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Mixed-methods investigation reveals how long-haulers share and read personal narratives, indicating barriers to support.
Many COVID long‐haulers have faced barriers to obtaining the information and support they need. As a result, they often turn to the stories others with long COVID have shared online and off, frequently sharing their own stories as well. We conducted a mixed‐methods investigation into the information experiences of COVID long‐haulers, seeking to understand the strategies they use to meet their information needs and the barriers they encounter. We surveyed 135 COVID long‐haulers and conducted 29 follow‐up interviews, focusing on the information‐related aspects of their long COVID experience. In this paper, we report findings related to participants' perceptions about the usefulness of reading other people's stories and participants' reasons for sharing (or not sharing) their own stories. Findings reveal that reading and sharing stories of personal experiences related to COVID/long COVID is very prevalent, and people have specific, though varying, reasons for engaging (or not) in these activities.
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Jean et al. (2025) studied this question.
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