Engaging with arts-based participatory methods and narratives of illness (Long Covid)

This paper explores arts-based participatory research and co-creation between researchers and members of patient-led organisations in the context of Long Covid in the UK and Switzerland. The study investigates how people living with Long Covid experience and communicate their illness through arts-based visual methods, specifically body mapping. Patients often have difficulty describing their symptoms and the overall impact of the illness in clinical and social contexts, and existing research has yet to fully explore the potential of participatory visual methods to address this gap. Drawing on workshops conducted in both countries in collaboration with Long Covid Support (UK) and Long Covid Switzerland, our preliminary findings indicate that (i) body mapping can offer novel insights into patients’ experiences of Long Covid, including their access to healthcare, economic situation, and symptoms; (ii) the method holds potential as a communication tool for patients to communicate their experiences to practitioners, friends, and family members; and (iii) body mapping may be adapted to offer peer support as part of Long Covid advocacy. The paper reflects on the methodological and ethical dimensions of arts-based participatory research with chronically ill people, and on the possibilities of body mapping as a method of citizen science to meaningfully shape health research agendas.