“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

Abstract

BackgroundFatigue 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.MethodsThis 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.ResultsFourteen 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.ConclusionDespite 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.

The impact of post-stroke fatigue on work and other everyday life activities for the working age population – a registry-based cohort study

“…However, post-stroke fatigue is an invisible impairment that may not be detected during hospital stay. Instead, it is often revealed after returning home when the person resumes activities in everyday life [ 10 , 33 ] or when returning to work [ 34 ].…”

“…Based on the results of this study, the chance of returning to everyday life as before the stroke increases almost six times when not experiencing PSF one year post-stroke. However, studies have shown that patients seldom receive any information or advice about post-stroke fatigue during their hospital stay or after discharge [ 33 , 34 , 44 ] and that they are omitted to learn to manage fatigue by themselves [ 33 ]. As knowledge about life after stroke is currently limited, national guidelines in Europe do not contain any applicable recommendations regarding inter­ventions that facilitate participation and integration in society, including return to work [ 45 ].…”

Nursing Science Advances in Poststroke Fatigue, Return to Work, Sleep Disorders, and Mindfulness Following Stroke

“…Another qualitative study reported the experience of PSF in 14 stroke survivors undergoing outpatient rehabilitation and the perspective of 9 caregivers. 2 Six themes were identified: (1) unpredictable identification of PSF and lack of preparation for the occurrence of PSF; (2) the personal nature of experience and adjustment; (3) the importance of taking responsibility for self-management; (4) the complex juggle of outpatient rehabilitation with PSF; (5) the realization that PSF demands self-directed problem-solving; and (6) the need for family and caregiver support in managing PSF. 2 A main finding was the participants learned to manage their fatigue independent of health care professionals, reinforcing the need for clinicians in rehabilitation settings to help stroke survivors identify and manage PSF.…”