ArticleSSM. Qualitative research in health2022
Support amid uncertainty: Long COVID illness experiences and the role of online communities.
Article in SSM. Qualitative research in health, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 48 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
48 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Psychosocial Aspects of the Lived Experience of Long COVID: A Systematic Review and Thematic Synthesis of Qualitative Studies.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Towards evidence-based and inclusive models of peer support for long covid: A hermeneutic systematic review.Social science & medicine (1982) · 2023Pooled it
- What do we know about medical invalidation and related concepts? - A scoping review and thematic analysis about the definitions, measurements, causes, consequences and potential solutions for medical invalidation.BMC health services research · 2026Article
- Young People Navigating the Looping Effects of Long Covid: Exhausting Agency and the 'Ongoing After' of Pandemic.Sociology of health & illness · 2026Article
- "That's not my silo": Navigating fragmented long COVID care in the mid-Atlantic United States.SSM. Qualitative research in health · 2026Article
- The next phase in Long COVID research: addressing the ethical challenges in trials of disease-modifying treatments.EClinicalMedicine · 2026Review
- Vital yet Fragile: Informal Networks of Support Among Young People Navigating Long Covid.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Prevalence and Factors Associated With Acute Stress Disorder Among Adults Ever Infected With COVID-19 During the Ending Phase of the Pandemic in 7 Chinese Cities: Cross-Sectional Study.JMIR public health and surveillance · 2026Article
- Long COVID symptoms and loneliness: findings from the World Trade Center Health Registry.BMC public health · 2025Article
- Illness Experiences of Veterans Reporting Long-Term Symptoms or Health Challenges from COVID-19: Results from the VA COVID-19 Observational Research Collaboratory.Journal of general internal medicine · 2025Article
- Digital Long Covid Communities-Shaping Diagnoses, Treatment Strategies and Modes of Expertise.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Sensing Sociality: Disruptions of Social Life When Living With Chemosensory Dysfunctions After COVID-19.Qualitative health research · 2025Article
- Living With Long COVID: Everyday Experiences, Health Information Barriers and Patients' Quality of Life.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Utilizing Google Trends data to enhance forecasts and monitor long COVID prevalence.Communications medicine · 2025Article
- 'We Don't Have to Prove to People How We're Feeling': Understanding the Role of Peer Support Groups in Countering Epistemic Injustices in Long COVID at a US Centre.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- A mixed studies systematic review on the health and wellbeing effects, and underlying mechanisms, of online support groups for chronic conditions.Communications psychology · 2025Article
- Episodic disability framework in the context of Long COVID: Findings from a community-engaged international qualitative study.PloS one · 2025Article
- Co-creating a social science research agenda for Long Covid.Frontiers in public health · 2025Article
- Adapted Physical Activity Protocol Improves Health-Related Quality of Life and Psychological Outcomes in Long COVID: A Prospective Longitudinal Study.Journal of multidisciplinary healthcare · 2025Article
- Personality and neuropsychiatric symptoms in individuals diagnosed with long COVID.BMC infectious diseases · 2024Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Long COVID is characterized by persistent and debilitating long-term symptoms from COVID-19. Many persons with Long COVID began gathering in online communities during the early phases of the pandemic to share their illness experiences. This qualitative interview study explored the subjective experiences of 20 persons with Long COVID recruited from five online communities. Their understandings of illness and associated implications for social relationships with family and friends, healthcare professionals, and online community members were explored. Three themes were identified from our analysis, including (1) complex and unpredictable illness experienced amid an evolving understanding of the pandemic; (2) frustration, dismissal, and gaslighting in healthcare interactions; and (3) validation and support from online communities. These findings highlight the significant uncertainty that persons with Long COVID navigated, the features of their often dismaying healthcare experiences, and the ways in which online communities aided them in understanding their illness.
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