We congratulated ourselves when we came up with the name ‘LISTEN’ for our two-year project, funded by the UK’s National Institute for Health Research (NIHR), to codesign and evaluate personalised support for people living with Long Covid. But we didn’t fully anticipate how much the act of listening would enrich our understanding of the condition, described by one of our participants as a ‘spiral of highs and lows’.
The principles of codesign
Codesign is central to the Listen project and is an increasingly common, effective approach to healthcare research. This method relies on a core set of principles – lived experience, collaboration, capability, and creativity – to succeed in the delivery of experience-based solutions via community-academic partnerships. All while being mindful to avoid what Moll et al (2020) identify as ‘tokenistic engagement of vulnerable populations’. The Listen project acknowledges the strength it takes to share a personal story with others; we do not take this for granted. Especially when people tell us it ‘takes all their energy just to get through the day’.
The Listen project is using an accelerated form of Experienced-Based Co-design (EBCD) which is informed by narrative-based approaches to change, incorporating cycles of reflection and action. EBCD applies design-thinking to improve healthcare, driven by the priorities and needs of those that use and work in that service (1).
The process
Codesign groups of people with Long Covid and rehabilitation practitioners (many of whom also live with Long Covid) will shape the Listen intervention: a book, digital resource and 1:1 support by community rehabilitation teams. The Listen intervention will then be evaluated in a large clinical trial across England and Wales measuring its impact on the everyday activities, emotional wellbeing, and social participation of people with Long Covid. A key aspect of codesign is equitable collaboration which is why staff and people living with Long Covid will first meet separately but will ultimately decide the priorities and key components of the intervention together.
Challenges and observations
While there are structural boundaries set within the limited timeframe of our clinical trial, a key challenge of the codesign stage is that at first, we don’t know what the intervention will look like. This can cause problems from the start. By referring to the intervention as ‘self-management support’, we met with immediate opposition from people with Long Covid. Many felt the word ‘self-management’ reflected negatively on their Long Covid experience of trying to gain help, sounding more like a throwaway, do-it-yourself approach rather than a supportive resource as intended. Participants also wanted language that steers away from the idea of recovery (a linear process) and instead focuses on adjustments to navigate the twists and turns of life with Long Covid. We too were aware as researchers of the ambiguous, multifaceted and contentious nature of the term, readily adopted within the healthcare sector. As a result of these discussions, we are exploring alternative language which may be used in a way that is less off-putting and better reflects the realities of those living with Long Covid.
During the codesign groups, we saw how sharing experiences with one another allowed individuals to connect. Most people were still trying to make sense of the events which led them to developing Long Covid. But through storytelling, they found relief in discovering that they were not alone. It was notable too how many participants felt a sense of shame that they had not recovered in the same way as their friends or colleagues. One participant described feeling like they were battling on two fronts: tackling the day-to-day struggles of living with Long Covid while trying to be taken seriously by healthcare professionals and their peers.
Next steps
As the Listen project nears the end of the codesign stage and the clinical trial begins, we are committed to maintaining focus on the stories we hear as well as the data we find. It’s the individuals themselves that remain at the core of the Listen intervention. Each of their experiences will inform and expand our knowledge throughout this process to create a personalised Long Covid support system that works.
1. Bate P, Robert G. Bringing User Experience to Healthcare Improvement: The Concepts, Methods and Practices of Experience-based Design. Radcliffe Publishing; 2007. p.221
Dr Fiona Jones is a Professor of Rehabilitation Research at St George's University of London and Kingston University, and the founder of 'Bridges Self-Management', a social enterprise which carries out research, codesign projects and training for healthcare teams in personalised self-management support. Fiona co-leads the Listen project with Professor Monica Busse from Cardiff University.
Thanks to Fiona for contributing this article to covid:aid. You can hear more about her work with the Listen project on this episode of our Covid Matters podcast which is also embedded below.
You can follow the Listen project on twitter @theLISTENproj or contact f.jones@sgul.kingston.ac.uk
