What is the occupational impact of myalgic encephalomyelitis/chronic fatigue syndrome for adults living in Australia?

Abstract

Introduction: Occupational recovery for people living with myalgic encephalomyelitis/chronic fatigue syndrome requires better assessment and understanding of the occupational impact of this debilitating condition. This study explores the lived experience of Australian adults with myalgic encephalomyelitis/chronic fatigue syndrome using the Model of Human Occupation. Methods: The research design was a cross-sectional descriptive study, and participants were recruited via social media to complete an online survey. A Model of Human Occupation Tool, The Occupational Self-Assessment, captured an individual’s perceptions of occupational identity and competence. Results: Results were analysed using descriptive statistics and non-parametric tests. The free-text responses were summarised. Twenty-nine participants completed the Occupational Self-Assessment. A decrease in occupational participation across all domains was evident. Qualitative themes of loneliness, feeling confined, feeling like a burden and loss of previous life/roles were collated, showing an adverse impact on occupational identity. A lack of independence and control showed a reduction in occupational competence. Conclusions: The study confirmed the impact of myalgic encephalomyelitis/chronic fatigue syndrome on occupational identity and competence. These individuals struggled with occupational adaptation and would benefit from occupational support. Occupational therapists could use the Occupational Self-Assessment to identify areas of need, set goals and facilitate better occupational adaptation.