Poststroke Fatigue: The Patient Perspective C.A. Young, MD, FRCP,1 R.J. Mills, PhD, MRCP,2 C. Gibbons, PhD,3 and E.W. Thornton, PhD3 1
The Walton Centre NHS Foundation Trust, Liverpool; 2Lancashire Teaching Hospitals NHS Foundation Trust, Preston; 3School of Psychology, University of Liverpool, Liverpool, UK
Purpose: Fatigue is reported as a prevalent symptom post stroke. The purpose of this study is to explore the patent perspective of this symptom, how it is experienced, and its subjective impact on the patient. Method: The qualitative procedure of interpretative phenomenological analysis (IPA) was used to analyze the narratives of 10 subjects with previous stroke, who each undertook a single, semi-structured interview. Results: Fatigue was a salient symptom for all the patients. Six main themes were identified. Tiredness/sleep was recognized in all the narratives, and themes of restriction, frustration, and determination/coping reflected varying degrees of physical, cognitive, and psychological dimensions to fatigue. Depression/motivation was also identified, reflecting low mood and helplessness. The remaining theme support indicated a social dimension, with patients recognizing the need for professional and familial support. Further subthemes were identified, and the thematic descriptions of the physical and psychosocial aspects indicated the complexity of fatigue and unique patient profiles. A holistic overview of each narrative furthered an understanding of the dynamic interrelationships between these aspects and their impact on the patient. There were prevalent patterns, but these were different for each patient. Conclusion: A better understanding of the varied dimensions or themes elaborated for poststroke fatigue, and their interrelationships, should help in mitigating its impact. The analysis cautions against giving any simplistic and unitary advice to patients about dealing with fatigue. Key words: fatigue, qualitative, stroke
F
atigue is a word commonly used in everyday language but has probable varied subjective meaning. It may represent similar terms, such as tiredness, sleepiness, exhaustion, or lack of energy. This diversity in definition reflects the belief that fatigue may be a multidimensional, subjective symptom that has both psychological and physical dimensions.1 However, it is unclear whether it presents in different forms in diverse diseases, especially in neurological conditions where it is a common symptom. 2 What is evident is the resulting distress to the patient that may impact rehabilitation in several ways, including nonattendance at clinic and failure to comply with exercise or other treatments. Moreover, fatigue may predict subsequent outcomes, such as restricted activities of daily living, reduced healthrelated quality of life, 3 and even mortality.4,5 Fatigue is a prevalent and often enduring symptom following stroke.6-9 Yet, 2 early reviews of fatigue in a clinical context10,11 failed to include any comment on stroke patients. Morley et al12 concluded that despite some earlier studies, fatigue in stroke is an important but neglected issue. The most recent review reported prevalence rates between 38% and 77%.13 Fatigue may be associated with physical weakness, but this is not necessarily so. The extent 478
of fatigue may increase with the severity of stroke.14 Fatigue may impact physical abilities, and failure to understand the effects of fatigue on patients may magnify or worsen activity limitation. Although fatigue is frequently associated with depression, this may not always be the case. Fatigue can be differentiated from depression and has been identified as an important sequel to stroke in its own right.15 Thus the lack of effort in rehabilitation may be attributed to a patient’s depression (rather than fatigue), and this may then become the sole, and therefore inappropriate, focus in treatment. Attempts have been made to attain a better understanding of poststroke fatigue through qualitative studies. Lynch et al used semi-structured interviews with stroke patients to characterize the state of fatigue in stroke as a prelude to an adequate disease-related scale.16 However, their attempts were directed to understanding the severity of fatigue in their patients rather than the nature of fatigue per se. In the most recent review of stroke-based fatigue, Lerdal et al13 identified only 3 further studies that used such Top Stroke Rehabil 2013;20(6):478–484 2013;20(1):478–484 © 2013 Thomas Land Publishers, Inc. www.thomasland.com www.strokejournal.com doi: 10.1310/tsr2006-478 10.1310/tscir2001-478
Patient Experience of Poststroke Fatigue
methods to characterize fatigue in stroke. These and other recent studies16,17 were directed more to understanding how fatigue impacts quality of life of patients and the implications for service providers rather than the patient experience of fatigue. However, 2 recent studies have used qualitative methodology to explore the experience of poststroke fatigue from the patient perspective.18,19 One study is largely restricted to the etiology rather than the nature of the patient experience. The content of the second study is more comprehensive, but it may have biased the reported experience because the semi-structured format of the interviews posed questions with the verbal label “tiredness” rather than “fatigue.” The present study is a further qualitative investigation in which patients were individually asked to describe the nature of their fatigue. In openended rather than semi-structured interviews, the study explored the potential physical, psychological, and situational nature of fatigue as well as the consequences of fatigue on participants’ lives. This is necessary to more fully describe the specific experience of stroke patients. The information is seen as a precursor to attempts to advise patients or derive an appropriate and broad quantitative measure of fatigue suitable for stroke patients. Methods Participants
Following approval from the local NHS Research Ethics Committee (Sefton Ref. EC115.03 and 05/ Q1501/24) and research governance procedures at the site hospital, 10 patients who had experienced a primary stroke between 12 and 52 weeks earlier consented to participate, with no refusals. Patients (mean age, 52 years; 6 male) were referred to the study, having indicated symptoms of fatigue to a consultant neurologist. They did not suffer from significant cognitive impairment or dysphasia. The site of stroke, including hemispheric location, was diverse, with 1 patient having hemorrhagic stroke. Design and procedures
Single, semi-structured interviews were undertaken individually with each patient in the
479
hospital in a private room. Open-ended interviews were conducted to explore the patient’s experience of fatigue, what fatigue meant to the patient, and how it affected his or her life. Each participant had been invited to participate, had previously been provided with an information leaflet describing the purpose and procedures of the study, and was given the opportunity to discuss participation prior to attendance. Each interview commenced with the question, “Tell me about your fatigue.” The interview was audiotaped and lasted between 20 and 45 minutes. Participants were assured that their comments would not be identifiable in the final analysis or shared with their carers or their clinical team. The recordings were transcribed and the content was subject to qualitative, line-by-line analysis so that statements were coded and defined according to grounded theory procedure. 20 Subthemes were generated from similar codes. The final procedure and the emergence of themes was reflective and within the framework of interpretive phenomenological analysis (IPA).21,22 IPA provides an empirical means of dealing with qualitative information, describing and explaining how individuals make sense of their experiences. The themes are abstracted and revised in a reiterative manner from reading and re-reading transcripts so that the derived themes convey the personal meaning of the account for the participants. It is the subjective rather than objective elements of the experience that define the phenomenological nature of the IPA. The focus was on the perception of fatigue from the patient’s perspective rather than the impact of that fatigue on daily life. A central tenet of IPA is the exploration of the investigated phenomenon from the perspective of the participant rather than the confirmation of preexisting expectations. The focus is the experience of the participant, but IPA also explicitly acknowledges the researcher in the sense that the process of analysis actively requires the interpretation of the narrative by the researcher. Although the interviews are semi-structured and the area of concern guides the outline of the interview, the interviews for IPA allow the patients to freely explore fatigue according to their priorities in their own words and to shape the content of the interviews.
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TOPICS IN STROKE REHABILITATION/NOV-DEC 2013
The initial derivation of subthemes was conducted by 2 researchers who carried out the interviews. They made notes, including comments on nonverbal information (eg, emphasis, emotional reactions) during the interview, and could use such information within the interpretative conceptualization of the analysis. The subthemes derived within identified portions of the transcripts were subsequently verified by a third researcher. Results It was evident in the discourse with each patient that fatigue was a salient concern. After several readings, often requiring recoding of the patient statements, a consistent coding (subthemes) was determined by the interviewer. These were subsequently confirmed by 2 of the authors, and the results were then organized by agreement into 6 themes (see Figure 1). The first 4 themes related to the experience of fatigue and its psychological impact. The final 2 themes related more to the experience of dealing with fatigue (see Table 1). Theme 1: Tiredness/sleep
The overwhelming experience of all patients was tiredness. This was a prominent theme amalgamating a number of similarly coded subthemes, reflecting analogous ideas expressed in differing ways. Exhaustion (subtheme): “I feel exhausted, even after sleep … feel raving tired”; “I feel tired, I get worn out” (patient 6). These feelings included mental as well as physical tiredness:“I feel too tired, I just can’t really concentrate…I get worn out” (patient 8); “You’re trying to work it so much but it’s [the brain] just not doing anything” (patient 9). Table 1.
All patients reported that fatigue had caused them to need more sleep and rest and it was clear that patients felt they spent considerably more time resting, in bed, and sleeping, than they had before their stroke. Sleep (subtheme): ”Whenever I have a second I go to sleep” (patient 1); “I’ve got to have sleep… I didn’t sleep much at all before, now I can sleep… much longer” (patient 2); “I’ve got to have a sleep” (patient 6); “I’m always asleep, always in bed” (patient 5). Tiredness (subtheme): Sometimes patients reported that they fell asleep despite their best effort not to do so and that such sleep may or may not be refreshing: “I still feel tired, even after sleep” (patient 1). Theme 2: Restriction
Several of the patients reported that fatigue restricted them in various ways, even sometimes in basic self-care like washing and dressing. The main theme emerged from a number of initial subtheme codes. Limitations on activities (subtheme): Patients felt that because of their fatigue they could do nothing they considered worthwhile or things they wanted to do. One patient for example, noted, “You can’t talk to people for long” (patient 9). Theme 3: Frustration
Although patients described frustration in varied ways, it was apparent that all patients were frustrated by their feelings of fatigue. Subthemes coded from the transcripts were as follows: Poor coping (subtheme): Patients found it hard to accept their condition and the change in their
Summary of themes and subthemes
Themes 1. Tiredness/ sleep
2. Restriction
3. Frustration
4. Depression
5. Determination/ coping
6. Support
Limitations
Poor coping Boredom Lack of control
Mood swings Poor motivation Doing nothing Depression
Achievement Goal setting Control
Mood Advice
Subthemes Sleep Tiredness Exhaustion
Patient Experience of Poststroke Fatigue
perception of self. They found it “hard to accept myself … I need to give myself a slap” (patient 1). Boredom (subtheme): In some circumstance the frustration was derived from the fatigue directly: “There’s just nothing to do … Yeah I’m frustrated” (patient 1). Lack of control (subtheme): Sometimes this was directly expressed with emotional emphasis: “I find it frustrating to be dependent on my partner” (patient 2); “Even simple things are difficult to do… it’s a constant effort” (patient 3); “You’re trying to work at it so much but it’s just not doing anything… it makes me feel annoyed and I start thinking can I get better” (patient 9). Theme 4: Depression/motivation
Many of the patients expressed signs of depression, feeling “down” or helplessness. In a few cases, the depression or low mood was pervasive and present for a large part of their time and, in that regard, qualified as clinical case status. Mood swing (subthemes): In the minority of patients, the mood state varied: “sometimes upset,” “fed-up” (patient 1); “I resent it” (patient 6); “have become more moody and I can snap like that” (patient 9). Poor motivation (subtheme): One patient suggested that he slept not only because of fatigue but as “an escape…if I could fall asleep I could forget what condition I was in” (patient 3); “feel less like doing things really” (patient 8); “I generally don’t feel like going if I have to wait” (patient 7). Doing nothing (subtheme): “couldn’t be bothered” (patient 1). Depression (subtheme): One patient stated, “Depression is a big thing, yes it’s affected everyone that’s had a stroke. It has to, otherwise they’re lying” (patient 2). Sometimes the emphasis was on helplessness rather than mood per se: “It’s a feeling you can’t do anything” (patient 4). Theme 5: Determination/coping
Despite their feeling of fatigue, many patients felt a determination not to give in to such feelings. They wanted to feel independent, to push themselves when feeling fatigued, and to exert control and get things done.
481
Achievement (subtheme): Several patients engaged in behaviors that provided a positive attitude; they felt a sense of achievement from such activities: “I always try to do what I can within reason …I enjoy the challenge” (patient 6). Goal setting (subtheme): This was often related to the previous subtheme, but the objectives were more specific: “I’ll try to set goals, because that’s what I’m like” (patient 10 ). Control (subtheme): This was reflected in statements such as, “I push myself to go out…I won’t give in to it. I’m quite determined that if I want something, there’s a way around it; I never really give up” (patient 9). The majority of patients had found some way to manage their fatigue: “It helps me cope better if I have something to look forward to in the afternoon” (patient 7). Theme 6: Support
In some form, all patients referred to support. Sometimes it related to professional services and other times to the wider social context of partners, family, or friends. Informal support took varied forms, such as visiting patients, taking them on trips, providing meals, even sharing hobbies. This may have led to direct tangible support, but patients also recognized that it distracted them from the consequences of stroke, including their fatigue. This provided enjoyment and an antidote to negative emotions. Patients had attended physiotherapy and occupational therapy sessions, and these improved physical symptoms and provided alternative ways of doing things. In many cases, support helped provide a sense of achievement. Mood (subtheme): Visits to and from friends could reduce negative mood states – “felt less bored and down” (patient 7) – and improve positive mood status – “felt refreshed” (patient 4). Advice (subtheme): This was frequently from professional services: “It’s helping me… and you feel as if you have achieved something…rather than by going for something huge and getting even more frustrated because it can’t be finished” (patient 1). Saturation in the subthemes was reached by patient 8. No new subthemes were added, although the experiences of each patient remained unique.
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Discussion Several qualitative studies have attempted to characterize the impact of stroke on the patient, including effect on quality of life, and these data have been reviewed.21 The current study has emphasized the characteristics of fatigue and its consequences and the adaptive strategies used to cope with it. First, fatigue clearly has both physical and psychological dimensions, and the narratives of our patients indicate that these are not necessarily related. Second, tiredness was universal in our sample of patients. The majority experienced an increase in sleep, but not all patients indicated that sleep alleviated fatigue, especially where there was evidence of concomitant low mood or depression. Third, fatigue has effects on the quality of life of patients in restricting physical and social activities; these effects were marked in several patients, especially for those who reported exhaustion as part of their fatigue. These experiences of fatigue are consistent with those reported in other conditions.23-25 Depression was not universal in our sample, although low mood was common. This is consistent with reports that as many as 33% of poststroke patients experience clinical depression.26 However, it was clear that there were themes specific to fatigue; fatigue did not simply represent an anhedonic resignation to inactivity. The complexities that possibly relate fatigue to depression require future elucidation. The themes were experienced in different ways by patients. The diversity evident in the transcripts precluded any attempt to simply dichotomize fatigue post stroke in terms such as subjective versus objective, activity versus motivation, or psychological (depression) versus physical (fatigue). This does not mean that an attempt to quantify fatigue post stroke is not of value, because it is clear from patients’ descriptions that their fatigue is marked and does have a profound impact on their lives. The themes that emerged from our interviews showed similarities to those reported recently by White et al,19 despite the differences between studies in patient sample. Most notable was the remarkably low levels of depressive symptoms in that study. Both studies support the salience of fatigue despite the contrasting sampling
procedures, and the themes derived from these studies provide a broad basis for an improved understanding of fatigue in stroke. Certainly, the development of an appropriate fatigue scale should sample all these areas of patient concern and reflect patients’ experience rather than preconceptions of fatigue by those designing the scale. It was apparent from holistic examination of each of the interviews that poststroke fatigue is different both qualitatively and quantitatively from a normal experience of fatigue and, indeed for each patient, from their experience of fatigue prior to their stroke. This same point has been made by Staub and Bagousslavsky9 and more recently in a qualitative study of patients immediately following their stroke, when the differences in how pre- and poststroke fatigue are experienced are less likely to be influenced by remote recall.18 In this latter study, the elaborated themes relating to fatigue related more to its impact on immediate recovery and relations with medical staff and hospital facilities rather than those themes in the current study. Such differences emphasize the importance of situational context and timing in elaborating an understanding of fatigue. Further insight into the interactive aspects of thematic analysis is provided by holistic consideration of each transcript beyond that conveyed by a thematic analysis. This is a specific positive feature of IPA within qualitative methodology. IPA encourages researcher interpretation in the derivation of the thematic analysis, but it is consistent with IPA to examine a transcript as a whole with the same objective – that of understanding the patient through interpretation of the narrative data. Although thematic analysis, which simplifies data, may appear reductionist in approach, a holistic reading clearly shows strong interrelationships between themes, as occurred in the present interviews. These relationships are presented in Figure 1. Even though the emergent themes reached saturation before the final interviews, the dynamic relationship between such themes did not. These themes may well have continued to be represented individually in a larger sample size. Some of these relationships were evident across several patients, for example, the frustration induced by tiredness and the impact of both depression/low mood
Patient Experience of Poststroke Fatigue
Frustration
Tiredness/sleep
Restriction
Determination
Support
Depression
Figure 1. Hypothesized interrelationship between themes. Ovals indicate outcomes; rectangles indicate experience; arrows reflect hypothesized direction(s) of effect of the themes in this sample of patients.
and tiredness on activity restriction. However, effects were not universal. It was also evident that
483
what might be considered to be consequences of fatigue acted upon the more experiential aspects of fatigue: Support could and did affect some patients’ determination to deal with fatigue, and the relationship between depression and activity was sometimes bidirectional. A dynamic thematic framework for understanding poststroke fatigue is a prerequisite for quantifying fatigue in stroke patients and designing potential interventions. Such a framework would facilitate the development of complex interventions aimed at reducing fatigue in this population. Acknowledgments We sincerely thank all the patients who agreed to take part in this study for their time and effort. We thank Ms. S. Barker and Ms. A. Booth for their contribution to data collection and Dr. L. Piggin for her comments on an earlier draft of this work. We are grateful to the Neuroscience Research Centre staff for their assistance. Conflict of interest: The authors have no conflicts of interest to report.
REFERENCES 1. Fritschi C, Quinn L. Fatigue in patients with diabetes: A review. J Psychosom Res. 2010;69(1):33-41. 2. de Groot MH, Phillips SJ, Eskes GA. Fatigue associated with stroke and other neurologic conditions: Implications for stroke rehabilitation. Arch Phys Med Rehabil. 2003;84(11):1714-1720. 3. van de Port IGL, Kwakkel G, Schepers VPM, Heinemans CTI, Lindeman E. Is fatigue an independent factor associated with activities of daily living, instrumental activities of daily living and health-related quality of life in chronic stroke? Cerebrovasc Dis. 2007;23(1):40-45. 4. Glader EL, Stegmayr B, Asplund K. Poststroke fatigue – A 2-year follow-up study of stroke patients in Sweden. Stroke. 2002;33(5):1327-1333. 5. Mead GE, Graham C, Dorman P, et al. Fatigue after stroke: Baseline predictors and influence on survival. Analysis of data from UK patients recruited in the International Stroke Trial. PLOS One. 2011;6(3). 6. Appelros P. Prevalence and predictors of pain and fatigue after stroke: A population-based study. Int J Rehabil Res. 2006;29(4):329-333. 7. Ingles JL, Eskes GA, Phillips SJ. Fatigue after stroke. Arch Phys Med Rehabil. 1999;80(2):173-178.
8. Skaner Y, Nilsson GH, Sundquist K, Hassler E, Krakau I. Self-rated health, symptoms of depression and general symptoms at 3 and 12 months after a first-ever stroke: A municipality-based study in Sweden. BMC Fam Pract. 2007;8. 9. Staub F, Bogousslavsky J. Fatigue after stroke: A major but neglected issue. Cerebrovasc Dis. 2001;12(2):75-81. 10. Swain MG. Fatigue in chronic disease. Clin Sci. 2000;99(1):1-8. 11. Tiesinga LJ, Dassen TW, Halfens RJ. Fatigue: A summary of the definitions, dimensions, and indicators. Nurs Diagn. 1996;7(2):51-62. 12. Morley W, Jackson K, Mead GE. Post-stroke fatigue: An important yet neglected symptom. Age Ageing. 2005;34(3):313-313. 13. Lerdal A, Bakken LN, Kouwenhoven SE, et al. Poststroke fatigue – A review. J Pain Symptom Manage. 2009;38(6):928-949. 14. Winward C, Sackley C, Metha Z, Rothwell PM. A population-based study of the prevalence of fatigue after transient ischemic attack and minor stroke. Stroke. 2009;40(3):757-761. 15. van der Werf SP, van den Broek HLP, Anten HWM, Bleijenberg G. Experience of severe fatigue
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long after stroke and its relation to depressive symptoms and disease characteristics. Eur Neurol. 2001;45(1):28-33. Lynch J, Mead G, Greig C, Young A, Lewis S, Sharpe M. Fatigue after stroke: The development and evaluation of a case definition. J Psychosom Res. 2007;63(5):539-544. Donnellan C, Martins A, Conlon A, Coughlan T, O’Neill D, Collins DR. Mapping patients’ experiences after stroke onto a patient-focused inter vention framework. Disabil Rehabil. 2013;35(6):483-491. Barbour VL, Mead GE. Fatigue after stroke: The patient’s perspective. Stroke Res Treat. 2012;2012:863031. White JH, Gray KR, Magin P, et al. Exploring the experience of post-stroke fatigue in community dwelling stroke survivors: A prospective qualitative study. Disabil Rehabil. 2012;34(16):1376-1384. Charmaz K. Grounded theory: Objectivist and constructivist methods. In: Denzin NK, Lincoln YS, eds. Strategies of Qualitative Inquiry, 2nd ed. London: Sage Publications; 2003:249-291. Biggerstaff D, Thompson A. Interpretative phenomenological analysis (IPA): A qualitative
methodology of choice in healthcare research. Qual Res Psychol. 2008;5(3):214-224. 22. Smith J, Osborn M. Interpretive phenomenological analysis. In: Smith J, ed. Qualitative Psychology: A Practical Guide to Research Methods. London: Sage; 2003. 23. Gibbons CJ, Mills RJ, Thornton EW, et al. Development of a patient-reported outcome measure for fatigue in motor neurone disease: The Neurological Fatigue Index (NFI-MND). Health Qual Life Outcomes. 2011;9:101. 24. Gibbons C, Thornton E, Ealing J, et al. The impact of fatigue and psychosocial variables on quality of life for patients with motor neuron disease [published online ahead of print 2013]. Amyotroph Lateral Scler Frontotemporal Degener. doi: 10.3109/21678421.2013.799700 25. Mills RJ, Young CA. A medical definition of fatigue in multiple sclerosis. Q J Med. 2008;101(1): 49-60. 26. P o y n t e r B , S h u m a n M , D i a z - G r a n a d o s N, Kapral M, Grace SL, Stewart DE. Sex differences in the prevalence of post-stroke depression: A systematic review. Psychosomatics. 2009;50(6):563-569.
The Walton Centre NHS Foundation Trust, Liverpool; 2Lancashire Teaching Hospitals NHS Foundation Trust, Preston; 3School of Psychology, University of Liverpool, Liverpool, UK
Purpose: Fatigue is reported as a prevalent symptom post stroke. The purpose of this study is to explore the patent perspective of this symptom, how it is experienced, and its subjective impact on the patient. Method: The qualitative procedure of interpretative phenomenological analysis (IPA) was used to analyze the narratives of 10 subjects with previous stroke, who each undertook a single, semi-structured interview. Results: Fatigue was a salient symptom for all the patients. Six main themes were identified. Tiredness/sleep was recognized in all the narratives, and themes of restriction, frustration, and determination/coping reflected varying degrees of physical, cognitive, and psychological dimensions to fatigue. Depression/motivation was also identified, reflecting low mood and helplessness. The remaining theme support indicated a social dimension, with patients recognizing the need for professional and familial support. Further subthemes were identified, and the thematic descriptions of the physical and psychosocial aspects indicated the complexity of fatigue and unique patient profiles. A holistic overview of each narrative furthered an understanding of the dynamic interrelationships between these aspects and their impact on the patient. There were prevalent patterns, but these were different for each patient. Conclusion: A better understanding of the varied dimensions or themes elaborated for poststroke fatigue, and their interrelationships, should help in mitigating its impact. The analysis cautions against giving any simplistic and unitary advice to patients about dealing with fatigue. Key words: fatigue, qualitative, stroke
F
atigue is a word commonly used in everyday language but has probable varied subjective meaning. It may represent similar terms, such as tiredness, sleepiness, exhaustion, or lack of energy. This diversity in definition reflects the belief that fatigue may be a multidimensional, subjective symptom that has both psychological and physical dimensions.1 However, it is unclear whether it presents in different forms in diverse diseases, especially in neurological conditions where it is a common symptom. 2 What is evident is the resulting distress to the patient that may impact rehabilitation in several ways, including nonattendance at clinic and failure to comply with exercise or other treatments. Moreover, fatigue may predict subsequent outcomes, such as restricted activities of daily living, reduced healthrelated quality of life, 3 and even mortality.4,5 Fatigue is a prevalent and often enduring symptom following stroke.6-9 Yet, 2 early reviews of fatigue in a clinical context10,11 failed to include any comment on stroke patients. Morley et al12 concluded that despite some earlier studies, fatigue in stroke is an important but neglected issue. The most recent review reported prevalence rates between 38% and 77%.13 Fatigue may be associated with physical weakness, but this is not necessarily so. The extent 478
of fatigue may increase with the severity of stroke.14 Fatigue may impact physical abilities, and failure to understand the effects of fatigue on patients may magnify or worsen activity limitation. Although fatigue is frequently associated with depression, this may not always be the case. Fatigue can be differentiated from depression and has been identified as an important sequel to stroke in its own right.15 Thus the lack of effort in rehabilitation may be attributed to a patient’s depression (rather than fatigue), and this may then become the sole, and therefore inappropriate, focus in treatment. Attempts have been made to attain a better understanding of poststroke fatigue through qualitative studies. Lynch et al used semi-structured interviews with stroke patients to characterize the state of fatigue in stroke as a prelude to an adequate disease-related scale.16 However, their attempts were directed to understanding the severity of fatigue in their patients rather than the nature of fatigue per se. In the most recent review of stroke-based fatigue, Lerdal et al13 identified only 3 further studies that used such Top Stroke Rehabil 2013;20(6):478–484 2013;20(1):478–484 © 2013 Thomas Land Publishers, Inc. www.thomasland.com www.strokejournal.com doi: 10.1310/tsr2006-478 10.1310/tscir2001-478
Patient Experience of Poststroke Fatigue
methods to characterize fatigue in stroke. These and other recent studies16,17 were directed more to understanding how fatigue impacts quality of life of patients and the implications for service providers rather than the patient experience of fatigue. However, 2 recent studies have used qualitative methodology to explore the experience of poststroke fatigue from the patient perspective.18,19 One study is largely restricted to the etiology rather than the nature of the patient experience. The content of the second study is more comprehensive, but it may have biased the reported experience because the semi-structured format of the interviews posed questions with the verbal label “tiredness” rather than “fatigue.” The present study is a further qualitative investigation in which patients were individually asked to describe the nature of their fatigue. In openended rather than semi-structured interviews, the study explored the potential physical, psychological, and situational nature of fatigue as well as the consequences of fatigue on participants’ lives. This is necessary to more fully describe the specific experience of stroke patients. The information is seen as a precursor to attempts to advise patients or derive an appropriate and broad quantitative measure of fatigue suitable for stroke patients. Methods Participants
Following approval from the local NHS Research Ethics Committee (Sefton Ref. EC115.03 and 05/ Q1501/24) and research governance procedures at the site hospital, 10 patients who had experienced a primary stroke between 12 and 52 weeks earlier consented to participate, with no refusals. Patients (mean age, 52 years; 6 male) were referred to the study, having indicated symptoms of fatigue to a consultant neurologist. They did not suffer from significant cognitive impairment or dysphasia. The site of stroke, including hemispheric location, was diverse, with 1 patient having hemorrhagic stroke. Design and procedures
Single, semi-structured interviews were undertaken individually with each patient in the
479
hospital in a private room. Open-ended interviews were conducted to explore the patient’s experience of fatigue, what fatigue meant to the patient, and how it affected his or her life. Each participant had been invited to participate, had previously been provided with an information leaflet describing the purpose and procedures of the study, and was given the opportunity to discuss participation prior to attendance. Each interview commenced with the question, “Tell me about your fatigue.” The interview was audiotaped and lasted between 20 and 45 minutes. Participants were assured that their comments would not be identifiable in the final analysis or shared with their carers or their clinical team. The recordings were transcribed and the content was subject to qualitative, line-by-line analysis so that statements were coded and defined according to grounded theory procedure. 20 Subthemes were generated from similar codes. The final procedure and the emergence of themes was reflective and within the framework of interpretive phenomenological analysis (IPA).21,22 IPA provides an empirical means of dealing with qualitative information, describing and explaining how individuals make sense of their experiences. The themes are abstracted and revised in a reiterative manner from reading and re-reading transcripts so that the derived themes convey the personal meaning of the account for the participants. It is the subjective rather than objective elements of the experience that define the phenomenological nature of the IPA. The focus was on the perception of fatigue from the patient’s perspective rather than the impact of that fatigue on daily life. A central tenet of IPA is the exploration of the investigated phenomenon from the perspective of the participant rather than the confirmation of preexisting expectations. The focus is the experience of the participant, but IPA also explicitly acknowledges the researcher in the sense that the process of analysis actively requires the interpretation of the narrative by the researcher. Although the interviews are semi-structured and the area of concern guides the outline of the interview, the interviews for IPA allow the patients to freely explore fatigue according to their priorities in their own words and to shape the content of the interviews.
480
TOPICS IN STROKE REHABILITATION/NOV-DEC 2013
The initial derivation of subthemes was conducted by 2 researchers who carried out the interviews. They made notes, including comments on nonverbal information (eg, emphasis, emotional reactions) during the interview, and could use such information within the interpretative conceptualization of the analysis. The subthemes derived within identified portions of the transcripts were subsequently verified by a third researcher. Results It was evident in the discourse with each patient that fatigue was a salient concern. After several readings, often requiring recoding of the patient statements, a consistent coding (subthemes) was determined by the interviewer. These were subsequently confirmed by 2 of the authors, and the results were then organized by agreement into 6 themes (see Figure 1). The first 4 themes related to the experience of fatigue and its psychological impact. The final 2 themes related more to the experience of dealing with fatigue (see Table 1). Theme 1: Tiredness/sleep
The overwhelming experience of all patients was tiredness. This was a prominent theme amalgamating a number of similarly coded subthemes, reflecting analogous ideas expressed in differing ways. Exhaustion (subtheme): “I feel exhausted, even after sleep … feel raving tired”; “I feel tired, I get worn out” (patient 6). These feelings included mental as well as physical tiredness:“I feel too tired, I just can’t really concentrate…I get worn out” (patient 8); “You’re trying to work it so much but it’s [the brain] just not doing anything” (patient 9). Table 1.
All patients reported that fatigue had caused them to need more sleep and rest and it was clear that patients felt they spent considerably more time resting, in bed, and sleeping, than they had before their stroke. Sleep (subtheme): ”Whenever I have a second I go to sleep” (patient 1); “I’ve got to have sleep… I didn’t sleep much at all before, now I can sleep… much longer” (patient 2); “I’ve got to have a sleep” (patient 6); “I’m always asleep, always in bed” (patient 5). Tiredness (subtheme): Sometimes patients reported that they fell asleep despite their best effort not to do so and that such sleep may or may not be refreshing: “I still feel tired, even after sleep” (patient 1). Theme 2: Restriction
Several of the patients reported that fatigue restricted them in various ways, even sometimes in basic self-care like washing and dressing. The main theme emerged from a number of initial subtheme codes. Limitations on activities (subtheme): Patients felt that because of their fatigue they could do nothing they considered worthwhile or things they wanted to do. One patient for example, noted, “You can’t talk to people for long” (patient 9). Theme 3: Frustration
Although patients described frustration in varied ways, it was apparent that all patients were frustrated by their feelings of fatigue. Subthemes coded from the transcripts were as follows: Poor coping (subtheme): Patients found it hard to accept their condition and the change in their
Summary of themes and subthemes
Themes 1. Tiredness/ sleep
2. Restriction
3. Frustration
4. Depression
5. Determination/ coping
6. Support
Limitations
Poor coping Boredom Lack of control
Mood swings Poor motivation Doing nothing Depression
Achievement Goal setting Control
Mood Advice
Subthemes Sleep Tiredness Exhaustion
Patient Experience of Poststroke Fatigue
perception of self. They found it “hard to accept myself … I need to give myself a slap” (patient 1). Boredom (subtheme): In some circumstance the frustration was derived from the fatigue directly: “There’s just nothing to do … Yeah I’m frustrated” (patient 1). Lack of control (subtheme): Sometimes this was directly expressed with emotional emphasis: “I find it frustrating to be dependent on my partner” (patient 2); “Even simple things are difficult to do… it’s a constant effort” (patient 3); “You’re trying to work at it so much but it’s just not doing anything… it makes me feel annoyed and I start thinking can I get better” (patient 9). Theme 4: Depression/motivation
Many of the patients expressed signs of depression, feeling “down” or helplessness. In a few cases, the depression or low mood was pervasive and present for a large part of their time and, in that regard, qualified as clinical case status. Mood swing (subthemes): In the minority of patients, the mood state varied: “sometimes upset,” “fed-up” (patient 1); “I resent it” (patient 6); “have become more moody and I can snap like that” (patient 9). Poor motivation (subtheme): One patient suggested that he slept not only because of fatigue but as “an escape…if I could fall asleep I could forget what condition I was in” (patient 3); “feel less like doing things really” (patient 8); “I generally don’t feel like going if I have to wait” (patient 7). Doing nothing (subtheme): “couldn’t be bothered” (patient 1). Depression (subtheme): One patient stated, “Depression is a big thing, yes it’s affected everyone that’s had a stroke. It has to, otherwise they’re lying” (patient 2). Sometimes the emphasis was on helplessness rather than mood per se: “It’s a feeling you can’t do anything” (patient 4). Theme 5: Determination/coping
Despite their feeling of fatigue, many patients felt a determination not to give in to such feelings. They wanted to feel independent, to push themselves when feeling fatigued, and to exert control and get things done.
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Achievement (subtheme): Several patients engaged in behaviors that provided a positive attitude; they felt a sense of achievement from such activities: “I always try to do what I can within reason …I enjoy the challenge” (patient 6). Goal setting (subtheme): This was often related to the previous subtheme, but the objectives were more specific: “I’ll try to set goals, because that’s what I’m like” (patient 10 ). Control (subtheme): This was reflected in statements such as, “I push myself to go out…I won’t give in to it. I’m quite determined that if I want something, there’s a way around it; I never really give up” (patient 9). The majority of patients had found some way to manage their fatigue: “It helps me cope better if I have something to look forward to in the afternoon” (patient 7). Theme 6: Support
In some form, all patients referred to support. Sometimes it related to professional services and other times to the wider social context of partners, family, or friends. Informal support took varied forms, such as visiting patients, taking them on trips, providing meals, even sharing hobbies. This may have led to direct tangible support, but patients also recognized that it distracted them from the consequences of stroke, including their fatigue. This provided enjoyment and an antidote to negative emotions. Patients had attended physiotherapy and occupational therapy sessions, and these improved physical symptoms and provided alternative ways of doing things. In many cases, support helped provide a sense of achievement. Mood (subtheme): Visits to and from friends could reduce negative mood states – “felt less bored and down” (patient 7) – and improve positive mood status – “felt refreshed” (patient 4). Advice (subtheme): This was frequently from professional services: “It’s helping me… and you feel as if you have achieved something…rather than by going for something huge and getting even more frustrated because it can’t be finished” (patient 1). Saturation in the subthemes was reached by patient 8. No new subthemes were added, although the experiences of each patient remained unique.
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Discussion Several qualitative studies have attempted to characterize the impact of stroke on the patient, including effect on quality of life, and these data have been reviewed.21 The current study has emphasized the characteristics of fatigue and its consequences and the adaptive strategies used to cope with it. First, fatigue clearly has both physical and psychological dimensions, and the narratives of our patients indicate that these are not necessarily related. Second, tiredness was universal in our sample of patients. The majority experienced an increase in sleep, but not all patients indicated that sleep alleviated fatigue, especially where there was evidence of concomitant low mood or depression. Third, fatigue has effects on the quality of life of patients in restricting physical and social activities; these effects were marked in several patients, especially for those who reported exhaustion as part of their fatigue. These experiences of fatigue are consistent with those reported in other conditions.23-25 Depression was not universal in our sample, although low mood was common. This is consistent with reports that as many as 33% of poststroke patients experience clinical depression.26 However, it was clear that there were themes specific to fatigue; fatigue did not simply represent an anhedonic resignation to inactivity. The complexities that possibly relate fatigue to depression require future elucidation. The themes were experienced in different ways by patients. The diversity evident in the transcripts precluded any attempt to simply dichotomize fatigue post stroke in terms such as subjective versus objective, activity versus motivation, or psychological (depression) versus physical (fatigue). This does not mean that an attempt to quantify fatigue post stroke is not of value, because it is clear from patients’ descriptions that their fatigue is marked and does have a profound impact on their lives. The themes that emerged from our interviews showed similarities to those reported recently by White et al,19 despite the differences between studies in patient sample. Most notable was the remarkably low levels of depressive symptoms in that study. Both studies support the salience of fatigue despite the contrasting sampling
procedures, and the themes derived from these studies provide a broad basis for an improved understanding of fatigue in stroke. Certainly, the development of an appropriate fatigue scale should sample all these areas of patient concern and reflect patients’ experience rather than preconceptions of fatigue by those designing the scale. It was apparent from holistic examination of each of the interviews that poststroke fatigue is different both qualitatively and quantitatively from a normal experience of fatigue and, indeed for each patient, from their experience of fatigue prior to their stroke. This same point has been made by Staub and Bagousslavsky9 and more recently in a qualitative study of patients immediately following their stroke, when the differences in how pre- and poststroke fatigue are experienced are less likely to be influenced by remote recall.18 In this latter study, the elaborated themes relating to fatigue related more to its impact on immediate recovery and relations with medical staff and hospital facilities rather than those themes in the current study. Such differences emphasize the importance of situational context and timing in elaborating an understanding of fatigue. Further insight into the interactive aspects of thematic analysis is provided by holistic consideration of each transcript beyond that conveyed by a thematic analysis. This is a specific positive feature of IPA within qualitative methodology. IPA encourages researcher interpretation in the derivation of the thematic analysis, but it is consistent with IPA to examine a transcript as a whole with the same objective – that of understanding the patient through interpretation of the narrative data. Although thematic analysis, which simplifies data, may appear reductionist in approach, a holistic reading clearly shows strong interrelationships between themes, as occurred in the present interviews. These relationships are presented in Figure 1. Even though the emergent themes reached saturation before the final interviews, the dynamic relationship between such themes did not. These themes may well have continued to be represented individually in a larger sample size. Some of these relationships were evident across several patients, for example, the frustration induced by tiredness and the impact of both depression/low mood
Patient Experience of Poststroke Fatigue
Frustration
Tiredness/sleep
Restriction
Determination
Support
Depression
Figure 1. Hypothesized interrelationship between themes. Ovals indicate outcomes; rectangles indicate experience; arrows reflect hypothesized direction(s) of effect of the themes in this sample of patients.
and tiredness on activity restriction. However, effects were not universal. It was also evident that
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what might be considered to be consequences of fatigue acted upon the more experiential aspects of fatigue: Support could and did affect some patients’ determination to deal with fatigue, and the relationship between depression and activity was sometimes bidirectional. A dynamic thematic framework for understanding poststroke fatigue is a prerequisite for quantifying fatigue in stroke patients and designing potential interventions. Such a framework would facilitate the development of complex interventions aimed at reducing fatigue in this population. Acknowledgments We sincerely thank all the patients who agreed to take part in this study for their time and effort. We thank Ms. S. Barker and Ms. A. Booth for their contribution to data collection and Dr. L. Piggin for her comments on an earlier draft of this work. We are grateful to the Neuroscience Research Centre staff for their assistance. Conflict of interest: The authors have no conflicts of interest to report.
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