ArticleSocial science & medicine (1982)2021
Long Covid - The illness narratives.
Article in Social science & medicine (1982), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 66 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
66 citing papers in PubMed, 3 syntheses or guidelines pooled it, 171 citations in OpenAlex.
- 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
- Post-viral mental health sequelae in infected persons associated with COVID-19 and previous epidemics and pandemics: Systematic review and meta-analysis of prevalence estimates.Journal of infection and public health · 2022Pooled it
- Experiences of people with long COVID: Symptoms, support strategies and the Long COVID Optimal Health Programme (LC-OHP).Health expectations : an international journal of public participation in health care and health policy · 2024Trial
- Narratives of recovery from persistent fatigue: a stepwise learning process.Scandinavian journal of primary health care · 2026Article
- The Illness Narratives of Children and Young People With Spinal Muscular Atrophy: A Scoping Review.Journal of advanced nursing · 2026Article
- Article
- Contested illness and communication: Positioning long Covid in online discussion forums.Journal of health psychology · 2026Article
- A mixed-methods study comparing clinical and patient-reported perspectives on long COVID: insights from electronic health records and narrative journal entries.BMC infectious diseases · 2026Observational
- 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
- The lived experience of long COVID: A thematic analysis of an in-depth interview study.PLOS mental health · 2026Article
- Trust in Transition: Exploring Changing Trust in Vaccination in the Context of Long Covid in the United Kingdom.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Living With Persistent Respiratory Symptoms of Long COVID: Qualitative Study Among Brazilian Adults 12 Months After Acute Infection.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Why do children with cancer withdraw from social interactions? A qualitative study using the COM-B model.Journal of cancer survivorship : research and practice · 2025Article
- From Stagnation to Strategy: Challenges in Advancing Long COVID Research.Journal of evaluation in clinical practice · 2025Review
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- Sensing Sociality: Disruptions of Social Life When Living With Chemosensory Dysfunctions After COVID-19.Qualitative health research · 2025Article
- Digital activism in Kenya: moving from the digital center to the digital periphery of Long Covid experience.Globalization and health · 2025Article
- The Long or the Post of It? Temporality, Suffering, and Uncertainty in Narratives Following COVID-19.The Journal of medical humanities · 2025Article
- Complex chronic adverse events following immunization: a systemic critique and reform proposal for vaccine pharmacovigilance.Therapeutic advances in drug safety · 2025Article
6 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
Callard and Perego depict long Covid as the first illness to be defined by patients who came together on social media. Responding to their call to address why patients were so effective in making long Covid visible and igniting action to improve its care, we use narrative inquiry - a field of research that investigates the place and power of stories and storytelling. We analyse a large dataset of narrative interviews and focus groups with 114 people with long Covid (45 of whom were healthcare professionals) from the United Kingdom, drawing on socio-narratology (Frank), therapeutic emplotment (Mattingly) and polyphonia (Bakhtin). We describe how storytelling devices including chronology, metaphor, characterisation, suspense and imagination were used to create persuasive accounts of a strange and frightening new condition that was beset with setbacks and overlooked or dismissed by health professionals. The most unique feature of long Covid narratives (in most but not all cases) was the absence, for various pandemic-related reasons, of a professional witness to them. Instead of sharing their narratives in therapeutic dialogue with their own clinician, people struggled with a fragmented inner monologue before finding an empathetic audience and other resonant narratives in the online community. Individually, the stories seemed to make little sense. Collectively, they provided a rich description of the diverse manifestations of a grave new illness, a shared account of rejection by the healthcare system, and a powerful call for action to fix the broken story. Evolving from individual narrative postings to collective narrative drama, long Covid communities challenged the prevailing model of Covid-19 as a short-lived respiratory illness which invariably delivers a classic triad of symptoms; undertook and published peer-reviewed research to substantiate its diverse and protracted manifestations; and gained positions as experts by experience on guideline development groups and policy taskforces.
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What OpenQuestion holds
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.