Using time diaries to inform occupational therapy practice for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An exploratory study

Abstract

Introduction: Myalgic encephalomyelitis/chronic fatigue syndrome affects an individual’s occupational participation. There is little understanding in Australia of occupational interventions for myalgic encephalomyelitis/chronic fatigue syndrome. This study explored how Australian adults with myalgic encephalomyelitis/chronic fatigue syndrome use their time and whether the National Institute of Health Activity Record can inform occupational interventions. Method: Using a convergent mixed method, nine participants completed the National Institute of Health Activity Record time diary and five survey questions exploring clinical utility and the impact of myalgic encephalomyelitis/chronic fatigue syndrome. Data analysis included descriptive statistics for time-use data and an inductive thematic analysis for survey responses. Results/Findings: Participants (aged 29–59 years) reported 58% of their time was spent awake and in recreation and leisure occupations. Quantitative data reflected no statistically significant change in participants’ symptoms, performance and motivation throughout the day. Six themes emerged from the qualitative data that highlighted participants’ experiences completing the National Institute of Health Activity Record and the impact of myalgic encephalomyelitis/chronic fatigue syndrome on their time-use. Conclusion and Relevance: The National Institute of Health Activity Record provided insights into a participant’s time-use, which could inform occupational interventions. Modifying the National Institute of Health Activity Record format would improve usability for participants and reduce time for completion. Discussing results and extending the data collection period may capture the impact and fluctuations of myalgic encephalomyelitis/chronic fatigue syndrome more accurately.