Beyond Covid? Using Patient Knowledge to Improve the Care and Management of Long Covid Sufferers

Research Project, 2023 – 2026

This social science study identifies how individuals suffering from Long Covid in Sweden develop knowledge about their condition through their own and other sufferers´ experiences about the condition. As the first Swedish study of its kind, it responds to a need for research that collects and makes use of the experiences and knowledge of sufferers so that their care and management can be improved.
This need has been identified from the observation that Long Covid was initially made visible by sufferers through their sharing and mobilising of experiences and knowledge online whereas the healthcare system simultanously struggles with diagnostics and treatment. To date there might be as many as 150 000 Long Covid sufferers in Sweden. To utilise the accumulated knowledge among sufferers this study not only aims to identify knowledge about sufferers but also from them.  We focus on three identified arenas of sufferers’ knowledge production and dissemination: among individual sufferers, in online support groups and at the Swedish Covid Association. Through its qualitative design the study examines in-depth interviews with individual sufferers, participants in online support groups and board members of the Swedish Covid Association; observations of the association’s meetings and events; and analyses its opinion pieces and reports, as well as postings in online groups. Building on the findings from the study, we arrange dialogue workshops with representatives from sufferers and professionals in effort to find ways of improving the care and management of Long Covid sufferers. As such, the study contributes with knowledge emanating from sufferers of Long Covid with the purpose of reducing the uncertainties surrounding the care and management of Long Covid. Through its focus on both sufferers´ individual and collective knowledge processes, the project also contributes to previous research on patient participation and collective organizing.