ArticlePatient education and counseling2022
Using crowdsourced medicine to manage uncertainty on Reddit: The case of COVID-19 long-haulers.
Article in Patient education and counseling, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed, 35 citations in OpenAlex.
- Managing uncertainty in antibiotic decisions: factors influencing antibiotic use among chinese parents of children in a multi-source information environment.International journal of qualitative studies on health and well-being · 2026Article
- Contested illness and communication: Positioning long Covid in online discussion forums.Journal of health psychology · 2026Article
- Sensing Sociality: Disruptions of Social Life When Living With Chemosensory Dysfunctions After COVID-19.Qualitative health research · 2025Article
- "The dream is that there's one place you go": a qualitative study of women's experiences seeking care from Long COVID clinics in the USA.BMC medicine · 2024Article
- Understanding the Long Haulers of COVID-19: Mixed Methods Analysis of YouTube Content.JMIR AI · 2024Article
- The Role of Social Media in the Experiences of COVID-19 Among Long-Hauler Women: Qualitative Study.JMIR human factors · 2024Article
- Too much focus on your health might be bad for your health: Reddit user's communication style predicts their Long COVID likelihood.PloS one · 2024Article
- Exploring psychological variables in users' health information-seeking behavior: A systematic review.Journal of education and health promotion · 2024Review
- Corona With Lyme: A Long COVID Case Study.Cureus · 2023Article
- Comparing the Discussion of Telehealth in Two Social Media Platforms: Social Listening Analysis.Telemedicine reports · 2023Article
- Support amid uncertainty: Long COVID illness experiences and the role of online communities.SSM. Qualitative research in health · 2022Article
- Long Haul COVID-19 Videos on YouTube: Implications for Health Communication.Journal of community health · 2022Article
- State Health Department Communication about Long COVID in the United States on Facebook: Risks, Prevention, and Support.International journal of environmental research and public health · 2022Article
- Impact of COVID-19 Infection and Persistent Lingering Symptoms on Patient Reported Indicators of Nutritional Risk and Malnutrition.Nutrients · 2022Article
- Two years with COVID-19: New - and old - challenges for health communication research.Patient education and counseling · 2022Article
Corrections and comments
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Authors and funding
5 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveCauses of and treatments for long-COVID syndrome remain unknown. Drawing on uncertainty management theory (UMT), this study elucidates the communicative nature of crowdsourced medicine as a means by which COVID "long-haulers" respond to their poorly understood illness.
methods31,892 posts on the long-haulers subreddit (r/covidlonghaulers) were analyzed, starting with its creation date, July 24th, 2020, until January 7, 2021. The Meaning Extraction Method was used to identify clusters of words that mathematically group together across the text observations.
resultsAnalyses yielded 16 distinct factors of words, which we thematized based on their composition, the data, and UMT. The 16 themes encompassed symptoms (e.g., pain, respiratory, sensory), diagnostic concerns (testing, diagnosis), broad health concerns (immunity, physical activity, diet), chronicity, support, identity, and anxiety.
conclusionFindings provide a succinct, yet robust set of themes reflecting the information-seeking (i.e., "This is happening to me") and support-seeking functions of long-haulers' talk (i.e., "Is this happening to you?"). Findings have implications for collective uncertainty management, online crowdsourcing, and patient advocacy. PRACTICE IMPLICATIONS: We recommend that health care providers employ sensitivity when addressing the anxiety that long-haulers are experiencing while also validating that their physical symptoms are real. Online communities help long-haulers manage their uncertainty.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.