LISTEN
Focus: To co-design and evaluate a personalised self-management support intervention for people living with long Covid.
Timeline: 2021 – 2024
Funder: NIHR (£1,081,962)
Collaborators: Cardiff University, City St George’s University of London, Bridges
In the UK, at least 1.9 million people are estimated to meet the criteria for long Covid. Of these, 1.3 million have symptoms lasting for more than a year and 762,000 people live with symptoms for more than two years. The potential legacy of long Covid is serious, with a high incidence of individuals not returning to work by six months and continuing to experience limitations in their day-to-day activities, which could result in macroeconomic costs of £1.5 billion each year (Busse et al, 2025).
LISTEN co-designed and evaluated a personalised self-management support intervention for people with long Covid. The intervention integrated evidence from Bridges Self-Management and the collective and learnt experiences of people with long Covid.
People received up to six 1:1 sessions and a co-designed “Navigating life with long Covid” handbook. The study recruited 554 people.
Those receiving the LISTEN intervention had improved emotional wellbeing, confidence to manage symptoms, quality of life and less impact of fatigue. There were also reduced societal costs (people were able to go back to work and incur less care costs) in the LISTEN intervention group. A specially designed training programme for healthcare practitioners, which meant the intervention was delivered to a high quality – and incorporated all the LISTEN core principles, language and strategies.
This was the first project of its kind in long Covid, and people felt validated, supported and more confident to manage their everyday life.
What did we learn from the co-design process?
One of the strengths of this process was feeling as if I could contribute and learn from others in the same position as me. At the time I knew no one else with long Covid and I felt as if my life was getting smaller and purpose diminished.Ian, co-design participant living with long Covid
Just how knowledgeable patients are, and their expertise should be better centred in the thinking of medical professionals. Instead of being talked at, listen to us, and question what we have learned. My fellow patients have so much hard-fought experience and in what has been a time of darkness for so many of us, involvement in research has been a source of hope”.Ian, co-design participant living with long Covid
The story of LISTEN
Click below to see the full academic overview, the Knowledge Exchange Webinars delivered by the research team, and the publications of this trial in The BMJ, BMJ Medicine, Health Expectations and BMC Public Health.
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