Exploring the experience of post-stroke fatigue in community dwelling stroke survivors: a prospective qualitative study

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Disability & Rehabilitation

2012

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© 2012 Informa UK, Ltd.

10.3109/09638288.2011.645111

0963-8288

1464-5165

Disability & Rehabilitation, 2012; 34(16): 1376–1384© 2012 Informa UK, Ltd.ISSN 0963-8288 print/ISSN 1464-5165 onlineDOI: 10.3109/09638288.2011.645111

02 May 2011

20 November 2011

25 November 2011

Purpose: To explore the experience of post-stroke fatigue in community-dwelling stroke survivors with and without post-stroke mood disturbance within one year of stroke. Methods: This was a prospective qualitative cohort study including semistructured interviews undertaken at baseline (stroke onset), 3, 6, 9 and 12 months in 23 stroke survivors; eight single interviews were held with “supplementary” participants. Qualitative data analysis involved an inductive thematic approach using a process of constant comparison. Results: Thirty-one participants (17 men, 14 women; age range 37–94 years) took part in 122 interviews. The majority of participants was independent and experienced few major depressive symptoms. Three trajectories emerged regarding the participants’ experiences of fatigue including experience of fatigue, coping strategies and knowledge. Conclusions: The results of this study suggest that in spite of reasonable objective physical recovery post-stroke, fatigue in community-dwelling stroke survivors may be disabling. The use of qualitative methodology was sensitive in identifying the factors that play a role in the experience of fatigue. The essential role of health professionals in this context is to provide support and education regarding fatigue and to promote participation after stroke in therapy programs. Routine practice for stroke services should include fatigue advice prior to discharge.

Keywords: Fatigue, qualitative, rehabilitation, stroke, stroke outcomes

Introduction

Fatigue after stroke is a common symptom with prevalence ranging from 16% to 70% [1]. Fatigue has been attributed to physiological, social, emotional, behavioral and cogni-tive processes following stroke, leading to the experience of changes in lifestyle and community participation [2–7]. There is uncertainty surrounding the cause and manage-ment of post-stroke fatigue which poses a challenge to health professionals. This is a significant health concern as the experience of fatigue has been associated with reduced participation in rehabilitation programs [3,5,8–10], reduced quality of life (QOL) [9,11–13], dependency [4,13–16], institutionalization [4], social isolation[14,15] and increased mortality [4,8,14].

RESEARCH PAPER

Exploring the experience of post-stroke fatigue in community dwelling stroke survivors: a prospective qualitative study

Jennifer Helen White1, Kimberley R. Gray2, Parker Magin3, John Attia4, Jonathan Sturm5, Gregory Carter6 & Michael Pollack1

1Hunter New England Area Health Service, Hunter Stroke Service, Hunter Region Mail Centre, Newcaste, Australia, 2Occupational Therapy Department, Westmead Hospital, Auburn, Sydney, Australia, 3University of Newcastle, Primary Health Care Research and Evaluation Development Program, University Drive, Callaghan, Newcastle, Australia, 4Centre for Clinical Epidemiology and Biostatistics, University of Newcastle, University Dr, Callaghan, Newcastle, Australia, 5Gosford Hospital, Northern Sydney Central Coast Area Health Service, Gosford, Australia, and 6Calvary Mater, Hunter New England Area Health Service, Hunter Region Mail Centre, Newcastle, Australia

Correspondence: Jennifer Helen White, MMSc (OT), Hunter Stroke Service, Level 2, The Lodge, Locked Bag No 1, Hunter Region Mail Centre, New South Wales 2310. Tel: 02 4921 4837. Fax: 02 4021 4833. E-mail: [email protected]

Issues regarding fatigue are of major importance to •stroke survivors.Allied health can play a significant role in providing •training regarding management of fatigue symptoms to assist maintain community participation.Allied health professions have an important role •in assisting stroke survivors to transition through feelings of loss and in providing education concern-ing new skills to assist manage symptoms of fatigue post-stroke.

Implications for Rehabilitation

(Accepted November 2011)

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Experience of post-stroke fatigue in stroke survivors 1377


The fatigue experience is subjective and its measure-ment post-stroke is complicated by the lack of an accepted definition and the inherent subjectivity of the experience for individuals [14]. There is no widely accepted definition of post-stroke fatigue. Bogousslavsky’s definition of post-stroke fatigue as “a reversible decrease or loss of abilities associated with a heightened sensation of physical or mental strain even without conspicuous effort, due to an overwhelming feeling of exhaustion, which leads to an inability to sustain or difficulty in sustaining even routine activities” [3] (p. 1050) is compre-hensive, incorporating both physical and mental impacts and was used to guide considerations of experiences of fatigue in this study.

Post-stroke fatigue is influenced by many factors such as general health, the experience of comorbidities and the coexistence of physical impairments [14]. Furthermore it is difficult to distinguish between fatigue and post-stroke depression (PSD) due to the overlap of symptoms [17]. Fatigue is commonly seen as a symptom of depression rather than as an independent symptom [16,17]; indeed, fatigue is listed as one of the Diagnostic and Statistic Manual criteria for clinical depression [18]. However, there is increasing research indicating that post-stroke fatigue occurs independently from PSD [6,17,19]. Van de Werf [17] estimated that the preva-lence of fatigue without depression was 30%. Colle et al. [4] found that only 38% of fatigued participants also experienced depression.

Traditionally, fatigue has been associated with increased subjective physical effort to perform daily activities in the con-text of residual disabilities. For example, several studies have demonstrated an association between fatigue and increased Modifed Rankin Scale (mRS) and disability [20]. However, there is growing evidence outlining the persisting impact of post-stroke fatigue in stroke survivors (with or without residual symptoms) and its impact on QOL [8,13].

There is insufficient evidence within the literature to rec-ommend any treatments to overcome or manage post-stroke fatigue [1,4,14]. The subjective nature of fatigue is also prob-lematic in treating fatigue in other chronic disease groups, thus the symptom is often ignored. However, the National Stroke Foundation Clinical Guidelines [21] suggest that edu-cation be provided to stroke survivors on the possible benefits of exercise and healthy sleep patterns.

Much research has focused on determining the prevalence of post-stroke fatigue. However, questions remain regarding variation in intensity and the individual’s experience of fatigue post-stroke [16]. Longitudinal qualitative research methods can be applied to assist the understanding of the complexity of the experience of post-stroke fatigue. To date, cross-sectional qualitative studies exploring post-stroke fatigue have identi-fied that survivors feel ill-equipped for the impact of fatigue on their cognition, engagement in meaningful activities and life roles [12,22,23]. Furthermore, stroke survivors managed their fatigue using exercise and assistive technology [23]. However, these studies have been limited to people with milder stroke who are one year post stroke. In addition, the use of focus group methodology may limit exploration of temporal pat-terns in fatigue post-stroke.

Longitudinal qualitative research methods can be applied to assist the understanding of the complexity of life after stroke and how people approach lifestyle changes. As part of a broader research program we have undertaken a longi-tudinal qualitative study exploring psychological morbidity post-stroke and its determinants and consequences [24]. The prominent theme of fatigue after stroke emerged early via the study’s iterative methodology. The aim of the current article is to present results regarding the experience of fatigue post-stroke.

Methods

This was a prospective qualitative study, expanded to include a number of supplementary cross-sectional interviews, involv-ing individual semistructured interviews with stroke survi-vors. Participants for both longitudinal and cross-sectional aspects of this qualitative study were identified from a larger, longitudinal quantitative study of 134 stroke survivors [24]. Ethical approval for this project was obtained from Hunter New England Human Ethics Research Committee.

Participants in that quantitative study [24] were identified from consecutive admissions following stroke onset in two tertiary referral hospitals servicing residents of the Hunter Valley within New South Wales, Australia. Inclusion crite-ria were: hospital admission and history and examination consistent with stroke. Participants were excluded if they had significant cognitive impairment (Mini-Mental State Examination Score ≤ 24) [25] or were unable to communicate sufficiently to participate in an interview as determined by a speech pathologist. Exclusion was determined at baseline quantitative face-to-face interview. Consenting participants were interviewed at baseline, 3, 6, 9 and 12 months between January 2008 and July 2011. Supplementary interviews were conducted in March 2010.

SamplingParticipants in the broader quantitative study (n = 134) were invited to participate in a qualitative study [24]. Participants were provided with an information letter and a short list of demographic questions during hospital admission or by mail. This information was used to purpo-sively select participants with varying age, gender, stroke subtype (Oxfordshire Classification System [26], stroke severity [using the mRS [27]]) and living circumstances for qualitative interviews in order to obtain as heterogeneous a sample as possible (rather than attempting to achieve a “representative” sample) [28]. Recruitment continued until thematic saturation (a situation of no new themes emerging around the principal study aim of exploring psychological morbidity) [29] had been achieved. This occurred after 23 baseline interviews had been completed and no further participants were recruited to the longitudinal study. Due to the iterative nature of the longitudinal study there was the possibility for further themes to emerge in interviews subsequent to achieving thematic saturation of the princi-pal study aim. Therefore, there was provision for further sampling to be done, if required, to explore in targeted

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1378 J. H. White et al.


interviews any subsidiary themes. The theme of post-stroke fatigue (fatigue unassociated with PSD) emerged post-cessation of recruitment to the longitudinal study. Although exploration of the theme of fatigue continued in the interviews with the 23 participants in the longitudinal study (consistent with the iterative methodology of the study), we conducted further sampling for targeted single interviews (n = 8) specifically exploring the theme of post-stroke fatigue. Participants were sampled from the larger quantitative study, using a purposive sampling technique based on the procedure used for the initial 23 qualitative participants. Supplementary sampling continued until thematic saturation had been achieved [29] (in combined data from both the cohort and supplementary interviews) concerning the theme of fatigue.

All participants met the inclusion criteria, provided writ-ten consent and chose to be interviewed in their own home. Interviews were conducted by the first author (all interviews of the longitudinal study) and second author (supplementary interviews). Consistency between interviews was ensured by the two authors co-conducting the first three of the supple-mentary interviews and by iterative post-interview discussion of interview content and themes.

Data collectionThe duration of the qualitative interviews ranged from 45 to 90 minutes. Interviews were recorded with the participants’ permission and transcribed verbatim, with identifying data removed. A schedule of questions was formulated for initial interviews in the longitudinal study (see Table I). As inter-views were as much as possible informant-led, the adap-tive semistructured format meant the interviews were not restricted to pre-developed questions or themes. The itera-tive process of cumulative and concurrent data collection and analysis within this study, incorporating a process of constant comparison, allowed emergent themes to inform continuing data collection [29,30]. As a result, the interview schedule evolved from interview to interview. For the sup-plementary interviews, a further initial interview schedule was used, concentrating on the experience of fatigue. This interview schedule was also refined in an iterative manner from interview to interview.

Data analysisAn inductive thematic approach was used using modified grounded theory. Analysis involved constant comparison, and concurrent data collection which was cumulative with data analysis (analysis informed data collection in further inter-views). Exploration of longitudinal trends in the data involved a horizontal analysis (across all participants), as well as a verti-cal analysis (temporal analysis within individual participants’ transcripts). Thus we sequentially examined each transcript both in relation to themes and concepts in the cohort as a whole and in temporal relationship to other interviews with the same participant. Trustworthiness of our data was achieved using several strategies, including immersion in data; reflexive analysis, peer debriefing and a search for negative or deviant cases [29,31]. These strategies ensured that the researchers remained open to the data and did not demonstrate bias dur-ing the data analysis as a result of pre-conceptions inherent in the researchers’ clinical status and experience [29,31]. At each time point, two qualitative researchers (Jennifer Helen White and Parker Magin) coded the data independently; this was followed by consensus coding to ensure the codes and themes were grounded in the data. Any disagreements in interpreta-tion were resolved by consensus [28,29] The final application of codes was undertaken with input from all authors.

The initial stage of the coding process used open coding [28,29]. This involved a line-by-line analysis and interpreta-tion of the transcripts that identified a broad range of catego-ries from the data. Each category was issued with a four-letter label or code to facilitate data retrieval between the transcripts (for example, the experience of specific symptoms of fatigue was given the code FATG). Next, axial coding identified the connections among the codes (for example all codes that described the impact of fatigue). The final stage of analysis involved the development of themes which outlined the rela-tionships between fatigue and other post-stroke experience.

Findings

A total of 122 interviews were conducted − 114 interviews were conducted with the original cohort of 23 participants (several participants did not complete all five interviews, having died or become too ill to continue participation) and eight single interviews were held with “supplementary” participants.

DemographicsKey demographics of the participants are outlined in Table II. All participants had experienced an ischemic stroke within the previous year. Using the mRS [27], 21 participants were classified as independent at baseline and 10 were classified as dependent. Ages ranged from 37 to 94 years.

However, these demographic factors were not strongly linked with reports of fatigue. Other comorbidities (arthritis and heart disease) were present in the majority of participants and residual stroke symptoms had a modest effect on fatigue. However, there were no specific conditions that particularly influenced the experience of fatigue in association with stroke.

Table I. Fatigue interview guide (all interviews).Initial experience of stroke• How did the stroke affect you? Has your sleep been different since your

stroke? How?Experiences• Have you been more tired since your stroke? When did you first notice

this? Tell me about what happens when you feel tired?• When in your day are you most tired? How does tiredness impact you?

How does it make you feel? Is there anything you can no longer do because you get so tired?

• Have you ever received information about fatigue after a stroke?Adjustments• With the tiredness you are currently experiencing how do you feel about

your current level of social activity, ability to look after yourself, ability to do the things you want to?

• Have you found anything that helps you manage your tiredness?

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Distinct qualitative themes emerged in participants’ expe-riences of fatigue post-stroke and their adjustment to symp-toms of fatigue. The identified themes were: the impact of fatigue on lifestyle, coping strategies and knowledge. Themes are presented with example quotes and participant quotes come from the longitudinal-study participants unless labeled “cross-sectional.”

Theme 1: The impact of fatigue on lifestyle Onset and progressionThe onset and progression of fatigue were an individual experience for participants, being influenced by individual experience of ongoing residual symptoms, age, experience of comorbidities, frailty due to aging and social circum-stances. However, all participants reported that their symp-toms of fatigue first became evident during their hospital admission, and “right from the word go” (Participant 8, female, age 87, cross-sectional interview at 9 months) or soon after.

“Oh, virtually straight away you know when I was in the hospital.”(Participant 4, male, age 78, cross-sectional interview at 9

months)

The extent of fatigue, however, was most noticeable in interviews conducted soon after discharge home (or subse-quent to discharge when participants attempted to resume their pre-stroke lifestyle). The impact on role loss was not realized until discharge home, or after, when there was a greater desire and necessity to undertake activities of daily living and social activities. Whereas all participants were independent in self-care, on discharge their experiences of fatigue, in the absence of significant disability, limited their ability to resume previously valued activities. Role loss was experienced on a continuum; however, over time partici-pants learned to accommodate for individual exacerbators of fatigue symptoms which helped lessen the impact of fatigue. Typically, following the first few months after discharge participants began to alter their daily routines and to adapt to their symptoms of fatigue. Participant responses suggest that fatigue did not worsen during the first year, however, the extent to which this was achieved varied depending on the amount of residual disability, living situations, age and dis-ability levels. For some it stayed the same:

“It’s [the fatigue] about the same as when I came home.”(Participant 4, male, age 78, interview at 9 months)

Table II. Demographics.Participant number Sex Age Country of origin OSCP Living situation Marital status1 M 68 Indian POCI Carer of spouse Divorced2 F 92 British PACI Lives alone Widowed3 F 69 Australian LACI Lives with spouse Married4 M 78 Australian PACI Lives with spouse Married5 F 72 Australian POCI Lives alone Widowed6 M 64 Australian PACI Lives alone Single7 M 77 Australian POCI Lives with family Married8 F 87 Australian TACI Lives alone Widowed9 F 50 Australian POCI Lives alone Single10 M 84 Australian LACI Carer of spouse Married11 F 70 Australian PACI Lives with spouse Married12 M 59 Australian PACI Lives alone Widowed13 M 65 Australian PACI Lives with spouse Married14 M 94 Australian PACI Lives alone Widowed15 F 62 Australian POCI Lives with spouse Married16 M 70 Australian PACI Lives with spouse DeFacto17 F 37 Australian PACI Lives with others Single18 M 76 Australian PACI Lives alone Engaged19 F 62 Australian PACI Lives alone Divorced20 M 87 Czechoslovakian PACI Lives with spouse Married21 F 93 Australian TACI Nursing home post-stroke Widowed22 F 82 German TACI Nursing home post-stroke Widowed23 F 77 Australian PACI Lives alone Widowed24 F 53 Australian POCI Lives with spouse Married25 M 56 Australian LACI Lives alone Single26 M 89 Australian PACI Carer of spouse Married27 M 65 Australian LACI Lives alone Divorced28 M 72 Austrian LACI Lives with spouse Married29 M 62 Australian TACI Lives with spouse Married30 F 76 Italian PACI Lives with spouse Married31 M 72 Australian LACI Lives with spouse MarriedOSCP, Oxfordshire Community Stroke Classification [27]; POCI, Posterior circulation infarction; PACI, Partial anterior circulation infarction; TACI, Total anterior circulation infarction; LACI, Lacunar infarction.

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In fact, a few participants reported improvement in their energy levels by the end of the first year.

“I’m still getting tired, but not as tired as I was.”(Participant 9, female, age 50, interview at 6 months)

Changes to valued rolesFatigue was an unseen symptom in comparison to the experi-ence of ongoing residual symptoms and was subsequently a challenge for participants. All participants spoke of how their symptoms of fatigue were experienced as a continuum from lesser to greater role restrictions and loss.

“I used to do a lot of things… now I do nothing.”(Participant 3, female, age 69, cross-sectional interview at 12

months)

For some participants the experience of fatigue had a most profound impact on roles on any given day.

“Some days you wake up and you’ve got no energy, it takes you all the time to put one leg in front of the other...all you can do is just lay around and wait for it to go.”

(Participant 5, female, age 72, cross-sectional interview at 12 months)

Overall fatigue had a debilitating effect that was unpre-dictable. Some participants felt “a bit tired nearly every day” (Participant 2, female, age 92, cross-sectional interview at 9 months) whereas others found fatigue was variable and “happened on and off ” (Participant 5, female, age 72, cross-sectional interview at 12 months). This meant that the extent of ability to participate in valued roles varied from day to day and, for most, remained an issue throughout the year.

This uncertainty about the level of fatigue that could be experienced on any given day was a significant barrier to planning ahead for social interaction. This was underpinned by the need to be flexible and guided by levels of fatigue.

“Someone might say, “Would you like to go to so and so”, and I’d before say “yes”. All I can do now is say “yes, but providing that I’m fine” and they accept that.”


Cognition and language were also affected by fatigue in many participants, further impacting on social participation.

“I just get tired and I don’t think right… I don’t think straight.”(Participant 8, female, age 87, cross-sectional interview at 9

months)“Yes, sometimes when I’m tired...yes, [usually] later in the

afternoon...I make mistakes with words.”(Participant 23, female, age 77, baseline interview)

Safety consideration also influenced role performance as fatigue often exacerbated residual physical stroke symptoms such as ataxia. This required them to make modifications to maximize safety.

“I find that when I get tired I...start to get you know, wobbly and lose my balance.”

(Participant 12, male, age 59, interview at 3 months)

Physical exertion often exacerbated symptoms of fatigue. For example, one participant identified that she “got tired very quickly” (Participant 5, female, age 72, cross-sectional interview at 12 months) after participating in physiotherapy sessions.

Partly attributable to fatigue, role loss continued over the first year. In fact participants expressed concern about the potential long-term implications of fatigue, for example, “sleeping for the rest of my life” (Participant 3, female, age 69, cross-sectional interview at 12 months). Participants’ positions on this continuum of role loss were seen to be modulated by various factors. The ability to prioritize ongoing participation in valued activities over the longer term was dependent on how participants managed their symptoms. Participants began to instigate strategies on return home to ensure that participation in valued activities was maintained; however, some roles were permanently forgone, such as gardening and playing bowls.

Relationship of fatigue and mood disturbanceAs a result of fatigue and role loss, participants experienced an array of emotions such as guilt, dependency and altered self-esteem. Initially guilt was identified due to an inability to perform pre-stroke roles. These feelings of guilt were compounded for some participants who were concerned that they were not as emotionally available to their loved ones as prior to the stroke, due to their fatigue or need to sleep more.

“It [fatigue] makes me a very boring person. I sleep most of the day and um go to bed early at night.”


Guilt was linked to feelings of dependency which were identified when participants were required to rely on other people for assistance due to their fatigue.

As participants gradually returned to aspects of their pre-stroke lifestyle, fatigue remained an ongoing issue and impacted on self-esteem. There was a common link between fatigue, altered self-esteem and feeling “useless” (Participant 7, male, age 77, cross-sectional interview at 9 months) or feel-ing “disappointed at myself ” (Participant 8, female, age 87, cross-sectional interview at 9 months) due to their inability to perform valued roles.

Altered mood was also influenced by a sense of stigma experienced by participants because of their fatigue. This phenomenon was most evident in participants who appeared to have recovered but had ongoing limitations due to fatigue and experienced stigmatization from the broader community. As a result participants felt “self consciousness” (Participant 6, male, age 64, cross-sectional interview at 9 months) and the need to “cover up” (Participant 1, male, age 68, cross-sectional interview at 12 months) when they struggled to engage in activities due to fatigue.

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These expressions by participants were suggestive of mood disturbance causally associated, in the participants’ assess-ments, with the experience of fatigue.

“It gets you down…I feel tired and I can’t do my work as I should do you know.”(Participant 2, female, age 92, cross-sectional interview at 9

months)

The relationship among stroke, fatigue and mood distur-bance was not clear cut. It was apparent that many partici-pants had difficulty in dealing with the consequences of their fatigue and the subsequent role loss. As a result, the experi-ence of fatigue and subsequent role loss was felt to contribute to mood disturbance rather than, conversely, fatigue being a somatic manifestation of depression.

“I’ve got no energy to do things. And that’s stopped me being mo-tivated.”


Theme 2: Coping strategies Fatigue management strategiesIn order to cope with the role limitations caused by fatigue, participants developed numerous strategies to assist them manage their symptoms. For some participants this involved a trial of modifications to their daily routines in order to com-plete valued roles.

“I do a little bit less some days than what I would do, and what I don’t do that day I do the next day.”


Though prior planning and scheduling were most frequently employed, most participants reported the need to be flexible with their daily routines. Due to the fluctuating nature of fatigue, participants often had to adjust their routine on a daily basis. This strategy was readily adopted within the first few months.

“I’m not going walking today, because I’m not up to it. Well, I’m very tired from what I did yesterday.”

(Participant 23, female, age 77, interview at 6 months)

Furthermore, pacing activities throughout the day and around rest times were also used to allow participants to complete their activities on days they were experiencing symptoms. This strat-egy took time to develop as each participant experimented with what they could and could not achieve on a given day.

“I can get tired so have to leave things till later and then and when I felt better, I can do it.”


Many participants consciously incorporated energy-con-servation principles into their daily routines as they learned from their post-stroke experiences. No participant received health professional advice regarding energy-conservation principles. One common strategy identified by participants was the need to “rest the day after” having a big day (Participant 2, female, age 92, cross-sectional interview at 9 months).

Participants quickly recognized the need for recovery from exertion-related post-stroke fatigue.

“I have noticed that when I do a couple of hard days’ work I am taking longer to recover from it…”


Or, alternatively, rather than resting after a day’s exertion participants would anticipate the demanding day and rest beforehand.

“It just means having a quiet day today so you can have a bigger day tomorrow.”


Another related strategy used by many participants was the incorporation of rest and sleep into the daily schedule. Many participants identified that it was important to have a “good rest every day” (Participant 19, female, age 62, interview at 3 months).

“If I’m tired, I just don’t fight it, I just go and have a lay down and within an hour I’m fine again, and I just get up and continue on.”


The time of a day the rest was needed appeared dependent on the energy expended on a given day.

“Well, when I come in from shopping I put the groceries away … (then) I go to bed and I might stay there until 4.00 o’clock you know.”


However, several participants recognized that if they slept during the day “it’s going to stop you from sleeping at the night time” (Participant 6, male, age 64, cross-sectional interview at 9 months).

There was a link between fatigue and altered sleep patterns following stroke. The need to rest was unrelated to the experi-ence of any increased effort to compensate for residual stroke symptoms.

The adaptive strategies described, though maintained over time, were used less frequently if symp-

toms of fatigue improved. Participants who experienced per-sisting symptoms over the year gradually became resigned to role loss and focused their energy on roles of a higher priority. This required the participants to alter their expectations of themselves.

“I mean, it may not be this morning or it may not be tomorrow, but it will be a day or two and it’s done…. it’s got to be put on the backburner until I’m well enough to do it.”


Altered expectationsAdjustment to fatigue took time. Initially the experi-ence of fatigue was a shock and had a negative impact on functioning.

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“I feel like I’ve been hit by a bus, you know, it’s just knocked me about.”


However, over time there was a common experience of acceptance and adjustment to fatigue which was concomitant with altered expectations. Altered expectations were closely linked to developing an altered life perspective. This was characterized by having fewer expectations of themselves (inherent in strategies to preserve limited energy) but still maintaining motivation to maximize their functional per-formance. Participants with greater insight into their abilities and limitations appeared more able to effectively problem-solve barriers in order to accomplish a desired task. This led to enhanced feelings of independence and choice, which assisted participants to accept the need for an altered perspective that maintained motivation. Furthermore, it was seen that moti-vation was enhanced using positive self-talk to “motivate yourself to do it” (Participant 1, male, age 68, cross-sectional interview at 12 months) and “get on with it”. (Participant 5, female, age 72, cross-sectional interview at 12 months). Most participants were determined to “not give up” (Participant 1, male, age 68, cross-sectional interview at 12 months) and per-severe through the symptoms of fatigue in order to maintain participation in valued roles.

“It’s a battle of the wills (laughs), yes it is…. I make myself do it, no matter how tired I am.”


Altered expectations appeared to assist participants accept their altered lifestyle and stop “battling” themselves (Participant 8, female, age 87, interview at 9 months).

“It’s just that you just work around being tired… Because I can’t do a thing about it… I just do what I can.”


Theme 3: KnowledgeMost participants were unprepared for the experience of fatigue and its impacts on life. The time taken to adjust to fatigue was influenced by the knowledge or lack of knowl-edge about how to deal with the symptoms. Most participants lacked knowledge about fatigue at baseline and only one of the participants had been prepared by inpatient health profes-sionals (prior to discharge) for the likelihood of the experi-ence of fatigue and the need to rest.

“They explain about a lot of things… if you get tired get rest.”(Participant 1, male, age 68, cross-sectional interview at 12

months)

The rest of the participants received no advice before discharge. This lack of knowledge about fatigue led to sig-nificant confusion concerning their experience of fatigue. Within the first few months of discharge participants reported not being able to “explain” (Participant 26, male, age 89, interview at 3 months) the reasons for getting tired

“without doing anything” (Participant 11, female, age 70, interview at 3 months).

As a result participants were left to struggle alone with how to manage symptoms of fatigue.

“Oh no [I have found], nothing [to help manage fatigue symp-toms].”


Within a few months of discharge, a few participants subsequently sought the advice of health professionals (a general practitioner or physiotherapist) to validate their experience and gain insight into their fatigue. However, often the answers provided by the health profession-als were insufficient and ineffective and did not build on knowledge.

“No I went couple of times [to the doctor]… he put it down to get-ting older or something like [that]… I [then asked the] physiothera-pist [but all they said was] do more exercise”

(Participant 1, male, age 68, cross-sectional interview at 6 months)

“My specialist wiped it off [and didn’t answer me]”(Participant 3, female, age 69, cross-sectional interview at 12

months)

This led to many patients completing their own investi-gations about fatigue. As a result of their individual experi-ences of fatigue they developed knowledge about how to self-manage their fatigue and this led them to adapt their lives independently of the health professionals. For example, one participant reported to adjust their medication without seek-ing medical advice.

“I didn’t like the last medication I was on... it made me a little bit woozy and tired…. so I cut it out.”


Overall, lack of knowledge led to ongoing distress and participants did not know if they were going to “get worse” (Participant 9, female, age 50, interview at 6 months). One participant was conscious about continually “running to doc-tor and doctor” (Participant 1, male, age 68 cross-sectional interview at 6 months) to alleviate his concerns about fatigue. Distress gradually lessened over time as participants learned to self-manage their symptoms.

Discussion

This is the first study presenting longitudinal data on the impact of fatigue in community-dwelling Australian stroke survivors. The strength of this study is the use of a longitu-dinal, modified grounded theory qualitative methodology, supplemented by data from further targeted cross-sectional interviews, in documenting the common experience of fatigue and the need for stroke survivors to adapt their daily life and routine in order to facilitate continued engagement in valued activities. Using this methodology, three principal themes

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emerged: the impact of fatigue on lifestyle, coping strategies and knowledge.

Post-stroke fatigue in our participants resulted in role loss. This is consistent with other studies which identify fatigue as one of the most significant barriers to participation in reha-bilitation programs and the resumption of previous activities [5,8–10]. However, our study highlights that the development of coping strategies was beneficial in maintaining role perfor-mance. This is consistent with our previous findings of bet-ter outcomes in stroke survivors who are more resilient [24]. Coping strategies identified in this study included pacing, energy conservation and incorporating rest and are consistent with previous research [23]. Additionally, however, our find-ings suggest that adaption to fatigue occurs and that fatigue symptoms do not worsen over time.

The time taken to adjust to fatigue was associated with poor knowledge about symptoms of post-stroke fatigue. Stroke sur-vivors’ poor knowledge regarding fatigue resulted in confusion and distress. Education regarding fatigue was not provided to our participants. A result was some participants developing self-management strategies, including modification to their medication regimens. Our study suggests the need for educa-tion interventions to prepare stroke survivors for fatigue and to minimize distress [10] Allied health professions could assist stroke survivors prepare for the potential impacts of post-stroke fatigue and incorporate education into rehabilitation plans. This may include counseling of stroke survivors and their families in the inpatient and rehabilitation settings and the development of community programs. Though they may need to consider other conditions which may affect fatigue [20,32] (such as sleep apnea, poor diabetes control, heart disease and medication side-effects). Overall, there is some reassurance for patients and their clinicians in that fatigue in participants in our study did worsen over time.

An increased availability of community-based rehabilita-tion to monitor the impact of fatigue on independence and participation in meaningful activity has been suggested to optimize outcomes in the long-term stroke survivor [33,34], underpinned by the impact of post-stroke fatigue on stroke survivors who are recovered and non-recovered [3,6,22,33]. Our study’s participants experienced mild to moderate dis-ability (one of our inclusion criteria, as measured by the mRS). They experienced fatigue, however, independent of disability levels. However, more research into post-stroke fatigue is needed in more severely disabled stroke survivors. It may be expected that fatigue would be an even more significant issue for more severely disabled stroke patients. An additional limitation of our study is our exclusion criteria of post-stroke cognitive or language impairment. The experience of post-stroke fatigue may be different in these groups.

Our participants resorted to self-devised strategies to cope with fatigue. Other interventions such pet therapy, stress reduction, relaxation and cognitive behavioral therapy have been successfully implemented within other populations experiencing fatigue, such as AIDS, multiple sclerosis and cancer [35]. The strategies identified in this study, as well as strategies used in other chronic disease groups, require fur-ther study to design and trial appropriate interventions.

In previous studies the true experience of fatigue has been difficult to elucidate when depression is present due to the overlap of symptoms [36]. In this study, participant responses suggested fatigue was experienced independently of depres-sion. This is an important finding and supports the need for more research regarding management of fatigue as a symptom independent of mood disturbance.

Conclusion

The results of this study suggest that in spite of reasonable objective physical recovery post-stroke, fatigue in communi-ty-dwelling stroke survivors may be disabling. The use of a qualitative methodology was sensitive in identifying the fac-tors that play a role in the experience of fatigue. Monitoring of fatigue in stroke survivors should be a higher priority for stroke clinicians who play an important role in providing education and interventions to support stroke survivors in the management of fatigue post-stroke. Routine practice for stroke services should include fatigue advice prior to discharge.

Acknowledgments

This work was supported by grants from the John Hunter Hospital Charitable Trust. J.W. was the recipient of the Barker Scholarship. We thank all the participants in the study and the Hunter Stroke Service and the University of Newcastle who also supported the study.No commercial party having a direct financial interest in the results of the research supporting this article has or will con-fer a benefit upon the authors or upon any organization with which the authors are associated.

Declaration of Interest: The authors report no conflict of interest.

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Exploring the experience of post-stroke fatigue in community dwelling stroke survivors: a prospective qualitative study