ArticleDigital health
Long Covid: Online patient narratives, public health communication and vaccine hesitancy.
Article in Digital health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers.
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Who cites it
27 citing papers in PubMed, 54 citations in OpenAlex.
- Forecasting seasonal allergic rhinitis through integrated analysis of social media and online drug sales data.The World Allergy Organization journal · 2026Article
- Contested illness and communication: Positioning long Covid in online discussion forums.Journal of health psychology · 2026Article
- Mind the gap: examining policy and social media discourse on Long COVID in children and young people in the UK.BMC public health · 2025Article
- The Long or the Post of It? Temporality, Suffering, and Uncertainty in Narratives Following COVID-19.The Journal of medical humanities · 2025Article
- Development of an expectation management intervention for patients with Long COVID: A focus group study with affected patients.PloS one · 2025Article
- Best practices for the collection and analysis of patient experience data from social media for patient-focused drug development.Frontiers in medicine · 2025Review
- COVID-19 vaccination perspectives among patients with Long COVID: A qualitative study.Human vaccines & immunotherapeutics · 2024Article
- Long COVID Discourse in Canada, the United States, and Europe: Topic Modeling and Sentiment Analysis of Twitter Data.Journal of medical Internet research · 2024Article
- Tracking the Spread of Pollen on Social Media Using Pollen-Related Messages From Twitter: Retrospective Analysis.Journal of medical Internet research · 2024Article
- The Role of Social Media in the Experiences of COVID-19 Among Long-Hauler Women: Qualitative Study.JMIR human factors · 2024Article
- Twitter Analysis of Health Care Workers' Sentiment and Discourse Regarding Post-COVID-19 Condition in Children and Young People: Mixed Methods Study.Journal of medical Internet research · 2024Article
- Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators.Frontiers in medicine · 2024Article
- A critical analysis of UK media characterisations of Long Covid in children and young people.PLOS global public health · 2024Article
- Long COVID quality of life and healthcare experiences in the UK: a mixed method online survey.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Article
- "I Am Not the Same as I Was Before": A Qualitative Analysis of COVID-19 Survivors.International journal of behavioral medicine · 2023Article
- Vaccine perceptions among Black adults with long COVID.Ethnicity & health · 2023Article
- Online multimodal rehabilitation programme to improve symptoms and quality of life for adults diagnosed with long COVID-19: a Randomised Clinical Trial protocol.Frontiers in public health · 2023Article
- "Healing Can Be a Very Jagged Line": Reflections on Life as a COVID-19 Long Hauler.Journal of patient-centered research and reviews · 2023Article
- Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment.SSM. Qualitative research in health · 2022Article
Corrections and comments
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Authors and funding
2 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionThis study combines quantitative and qualitative analyses of social media data collected through three key stages of the pandemic, to highlight the following: 'First wave' (March to May, 2020): negative consequences arising from a disconnect between official health communications, and unofficial Long Covid sufferers' narratives online.'Second wave' (October 2020 to January 2021): closing the 'gap' between official health communications and unofficial patient narratives, leading to a better integration between patient voice, research and services.'Vaccination phase' (January 2021, early stages of the vaccination programme in the UK): continuing and new emerging concerns.
methodsWe adopted a mixed methods approach involving quantitative and qualitative analyses of 1.38 million posts mentioning long-term symptoms of Covid-19, gathered across social media and news platforms between 1 January 2020 and 1 January 2021, on Twitter, Facebook, Blogs, and Forums. Our inductive thematic analysis was informed by our discourse analysis of words, and sentiment analysis of hashtags and emojis.
resultsResults indicate that the negative impacts arise mostly from conflicting definitions of Covid-19 and fears around the Covid-19 vaccine for Long Covid sufferers. Key areas of concern are: time/duration; symptoms/testing; emotional impact; lack of support and resources.
conclusionsWhilst Covid-19 is a global issue, specific sociocultural, political and economic contexts mean patients experience Long Covid at a localised level, needing appropriate localised responses. This can only happen if we build a knowledge base that begins with the patient, ultimately informing treatment and rehabilitation strategies for Long Covid.
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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.