“I'm staying as informed as I can and trying to make nutritional & lifestyle amendments”: COVID long-haulers’ strategies for managing uncertainty and assessing the trustworthiness of COVID-19-related information

COVID long-haulers face a great deal of uncertainty and information-related challenges that can impede their ability to cope with and manage this serious chronic health condition. We conducted an explanatory sequential mixed-methods study involving an online survey ( n = 135) and follow-up interviews ( n = 29) to investigate the information-related experiences of COVID long-haulers. In this paper, we share the strategies they used to navigate uncertainty and to assess the trustworthiness of COVID-19-related information. We found that participants experienced a great deal of uncertainty, often relating to the fear, anxiety, and depression they felt as they were unsure whether they would ever recover. Nearly all participants shared strategies they used to deal with uncertainty, which included seeking, sharing, and/or avoiding information; using information to manage one's health; taking control of what they can and/or giving up control over things they cannot; and accepting their situation. With specific regard to information management, participants shared several strategies they used to assess the trustworthiness of COVID-19-related information. These included looking into the source and/or authors of the information, making sure that the authors provided evidence and citations for their claims, investigating why the information was being shared, making sure that the source/authors acknowledged remaining gaps or uncertainty in our knowledge, and checking multiple sources to cross-verify the information they had found. Our findings have important implications for the design of optimal approaches that can help to support and facilitate COVID long-haulers’ uncertainty management and information assessment efforts. • COVID long-haulers experience tremendous uncertainty & information-related challenges. • Our mixed-methods study involved a survey ( n = 135) and follow-up interviews ( n = 29). • Participants shared strategies for managing uncertainty, such as seeking information. • They also described their methods for assessing the trustworthiness of information. • Findings suggest ways to support long-haulers in their uncertainty management efforts.