Living with myalgic encephalomyelitis/chronic fatigue syndrome : Experiences of occupational disruption for adults in Australia

Journal article


Bartlett, Chelsea, Hughes, Julie L. and Miller, Laura. (2022). Living with myalgic encephalomyelitis/chronic fatigue syndrome : Experiences of occupational disruption for adults in Australia. British Journal of Occupational Therapy. 85(4), pp. 241-250. https://doi.org/10.1177/03080226211020656
AuthorsBartlett, Chelsea, Hughes, Julie L. and 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.

Keywordsmyalgic encephalomyelitis; chronic fatigue syndrome; myalgic encephalomyelitis/chronic fatigue syndrome; lived experience; occupational disruption; participation
Year2022
JournalBritish Journal of Occupational Therapy
Journal citation85 (4), pp. 241-250
PublisherSAGE Publications
ISSN0308-0226
Digital Object Identifier (DOI)https://doi.org/10.1177/03080226211020656
Scopus EID2-s2.0-85106715034
Page range241-250
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online27 May 2021
Publication process dates
Accepted07 Jan 2021
Deposited22 Nov 2021
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