Roxburgh Rachel, Hughes Julie, Milgate Wendy
Bachelor of Occupational Therapy (Hons), School of Allied Health, Australian Catholic University, Brisbane Campus, Brisbane, QLD, Australia.
Department of Occupational Therapy, School of Allied Health, Faculty of Health Sciences, Australian Catholic University, Brisbane Campus, Brisbane, QLD, Australia.
Br J Occup Ther. 2024 Sep;87(9):583-592. doi: 10.1177/03080226241249279. Epub 2024 May 19.
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.
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.
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.
肌痛性脑脊髓炎/慢性疲劳综合征会影响个体的职业参与度。澳大利亚对于肌痛性脑脊髓炎/慢性疲劳综合征的职业干预了解甚少。本研究探讨了患有肌痛性脑脊髓炎/慢性疲劳综合征的澳大利亚成年人如何利用他们的时间，以及美国国立卫生研究院活动记录是否能为职业干预提供信息。
采用聚合混合方法，9名参与者完成了美国国立卫生研究院活动记录时间日记以及5个关于临床效用和肌痛性脑脊髓炎/慢性疲劳综合征影响的调查问题。数据分析包括对时间使用数据的描述性统计以及对调查回复的归纳主题分析。
结果/发现：参与者（年龄在29至59岁之间）报告称，他们清醒时间的58%用于娱乐和休闲活动。定量数据显示，参与者一整天的症状、表现和动机没有统计学上的显著变化。定性数据中出现了六个主题，突出了参与者完成美国国立卫生研究院活动记录的经历以及肌痛性脑脊髓炎/慢性疲劳综合征对他们时间使用的影响。
美国国立卫生研究院活动记录为了解参与者的时间使用情况提供了见解，可为职业干预提供参考。修改美国国立卫生研究院活动记录的格式将提高其对参与者的可用性，并减少完成时间。讨论结果并延长数据收集期可能会更准确地捕捉肌痛性脑脊髓炎/慢性疲劳综合征的影响和波动情况。
