“I Give It Everything for an Hour Then I Sleep for Four.” The Experience of Post-stroke Fatigue During Outpatient Rehabilitation Including the Perspectives of Carers: A Qualitative Study

Well, duh. Post stroke fatigue has been known for decades. We don't want to cope with it, we want it solved.

“I Give It Everything for an Hour Then I Sleep for Four.” The Experience of Post-stroke Fatigue During Outpatient Rehabilitation Including the Perspectives of Carers: A Qualitative Study

Erin D. Bicknell^1,2*, Catherine M. Said^2,3,4, Kimberley J. Haines² and Suzanne Kuys¹

• ¹School of Allied Health, Australian Catholic University, Brisbane, QLD, Australia
• ²Department of Physiotherapy, Western Health, St Albans, VIC, Australia
• ³Department of Physiotherapy, The University of Melbourne, Melbourne, VIC, Australia
• ⁴Australian Institute for Musculoskeletal Science, St Albans, VIC, Australia

Background: Fatigue is a debilitating post-stroke symptom negatively impacting rehabilitation. Lack of acknowledgment from carers can be additionally distressing. The purpose of this study was to describe the experience of post-stroke fatigue during outpatient rehabilitation, including the perspectives of carers.

Methods: This qualitative study was guided by descriptive phenomenology within a constructivist paradigm. Semi-structured interviews were conducted with stroke survivors experiencing fatigue (Fatigue Assessment Scale >23) and attending outpatient rehabilitation. Carers were also interviewed where identified, providing insight into their own and stroke survivor experiences. Data were analyzed according to Colaizzi's analytic method.

Results: Fourteen stroke survivors (50% culturally and linguistically diverse), and nine carers participated. Six themes were identified: 1. The unpredictable and unprepared uncovering of fatigue; 2. Experience and adjustment are personal 3. Being responsible for self-managing fatigue; 4. The complex juggle of outpatient stroke rehabilitation with fatigue; 5. Learning about fatigue is a self-directed problem-solving experience; 6. Family and carers can support or constrain managing fatigue.

Conclusion: Despite engaging in outpatient rehabilitation, stroke survivors largely learnt to manage fatigue independent of healthcare professionals. Carers often facilitated learning, monitoring rehabilitation, daily routines and fatigue exacerbation. Conversely, family could be dismissive of fatigue and possess unrealistic expectations. Post-stroke fatigue must be considered by clinicians when delivering outpatient rehabilitation to stroke survivors. Clinicians should consistently screen for fatigue, provide flexible session scheduling, and educate about individual indicators and strategies for management. Clinicians should also explicitly engage carers who play a critical role in the management of fatigue.

Introduction

Post-stroke fatigue has been described as a feeling of “…tiredness, a lack of energy, or an increased need to rest… (which) has led to difficulty taking part in everyday activities.” (1) (p. 543). Fatigue is associated with dependence in daily activities, poor quality of life (2), reduced physical activity (3), and increased morbidity and mortality (4). Approximately half of all stroke survivors experience fatigue (5), regardless of severity (6). Optimizing motor recovery post-stroke requires high-dose rehabilitation (7, 8). However, stroke survivors report fatigue impacts recovery (9), limiting therapy participation and independent practice (10, 11). Little is known about how people participating in outpatient rehabilitation experience fatigue. This is a challenging time when stroke survivors are adjusting to new disabilities, adapting to life at home while continuing with intensive rehabilitation. Clinicians are not providing sufficient education and support for post-stroke fatigue (12, 13). Understanding how fatigue impacts stroke survivors and their carers while participating in outpatient rehabilitation will assist health professionals to support stroke survivors and equip them and their carers with knowledge and skills to manage.

A systematic review of qualitative studies conceptualized the experience of fatigue in stroke survivors into five core characteristics; lack of energy to perform activities, abnormal need for sleep, becoming easily tired, feeling fatigue is unpredictable, and increased stress sensitivity (12). Interestingly, no themes emerged around fatigue and rehabilitation, as most studies recruited participants in the chronic phase of stroke recovery. One study explored stroke survivor experience of fatigue specifically during inpatient rehabilitation. While factors particular to the hospital environment, such as ward regime and noise were identified as exacerbating fatigue, the relationship between rehabilitation and fatigue was not explored and did not emerge (14). It is possible this experience differs when stroke survivors return to their daily environment whilst also engaging in rehabilitation.

Additionally, stroke survivors appear to cope better if their fatigue is acknowledged and supported and feel increased emotional distress when carers lack appreciation of fatigue (12). Further investigation of carer perspectives is required to understand factors that influence fatigue acknowledgment and carer burden of post-stroke fatigue, with carers identifying this as a research priority (13, 15).

This study aims to describe the experience of post-stroke fatigue during outpatient rehabilitation in a group of stroke survivors and their carers.

More at link.