From research method to community resource: Co-developing a body mapping toolkit for peer support with Long Covid patients

Le résumé fourni par la source

The paper describes the development of a Body Mapping Toolkit for Long Covid Patients, co-created in collaboration with the patient-led organisation Long Covid Support. We discuss how the use of body mapping, a participatory and arts-based research method, can support a more holistic and embodied understanding of Long Covid attentive to the way illness experiences are shaped by patients' social, cultural, and economic contexts. We further demonstrate how, through collaboration with patient organisations, body mapping might be extended beyond this research application to create spaces for peer support within the Long Covid community. Toolkit redevelopment was informed by three online body mapping workshops with a total of 13 participants, two follow-up feedback workshops and a feedback survey, all conducted in 2024. Our findings demonstrate that online body mapping workshops provide a safe space and opportunity to process experiences through creativity and storytelling and an accessible and flexible way for people with particularly challenging symptoms and restrictions to discuss their experiences with others. We also reflect on some of the limitations and challenges we encountered, and how we sought to mitigate these. The article thereby: (i) contributes to current approaches in medical humanities, medical anthropology and health geography concerned with centering patient narratives of illness experience; (ii) illustrates the value co-producing knowledge and resources with patients; and (iii) offers an example of how creative methods can be drawn on as a resource for both research and peer support.

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