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Living with myalgic encephalomyelitis/chronic fatigue syndrome : Experiences of occupational disruption for adults in Australia
Bartlett, Chelsea Hughes, Julie L. Miller, Laura
Bartlett, Chelsea
Hughes, Julie L.
Miller, Laura
Abstract
Introduction
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood, highly stigmatised health condition that has widespread impacts on the individual. Currently, there is limited understanding of the ME/CFS experience from an occupational perspective within Australia. This study aimed to explore the lived experience of ME/CFS and subsequent disruption to occupational participation for adults living in Australia.
Methods
Using descriptive case study design, five participants with ME/CFS in Australia completed semi-structured interviews. Reflexive thematic analysis was used to analyse the qualitative data.
Findings
Themes identified were organised using the Person-Environment-Occupation model. Participants reported systemic changes to previous levels of physical, cognitive and affective functioning, resulting in significant occupational disruption and poor well-being. Occupational prioritisation was followed by a loss of occupations starting with leisure, then productivity and eventually self-care. Environmental barriers to participation included stigma and misunderstanding of ME/CFS, financial hardship, lack of appropriate health services and strains on personal support networks and relationships.
Conclusion
Changes to occupational performance following the onset of ME/CFS caused significant occupational disruption and resulted in limited participation which narrowed over time. There is a clear role for occupational therapy to intervene early to prevent significant negative impacts on occupational participation for people with ME/CFS.
Keywords
myalgic encephalomyelitis, chronic fatigue syndrome, myalgic encephalomyelitis/chronic fatigue syndrome, lived experience, occupational disruption, participation
Date
2022
Type
Journal article
Journal
British Journal of Occupational Therapy
Book
Volume
85
Issue
4
Page Range
241-250
Article Number
ACU Department
School of Allied Health
Faculty of Health Sciences
Faculty of Health Sciences
Collections
Relation URI
Source URL
Event URL
Open Access Status
License
All rights reserved
File Access
Controlled