RESEARCH ARTICLE

Post-Stroke Fatigue: Qualitative Study of Three Focus Groups

Nancy A. Flinn1* & Jan E. Stube2
1 2

Occupational Science and Occupational Therapy Department, College of St. Catherine, St. Paul, Minnesota, USA Department of Occupational Therapy, University of North Dakota, Grand Forks, North Dakota, USA

Abstract Fatigue affects many persons after cerebrovascular accident, particularly those with mild stroke. A qualitative methodology using focus groups with 19 community-living post-stroke survivors was utilized to explore the occupational impact of fatigue as communicated by the participants. Although self-report of a small sample of the United States post-stroke population will have limitations in generalizability, this study identies specic health-related quality of life issues that can occur with post-stroke fatigue. The participants felt unprepared for the fatigue phenomenon and struggled to adapt, with fatigue having a debilitating inuence upon daily occupational performance and roles, including social participation, return to work, driving, reading and sleeping. The participants indicated that exercise (such as walking and water aerobics) and use of assistive technology were helpful strategies in reducing fatigue. The occupational performance and role impact identied by participants in this study can inform the design of effective occupational therapy interventions and further quantitative study of persons with post-stroke fatigue. Copyright 2009 John Wiley & Sons, Ltd.
Keywords fatigue; quality of life; stroke *Correspondence Nancy A. Flinn, Occupational Science and Occupational Therapy Department, College of St. Catherine, 2004 Randolph Avenue, St. Paul, MN 55105, USA. Email: nainn@stkate.edu

Published online 28 September 2009 in Wiley InterScience (www.interscience.wiley.com) DOI: 10.1002/oti.286

Introduction
The symptom of post-stroke fatigue has only been recognized in the last 10 years, with rates of incidence varying from 39% to 72% (Ingles et al., 1999; Glader et al., 2002; Carlsson et al., 2004; Schepers et al., 2006; Christensen et al., 2008). Although there is no gold standard for the measurement of post-stroke fatigue (Winward et al., 2009), several studies measured fatigue using the Fatigue Severity Scale (Krupp et al., 1989; McGeough et al., 2009). Rates of fatigue were found to increase over the rst year after stroke, with 51% of
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stroke survivors complaining of fatigue at admission to inpatient rehabilitation, and 69.5% complaining of fatigue at 1 year post stroke (Schepers et al., 2006.) In one study, 50% of stroke survivors identied fatigue as their main complaint 2 years after stroke, thus emphasizing the longevity of this symptom (van der Werf et al., 2001). Finally, 27% of those experiencing post-stroke fatigue reported experiencing it every day (Ingles et al., 1999). While normal fatigue may be the result of energy expenditure, occurs rapidly, is of short duration and improves with rest (de Groot et al., 2003), post-stroke
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fatigue is characterized by an overwhelming sense of tiredness, exhaustion, lack of energy, or difculties of sustaining routine actions (Naess, Nyland, Thomassen, Aarseth, & Myhr, 2005, p. 245). Post-stroke fatigue has also been described as coming on suddenly without warning (Carlsson et al., 2004) and has been characterized as not improving with rest, being abnormal or excessive, chronic in nature and unrelated to previous exertion levels (Staub and Bogousslavsky, 2001; de Groot et al., 2003). Finally, post-stroke fatigue has been dened as having several components cognitive fatigue, social fatigue and physical fatigue, which may vary by individual (Ingles et al., 1999). Most recently, a case denition of post-stroke fatigue indicated that clinically relevant fatigue also interfered with performance in daily activities (Lynch et al., 2007). The ultimate cause or causes of post-stroke fatigue have not been identied, nor is the relationship to other post-stroke symptoms clear (Christensen et al., 2008; McGeough et al., 2009). Some studies have demonstrated that the occurrence of post-stroke fatigue is independent of depression (Schepers et al., 2006), while another study reported a relationship between the two (van de Port et al., 2007). Other authors have suggested that post-stroke fatigue may be a result of other medical concerns, such as thyroid dysfunction, anemia, renal disease, diabetes, autoimmune diseases, infection or sleep disturbance (van der Werf et al., 2001; Moroz et al., 2004). Finally, it has been suggested that because individuals who have had a stroke compensate for physical or cognitive decits, the extra effort results in severe fatigue (van der Werf et al., 2001). The consequences of post-stroke fatigue include decreased independence in activities of daily living (ADLs) and instrumental activities of daily living (IADLs) such as home management, inability to return to work. In two studies, increased rates of institutionalization and death resulted (Glader et al., 2002; Choi-Kwon et al., 2005;). Barker-Collo et al. (2007) summarized this phenomenon by stating, it has been shown that fatigue is associated with profound deterioration of several aspects of everyday life (p. 1264). Poststroke fatigue appears to be more of a problem for individuals with mild stroke than for those with more signicant stroke, but that may be because fatigue is one of their only limitations (Carlsson et al., 2004). Nevertheless, the symptoms of post-stroke fatigue are debilitating and have signicant occupational performance consequences.
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While post-stroke fatigue has been identied as a signicant consequence of stroke, the literature does not adequately describe how it is experienced by individuals who have had a stroke. Through the use of focus group methodology, this study was designed to qualitatively explore the experience and impact of poststroke fatigue among individuals who had sustained a stroke, were living in the community and were experiencing post-stroke fatigue. As health-care providers concerned with quality of life for stroke survivors, our aim was to better understand the symptom of post-stroke fatigue so that occupational therapy (OT) intervention can best support successful return to occupational performance and routines.

Methods
Research design For this studys exploratory purpose, a focus group qualitative methodology was selected to gather participants experiences of fatigue and the subsequent impact on performance in daily life. Focus groups were employed because of the potential for eliciting rich descriptions of fatigue as a phenomenon in a context of group discussion which facilitates the opportunity for group members to react to each other and build meaning (Stewart and Shamdasani, 1990; Creswell, 1998; Kreuger and Casey, 2000; Patton, 2002; Berg, 2004). Institutional Review Board approval was obtained from each researchers academic institution and all participants gave written informed consent prior to their focus group participation. The OT faculty researchers assured participants of their condentiality and the voluntary nature of their participation.

Participants and context The researchers sought to interview male and female adults post-stroke who were beyond the acute care phase of stroke rehabilitation, living within their communities and able to voluntarily participate in this study. Three separate focus groups were formed by rst securing permission then later meeting with regional Stroke Support Groups in one midwestern state in the United States. Two of the focus groups were held in a larger metropolitan urban city led by one researcher, while the third focus group, led by the second researcher, met in a much smaller city within a rural area of the state. This geographic sampling was planned to obtain
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a broader participant perspective of the phenomenon under study. All three focus groups were held in comfortable meeting rooms in a public building within the respective communities. All study participants completed the informed consent process as explained by the researchers, and were able to sign written consent to participate in this study. A spousal caregiver who attended the support group with his wife (who had a stroke with expressive aphasia and indicated her assent for her husband to participate on her behalf) also signed consent to participate. There were a total of 19 adult participants (i.e., 18 participants with post-stroke fatigue and 1 spousal caregiver). Ten stroke survivors were from an urban setting and eight stroke survivors and one spousal caregiver were from a rural setting. Focus group 1 was held in an urban setting with nine female stroke survivors as participants. Focus group 2 was held in a rural setting with two male and ve female stroke survivors, and one male care provider. Focus group 3 was held in an urban setting with one male and one female stroke survivor. The researchers were impartial in that they had only one prior introductory visit with the focus group participants and had no other familiarity with the individuals. Both researchers have clinical backgrounds in rehabilitation for persons with post-stroke and have OT educational experiences at the graduate level, including conducting qualitative outcome research projects.

documents by the researchers. Written notes which were taken during the session provided an additional source of comparison and audit trail. Member checking is not a technique used in focus group research (Krueger, 1998); instead, a verbal summary at the end of each focus group was provided with the opportunity for participants to correct or add details to the record. The interviews in each focus group were conducted with care to promote candid discussion (e.g., use of open-ended questions) and to protect participant selfdisclosure (e.g., non-threatening, respectful questioning technique; conrming responses; assurances of anonymity). Questions asked during the interview were kept consistent across the three focus group sessions for reliability purposes. The interviewing technique consisted of using semi-structured interview guide questions with probing questions included when necessary (Stewart and Shamdasani, 1990; Krueger, 1998; Kreuger and Casey, 2000; Patton, 2002). The interview guide questions were designed collaboratively by both researchers prior to the focus group interviews, based on an exploratory literature review of post-stroke fatigue and preliminary ndings relative to symptoms (see Table 1). Verbal summaries or restatement of the data were presented during the focus groups, and participants responses to those summaries were included in the transcripts.

Data analysis At the completion of the three focus groups (i.e., 2 urban settings and 1 rural), the anonymous and verbatim transcriptions were exchanged between the OT researchers. An initial peer debrieng session was held between the researchers to establish the plan for analysis, including the use of Microsoft Ofce Excel 2003 (Microsoft Corporation, Redmond, WA, USA) as a data management tool. Next, researchers independently coded the transcribed data, developing initial codes and provisional categories. A second peer debriefing session was held when both researchers had completed the initial coding and categorization. At this meeting, agreement on coding and emerging categories took place, with an examination of potential areas of bias and exchange of objective feedback to each other on the analysis process, thus assuring consistency (Newman and Benz, 1998). A third analysis meeting was held at which time close comparison via cross-coding, agreement on nal categories with
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Data collection and procedure Recruitment for this project was performed through researcher presentations at area stroke support groups and the focus groups were subsequently scheduled at a convenient time of the participants choosing. All participants knew the goals of the focus group meeting and were specically invited to participate in this research project. All participants were comfortably seated and refreshments were served. The goals of the focus group and the purposes of the research project were discussed by the researchers, and the written, informed consent process was completed. One 6090-minute interview was held with each of the three focus groups, moderated by the respective researcher, and audiotaped. The three separate audiotapes were transcribed verbatim and checked by the researchers for accuracy and participant anonymity. At this time, all names or identifying information were removed from the transcribed
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Table 1. Interview Guide questions asked within each focus group (1) Please begin by talking about when you rst noticed having fatigue, if at all, after you had a stroke. (Possible probes: Did the amount of fatigue you experienced change over time? Get better? Get worse?) (2) What is fatigue after stroke like for you? (3) What were the biggest problems that fatigue created for you? (Possible probe: did it prevent you from doing anything you really wanted to do?) (4) Was there anything that you did that helped with your fatigue? (5) Was there anything anyone else did that helped with your fatigue (i.e., family, physician, therapist, or other health professional)? (Conversely, was there anyone or anything that was particularly unhelpful in helping you deal with the issue of fatigue?) (6) Did anyone talk with you about the issue of fatigue after stroke? (7) Did you feel that your family understood your issue of fatigue? (8) Did you feel that others family, physician, therapist, or other health professional understood your issues with fatigue? (9) Did anyone offer you advice about dealing with fatigue? What was it? Did it help? (10) If there was one thing that someone could have done/said to help you with your fatigue, what was it or what would it be? (11) Thank you for your participation! Have we missed anything that you would like to add?

subcategories and placement of the data into a master, expanded format was accomplished. Throughout the analysis process, when differences were observed in the separately coded data, the researchers returned to the original narrative transcripts and the visual categorical display afforded by the Microsoft Ofce Excel 2003 spreadsheets to reach agreement, carefully examining any source of potential bias. At a nal consensus meeting, themes and the essence of the experience of post-stroke fatigue were identied; the researchers again rechecked that the ndings were imbedded within the participant data. In summary, a content analysis approach was used to provide structure for the predominantly inductive process of developing the nal themes descriptive of the post-stroke fatigue phenomenon experienced by this studys participants (Rubin and Rubin, 1995; Creswell, 1998; Patton, 2002; Berg, 2004). Researchers took care throughout the analysis process to compare the individual coding of each of the three focus group transcripts for triangulation of the data. For trustworthiness, categories and subcategories were not included unless quotes substantiating each category could be found verbatim within each of the three focus group transcripts (Krueger, 1998). Illustrative quotations across each focus group are provided within the Results section for reader scrutiny. In order to minimize bias and ensure authenticity and accuracy during the entire analysis process, the researchers returned to the data repeatedly to conrm the emerging ndings. Through the analysis of individual quotes, which could be viewed individually or within context of the complete focus group transcript, the researchers were able to review the data both within the narrative
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and within sorted categories. The use of computer programs such as Microsoft Ofce Excel 2003 and Inspiration 8 (Inspiration Software, Inc., Beaverton, OR, USA) aided greatly in minimizing bias, promoting rigor and facilitating the analysis process.

Results
As the researchers reviewed transcripts from the three groups, four common themes emerged regarding the impact of post-stroke fatigue including the lack of preparation for fatigue that they and their families received, the continuous search for the cause of fatigue and social validation, fatigues impact on occupational performance and last, participants attempts to cope and adapt in occupational performance. While other minor themes also emerged, only themes that were present in all three focus groups will be discussed. In each focus group, participants felt it was important to describe the unique characteristics of post-stroke fatigue, using daily activities as examples of its overwhelming impact. Unique nature of post-stroke fatigue The focus group participants were very clear that their experiences of fatigue post-stroke were different than their experiences of fatigue prior to stroke. They struggled with describing that to others, and often used the limitations imposed by the fatigue to dene it. The following participant quotes provide depictions of poststroke fatigue: And when I went back to my neurologist . . . and I said I have . . . mind-numbing fatigue . . . And I asked him about it, and I said Is this normal? And he said he didnt know. Everybody overworks, overdoes things. But now, its a daily type
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of thing. And really, I can work just 30 minutes, and I have to rest . . . which is so unusual. In this studys ndings, illustrated by the previous quote, it becomes increasingly apparent that the participants wanted to understand what they were experiencing and have it diagnosed or explained so that they could know what to do about it.

Theme 1: lack of preparation for fatigue Participants described that they were unprepared for and uneducated about the experience of fatigue. Very rarely, if at all, did health-care professionals prepare the participants or their families for the potential for poststroke fatigue and its occupationally challenging consequences. When the feelings of fatigue emerged, participants were concerned that they had some other physical problem, such as a heart attack or another stroke. They also sought advice and help from professionals, to verify that the fatigue was not related to some other problem and to alleviate their worry, but also to help them deal with the fatigue. There was also concern about acceptable coping techniques; knowing that fatigue is a legitimate symptom affords moving forward towards acceptance and adaptation. The following three quotes indicate the interaction between the lack of information about fatigue and the amount of uncertainty about their own health in the period after their stroke. You know, they [professionals] understand when I tell them, but they dont start off Oh, this is a side effect youll experience . If somebody would have told me that [I would have fatigue] I would have probably not rationalized so much, saying, well, Im getting old. You know. Or maybe Ive got the u, or something with my medication or something like that. You know? You wonder if . . . theres something else wrong. If they would have said Yes, you have these other physical limitations that might get better or worse, but you also might experience this fatigue. All these other things they tell you about, but they dont even mention the fatigue, so when it does happen, youre like, OK, is there something else going on, am I getting sick some other way. Another perspective on this theme was the call for family education. Participants felt that their families required more information about fatigue, particularly regarding the long-term nature of the problem. This theme was found in two of the three focus groups. As one participant stated When I was released from the
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hospital, they said Oh, youll feel tired for a while. My family, like, understood for about 3 months, and then since then, all I get is a hard time. You napped today? What do you mean, you napped today? Just think of all the things you could have been doing instead! I mean I still get it everyday. With lack of validation and education about post-stroke fatigue from their health-care providers, participants in this study were left to speculate as to what they were experiencing, often for great periods of time, with emotional distress, and with incorrect conclusions. Theme 2 portrays the ways in which the stroke survivors sought explanation for their fatigue and their emotional comfort.

Theme 2: the continuous search for the cause of fatigue and social validation The participants wanted to know why they had fatigue. This was an ongoing theme among all three focus groups, with participants suggesting and discussing possible causes for their fatigue. They were very aware of other issues that might contribute to fatigue, such as depression, medication, aging, increased difculty in performing daily physical tasks or other health problems. The participants continued to question the real cause of their fatigue, and to assure that it was because of the stroke and not from another cause needing to be addressed. The following quotes reveal the degree of uncertainty and search for the cause of their fatigue. My doctors usually say, Its a side effect of the medication. And part of me wonders, is it really? I mean, you look at these medications and they have side effects, you know, this long [gestures with hands several feet apart]. But Ive known of other people who have depression, they had a tough time getting up in the morning. And so, thats why I thought maybe that was my problem. I dont know . . . So, I dont know [why Im tired]. Along with the search for an explanation and validation, participants revealed the ways in which poststroke fatigue impacted their daily lives. In the following section, we will examine fatigues impact on performance in areas of occupation through the reported experiences of this studys participants.

Theme 3: fatigues impact on occupational performance Within the areas of occupational performance, this studys participants felt the detrimental effects of fatigue
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socially within family, friend and community spheres. Beyond social participation, IADLs and other occupational participation were also impeded by post-stroke fatigue among this studys participants. Occupations adversely impacted by post-stroke fatigue among this studys participants were: (1) Social participation with friends and family, particularly providing child care; (2) Reading (for personal education or leisure); (3) Work, particularly support for successful job performance; (4) Driving and community mobility, as well as (5) Disturbed sleep/rest patterns. Participant descriptions of occupational challenges are provided in

Table 2 in which particularly illustrative quotes are provided. Listening to the participants voices, there is a clear desire expressed by participants to remain engaged in occupations; frustration and guilt are feelings which they continually combat. It is also clear that occupational dysfunction occurs to varying degrees among individuals. Basic ADLs were generally not impacted by post-stroke fatigue among this studys communityliving participants, with the notable exception of disturbed sleep/rest patterns. At the minimum, quality of life is affected by post-stroke fatigue. At times, the

Table 2. Occupational performance challenges with post-stroke fatigue

Social participation challenges (i.e., friend, family and child care)

Fatigue affecting reading

Barriers to work participation

Fatigue interfering with driving and community mobility Sleep disturbances

There is, I think for me, a social fatigue. If Im in too large a group, you know, Im not usually a quiet person, but Ill just sometimes kind of shut down, and let everybody else talk. Umm. And I dont know if its just too hard to keep track of everything, or whether I just get into myself, Im not sure. And . . . its not that I dont go to social functions. Were in a card club with six couples, so twelve people, and, uhh, the noise level gets so loud and stuff like that, that after a while, it kind of fatigues me, and I dont know if theyve noticed it, but you know, I just draw within myself . . . and so its really the brain, but it affects you socially. When I have my grandchildren, I said, well, Grandmas gotta take a nap, can they go play or do something. So they know that, and uh, Ive got two grandkids coming tonight, and Ill probably go to bed about 9:00, and I say youre on your own. [Theyre] 9 and 10. They watch TV . . . so thats what I do. Im tired and so there isnt as much interaction. I dont do the bedtime stories; I dont do the Oh, lets play out in the park, lets go for a bike ride. . . . Just activities like that. I dont initiate, and if they ask, Ill tell them no sometimes, unless they are real persistent. But I think with the passing of time, I can read probably a chapter in a book without falling asleep. And I do read the whole newspaper; but, now I dont read everything in the newspaper. I close my eyes, and I dont think I fall asleep, but I rest the brain for about 10 minutes, and then I go back to reading as much as I can. I did return to work after about a year, well after about 11 months. And I used to work full time and when I went back to work, I started going in for 2 hours at a time. And Id go home and Id be so exhausted and Id kind of cry to myself Why am I doing this? Why am I doing this? And I wanted to go back to work so it took me six months to get up to working 4 hours a day; and that was all I could do. I had a lot of encouragement to just accept disability and not go back to work. A lot of encouragement. Very little encouragement to go back to work . . . The director of the program I worked for said Why would you want to do a job you cant do? Why would you want to come back to a job you cant do? . . . it was a healthcare provider that I worked for, umm, made it absolutely impossible for me to be there. Physically. Just . . . they made no accommodation for me to get around with a cane. Thered be the vacuum cleaner in the middle of the room. And it was like they were purposely trying to make it extremely difcult for me to walk around in the room that I worked in. And, you know, I lasted there 4 weeks, and they suggested I not come back. I used to have to drive to (city), and I would have to stop at least three or four times and sleep. I thought, I dont dare drive this way. And I would just turn off into a convenience store and rest for about ten minutes because I was nodding off . [How do you cope?] Coffee. And when Im going to drive, and stuff like that, Im so aware of my body now since Ive had the stroke, and . . . Im concerned for my safety, and stuff like that, so if anything, you know, if I get tired, I just pull over. They told me that . . . it was the activity that made me very tired, but, you know, I slept, like 12 or 14 hours a night, and I dont get as tired today as I did initially, umm, but I still need to make sure I rest during the day every day. . . .. Because I can slow down real easily if I dont have something to get to, or . . . I try to keep a positive attitude. Because I know I could sleep 20 hours a day. . . . And I would, if I didnt have activity.

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dysfunction is close to the point of a safety concern, such as in the care of children and when driving, in particular.

Theme 4: making attempts to cope and adapt in occupational performance Despite lack of information, occupational performance challenges in various valued roles and contexts, participants found ways to adapt to their fatigue experience within daily life. Participants in this study described their struggles and attempts to cope with fatigue and the feelings that it produced. Many participants acknowledged that napping during the day was part of their daily routine, although they often expressed feeling guilt about it. For example, one participant stated: And thats what I need. To know that it is okay. You know, because sometimes I feel lazy . . . And I think, Should I still be taking naps? Well, wouldnt I know it if I didnt need it? However, more often their struggle involved learning to rest less and attempting to participate more over time. The following quotes indicate the progression of day sleep patterns and adaptations made since the onset of the stroke. When I was in the hospital they would have to wake me up when they brought in my tray, theyd have to wake me up for OT and PT; I would have slept through the entire 24 hours. I was extremely fatigued. I had no energy. I think that for myself, my energy level has gone up from the rst year, but, since then Ive made adjustments in my activities so I get around it. I used to do the lot in one day no problem; now I work an hour and Im tired. So, I do half one day and half the other day, you know? Physical activity in the form of walking, water aerobics or other occupations of meaning was described as helpful for coping with fatigue. Assistive technology was also indicated as useful for energy conservation, such as using a golf cart when golng or a scooter within a shopping mall. The following quotes illustrate the benets of exercise and other active occupational participation strategies, not only to physical improvements, but also to health and quality of life. Well, I would sleep in the afternoon, and then I would get up and kind of be groggy and I thought, how am I going to go through my day like this? So, after I got up from resting, I would get up and exercise and it
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kind of helped me get my second wind. I dont know that it actually increased my energy level, but it gave me something to focus on other than being tired. I walk. I try to, when Im not going through water aerobics an hour a day, thats twice a week, and then I walk the dog for 2 miles a day. And then of course my golng. And Ive got a large yard to work on. I went to (large department store) for the rst time a couple of weeks ago, and I just said to my daughter, Were gonna get a wheelchair, Im not even going to try to maneuver this place. And, thank goodness, I didnt realize there was 47 miles . . . (laughter). And I, like you, get sort of upset with myself. Because before my stroke, the sky was the limit . . . you know, just kept doing. Resting during the day appeared to be an everpresent draw, yet was resisted by this studys stroke survivors. Instead, there was a desire and motivation to be doing more, and participants consistently reported the ongoing struggle to continue to participate, in the face of an overwhelming need to rest. Participants portray the desire and press for occupational role engagement, wanting to perform valued occupations, yet also realizing the occupations cannot be performed in the same way as prior to the stroke.

Summary of ndings: the occupational impact of post-stroke fatigue To draw a conclusion about the experience of poststroke fatigue, one must consider the struggling, searching and adaption without guidance that the focus group participants in this study described. The key nding about the experience of post-stroke fatigue is that after stroke, individuals do not know that they are going to become fatigued, they do not know what to do about it, they cannot nd help and they feel troubled when they either limit activities or rest during the day. This leads to speculation as to the problem and cause, with a continual search for acknowledgement and a solution to the challenges they experience in daily life. Much mental energy is exerted on searching for validation of post-stroke fatigue and trying to perform occupations without guidance, thus using trial and error for their participation method. More often than not, individuals struggle to participate in their daily lives, in an attempt to reach their pre-stroke level of participation. Other individuals (e.g., family members and employers) within their social environments seem to want this level
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of pre-stroke participation as well, creating fairly high (and sometimes unsafe) expectations for the participants in this study.

Discussion and summary

The literature describes post-stroke fatigue as a physical, mental and social impairment (Staub and Bogousslavsky, 2001) in which rest is unrefreshing and there is a disturbed balance between motivation (which is preserved) and effectiveness (which is decreased). Drawing a parallel to the Occupational Adaptation (OA) theoretical frame of reference (Schkade and Schultz, 2003), the individuals motivation and desire for mastery in occupational performance remains the same as prestroke, but their occupational response post-stroke is judged by the participant or others in their environments to be inadequate. The resultant press for mastery provokes the individual to make an adaptive response. According to the OA frame of reference authors (Schkade and Schultz, 2003), occupational performance competence is a result of cumulative adaptation used by a person to reach relative mastery of their occupational engagement. In the case of this studys participants, adaptive responses are made, seemingly with high primary adaptation energy, not yet at a secondary, sub-awareness or innovative level. Correspondingly, the costs of post-stroke fatigue, with its physical, mental and social fatigue types (Staub and Bogousslavsky, 2001), are high for the individual with post-stroke fatigue engaged in occupations, particularly in terms of using up the individuals nite primary adaptation energy. This struggle is recorded elsewhere in the literature, where individuals describe a constant struggle to overcome fatigue to complete daily tasks and experience marked concern about the feeling of fatigue (de Groot et al., 2003). The comments of our studys participants are consistent with these descriptions, as they are profoundly disturbed by post-stroke fatigue as it impacts their daily occupational lives. Initially trying pre-stroke behaviours for occupational performance, the participants in this study soon learned to try modications of their usual routines as an adaptive response to the challenge of fatigue in their daily roles. The context of their lives had to be recongured to accommodate this powerful phenomenon of fatigue. The process of this reconguration of daily life was ongoing and involved repeated attempts at adaptation by our participants. These attempts to recongure daily
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life to achieve mastery resulted in a variety of strategies to meet that goal. The participants in our groups had a strong desire to be with others in social situations, even though it was difcult. Adaptations to social participation included anticipatory cognitive strategies, such as limiting the time they were with others and limiting the size of groups. When this was unsuccessful, they would become unable to participate socially as they became more fatigued. In the same way, the participants highly valued interactions with their families. But again, they were no longer able to function in the ways they used to, and were not always successful in their adaptations. The fatigue and the lack of insight into its impact lead to potentially unsafe situations when caring for others. The expectation of returning to work or managing a home was shared by both participants and their families. The desire to return to work led to isolated, heroic attempts to achieve mastery of those roles. However, formal social supports for return to work, such as vocational services, were not present for any of the participants in these groups; participants were left to attempt to achieve these roles on their own. Driving was a particularly challenging task, with its high cognitive, attentional and motor demands. Because the consequences of not driving are so devastating, it was an occupational task that was non-negotiable for many participants. Adaptation of the cognitive and attentional demands of driving can only be decreased minimally, usually by limiting geographical areas, which means that drivers may not be able to reach desired designations. The adaptive responses of these drivers were limited to stopping when they were tired and either resting or calling on family members for help. The lack of good alternatives to driving and the high demand of the task raise the question of safety. The impact of fatigue on reading in participants who did not have specic language problems was a surprising nding, because usually language or visual impairments are blamed for reading difculties after stroke. This issue is magnied by the fact that when they read, the participants often fell asleep. This limited both the leisure and educational benets of reading, and while not mentioned by our participants, this linkage between attempting to read and falling asleep could also be a problem in the workplace. Sleep disturbances have been implicated as a coexisting symptom with post-stroke fatigue in various studies (Davies et al., 2003; Hermann and Bassetti, 2003; Appelros, 2006). In the present study, specic
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sleep disturbances were mentioned by several, but not all participants across the three focus groups. Sleep quality at night was reportedly disturbed, with diagnosed sleep apnea in some individuals. There seems to be a clear need for further research investigation into the other factors and/or linkages that either prevent post-stroke sleeping through the night or lead to increased need for night-time sleep (above the prestroke need for sleep). Limitations The limitations of this project are primarily related to the limitations of focus group methodology. Even though the researchers had information from many different participants from three different sites, the ndings cannot be broadly generalized from this studys results alone. Although as facilitators the authors attempted to limit this by small focus group numbers, the group nature of data collection may have altered the data that was collected the comments of the individuals in the groups are not always independent of each other. More reserved members of the group may have been hesitant to speak. And nally, the individuals who were willing to travel to the focus group meeting and donate an hour of their time might vary in some fundamental way from those stroke survivors who did not participate (Stewart and Shamdasani, 1990). The researchers attempted to minimize these limitations by only reporting themes that were present in all three focus groups, not discussing ndings between researchers until all three groups had met and their data collected, and attempting to facilitate the groups so that all members felt free to speak, but it is unclear whether these strategies were fully effective. Implications for practice and further research Post-stroke fatigue is a recognized symptom for many stroke survivors identied within the biomedical literature. As OT practitioners, we can begin to provide a solution for this issue by preparing clients, including their families and signicant others, for the potential of post-stroke fatigue with its occupational challenges. We can validate our clients experiences of fatigue when they describe it to us and facilitate dialogue with clients and their families about the challenges fatigue can present to occupational performance.
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Because the causes of post-stroke fatigue are so varied and difcult to diagnose, clients who present with the symptom should be referred for a medical evaluation, to determine if the fatigue is a result of other medical issues such as sleep disorders, medication or depression. Sleep disturbances require referral to medical professionals for potential diagnosis and treatment to manage day-time fatigue. As for OT intervention, we can educate our clients about post-stroke fatigue and management techniques, such as energy conservation, adaptive equipment and techniques, healthy communication and the need for self-advocacy, as well as the benets of staying physically and socially active. The components of physical, social and cognitive fatigue are particularly important to emphasize, as clients are often unfamiliar with these concepts. Further, OT practitioners can teach clients to anticipate and problem-solve for potential problems during IADL completion, particularly regarding safety in driving and community mobility or in care of others. As many of the challenges our participants faced occurred long after OT inpatient services were provided, clients and their families need to know that additional resources are available and how to access them to facilitate full social and community participation. For example, a driving evaluation with recommendations for safe driving may be indicated after clients have completed inpatient therapy services. In addition, clients may wish to return to work and will need to be aware of support services that can facilitate success. OT practitioners can instruct clients and families in both when and how to access community-based OT services and other community services that may be needed. For example, attending a stroke support group may help clients consider options such as return-to-driving, other IADL OT interventions or vocational services. OT researchers are encouraged to explore successful OT and team-based interventions for post-stroke fatigue management, including positive cognitive behavioural strategies for managing the troubling emotional consequences of cognitive and social post-stroke fatigue. Research into safe driving and community mobility alternatives will offer clients post-stroke safe strategies for occupational role engagement. In summary, awareness of post-stroke fatigue by OT practitioners followed by education of our clients and families after stroke can lead to clients improved ability to participate in valued occupations and roles within society. Expansion of OT services into the community
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to address post-stroke fatigue, whether through education at stroke support groups or health-care provider education, will help spread the word about this devastating consequence of stroke. Increased awareness of the post-stroke fatigue symptom and of potential solutions offered by OT intervention could substantially decrease the struggle to participate experienced by individuals after stroke. OT practitioners are encouraged to be part of the solution to post-stroke fatigue through client and family education, referral for diagnosis, use of effective OT interventions and referrals in the community phase, and continued research regarding the occupational impact and intervention efcacy to promote client quality of life post-stroke. REFERENCES
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