“We Don't Have a Lot of Answers”: An Investigation of COVID Long‐Haulers' Information Needs & Practices

Abstract

ABSTRACTThe information behaviors of people who have COVID‐19 have been well studied, however, there is a gap regarding those who experience long COVID. We conducted an exploratory mixed‐methods study to examine the information needs and practices of these COVID ‘long‐haulers’ with the intention of suggesting new health communication strategies to help people in similar health crises or future pandemics from an information standpoint. Several themes have emerged from our preliminary findings: how participants tend to define long COVID, their long COVID‐related information seeking and their difficulty with finding such information, and their experiences with discrimination and stigma. Throughout data collection, we have experienced issues with suspicious respondents (such as potential bots), though we were able to implement new criteria to determine legitimacy. Data collection and analysis is still ongoing and we expect to report additional findings in the near future.