Exploring real-time digital supported fatigue monitoring in fatigue management: Perspectives from OTs and brain injury survivors, 2024, Ezekiel et al

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Full title: Exploring the usefulness of real-time digitally supported fatigue monitoring in fatigue management: Perspectives from occupational therapists and brain injury survivors

Ezekiel, Leisle; Wilding, Harriet; Dearling, Jeremy; Collett, Johnny; Dawes, Helen

Abstract
Introduction: Persistent fatigue after acquired brain injury (ABI) needs long-term self-management. Self-monitoring supports self-management and informs the use of fatigue management strategies. Using ecological momentary assessment to monitor fatigue offers a data-driven approach to managing fatigue. Aims: To explore the usefulness of self-monitoring fatigue in real-time, using ecological momentary assessment to support self-management, from the perspective of people with ABI and occupational therapists. Methods: People with ABI monitoried their fatigue by wearing a Fitbit and completing six surveys a day on their phone for 6 days. Think aloud and semi-structured interviews elicited views on self-monitoring and the data generated. Transcripts were analysed using reflexive thematic analysis. Results: Four themes were developed from people with ABI ( n = 9): (1) Attending to experience, (2) making sense of data, (3) the relationship between fatigue and activity, (4) implications for daily life. Three themes from occupational therapists ( n = 5): (1) Challenges of using of data, (2) perceived benefits of self-monitoring, (3) viewing data in relation to their understanding of fatigue. Conclusion: Data generated in real-time challenged perspectives on fatigue and fatigue management. These insights may help people with ABI and their clinicians to plan personalised strategies for fatigue management and evaluate its impact on daily living.

Web | DOI | PMC | PDF | British Journal of Occupational Therapy
 
From the OT interviews:
At times therapist did not perceive patterns in the data, and so the data were not seen as useful. At times the data summaries also contradicted therapists understanding of fatigue and so therapists questioned the reliability or validity of the data. Key areas of contradiction centred around self-ratings of energy and fatigue (where participants had scored energy as high whilst scoring their fatigue as high), or where participants described experiencing mental fatigue whilst engaging in physical activity.
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Interpreting data in relation to therapists understanding of fatigue. Therapists had differing perspectives of fatigue, and this meant their expectations of the data differed. Two therapists used mindfulness-based approaches in their fatigue interventions and so wanted to know about participant’s mindful engagement in their reported activities. Others asked their service users to report stress levels or other bodily symptoms of fatigue, to better understand the context of activity, rest and fatigue.
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Then they go on to talk about fear avoidance and deconditioning in the discussion;
Changes to attentional processes are common following brain injury and may be accompanied by limited self-awareness of deficits (El Husseini et al., 2023; Rabinowitz and Levin, 2014). Hence, attending in the moment to experiences of fatigue and activity may increase awareness of factors that trigger and exacerbate fatigue and support interventions such as activity pacing.
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Nevertheless, it is important to note that self-monitoring of fatigue in real time may lead to avoidance and withdrawal, rather than increasing engagement as increased focus on fatigue and potential drivers of fatigue may negatively affect mood states. Hence, it is vital for people with brain injury to have clinical support when initially self-monitoring and interpreting generated data.
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Then they want to use it for supporting exercise and activity interventions:
It is noteworthy that the overall experience of fatigue was largely driven by mental rather than physical effort. This information may to useful in supporting exercise and physical activity interventions. Indeed, therapists viewed increasing a patient’s awareness of their fatigue as beneficial and thought they might use such data to raise awareness of fatigue triggers and ineffective coping strategies.
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Ironically, just after they point out that your own beliefs might affect how you interpret something:
Similar to Thomas et al., we also found that therapists’ clinical reasoning (as triggered by the data summaries) was shaped by their understanding of fatigue and this affected their interpretation of the data as well as views on what was missing from the data summaries. In our study, the therapists interpretation of data sometimes differed from those of participants with brain injury, particularly around approaches to pacing and relationships between physical activity and mental fatigue. This highlights the necessity for data to be trustworthy and for the clinician to understand the limitations of the data as they draw conclusions (Codella et al., 2018).
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Fear of activity is a focus also in this opinion piece today in a medical newspaper where the paper is used as a reference:

quote:
- We believe that patients can benefit from using this to dare to explore how much they can be active. Many are anxious about being too active for fear of experiencing increased fatigue afterwards. However, we found no significant correlation between higher activity and higher fatigue either the next day or two days later.

www.dagensmedisin.no

Fatigue etter hjerneskade: Veiviser kan gi et mer aktivt liv

Fordi de er usikre på om fysisk aktivitet vil øke symptomene, kan mange med ervervet hjerneskade bli mindre aktive. Nå gir forskning håp om at to enkle grep kan vise hver enkelt hvor mye man kan bevege seg uten å oppleve økt fatigue.
www.dagensmedisin.no www.dagensmedisin.no

google translation
www-dagensmedisin-no.translate.goog

Fatigue etter hjerneskade: Veiviser kan gi et mer aktivt liv

Fordi de er usikre på om fysisk aktivitet vil øke symptomene, kan mange med ervervet hjerneskade bli mindre aktive. Nå gir forskning håp om at to enkle grep kan vise hver enkelt hvor mye man kan bevege seg uten å oppleve økt fatigue.
www-dagensmedisin-no.translate.goog www-dagensmedisin-no.translate.goog
 
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