ArticleHealth expectations : an international journal of public participation in health care and health policy2022
Creative Long Covid: A qualitative exploration of the experience of Long Covid through the medium of creative narratives.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
15 citing papers in PubMed, 2 syntheses or guidelines pooled it, 21 citations in OpenAlex.
- Exploring the influence of long COVID upon self-identity: a systematic literature review.Archives of public health = Archives belges de sante publique · 2026Pooled 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
- Personalisation at the Core of Success: Process Evaluation of the LISTEN Randomised Controlled Trial Evaluating a Personalised Self-Management Support Intervention for People Living With Long Covid.Health expectations : an international journal of public participation in health care and health policy · 2025Trial
- 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
- Group Poetry and Quilt-Making -Creative Public Involvement Approaches to Contentious Concepts in Frailty Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Towards a Less Ideal Theory About Well-being-The Case of Post COVID Condition.Journal of bioethical inquiry · 2026Article
- Article
- Leveraging Community-Based System Dynamics to Understand Long Covid Disparities in African American Communities: A Model for Health Equity Research.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- The Long or the Post of It? Temporality, Suffering, and Uncertainty in Narratives Following COVID-19.The Journal of medical humanities · 2025Article
- Article
- Disrupted Candidacy: A Longitudinal Examination of the Constrained Healthcare-Access Journeys of National Health Service Workers in Scotland Seeking Supports for Long COVID Illness.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid.BMC 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
- Creative Long Covid: A qualitative exploration of the experience of Long Covid through the medium of creative narratives.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Brain Fog and Fatigue following COVID-19 Infection: An Exploratory Study of Patient Experiences of Long COVID.International journal of environmental research and public health · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundHealthcare is witnessing a new disease with the emergence of Long Covid; a condition which can result in myriad symptoms, varying in frequency and severity. As new data are emerging to help inform treatment guidelines, the perspectives of those living with Long Covid are essential in informing healthcare practice. The research aimed to collect the narratives of people living with Long Covid to better understand the lived experience of this condition. In attempting to narrate complex or traumatic experiences the arts and humanities can offer alternative ways of expressing embodied narratives, representing rich sources of meaning. Therefore, the research specifically sought to elicit creative expressions from participants with lived experience of Long Covid.
methodsData were collected via an online repository where participants could submit their pieces of creative writing. Data were collected between August 2021 and January 2022 and a total of 28 submissions were received from participants. These were mostly written creative narratives. However, a small number were submitted as audio or video files of spoken word poetry or songs. Data collection was stopped once data saturation was achieved.
resultsThe submissions were subjected to thematic analysis and five themes were generated. These five themes are Identity, social relationships, symptoms, interaction with healthcare systems and time. The results provide an insight into the experience of Long Covid as detailed by the participants' creative narratives.
conclusionThe results from this study provide a unique insight into the lived experience of Long Covid. In relation to clinical practice, the results suggest that adjustment reaction and loss of sense of self could be added as common symptoms. PATIENT AND PUBLIC CONTRIBUTION: Before undertaking the research, Long Covid community groups were contacted to discuss the potential value of this study and it was widely supported. One of the leading Long Covid support groups was also involved in disseminating information regarding the project. As part of ongoing work within this project, members of the team are actively disseminating the results within Long Covid communities and seeking to develop arts-based workshops specifically for people with Long Covid.
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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.