Exploring the Experience of Healthcare-Related Epistemic Injustice among People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Authors

Joanne Hunt, Uppsala University, SwedenFollow
Jessica Runacres, Staffordshire University, UK
Daniel Herron, Staffordshire University, UK
David Sheffield, University of Derby, UK

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, healthcare policy, qualitative, interpretative phenomenological analysis

Author Bio(s)

Joanne Hunt was a MSc Psychology student at University of Derby, UK, when this research was conducted, and is currently a Research Affiliate at Uppsala University in Sweden. Jo is a disabled researcher with a background in psychological therapies. Her research interests centre on the (bio)politics of stigmatised health conditions, sited at the intersection of psychology, disability studies, gender studies, and ethics, with particular focus upon structurally competent, disability-affirmative healthcare. Please direct correspondence to joanneehunt@outlook.com or joanne.hunt@uu.se

Dr Jessica Runacres was a Lecturer in Psychology at the University of Derby when this research was conducted and is currently a Senior Lecturer in Research Practice at Staffordshire University, UK. She received her PhD from Birmingham City University in 2021. Jessica’s current research interests include social prescribing, informal carers, nature connectedness, and health inequalities.

Dr Daniel Herron was a Lecturer in Psychology at the University of Derby when this research was conducted and is currently a Senior Lecturer in Psychology at Staffordshire University. He received his PhD in Psychology from Keele University in 2019. Dan’s current research interests include health, clinical and positive psychology, and through these perspectives, understanding the physical and mental health experiences of people. Examples of current research interests and projects include experiences of carers of people with dementia; informal carers; young carers; people with Hereditary Angioedema (HAE); people with chronic fatigue syndrome/myalgic encephalomyelitis, and epistemic injustice.

Professor David Sheffield is Professor of Psychology in the School of Psychology, University of Derby. His work aims to understand the impact of stress on health, wellbeing and performance. He uses a range of methodologies (e.g. epidemiological, experimental, psychophysiological, interviews) to elucidate mechanisms and develop interventions. His current research interests include inequalities and justice in healthcare; pain and pain management in patients and athletes; compassion and mindfulness-based approaches to living; cardiovascular responses to stress; performing under pressure, including decision making, the yips, and challenge and threat; and nature connectedness - correlates and interventions to improve people’s relationships with nature.

Acknowledgements

The authors would like to thank the UK ME Association for their support in advertising the study.

Publication Date

4-17-2024

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 International License.

DOI

10.46743/2160-3715/2024.6519

Recommended APA Citation

Hunt, J., Runacres, J., Herron, D., & Sheffield, D. (2024). Exploring the Experience of Healthcare-Related Epistemic Injustice among People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. The Qualitative Report, 29(4), 1125-1148. https://doi.org/10.46743/2160-3715/2024.6519

ORCID ID

http://orcid.org/0000-0003-3868-5765

ResearcherID

n/a