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

被引:7
|
作者
Bartlett, Chelsea [1 ]
Hughes, Julie L. [1 ]
Miller, Laura [1 ]
机构
[1] Australian Catholic Univ ACU, Brisbane, Qld, Australia
关键词
Myalgic encephalomyelitis; chronic fatigue syndrome; myalgic encephalomyelitis; lived experience; occupational disruption; participation; PEOPLE; WOMEN;
D O I
10.1177/03080226211020656
中图分类号
R49 [康复医学];
学科分类号
100215 ;
摘要
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.
引用
收藏
页码:241 / 250
页数:10
相关论文
共 50 条
  • [21] Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome RESPONSE
    Smith, M. E. Beth
    Haney, Elizabeth
    Nelson, Heidi D.
    ANNALS OF INTERNAL MEDICINE, 2015, 163 (11) : 888 - 888
  • [22] Immunostimulation in the treatment for chronic fatigue syndrome/myalgic encephalomyelitis
    Amy D. Proal
    Paul J. Albert
    Trevor G. Marshall
    Greg P. Blaney
    Inge A. Lindseth
    Immunologic Research, 2013, 56 : 398 - 412
  • [23] 'The Lightning Process' and chronic fatigue syndrome/myalgic encephalomyelitis
    Vallings, Rosamund
    JOURNAL OF PRIMARY HEALTH CARE, 2022, 14 (03) : 283 - 284
  • [24] Investigation of suspected chronic fatigue syndrome/myalgic encephalomyelitis
    Tveramo, Aksel
    Johnsen, Ine Baug
    TIDSSKRIFT FOR DEN NORSKE LAEGEFORENING, 2016, 136 (06) : 509 - 509
  • [25] Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
    Cortes Rivera, Mateo
    Mastronardi, Claudio
    Silva-Aldana, Claudia T.
    Arcos-Burgos, Mauricio
    Lidbury, Brett A.
    DIAGNOSTICS, 2019, 9 (03)
  • [26] THE CHRONIC FATIGUE SYNDROME (MYALGIC ENCEPHALOMYELITIS) - MYTH OR MYSTERY
    SPRACKLEN, FHN
    SOUTH AFRICAN MEDICAL JOURNAL, 1988, 74 (09): : 448 - 452
  • [27] Immunostimulation in the treatment for chronic fatigue syndrome/myalgic encephalomyelitis
    Proal, Amy D.
    Albert, Paul J.
    Marshall, Trevor G.
    Blaney, Greg P.
    Lindseth, Inge A.
    IMMUNOLOGIC RESEARCH, 2013, 56 (2-3) : 398 - 412
  • [28] Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
    Grach, Stephanie L.
    Seltzer, Jaime
    Chon, Tony Y.
    Ganesh, Ravindra
    MAYO CLINIC PROCEEDINGS, 2023, 98 (10) : 1544 - 1551
  • [29] The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome
    Hanson, Maureen R. R.
    PLOS PATHOGENS, 2023, 19 (08)
  • [30] Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
    Sarzi-Puttini, Piercarlo
    Marotto, Daniela
    Giorgi, Valeria
    CLINICAL AND EXPERIMENTAL RHEUMATOLOGY, 2021, 39 (03) : S198 - S198