Exploring the Experience of Healthcare-Related Epistemic Injustice among People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Journal article
Authors | Hunt, J., Runacres, J., Herron, D. and Sheffield, D. |
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Abstract | Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a chronic, disabling yet clinically “contested” condition, previously theorised through a lens of epistemic injustice. Phenomena conceptually close to epistemic injustice, including stigma, are known to have deleterious consequences on a person’s health and life-world. Yet, no known primary studies have explored how people with ME/CFS experience healthcare through a lens of epistemic injustice, whilst a dearth of research explicitly exploring healthcare-related injustice from a patient perspective has been noted. This qualitative study seeks to address this gap. Semi-structured interviews and interpretative phenomenological analysis (IPA) were used to explore the experiences of five people with ME/CFS in the UK, vis-à-vis healthcare-related epistemic injustice. One superordinate theme is presented, “Being de-centred in patient-centred care,” alongside two sub-themes: “Struggling for epistemic-existential validation” and “Negotiating socio-epistemic hierarchies, politics and ‘power’.” Findings suggest that healthcare-related epistemic injustice may differentially impact according to the patient’s social positionality (here, notably gender), and that a potential pathway of existential harm operates through threats to identity and personhood. Findings also indicate that cultural and political factors may further epistemic injustice in healthcare. Finally, epistemic injustice impacting as a chronic stressor cannot be ruled out and is worthy of further research. The experience of healthcare-related epistemic injustice can carry far-reaching yet varied consequences for patients. Future research should consider drawing upon more socio-demographically diverse samples and an intersectional approach is recommended. Further exploration of structural drivers of epistemic injustice may highlight a need for politically and socio-culturally cognisant clinical approaches. |
Keywords | myalgic encephalomyelitis / chronic fatigue syndrome; epistemic injustice; healthcare experiences |
Year | 2024 |
Journal | The Qualitative Report |
Journal citation | 29 (4), pp. 1-26 |
Publisher | Nova Southeastern University , United States |
ISSN | 2160-3715 |
Digital Object Identifier (DOI) | https://doi.org/10.46743/2160-3715/2024.6519 |
Web address (URL) | https://nsuworks.nova.edu/tqr/vol29/iss4/15/ |
Publisher's version | License File Access Level Open |
Output status | Published |
Publication dates | |
Online | 17 Apr 2024 |
Publication process dates | |
Deposited | 13 May 2024 |
https://repository.derby.ac.uk/item/q6546/exploring-the-experience-of-healthcare-related-epistemic-injustice-among-people-with-myalgic-encephalomyelitis-chronic-fatigue-syndrome
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Publisher's version
Exploring the Experience of Healthcare-Related Epistemic Injustic.pdf | ||
License: CC BY-NC-SA 4.0 | ||
File access level: Open |
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