I S S U E S A N D IN N O V A T I O N S I N N U R S I N G P R A C T I C E

A phenomenological study of fatigue in patients with primary biliary cirrhosis

Roberta Jorgensen
MS RN

Research Coordinator, Assistant Professor, Department of Gastroenterology and Hepatology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA

Accepted for publication 27 January 2006

Correspondence: Roberta Jorgensen, Department of Gastroenterology and Hepatology, Mayo Clinic College of Medicine, 200 First Street SW, Rochester, Minnesota 55905, USA. E-mail: jorgensen.roberta@mayo.edu doi: 10.1111/j.1365-2648.2006.03958.x

J O R G E N S E N R . ( 2 0 0 6 ) Journal of Advanced Nursing 55(6), 689697 A phenomenological study of fatigue in patients with primary biliary cirrhosis Aim. This paper reports the ndings of research on the lived experience of fatigue in patients with primary biliary cirrhosis a type of chronic liver disease. Background. Fatigue is a universal phenomenon, commonly associated with both acute and chronic illness, but also seen in healthy individuals. However, it is not often addressed in healthcare encounters despite its disabling nature, perhaps because of the multitude of contributing factors and the lack of effective treatments. It is a common and debilitating symptom in patients with primary biliary cirrhosis. Despite the prevalence of fatigue in this condition, patients experiences of this symptom have not been researched. Method. An interpretive-phenomenological approach developed by van Manen was chosen and this combines features of descriptive and interpretive phenomenology. Eight participants were interviewed during 2005 about their fatigue experience. Thematic analysis was conducted. Findings. Five themes were identied: an unreliable body, fatigue as always present yet insidious, planning a life to conserve energy, struggling to maintain normality and emotional consequences. These themes reected the unrelenting, intrusive nature of fatigue into the lives of those affected. Conclusion. This research will provide empathic insight into the fatigue experience in this condition and generate communication about coping strategies. It will add to the body of research on fatigue in chronic conditions and may generate ideas for intervention research.

Keywords: empirical research report, fatigue, nursing, phenomenology, primary biliary cirrhosis

Introduction
Primary biliary cirrhosis (PBC) is a chronic cholestatic liver disease that is slowly progressive in nature and over time can result in cirrhosis and liver failure. The presumed aetiology is autoimmune because of the high presence of antimitochondrial antibodies in patients and the association with a number of autoimmune conditions (Zukowski et al. 1998). The disease occurs more in women (90%) and is most often seen

in middle age. Prevalence rates vary somewhat geographically from a reported 19402 per 100,000 (Witt-Sullivan et al. 1990, Watson et al. 1995, James et al. 1999, Kim et al. 2000). Ursodeoxycholic acid is considered standard therapy for PBC and has been associated with a reduction of liver biochemistries (Lindor et al. 1994), delayed development of oesophageal varices (Lindor et al. 1997) and improved survival (Lindor et al. 1996). It has not been associated with a reduction in fatigue (Heathcote et al. 1994). Despite therapy,
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some patients will eventually require liver transplant. The disease typically follows a slow progressive course with many patients asymptomatic at initial presentation; however, over time most will develop pruritus and fatigue (Angulo & Lindor 1999).

Background
Fatigue
Fatigue is a universal phenomenon, commonly associated with both acute and chronic illness, but also seen in healthy individuals. It is a subjective experience that is complex, multidimensional and multicausal often without an identiable aetiology. Its enigmatic nature may be the result of biological, psychosocial and behavioural contributors (Aaronson et al. 1999). It is often not addressed in healthcare encounters despite its disabling nature, perhaps because of the multitude of contributing factors and the lack of effective treatments. Nursing denitions of fatigue have been the most comprehensive, encompassing the holistic nature of fatigue. Subjective self-evaluation is the key component of these denitions as it determines how an individual perceives the sensation (Hart et al. 1990). A concept analysis by Ream and Richardson (1996, p. 527) provided a denition for nursing use. This denition includes the subjectivity, the total body experience, the unrelenting nature and the resultant decrement in functional capacity. The allusion is to a pathological type of phenomenon as opposed to a normal, explicable type of fatigue: fatigue is a subjective, unpleasant symptom which incorporates total body feelings ranging from tiredness to exhaustion creating an unrelenting condition which interferes with individuals ability to function to their normal capacity.

More recently, the Fisk Fatigue Impact Scale (FSS), a selfreport questionnaire which measures the impact of fatigue on the daily lives of patients, has been validated for the use in PBC patients (Prince et al. 2000). Fatigue scores for PBC patients as measured by the FSS were found to be statistically, signicantly worse than for community controls and chronic liver disease controls (Goldblatt et al. 2002). These studies employed quantitative methods, which do not address the experience of fatigue from patients perspectives. The aetiology of fatigue in liver disease has remained elusive as it is typical in other conditions. A central origin has been proposed, possibly as a result of decreased levels of corticotropin-releasing hormone (Swain & Maric 1995), altered serotoninergic neurotransmission (Swain & Maric 1997) and cytokines (Swain et al. 1998). Evidence of a peripheral motor system contribution has also been described (Goldblatt et al. 2001). No effective therapy has been found for the treatment of fatigue associated with liver disease. The literature has many studies of experiences of fatigue in cancer patients (Magnusson et al. 1999, Krishnasamy 2000, Potter 2004) and patients receiving chemotherapy (Ream & Richardson 1997, Berger & Walker 2001) and to a lesser degree patients with multiple sclerosis (Stuifbergen & Rogers 1997, Deatrick et al. 1998). One study evaluated the experience of fatigue in the hepatitis C population (Glacken et al. 2003). Fatigue in this population emerged as multidimensional in nature with acute and chronic aspects. No study could be found which researched the experience of fatigue in PBC.

The study
Aim
The aim of this research was to understand the lived experience of fatigue for the people with PBC.

Fatigue and chronic liver disease

Fatigue is present in a number of chronic liver diseases, but may be most specically associated with cholestatic liver disease and, particularly, PBC. It is the most frequently reported symptom in this population, occurring in approximately 6080% of patients (Lindor et al. 1994, Pares et al. 2000), often in a degree out of proportion to the underlying liver disease severity (Cauch-Dudek et al. 1998, Huet et al. 2000). Fatigue in PBC has been reported to signicantly affect the quality of life in these patients (Huet et al. 2000) and may be related to depression in some patients (CauchDudek et al. 1998). Typically these studies have assessed fatigue by the use of either dichotomous (absent or present) or Guttman type scales (none, mild, moderate or severe).
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Methodology
An interpretive-phenomenological approach developed by van Manen (1990) and combining features of descriptive and interpretive phenomenology were chosen for this study, as it is a holistic approach to the study of phenomena with sensitivity to complexity and depth. The six research activities van Manen (1990) proposes as essential to carrying out phenomenological research are: turning to a phenomenon which seriously interests us and commits us to the world, investigating experience as we live it rather than as we conceptualize it, reecting on the essential themes which characterize the phenomenon,

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describing the phenomenon through the art of writing and rewriting, maintaining a strong and oriented relation to the phenomenon and balancing the research context by considering parts and wholes (pp. 3031). When carrying out these activities, the researcher commits to investigating a phenomenon of deep interest. The importance of understanding this phenomenon as it is lived as opposed to conceptualized requires making explicit previously held beliefs so as to be aware of how they might affect interpretation. Essential themes are uncovered by reecting on the commonalities among descriptions to put them in a written text that would capture the experience. These themes are considered both separately and as they constitute the whole of the experience. The development of the text requires writing and rewriting until the essence of the experience is captured, paying attention to the subtle undertones of language.

was performed to gain information from those who had experienced the phenomenon under study. The tape-recorded in-depth interview format of the study was described to potential participants and informed consent obtained. Participants were assured of anonymity and condentiality of the interviews and transcribed text. Interviews were arranged at a time convenient for them and conducted in a private ofce.

Data analysis
Van Manen (1990) describes four fundamental themes or lifeworld existentials that embody human existence on a more fundamental level, and encompass the lifeworlds of most humans regardless of their particular situation. These are lived space, lived body, lived time and lived human relation (p. 101). In the present study, the narrative transcripts and reective journaling were read and reread to facilitate theme identication. Salient moments that were reective of the experience were highlighted. Thematic statements were extracted and developed into phenomenologically sensitive paragraphs.

Participants
Participants were seven females and one male ranging in age from 38 to 60 years. Six of the participants were married, and two were divorced. Four worked part-time, two were on disability pensions and two were retired. Participants were recruited while undergoing evaluation for their liver disease.

Evaluation standards for qualitative research

Phenomenological research is more a philosophical perspective than a rigid method, which makes identifying appropriate criteria for evaluation difcult. Whittemore et al. (2001) describes credibility, authenticity, criticality and integrity as primary criteria for qualitative research. Credibility, a term coined by Lincoln and Guba (1985), describes the degree to which the results of the research reect the experience of the participants in a believable way. This was accomplished by returning the transcribed interviews to participants for verication that they were accurate. Authenticity (Sandelowski 1986) is closely linked and reects the portrayal of the experiences and meanings as truly those of the participants and not unduly inuenced by the interviewer. I identied my preconceptions and reviewed them periodically throughout the study to be aware of their potential inuence on the interviews and data collection. Criticality and integrity (Lincoln & Guba 1985) are necessary, given the innitely differing interpretations, assumptions and knowledge background of the investigators that can bias the research process (Whittemore et al. 2001). Themes as they were derived from the narrative text were reviewed with another qualitative researcher for assertion of plausibility. I acknowledge that the results are open to an array of interpretations; however, those identied were deemed most probable.
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Data collection
In interviews, participants were asked to describe their experience of fatigue and little prompting was used; however, questions were posed when needed to keep participants focused on the topic and to uncover experience relevant to the essential themes. The interview was started by asking the participant to describe the experience of fatigue and followed this line of questioning as needed, for example: tell me about your fatigue. How does it feel to be fatigued physically (mentally, emotionally)? What do you think causes it? How does it affect your relationships? How does it affect your work and leisure activities? Is there anything that you have found helpful? The interviews lasted from 25 to 40 minutes and were transcribed verbatim immediately afterwards to facilitate reection on the content. During and after the interviews, notes were made about impressions of the interview. Data collection took place during 2005.

Ethical considerations
Upon obtaining ethical approval for conduct of the study, potential participants were approached. Purposive sampling

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R. Jorgensen We are moving into a new house and I spent a day carrying wood and I was very tired all the next day. There is a real physical component. I like cooking a lot and cooked the Easter meal and it was interesting by the time it came to eating it, I didnt even care about it I had no appetite. Ive thought about this before but it is like I would rather sleep than eat. It is not just oh I feel a little tired it is really in my bones.

Findings
Participants described the overwhelming nature of the fatigue experience and the effect it had on their lives, and these were represented by the ve themes discussed below.

An unreliable body
Fatigue was described by participants as an all-encompassing, whole-body experience, complete and blanket-like in its overtaking of a person. There was the sense of being totally without energy and having nothing to give. The body felt heavy or physically weak. Several described the sensation of being bone-tired to illuminate the depth or degree to which the fatigue seemed to penetrate. It was not a peripheral sensation affecting parts of their bodies but a whole-body experience:
Your whole body is tired, tired and no energy. Its different from regular tiredness more debilitating. You dont care if you get up. Dragged out totally dragged out. I feel like Ive been hit by a steamroller. Its as if I have no initiative to clean or cook or anything. Its just not there the oomph.

Fatigue as always present yet insidious

There were two patterns in which fatigue manifested itself. Participants described it as distinct yet insidious in onset in that they were very aware of the start of the fatigue yet it seemed to catch them off-guard, interrupting whatever it was they were doing. Despite its suddenness, the fatigue was unmistakable:
I nd that even if were doing something in the evening itll just come over me well be sitting and playing cards or doing whatever and all of a sudden Im so tired.

Terms such as weakness were used when talking about the difculty in lifting objects. There was the sensation that they felt many times heavier than previously. The fatigue also seemed to have an effect on stamina and participants were aware of their resultant limitations. This caused them grief in that formerly enjoyable activities needed to be relinquished as they could no longer trust their bodies:
It bothers me a lot that I cant trust myself to take my grand kids. I like to take my grand kids and go for a week and take them some place. Now I cant do that unless I take somebody else with me and that really bothers me.

The fatigue was experienced as unpredictable and difcult to control. Although the effect as described by participants was mostly physical, the mental effects were brought to light in problems when driving. Several of the participants described close encounters that caused them worry and concern. There was a loss of condence in ability to endure any driving at all for some and leaving the majority of the driving to their spouses. They no longer trusted themselves to be able to do what they previously had taken for granted:
I went to the doctor and told him Im so damn tired it aint nothing funny. He checked me over with blood tests and said There aint nothing wrong with you. The very next day I fell asleep at 3:00 in the afternoon. I ran into the ditch and wiped out a guys mailboxes.

The fatigue induced physical sensations of feeling ill. Participants described the fatigue as a feeling of having the u or body aches. This seemed to imply a more pathological meaning to the fatigue to distinguish it from routine tiredness:
I was like so fatigued. I was where I was physically not feeling well. It was almost like u symptoms. My body aches were so bad. When I get the tired, I get an ill feeling where I just dont feel well.

While having a distinct onset, others described no reprieve from its effect. The fatigue was resistant to rest or sleep and had no relation to previous activity. It existed as a presence in and of itself. Sleep did not result in feelings of rejuvenation; rather participants were cheated out of its recuperative effects. Its lack of relation to rest or activity made it difcult to make sense of:
I go to sleep at night. I go right to sleep sleep like a baby all night until I get up in the morning. I usually average 10 hours of sleep. I get up in the morning and Im not one bit rested. Im just as sleepy and tired as I could be. I just have no energyI dont take a nap too often, cause you get up and feel just as tired.

The impact of the fatigue and its degree or depth is part of how it is described as being inherently different from regular tiredness. Words used to describe it expressed it in terms of how strongly it hit the impact of it being measured in the effect it has on psychological or physiological drives or on desire or purpose:
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The effect of the fatigue was such that participants described the thought that they could spend their days lying down, not

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necessarily sleeping, but doing nothing. During particularly bad episodes, days would be spent in bed:
I didnt think I could teach. I would take naps from 26 hours and then I would go back to bed and sleep 1214 hours. I was like so fatigued. I can stay in bed all dayNo matter how much I sleep during the day it doesnt seem to make any difference to my sleeping at night.

met they had to push through the fatigue or force themselves to do what needed to be performed. Others would furtively schedule hidden times to sleep when no one was aware. Sneaking out to the car to sleep over the lunch hour during the work day or pulling over to the side of the road to gain perhaps a few minutes of rest was described:
I kind of try to keep it from him (husband) he probably has no idea how much I sleep during the day when hes not there. I work parttime because I did stay home for a year and I didnt get up in the morning. I can stay in bed all day. And thats embarrassing to have your husband come and nd you not dressed and still in bed from morning. Those are my worst days where there isnt something that forces me to get up and move.

There was an overwhelming urge to just lie down whenever it hit to gain relief despite the knowledge that this was not likely to happen. There was an almost constant overwhelming sleepiness that never abated.

Planning a life to reserve energy

Participants described that if they went hard for several days they would pay the price for this in that they had to allow for a rest period to replenish their reserves. This involved planning for time to recuperate and incorporating it into their vacation or work plans. There was the sense that they had to protect their schedule to accommodate a day to do nothing but sleep:
If I dont get my naps in after about 2 or 3 days or 3 or 4, I can take a day to just sleep all day like I have to catch up on it. We travel a lot and we always drive straight through and I cant do that anymore. Its hard for me to drive long stretches. If we do drive straight through it takes me a day or two to recover so we schedule around that.

This need to maintain the appearance of a normal life was also reected in the need to push through the fatigue to complete housework or parcel it out in small amounts to get it performed. Responsibilities the women had historically been accountable for were willingly handed over to their spouses:
I try to get a little bit done. Like the laundry, I try to get a little bit done one day and I do a little bit the next day. But like with the cooking its like I just try. He (husband) does a lot of the cooking in the house I just cant bring myself in to do it.

Even though the fatigue was described more in terms of its physical effects, there were references to a mental component such as having a fuzzy brain or losing a train of thought:
I used to work with adolescents and we had sessions where we were reading and I would get lost when reading couldnt remember my spot. I would have to be careful. I would say Lets go for a walk to deal with it.

Energy needed to be reserved for the most important activities and life meant planning for times to rest. Frustration was evident in that what needed to be performed was not being performed:
I dont really do a thing that I dont have to do. We moved last year and the shed is sitting full of stuff. I should have been out there this winter unpacking stuff and putting parts back in the parts bin and stuff but I didnt do anything out there!

Emotional consequences
Feelings of dysphoria and general apathy associated with the fatigue seemed to be disturbing to the participants. It was important to them to distinguish fatigue from depression or to determine whether there was a component of depression involved. Fatigue seemed to take hold of their lives keeping them from doing the things they enjoyed and, beyond that, nding that they did not enjoy what they used to enjoy. Fatigue meant experiencing life as on hold or feeling like a spectator viewing from a distance:
I dont even know what I like to do anymore. Thats where its at.

A number of coping strategies employed by participants were evident in their narratives. Delegating responsibilities, distraction, reducing work schedules and planning for time to recuperate were all ways they dealt with the fatigue. Despite longing for a former more energetic self, adaptation to fatigue as a chronic presence had set in.

Struggling to maintain normality

An effort to maintain a normal life or the appearance of one was evident from the interviews. If obligations needed to be

Used to go shopping and now I get wore out like I said I dont even know what I enjoy anymore. Im just so tired all I want to do is sleep and thats what makes me happy. I used to be more outgoing a happier person. 693

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Fatigue meant changes in who they were and boredom with their lives. They sensed that they were no longer interesting as they did not enjoy what they formerly enjoyed or do things they used to do:
I dont get excited about anything. Its like Im watching the world go by and Im just in the background watching everything going on.

Participants described reducing work schedules or quitting altogether if nances allowed because of the fatigue. There was insufcient stamina to attend evening meetings or spend time with customers. More was expected from them than they were able to contribute. Feelings of inadequacy and frustration emerged from not being able to carry on with desired responsibilities:
It bothers me a lot that my house feels too big for me to take care of. I cant do the whole house, you know clean the house so he ends up picking up a lot of the slack and thats not fair. It bothers me from the standpoint that hes looking at retiring and we need to have health insurance and hed like for me to be able to work full-time so I can carry health insurance and I just cant work full-time. Its frustrating in that respect.

In a way their world had been reduced in that social contacts were less with reduced work schedules and leisure activities. An increased introspection into their own plight also tended to reduce their lived space, yet in some ways it was larger as in a house that felt too big to clean.

Discussion
Returning to the intention of this study, the data suggest that the experience of fatigue in this disease is overwhelming and can inuence daily living. While the intent of this study was not generalizability, common links or experiences may be seen between these participants and other participant groups. The intention was to make known the meaning of fatigue in this disease in a believable and credible way. Fatigue as experienced by patients with PBC is that of an overwhelming sustained state of exhaustion that occurs without relation to antecedent events and is unrelieved by rest or sleep. It has repercussions for physical capabilities, social responsibilities and psychological well-being of those affected. By virtue of these characteristics, it can be considered chronic fatigue as dened by Piper (1989) and experienced by other chronic disease populations (Ream & Richardson 1996). The physical effects of the fatigue were notable, robbing participants of stamina and endurance, and for some resulting in a sensation of being ill. The descriptions of
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aching and u-like sensations by these participants may be part of the non-specic systemic complaints or sickness behaviours which have been reported to potentially have a physiologic basis (Swain & Maric 1995). An aching sensation in association with fatigue has also been experienced by hepatitis C patients (Glacken et al. 2003), and cancer patients; however, in the latter group, it may be related to the effects of chemotherapy (Ream & Richardson 1997). The overwhelming nature of their fatigue parallels the oppressive fatigue described in the hepatitis C population (Glacken et al. 2003). Despite the unrelenting nature of the fatigue in these PBC patients, there also occurred an insidious and more intense type of fatigue that seemed to catch those aficted off-guard. This unpredictable fatigue resulted in insecurity as they were not sure whether they would have the endurance needed for everyday functioning. Life meant always having to take fatigue into account and in that respect, even when the fatigue was not as bad, it was ever present in their minds. As they could not rely on their bodies, they withdrew from previously taken-for-granted responsibilities. There was uncertainty about the future as the fatigue had inuenced their ability to live normally. There was a loss of participation as they withdrew from activities they previously enjoyed. This sense of absence and uncertainty was evidenced in a study of fatigue in women with multiple sclerosis (Olsson et al. 2005). Work responsibilities needed to be shared with or delegated to others, resulting in a type of dependency. Participants felt guilt in the fact that fatigue also affected the lives of those around them. Withdrawal from previous activities also resulted in feelings of being disconnected with a former life and loss of a former happier self. Their lives had become boring and isolated. There was a sense of watching the world go by, an observation made by one participant in this research. Dzurec et al. (2002) in a study of fatigue in inordinately tired women described how participants moved from a state of relatedness to a feeling of being disconnected as a result of the fatigue. The disconnectedness was associated with interpersonal and intrapersonal changes, a feeling of emotional absence and lack of energy and motivation. These manifestations were apparent in the participants in this research. Similarities between these manifestations of fatigue and depression-like symptoms resulted in a need to question whether they were depressed. Despite the fact that participants felt they were not depressed, it was a concern of theirs. Depressive symptomatology has been associated with fatigue in PBC patients, comparable in severity to that of depressed patients undergoing psychiatric evaluation and it is more prevalent in fatigued vs. non-fatigued PBC patients (Cauch-Dudek et al. 1998). It may be difcult to discern

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What is already known about this topic

Fatigue is a prevalent symptom for people with primary biliary cirrhosis and has a major impact on their quality of life. The severity of fatigue is often out of proportion to the severity of the underlying liver disease. The fatigue experience of patients with chronic liver disease has not been well researched as in other chronic conditions.

patient. Patient knowledge is essential for nurses to understand the complex multidimensional nature of fatigue and theoretically articulate this understanding.

Study limitations
A limitation of this study is the inability to generalize the results to other groups, as is typical of qualitative research. However, commonalities may be found in the experiences of fatigue across diagnostic groups. Another limitation is the fact that the interpretive nature of phenomenological inquiry makes it vulnerable to researcher bias. Bracketing of preexisting assumptions by this researcher and ongoing review of these helped to minimize this risk.

What this paper adds

Fatigue means a body that cannot be relied upon to carry on with the activities of life. Withdrawing from enjoyable activities results in a sense of being disconnected with a former life and may mimic feelings of depression. Fatigue in primary biliary cirrhosis is an unrelenting yet insidious intrusion into the lives of those aficted. which precedes the other and difcult for individuals with PBC-related fatigue to distinguish between the two as is evidenced in this research. Coping strategies that participants used included activity restriction, relinquishing responsibilities to others, allowing for rest periods and, when necessary, pushing through to get things performed. Parsimonious use of energy by restricting activities only to essential ones has been used in the cancer population (Rhodes et al. 1988). No particular strategies that participants described diminished fatigue, a trend seen in other chronic fatigue populations (Glacken et al. 2003). Fatigue had become a constant presence, which meant pushing through in an attempt to maintain normality or conserving energy to be able to do what was important. This type of coping response is characteristic of chronic fatigue as there is the awareness that fatigue is part of living. In conditions where the fatigue is temporary, as in chemotherapy or episodic as in asthma, there is more of a tendency to give into the fatigue knowing an end is in sight (Paterson et al. 2003). This study provided an opportunity to delve into the area of knowing how individual patients experience a symptom that signicantly compromises quality of life. Studies of fatigue prevalence and the impact result in knowledge that is generalized to the population with the condition, yet it does not provide knowledge about how individual participants respond. Liaschenko and Fisher (1999) have termed this type of knowledge as patient knowledge which goes beyond the biomedical understanding of disease or case knowledge of a

Conclusion
It is important for healthcare providers to understand the nature of fatigue in chronic disease and appreciate how it differs from the explainable tiredness common to the healthy people. This understanding is needed for providers to be effective and empathic counsellors. The nature of the phenomenological method of seeking the patient experience may be therapeutic in itself. As a method phenomenology consists of the ability, or rather the art of being sensitive (van Manen 1990, p. 111). Nurses can incorporate sensitive listening into their practise to allow patients to openly share their experience and provide validation for them. The dialogue may serve to illuminate for patients ways they are indeed coping with their fatigue which could lead to ideas for intervention research. More research is needed to further understanding of patients experiences of fatigue in chronic liver disease and to nd effective interventions for fatigue in this and other conditions. Qualitative research is an investigative and therapeutic form of inquiry that may give important insights into ways of helping patients cope with fatigue in chronic illness.

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