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

Research project
Active research
Project size
5 910 000
Project period
2022 - 2026
Project owner
Department of Sociology and Work Science

Forte, Swedish Research Council for Health, Working Life and Welfare

Short description

This qualitative social science study addresses how individuals suffering from Long Covid in Sweden develop knowledge about their condition through their own and other sufferers' experiences about the condition. The study responds to a need for research that collects and makes use of the experiences and knowledge of sufferers in order to make possible improvements in their care and management. This research 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 simultaneously have struggled with diagnostics and treatment. To utilise the accumulated knowledge among sufferers this study not only aims to identify knowledge about sufferers but also from them.

The following questions are guiding the research project:

  1. What knowledge about Long Covid do sufferers generate from their embodied and lived experience, and how do they use it?
  2. What knowledge do sufferers accumulate about Long Covid through the sharing of experiences with other affected, and how do they do so?
  3. What knowledge do Long Covid sufferers mobilise to improve the care and management of Long Covid, and how do they do so?
  4. What are the implications of 1-3 for the improvement of Long Covid care and management?

To investigate these research questions the project will combine research perspectives from medical sociology and from the field of science and technology studies, which both have taken a longstanding interest in how patients as individuals as well as a collective produce, accumulate and mobilise knowledge about their lived conditions.

The study contributes with knowledge emanating from those affected by 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 want to make contributions to the existing body of research on patient participation and organizing.


Jesper Petersson, Project Leader, Department of Sociology and Work Science, University of Gothenburg

Lisa Lindén, Associate Professor, Division of Science, Technology and Society, Chalmers University of Technology

Doris Lydahl, Researcher, Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg