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Informational Practices and Aspirations of Long COVID Patients

Dr. Jonathan Sobel and his team at the Institute of Global Health, University of Geneva, Switzerland, are conducting a mixed-methods study to explore the informational practices and digital engagement of people living with Long COVID (PWLC). With an estimated 36 million individuals in Europe affected, understanding their needs and challenges is crucial.

The project, supported by Sonar-Global, involves collaboration with the Amsterdam Institute for Global Health & Development and the Department of Anthropology, University of Amsterdam. The study aims to document the sources of information, symptom management, and overall wellbeing of PWLC, assess the digital infrastructure available for Long COVID support, and gain insights into their motivations and care networks.

Using literature analysis, surveys, and semi-structured qualitative interviews with participants from Switzerland, Austria, and the Netherlands, the team will gather comprehensive data. The study also includes reviewing open-access information from digital tracking tools and conducting a literature review.

ISIDORe’s support has been vital in providing the necessary resources and expertise. The research is expected to inform the design and implementation of a Long COVID platform across several countries, offering insights into optimizing digital platforms to support the health and wellbeing of PWLC effectively.

By exploring the informational practices and aspirations of PWLC, this study aims to contribute significantly to understanding Long COVID and its impact on individuals’ lives. The findings will be crucial for developing digital tools and platforms that meet the needs of those living with this condition, ultimately enhancing their quality of life and healthcare outcomes.