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The lived experience of long COVID: A thematic analysis of an in-depth interview study
Journal article   Open access   Peer reviewed

The lived experience of long COVID: A thematic analysis of an in-depth interview study

Zoe Sirotiak, Hailey J. Amro and Emily B.K. Thomas
PLOS Mental Health, Vol.3(2), e0000500
02/02/2026
DOI: 10.1371/journal.pmen.0000500
PMID: 41662153
url
https://doi.org/10.1371/journal.pmen.0000500View
Published (Version of record) Open Access

Abstract

Long COVID is associated with significant physical and mental health burden, resulting in substantial quality of life limitations. The lived experience of individuals with long COVID is a vital consideration in evaluating the impact of the condition. Thirty-four adults with self-reported long COVID participated in a semi-structured in-depth interview study. An interview guide assessed physical and mental health symptoms, changes to plans, goals, and beliefs, and social impacts of long COVID. Participants were an average age of 51.6 years (SD = 17.0), and most identified as female (61.8%), white (97.1%), and not Hispanic or Latino/a/e (97.1%). Two coders read each interview while creating a codebook. The coders individually coded each interview transcript with themes emerging from the coded interviews. Each code reached an agreement level of at least 80%, with a Kappa (RK) score range of 0.90 to 0.98 in each interview, indicating adequate interrater reliability. Five themes emerged from the thematic analysis: decreased autonomy, decreased trust, changes in worldview, social impacts, and uncertainty. Individuals with long COVID reported heterogenous experiences, with often significant changes to daily functional abilities and outlook on life. Considering the unique lived experiences of individuals with long COVID will be important in developing a complete understanding of the condition and its implications.

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