to public engagement and dissemination made the project all the more engaging and rewarding – and at a time of disconnection from our usual work roles and teams, this project and hearing the experiences of the people living with diabetes at that time really helped us to feel engaged and reminded us of why the work we do matters.
Our PPI representative, Gaynor Allen, wrote a news piece for the NIHR about her involvement in the project. Working with Gaynor was a particularly rewarding experience for all the researchers involved, and the project felt truly collaborative. Gaynor wrote (excerpts from above blog): “I liked the idea that this project gave people living with or affected by diabetes a voice and a platform on which to share their lived experience. Health research is not just about the clinical, it is also about recognising, empathising with and learning from the experiences of people as demonstrated in this project…. I have been involved in the project through all its phases – from obtaining funding approval, through to post-project evaluation. The process has been one of ongoing electronic consultation and collaborative decision-making of the whole team, made up of healthcare providers, researchers and artists, as well as myself as a person living with diabetes. Throughout, I have been struck by the genuine desire and willingness of the professional team members to learn more from the experiences of patients and I have felt integral to the process and welcomed as a team member. For me, patient involvement in health research is about helping to bring about progress. It is about learning more about one’s own health and well-being and also about giving something back. Above all, it is about hope.”
What next?
We are excited that one of the pieces of physical artwork created during this project has been included in the “Collecting Covid” exhibition at the Museum of the History of Science in Oxford, in a display entitled “Do you feel forgotten? COVID: stories from a segregated society”, and is on display there now. For more information about the exhibition, visit: https://www.hsm.ox.ac.uk/together
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