In May 2019, we were awarded a Research Enrichment Grant by the Wellcome Trust in collaboration with a wider Institute of Neurology research team, the Fatigue group. Dr Annapoorna (Anna) Kuppuswamy and her research team are interested in the pathological and irreversible fatigue, which, many stroke survivors experience on a daily basis and for which no treatment is known to be effective. The project aims to use participatory arts approaches to explore experiences and offer a ‘voice’ for stroke survivors who experience pathological fatigue.
Through this engagement project, stroke survivors, researchers and an artist will collaborate on a multi-sensory, immersive installation that will be exhibited for one week in central London. The installation will relay something about the experience of fatigue that is often hard to put into words. It is hoped that this will give this invisible condition visibility and validate it as a significant inhibitor to daily life.
The project will be driven by a small group of stroke survivors who experience, or have experienced fatigue. Through a series of discussion sessions, drawing on their own life experiences, this group will work with an artist using creative media to communicate their experiences. The artist will then bring these ideas to life (in continued collaboration with the contributors and researchers), to create an immersive installation and complementary online space. These two platforms will aim to generate an awareness of the depth, extent and multi-sensory nature of fatigue. The live exhibition will also include interactive features, which will enable the team to capture audiences’ experiences of fatigue, and a panel discussion, which will initiate debate about the current state and potential future directions of fatigue research.
The lead researcher behind this project is Dr Annapoorna Kuppuswamy, Principal Investigator for the Fatigue Group, at UCL. Her research is to understand the underlying mechanisms of pathological fatigue (fatigue linked to an underlying condition). Fatigue is a significant problem for patients of a number of chronic diseases, including multiple sclerosis, Parkinson’s Disease, cancer. However, this is often overlooked compared to other symptoms, and there are currently no effective treatments. The fundamental aim of Dr Kuppuswamy’s research is to identify behavioural and physiological markers of fatigue, which, when manipulated, might alleviate the symptoms of the condition.
Dr Anna Kuppuswamy, Principle Investigator:
“I am absolutely thrilled to include using participatory methods to inform my research. This is especially critical when trying to understand problems such as fatigue which is a poorly defined experiential problem. Unless we have a solid definition covering all aspects of the experience we will fail to understand it and arts will provide us with a rich method through which to define the problem.”
Siân Aggett, Public Engagement Coordinator:
“This project is incredibly exciting to me as it is a genuine commitment from a scientific researcher to use participatory arts and public engagement to inform her scientific thinking”