Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community

IRESON, J., TAYLOR, Amy, RICHARDSON, E., GREENFIELD, B. and JONES, G. (2022). Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community. Health Expectations.

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Official URL: https://onlinelibrary.wiley.com/doi/10.1111/hex.13...
Open Access URL: https://onlinelibrary.wiley.com/doi/epdf/10.1111/h... (Published version)
Link to published version:: https://doi.org/10.1111/hex.13518


Background: In 2020, the long-lasting effects of the Covid-19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life-changing impact. Long Covid is poorly explained by objective medical tests, leading to widespread disbelief and stigma associated with the condition. The aim of this organic research is to explore the physical and epistemic challenges of living with Long Covid. Methods: Unlike any previous pandemic in history, online Covid communities and ‘citizen science’ have played a leading role in advancing our understanding of Long Covid. As patient-led research of this grassroots Covid community, a team approach to thematic analysis was undertaken of 66 patient stories submitted online to covid19-recovery.org at the beginning of the Covid-19 pandemic between April and September 2020. Results: The overriding theme of the analysis highlights the complexities and challenges of living with Long Covid. Our distinct themes were identified: the life-changing impact of the condition, the importance of validation and how, for many, seeking alternatives was felt to be their only option. Conclusions: Long Covid does not easily fit into the dominant evidence-based practice and the biomedical model of health, which rely on objective indicators of the disease process. Patient testimonies are vital to understanding and treating Long Covid, yet patients are frequently disbelieved, and their testimonies are not taken seriously leading to stigma and epistemic injustice, which introduces a lack of trust into the therapeutic relationship. Patient Contribution: The research was undertaken in partnership with our consumer representative(s) and all findings and subsequent recommendations have been coproduced.

Item Type: Article
Uncontrolled Keywords: Long Covid; United Kingdom; epistemic injustice; invisibility; lived experience; person-centred care; qualitative; 1110 Nursing; 1117 Public Health and Health Services; 1701 Psychology; Public Health
Identification Number: https://doi.org/10.1111/hex.13518
SWORD Depositor: Symplectic Elements
Depositing User: Symplectic Elements
Date Deposited: 30 May 2022 11:53
Last Modified: 12 Oct 2023 11:46
URI: https://shura.shu.ac.uk/id/eprint/30273

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