The day-to-day experiences of people with fatigue after stroke: Results from the Nottingham Fatigue After Stroke study.

Background/Aims Post-stroke fatigue is common and impacts on patient outcomes. Our aim was to investigate day-to-day experiences of fatigue six months after stroke. Methods Participants were identified from a cohort study of fatigue (NotFAST) which excluded those with depression and aphasia. Participants who reported high fatigue scores at six months post-stroke were interviewed individually. Data were analysed thematically. Twenty-two participants were interviewed. Fatigue was reported to impact on instrumental activities of daily living, leisure activities, social relationships and work life. Variations in fatigue were reported throughout the day and over the longer term. Triggers included physical and mental exertion, and periods of inactivity. Self-devised management strategies included daytime rest or sleep, pacing activities, making compromises, accepting help from others, and keeping active. It was sometimes unclear whether fatigue was a specific result of stroke or due to ageing, poor health, or sleep disturbance. Few participants had received specific information or advice about fatigue.


Introduction
Fatigue after stroke is common (Lerdal et al., 2009;Choi-Kwon and Kim, 2011) and differs qualitatively and quantitatively from pre-stroke fatigue (Annoni et al., 2008;Kirkevold et al., 2012;Eilersten et al., 2013). Patients report that post-stroke fatigue is characterized by weariness unrelated to previous exertion levels and is usually not ameliorated by rest (Staub and Bogousslavsky, 2001;De Groot et al., 2003). A qualitative meta-synthesis of stroke survivors' experiences of fatigue (Eilersten et al., 2013) identified five core characteristics of post-stroke fatigue: (i) a lack of energy to perform activities; (ii) an abnormal need for longlasting sleep; (iii) being easily tired by activity, along with an abnormal need for naps or rest; (iv) unpredictable feelings of fatigue without explanation; and (v) increased stress sensitivity.
Post-stroke fatigue is an important issue for stroke survivors and their carers (McKevitt et al., 2011). It can have a negative impact on survivors' physical, psychosocial and psychological functioning (Choi-Kwon et al., 2005;Barker-Collo et al., 2007;Winward et al., 2009;Northcott and Hilari, 2011;Andersen et al., 2012;Northcott et al., 2016), participation in rehabilitation (Morley et al., 2005;Wu et al., 2015a), and rates of institutionalization and survival (Glader et al., 2002). However, post-stroke fatigue is also a hidden and undefined condition, with a lack of knowledge about its existence and its impact (Eilersten et al., 2013).
Given the impact of fatigue on outcomes for stroke survivors, it is important that post-stroke fatigue is appropriately identified (van der Werf et al., 2001) and managed (Gordon et al., 2004) in clinical practice. However, there is currently a lack of evidence or clinical guidelines for the management or prevention of post-stroke fatigue (McGeough et al., 2009;National Institute of Health and Care Excellence, 2013;Wu et al., 2015b). In a survey of stroke survivors, 43% of respondents reported that they did not feel they were receiving the help that they needed in dealing with fatigue (McKevitt et al., 2011).
The qualitative studies that have been specifically conducted into post-stroke fatigue have been few in number. Of a qualitative meta-synthesis of 12 studies of stroke survivors' experiences of fatigue (Eilersten et al., 2013), only four studies explicitly identified fatigue in their aims (Flinn and Stube, 2010;Barbour and Mead, 2012;Kirkevold et al., 2012;White et al., 2012). Results of these studies indicated that fatigue has a significant impact on the lives of stroke survivors, including engagement in meaningful activities, life roles, cognition, and participation in rehabilitation. Other qualitative studies of stroke, which have included aspects of post-stroke fatigue, have reported similar findings (Bendz, 2003;Röding et al., 2003;Carlsson et al., 2004;Carlsson et al., 2009;Robison et al., 2009;Thompson and Ryan, 2009). However, few studies have explored the experience of post-stroke fatigue to illuminate the day-to-day problems and difficulties faced. There is also little information about other aspects of post-stroke fatigue, such as factors that might exacerbate or improve fatigue, or strategies that people may use to manage their fatigue.
The aim of the present study was to explore the day-to-day fatigue-related experiences and perspectives of participants who reported high levels of fatigue at six months following stroke in the Nottingham Fatigue After Stroke (NotFAST) study (Drummond et al., 2017).

Design
The study was approved by the East Midlands (Nottingham 2) NHS Health Research Authority Research Ethics Committee (13/EM/0187). All participants provided informed consent.
Potential interviewees were identified from participants in the NotFAST study (Drummond et al., 2017). This was a multi-centre longitudinal cohort study to investigate post-stroke fatigue and its associated factors in patients who did not have high levels of depressive symptoms or aphasia.
NotFAST participants were identified from patients admitted to four UK inpatient stroke units within four weeks of stroke, between September 2013 and March 2015. Those eligible for inclusion had a clinical diagnosis of stroke, were aged 18 years or over, able to give informed consent, and had no previous history of stroke. Potential participants were excluded if they were unable to read or speak English or had a documented diagnosis of dementia. Following initial screening, patients who had significant depressive symptoms (scoring ≥7 on the Brief Assessment Schedule Depression Cards (BASDEC) (Adshead et al., 1992)), or who scored below the age-recommended thresholds for dysphasia (Sheffield Screening Test for Acquired Language Disorders (Synder et al., 1993)), were also excluded from the study.
In the NotFAST study, 268 participants were assessed within four weeks of first stroke on the Fatigue Severity Sale (FSS) of the Fatigue Assessment Inventory (Schwartz et al., 1993), and 213 were re-assessed at six-month follow-up. Of these, 109 (51%) reported significant levels of fatigue (FSS >36).

Procedure
From the 109 participants who had reported significant levels of fatigue at six months in the NotFAST study, we recruited participants from the two closest recruitment sites to the research team office base (Nottingham University Hospitals and University Hospitals of Leicester). We approached both men and women, some who were working at the time of stroke, and some who lived alone. We estimated that data from approximately 20 participants could be obtained and analysed within the available timeframe.
Although participants had already consented to being approached about potentially participating in this qualitative study within the NotFAST study, further informed consent was obtained for the interviews. Participants were interviewed in their own homes by one of three interviewers, all of whom had had prior experience of conducting qualitative research interviews. A semi-structured interview schedule was developed, based on extant literature and input from the study Steering Group, which included stroke survivors. Open-ended questions were used in order to give participants the opportunity to talk freely about the topics covered, and participants were able to Interviews were digitally recorded and transcribed verbatim. Transcripts were checked against the original audio recording and any errors were corrected.

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The transcripts were initially read and re-read, to enable the researchers to familiarise themselves with the depth and breadth of the data and the types of experiences conveyed.
Initial data codes were then generated, identifying commonly-occurring concepts and issues arising from the data. All transcripts were searched to further identify these codes. Different codes were then rearranged into overarching themes. Another researcher was available in any instances where there were any differences of opinion which could not be resolved by the interviewers. According to Braun and Clarke's (2006) recommendations, a theme was considered to represent an important aspect of the studied experience and also showed a pattern across the data. Codes were compared and contrasted to look for similarities and differences between different participants' responses. Quotations were identified which illustrated examples of the agreed themes.

Characteristics of participants
Twenty-five participants were invited to take part in the qualitative interviews. Two declined to be interviewed, and one agreed to participate but could not subsequently be contacted. The 22 who took part were aged between 51 and 83 years (mean = 68.8 years, SD = 9.32), and 12 were men (54.5%). Twenty (90.9%) participants were white British; 17 (77.3%) were retired/no longer working; and 17 (77.3%) lived with a spouse or other person.
At six month follow-up, the mean fatigue score (FSS) was 49.91 (SD 8.79), indicating high levels of fatigue. The mean depressive symptoms score (BASDEC) was 3.38 (SD 2.96), below the cut-off score of ≥7 for depressive disorder. Stroke severity was minor to moderate (mean Nottingham Extended Activities of Daily Living scale (Nouri and Lincoln, 1987) score 16.55 (SD 5.42); mean Barthel Index (Wade and Collin, 1988) score 17.64 (SD 2.67)).
Interviews lasted between nine and 63 minutes, with a mean of 26 minutes.

Key themes
Six major themes were identified from the research interviews, in line with the topics of questioning. These are explored below, with excerpts from the transcripts to highlight participants' experiences.

i. Diverse descriptions of post-stroke fatigue
Participants described overall reductions in drive, stamina and energy levels. Fatigue was described as being debilitating and all-encompassing.

years
The onset and progression of fatigue varied between participants. For some, fatigue had been more of a problem in the earlier days after stroke, but for others, the onsetor perhaps its noticeable impact on lifestyle and role performancewas later. Some participants noted that their fatigue had improved over time, but others felt that this was not the case; they had either not improved at all, had reached a plateau, or were experiencing only very slow and gradual improvements.

iv. Self-management strategies for fatigue
Participants developed a variety of strategies to assist them in managing their symptoms. Most reported spending time resting or sleeping during the daytime as a common way of replenishing or conserving energy. Sometimes it appeared that these periods of rest were more of a 'necessity', rather than a conscious or necessarily effective strategy for managing fatigue.

"I'll have to [have a nap], otherwise I won't be able to go out tonight." PP1044, female, 67 years
For most, incorporating periods of rest in their day was found to be helpful, and meant that they were able to resume valued activities later in the day. However, for others, the benefits of rest were short-lived and their fatigue returned soon afterwards.

"I feel a bit better then [after resting], but once I get up and start going again, I'm tired." PP1025, female, 79 years
Many participants reported that pacing activitiesspending shorter periods of time on activities and interspersing these with periods of restwas an effective way of conserving energy and managing daily tasks. A number of participants mentioned that they no longer felt able to plan activities in advance, since they could not predict how much they would be affected by fatigue on any given day.
Instead, a more flexible approach was generally adopted, often involving rescheduling activities, adapting daily routines, and a degree of trial and error.

"I don't plan things now, which is weird. I used to plan weeks in advance, but now… I take each day as it comes." PP1035, male, 52 years
Many participants reported that they tried to avoid putting pressure on themselves, and were now undertaking fewer tasks each day and/or 'letting go' of some tasks altogether. Many participants reported that they had altered their expectations and made compromises regarding how well, or how often, household tasks were carried out.

vi. Lack of information and advice received on fatigue
The overwhelming majority of participants had received no adviceeither spoken or writtenfrom healthcare professionals about managing their fatigue, either in hospital or since discharge.

"I don't think anyone has spoken to me about it." PP1026, male, 69 years
It was suggested that, in the acute care phase, fatigue may not yet be seen as a priority. Other aspects of recovery may be of more immediate concern, and patients in hospital may not feel that this is the right time or place to talk about their symptoms. Similarly, the small number of participants who mentioned that they had received advice on fatigue since being discharged home said that this concerned accepting fatigue as normal. The implication was that fatigue would improve over time, and that it was important to manage expectations as to the rate of recovery. The fact that prevention of further strokes is a key concern of treatment post-stroke may have meant that fatigue (and other subtler problems) had been overlooked. Only two participants mentioned that they had received written material on post-stroke fatigue.
The precise content of this material was not clear, but appeared to include information about the existence of post-stroke fatigue, its potential lasting effects, and common-sense advice on how it might be managed. Those who had received such material felt that it was on the whole helpful and reassuring.

Discussion
The day-to-day impact of post-stroke fatigue among our participants was high, with many different aspects of daily occupational performance and roles being affected. Our findings confirm those of previous qualitative studies that fatigue has a profound negative impact on stroke survivors' daily lives, and that stroke survivors are unprepared for the experience of fatigue (Flinn and Stube, 2010;Barbour and Mead, 2012;Kirkevold et al., 2012;White et al., 2012).
Participants generally reported that performance of basic ADLs was not affected by fatigue, but that more complex, energy-consuming IADLs (e.g. shopping, using transport) were more severely impacted. This may be because the effort required to carry out the former makes it difficult for stroke survivors to find the additional energy to engage in other 'discretionary' activities (Pallesen, 2014). Participants described their fatigue as being largely unpredictable, with variations in symptoms reported throughout each day and from one day to the next. These findings are similar to those of Barbour and Mead (2012), who found that there was no particular time of day that patients felt most fatigued, and Carlsson et al. (2009), who found that stroke survivors have to manage an 'everyday life of uncertainty', due in part to their symptoms being unforseeable. Moreover, this uncertainty about the level of fatigue that could be experienced day-to-day was itself sometimes cited by our participants as being a barrier to taking part in activities.
It is notable that, although our sample had mainly experienced minor or moderate strokes, the impact of fatigue was still high. In addition, the NotFAST study was unique in taking into account the association of depressive symptoms with fatigue, excluding participants who had reported depressive symptom levels consistent with a diagnosis of depression (score ≥7 on the Brief Assessment Schedule Depression Cards (BASDEC) (Adshead et al., 1992)). At six-month follow-up, the mean BASEDC score of those who were interviewed for the present study was 3.38 (SD 2.96), still well below this cut-off for depressive symptoms. Our findings, in contrast to those of other studies, may therefore be more clearly attributable to post-stroke fatigue rather than to concomitant depressive symptomatology. As we had excluded those with depressive symptoms, we are more confident of our findings. However, as people with aphasia were excluded from the NotFAST study and therefore also from this qualitative study, it may be that aspects of post-stroke fatigue specifically relevant to aphasia have been overlooked.
Our study was novel in exploring the strategies used by stroke survivors to self-manage their fatigue, thus addressing the paucity of qualitative literature on factors that influence post-stroke fatigue (Barbour and Mead, 2012). Self-devised strategies for managing fatigue among our participants included incorporating rest, accepting help from others, pacing activities, flexibility, altered priorities, and keeping active. These strategies may inform the design of interventions for fatigue. For example, interventions to promote activity after stroke, such as exercise programmes, have the potential to modify post-stroke fatigue (White et al., 2011;Barbour and Mead, 2012). Programmes to address emotional and behavioural responses to fatigue, such as motivational interviewing techniques, problem-solving, and/or cognitive-behavioural approaches, may be useful in helping survivors to interpret their new situation and its impact, and to develop adaptive strategies to enable participation in activities (Kirkevold, 2010).
It is notable that the management strategies used by our participants were sometimes conveyed as being more of an 'absolute necessity' or a 'last resort', rather than necessarily a conscious or even always an effective strategy for managing fatigue. The contrast between 'pacing/energy conservation' (i.e. 'doing less') and 'keeping active' (i.e. 'doing more') as reported strategies for managing fatigue is interesting. There appear to be differences in individual approaches to fatigue management which reflect either 'active' or 'passive' responses. These may relate to the degree of control that people feel they have over their fatigue symptoms , suggesting that differences in coping styles may have a bearing on the experience of poststroke fatigue.
A striking common theme was the almost universal lack of education and preparation for the experience of post-stroke fatigue that participants received. Very few participants had spoken to a health professional about post-stroke fatigue and how this might be managed. The scant advice provided focused mainly on the need to rest, and participants were not given clear information on the likely prognosis of fatigue, but rather were left to navigate their own path through the problem of living with fatigue. Providing targeted information about post-stroke fatigue is likely to help survivors and their families to acquire a more realistic sense of the impact of fatigue and thus help to facilitate coping and prevent distress and burden (Flinn and Stube, 2010;Eilersten et al., 2013). A related issue is the need to identify fatigue in the early stages of recovery, this itself being a prerequisite for providing relevant and timely information to patients and families (White et al., 2012). It may be the case that professionals do not know what to suggest, and therefore do not discuss the issue of fatigue. A study by Rowat et al. (2016) has recently cited the research question, 'What are the best ways to manage and/or prevent fatigue?' as the top research priority for nurses working in stroke.
As with other qualitative studies, our results represent only a snapshot of the experiences of a small number of stroke survivors. Our participants were relatively unimpaired physically and cognitively, having experienced mainly minor or moderate strokes, and were relatively motivated individuals, having chosen to take part in a research study. However, we found that fatigue was an important issue after stroke, even when stroke severity was relatively mild.
Stroke survivors felt ill-equipped for the day-to-day impact of fatigue on their lives and often struggled to adapt. There is a need for improved information provision and educational interventions to equip staff and prepare stroke survivors for the impact of fatigue. The insights gained here should be used to inform the development of management techniques and interventions to reduce the impact of post-stroke fatigue.

Key points
 The reported impact of post-stroke fatigue was high, even though overall stroke severity was relatively mild.
 Instrumental activities of daily living, leisure activities, social relationships and work life were all affected by fatigue.
 Stroke survivors felt ill-equipped for the day-to-day impact of fatigue on their lives and often struggled to adapt.
 Few participants had received any education or preparation relating to post-stroke fatigue.
 There is a need for timely information on fatigue to equip staff members and prepare stroke survivors and their families for its impact.
 Effective management techniques and interventions need to be developed, informed by the insights gained from this study.