by Margaret I. Fitch, Deborah Mings and Alan Lee

doi:10.5737/1181912x184124131
Exploring patient experiences
and self-initiated strategies for
living with cancer-related fatigue
by Margaret I. Fitch, Deborah Mings and Alan Lee
Abstract
Fatigue is one of the most prevalent and distressing side effects of
cancer for patients. It threatens quality of life and can interfere
with daily living. Systematic approaches for assessing and
intervening are recommended for implementation in many cancer
centres.
Prior to implementing a formal fatigue program, this study was
conducted to explore what cancer patients do to cope with fatigue
on their own. In-depth interviews were conducted with 31 patients
receiving chemotherapy to identify the strategies they used to cope
with the fatigue they experienced. Patients were able to identify
when they noticed the fatigue and what they had tried to do. Most
individuals used resting, sleeping, and decreasing activity.
Relatively few tried a range of other strategies. Many perceived the
fatigue as a normal part of cancer treatment and something with
which they just had to put up. Heightened emotional reactions
emerged when the fatigue interfered with an activity that was
important to the individual. Clearly, without a systematic patient
education program, patients are left to learn through trial and
error what could be helpful to them in coping with the effects of
fatigue.
Fatigue is one of the most prevalent and distressing side effects
of cancer. It is the only symptom reported by the majority of cancer
patients in all diagnostic groups (Blum, 1997; Curt, 2001). It
threatens quality of life and interferes with various activities of
daily living (Ahlberg, Ekman, Gaston-Johansson, & Mock, 2003).
Often profound, it can influence relationships and adherence to
medical therapy. Based on a growing body of evidence about
interventions to cope with fatigue, cancer centres are encouraged to
implement systematic or programmatic approaches for fatigue
management.
Prior to initiating a systematic program to assist cancer patients
manage fatigue, an investigation was undertaken to identify what
patients did of their own accord to deal with this symptom. This
investigation was designed to establish a baseline picture prior to
implementing the patient education program, and provide ideas that
could be incorporated into the program. It was anticipated that
strategies patients found useful in coping with fatigue could be
identified and shared with other patients.
Introduction
not feeling motivated as a side effect of illness and treatment, and as
a mood state characterized by de-activation (Frijda, 1986; Smets,
Garssen, Schuster-Uitterhoeve, & DeHaes, 1993). There isn’t one
universally accepted definition (Piper, 1993; Tiesinga, Dassen &
Halfens, 1996).
However, there are common threads running through the
existing definitions. These include the notions that fatigue is
subjective and multidimensional (Aistars, 1987; Irvine, Vincent,
Grayson, Bubela, & Thompson, 1994; Piper, 1993; Rhodes,
Watson, & Hanson, 1998; Smets et al., 1993; Winningham, et al.,
1994), has different modes of expression (Hickok, Morrow,
McDonald, & Bellg, 1996; Smets, Garssen, Cull, & deHaes, 1996),
exists along a continuum (Irvine et al., 1994; Jensen & Given,
1993), and involves energy depletion (Irvine et al., 1994; Robinson
& Posner, 1985). In cancer circles, fatigue is frequently defined as
a condition characterized by subjective feelings of tiredness; loss of
strength; endurance or energy that varies in degree, frequency, and
duration with different modes of expression (i.e., physical,
functional, cognitive, emotional, social and motivational) (Ahlberg
et al, 2003).
The prevalence of fatigue in cancer has been well documented.
Estimates of fatigue during chemotherapy range from 70% to 100%
(Cassileth et al., 1985; Fernsler, 1986; Jamar, Meyerowitz,
Watkins, & Sparks, 1983; Nail & King, 1987; Potempa, 1993;
Rhodes et al., 1998) while those in radiation range from 80% to
100% (Adams, Quesada, & Gutterman, 1984; Anderson & Tewfik,
1985; Cassileth et al., 1985; Greenberg, Sawicka, Eisenthal, &
Ross, 1992; Meyerowitz, Sparks, & Spears, 1979; Nail, 1993;
Oberst, Hughes, Chang, & McCubin, 1991). Additionally, the
majority of patients with advanced disease experience this
symptom (Aistars, 1987; Billings, 1985; Donnelly & Walsh, 1995;
Winningham et al., 1994). In studies where comparison groups
have been used, fatigue is more of a problem for cancer patients
than for the general population (Ahlberg et al., 2003; Glaus, 1993;
Irvine et al., 1994; Potempa, 1993). Chen (1986) documented that
fatigue is seven times more prevalent in the cancer population than
Fatigue is as difficult to define and measure today as it was in 1921
when Muscio stated that, “the term be absolutely banished from
scientific discussion and consequently that attempts to obtain a
fatigue test be abandoned.” Although the meaning of fatigue in
common usage is intuitively clear, as an empirical phenomenon
fatigue has many different meanings. It can refer to tiredness after
physical activity, to concentration problems after mental efforts, to
Background
CONJ • 18/3/08
124
Margaret I. Fitch, RN, PhD, is the Head of Oncology Nursing
and Supportive Care, Odette Cancer Centre, Sunnybrook Health
Sciences Centre, Toronto, ON.
Deborah Mings, RN, MN, is a Clinical Nurse Specialist (Skin
and Wounds) at Hamilton Health Sciences Corporation,
Hamilton, ON.
At the time of this project, Alan Lee, MD, was a medical student
at Odette Cancer Centre, Toronto, ON.
Corresponding Author: Margaret I. Fitch, RN, PhD, Odette
Cancer Centre, Sunnybrook Health Science Centre, 20756
Bayview Ave., Toronto, Ontario M4N 3M5. Phone: 416-480-5891,
Fax: 416-480-7806, E-mail: [email protected]
RCSIO • 18/3/08
doi:10.5737/1181912x183124131
in the general population. Additionally, fatigue is qualitatively
different for cancer patients than for the general population.
Cancer-related fatigue is rarely relieved by rest or sleep (Berger,
1998, Piper, 1993).
The severity of fatigue in cancer has been described as ranging
from mild to moderate and severe, but is not directly related to
type of cancer, cancer stage, size of tumour, number of nodes
involved or the presence or site of metastases (Servaes, Verhagen,
& Bleijenberg, 2002). Winningham et al. (1994) stated that the
pattern of fatigue over the illness and treatment regimen varies
with disease type, site and regimen. For many patients, fatigue
tends to increase over the course of treatment and dissipate once
treatment has finished (Chen, 1986; Hickok et al., 1996; Irvine et
al., 1991; 1994; Nail & King, 1987). However, for some patients,
fatigue has been reported to persist after the treatment has
finished, sometimes for several years (Berglund, Bolund,
Fornander, Rutqvist, & Sjoden, 1991; Devlen, McGuire, Phillips,
Crowther, & Chambers, 1987; Fobair, Hoppe, Bloom, Cox,
Varghese, & Spiegel, 1986).
Fatigue becomes significant when it reaches a level that
adversely affects an individual’s quality of life (Aistars, 1987;
Fernsler, 1986; Jamar, 1989; Kurtz, Kurtz, Given, & Given, 1993;
Skalla & Lacasse, 1992; Walker, Katon, & Jamelka, 1993). Fatigue
has been reported to interfere with employment, leisure and social
activities, activities of daily living and the ability to care for one’s
self (Pearce & Richardson, 1996). Fatigue can precipitate or
aggravate discord in family relationships. The burden of caregiving
can induce fatigue in family caregivers as they assume roles
previously performed by patients (Carter, 2002). Fatigue can also
impact on a person’s ability to understand and use information. In a
convenience sample of 910 men and women with cancer, fatigue
was observed to have an impact on all four dimensions of quality of
life: physical, psychological, social, and spiritual (Ferrel, Grant,
Dean, Funk, & Ly, 1996).
It is almost universally accepted that the measurement of
fatigue needs to be subjective and multi-dimensional. Over the
years, several instruments have been developed to measure
fatigue in cancer populations across its multiple dimensions from
the patients’ perspective (Skalla & Lacasse, 1992; Smets,
Garssen, Cull, & deHaes, 1996). Piper’s scale is one of the most
popular and measures fatigue using the characteristics of
temporal, intensity, affective, sensory, evaluative, associated
symptoms and relief patterns (Piper et al., 1989). A recent
addition to the collection of fatigue measures is the Fatigue
Pictogram (Fitch, Bunston, Mings, Sevean, & Bakker, 2003). It
was designed to measure two dimensions of fatigue and be used
as a screening or triage device. By using a screening instrument,
patients who are experiencing difficulties with fatigue can be
identified. An in-depth assessment of fatigue can then be
conducted by a health care provider and appropriate interventions
offered.
Assessing the nature and pattern of fatigue increases the
likelihood of linking interventions to an underlying etiology and
selecting the appropriate intervention. Changes in the patients’ drug
regimen, reversal of anemia or metabolic abnormalities, or
treatment of sleep disorders or depression are potential avenues for
intervention (Portenoy & Itri, 1999). Psychostimulants (e.g.,
methylphenidate, pemoline and dextroamphetamine) and selective
serotonin-reuptake inhibitors are being used empirically to
counteract debilitating fatigue. However, there are no controlled
studies demonstrating their efficacy in cancer-related fatigue
(Cleeland, 2001). The nonpharmacologic approaches for the
management of cancer-related fatigue are receiving more attention
and are showing great benefits to some patients. These include
walking or exercise programs (Berger, 1998; Dimeo, 2001;
Schwartz, 2000), educating patients about fatigue (Grant, Golant,
CONJ • 18/3/08
Rivera, Dean, & Benjamin, 2000), and individual counselling by
professionals (Fawzy, 1999; Gaston-Johansson et al., 2000).
Magnusson, Moller, Ekman and Wallgren (1999) noted that some
patients cope with fatigue by distraction (e.g., reading, listening to
music), resting more frequently, exercise by walking, and preparing
ahead for various activities during the day.
Current practice guidelines by the National Comprehensive
Cancer Network indicate that a systematic (programmatic)
approach is required to screen, assess, intervene and manage
fatigue appropriately. Prior to implementing such a program at our
cancer centre, we wanted to gain an understanding of what patients
did of their own accord about fatigue. How did patients manage
their fatigue when there was no systematic approach in place at the
cancer centre? Did patients have strategies they used and found
helpful? It was anticipated that learning more about what patients
did to cope with their fatigue could help with the design of the
patient education program and would also provide a baseline for
our work.
The purpose of this investigation was to gain a better
understanding about what cancer patients do to cope with the
fatigue they are experiencing. We hoped to gain insights into what
strategies patients initiated on their own to manage their fatigue,
which ones they found useful, and what made it difficult to deal
with the fatigue.
Purpose
This study made use of in-depth interviews with cancer patients
receiving either radiation or chemotherapy treatment for their disease.
Following ethics approval by the hospital research ethics committee,
a convenience sample of 31 patients was accrued in a comprehensive
cancer centre. The nurse caring for patients told them the study was
being conducted once having identified the patient as a potential
candidate for the study using the following criteria: 1) a definitive
diagnosis of cancer, 2) more than 18 years of age, 3) able to
understand and speak English, and 4) mentioned to their nurse that
they were experiencing fatigue. If the patient was interested in
hearing about the study, the nurse contacted the research assistant
(RA) who informed the patient about the study purposes and
participation and obtained the consent. For patients who were
interested in participating, an informed consent was signed and a time
scheduled for the interview.
All interviews followed the interview guide developed for the
study. The guide contained open-ended questions for use by the
interviewer to gather information about the experience with fatigue
and what individuals did to cope with it. Once several demographic
questions had been posed (i.e., age, marital status, education level,
work status, cancer type, diagnosis date), participants were asked to
describe the events surrounding their diagnosis and treatment
decision-making, their awareness of when the fatigue started, the
impact of the fatigue on their daily lives, what strategies they used
to cope with the fatigue, which strategies were helpful, whether
they talked with anyone about their fatigue, and suggestions about
what a cancer centre could do to help patients who were
experiencing fatigue. We wanted to understand their awareness of
their own fatigue, its impact on them, and their subsequent actions
to cope within their experience. Probes were used only as
encouragement (i.e., tell me more about that) or for clarification
(e.g., did that happen before or after the treatment?). The
interviews were conducted by the skilled research assistant in the
clinical setting, were audiotaped, and lasted between 30 and 45
minutes.
The interview audiotapes were transcribed verbatim and any
identifying features were removed. A content analysis was performed
(Silverman, 2000). Each team member independently read the
Methods
125
RCSIO • 18/3/08
transcripts and made marginal notes about the content for each
interview. Team members discussed their impressions of the content
and, working together, designed a categorization scheme (set of topic
categories) for the content analysis. One team member then
completed all the coding according to the agreed-upon scheme (MF).
The primary content categories included talking about the fatigue, the
impact of the fatigue on the person, and strategies to cope with the
fatigue experienced. The content within each category was then
reviewed and summarized, and the key ideas were identified. These
key ideas will be reported below.
A total of 31 cancer patients participated in this study. The 15
men and 16 women ranged in age from 30 to 78 years (average
56.3). Nineteen were married or living with a partner and six were
continuing to work at reduced hours throughout their treatment. A
cross-section of cancer types was included (see Table One) and
eight participants were living with recurrent disease. All were
currently receiving treatment for their disease at the time of the
interview.
Findings
Describing the fatigue/Talking about the fatigue
Without exception, all participants described feeling shock and
dismay when they learned they had cancer, and the disruption and
upheaval they experienced in their daily lives because of the
treatment regimens. All were able to pinpoint when the fatigue
invaded their lives and they could isolate its effect on them. For
most, the fatigue began after their cancer treatment was started. The
few who had experienced fatigue prior to the diagnosis now thought
about it in terms of being a sign they had had cancer before it was
diagnosed.
When asked to describe the fatigue, participants elected to talk
about it using a range of words (e.g., tired, fatigue, no energy.) Their
descriptions provided wonderful illustrations of what the experience
of being fatigued was like for them.
doi:10.5737/1181912x183124131
nausea can make you feel tired, too… I get this feeling if I don’t sit
down I’ll pass out… it’s just a sense of no energy and, ah, it’s like the
muscles won’t work. There’s no energy in your body and there’s no
energy in your mind. (1A)
Although most participants talked about noticing physical
aspects of the experience, some described others such as the mental,
emotional, and motivational aspects of their experiences with
fatigue.
Mental:
It is hard to think about anything. I don’t want to think of anything.
And my body tells me I am exhausted, lie down, you know, take it easy.
(5)
It’s both physical and mental. Like you can’t concentrate on
anything for a prolonged period of time. I read a newspaper
article and then I have to close my eyes, just close them for a
while. (9)
I haven’t felt… I don’t have the mental energy anymore. I guess
I don’t know whether it was the stress and trauma or whether it’s
the age plus the chemo. I don’t know, but I just don’t have the
energy to think, to worry about things, you know. I’m kind of in a
zombie sort of state, that sort of twilight zone. Tho’ I’m not totally
comatose! (1A)
Emotional:
I am depressed more. I never was before…it’s like feeling very sad.
That’s it, just sad. (7A)
Lethargy:
It was not the fatigue so much as feeling lethargic. You are not
feeling your normal zip, the get up and go, that kind of stuff… it’s a
monumental task to do anything. (2)
I didn’t realize, really realize, how tired I would get… how
lethargic… it was almost like running into a brick wall… you keep
thinking if you have a couple of good night sleeps it will get better…
but you do feel exhausted for awhile. (7)
Exhaustion:
It’s like you are totally exhausted… like when you’ve worked hard
and you are tired, it’s not like that. It’s like you are wearing, say like
metal, full body metal [armour] like you just can’t go on… like you go
to bed, you wake up and you’re tired. (9A)
I’m not going around and falling asleep all day. I just have no
energy, you know, the body is like a dead zone… I haven’t got what it
takes to make [my arms and legs] do things. Everything I do is a
thinking process. Now get up. Now move yourself, you know. It’s not
like you get up and do things naturally. (1A)
It’s like having someone sitting on your shoulders. Your muscles
aching and you’re working in slow motion. The extent of your travel
is really from the bed to the chesterfield if you can get away with it.
(23)
Overwhelming tiredness:
It is like nausea, or maybe headachy, so you slow right down.
(2A).
It’s a tiredness to the point of nausea, almost. It’s hard to explain.
You don’t actually feel nauseous per se, but you, it’s a form of
tiredness that just leaves you feeling, or maybe it’s a form of, maybe
CONJ • 18/3/08
126
Table One. Selected demographic characteristics (N=31)
Gender
Age (in Years)
Marital Status
Work Status
Time Since
Diagnosis
Male
15
Female
16
Married/Common Law
19
Average: 56.3
Range: 30–78
Single/Divorced/Widowed
Working reduced hours
On leave/Not working/Retired
Without recurrent disease (n=23):
Range 1–48 mos; Mean 13.5 mos
With recurrent disease (n=8):
Original Range: 2–29 yrs;
Mean 11.9 yrs
Recurrent Range: 1–6 yrs;
Mean 2.75 yrs
Type of Cancer Breast
Colon
Throat
Esophageal
12
6
13
10
9
3
2
Pancreatic
2
Lymphoma
1
Prostate
Cervical
Melanoma
2
1
1
RCSIO • 18/3/08
doi:10.5737/1181912x183124131
Motivational:
I find that I really have to push myself to do stuff… I really have to
psych myself up to do it. And I do find I have a lot of trouble
concentrating and focusing and stuff and getting myself motivated to
do things. (22)
Impact on aspects of living
These participants noticed the fatigue had an impact on various
aspects of their daily life. The focus within the descriptions was often
one of not being able to do something they used to do before their
treatment began. Given the nature of the sample (i.e., number of
retirees), the specific examples they offered were frequently oriented
around leisure and housework-related activities. Those who were
working during their treatment had all made adjustments to
accommodate the fatigue.
Decreased activity:
…the activity, that’s the main sort of impact on me. And I cannot
walk too well. Everything is slowing down at this point… I just have
less energy. (3)
Even tho’ I am pretty sick, I drag myself out of bed, I drag myself
to work. And I force myself… you get so tired that you just don’t want
to do anything. You just want to go home and just hit the couch… I
was just so tired… I lay on the couch. I couldn’t move… I try to get
up, but I can’t… it literally knocks you off your feet… I had no energy
whatsoever. I didn’t eat. I didn’t want to do anything… It kept me from
doing my exercise… I missed shows… it just puts my life on hold to
the point it sets me back…I can’t be myself since cancer. I cannot get
up and go and do whatever I want to do at times. I have to plan
everything around my treatment because of how I feel…my whole life
has changed. (6A)
Difficulty with daily tasks:
…I just haven’t been able to do so much. I can’t vacuum. I can’t
clean the bathtub, that scrubbing, you know. I can clean the toilet or
the sink, but the big scrubbing jobs I can’t do. I have to do things in
bits and pieces now, and I only hope it will improve. (2)
I’m great as long as I am sitting. So it’s basically the walking about
that bothers me… it’s hard to do anything like go shopping or
anything like that. I mean, standing in line I thought I’d pass out!
(4A)
Curtailed social activities:
I haven’t been getting anything much as far as social. I really don’t
want to. You just sort of want to be by yourself, just curl up and sleep
or whatever. That is all you want. I mean, you really can’t maintain a
conversation with people for a very long time. (9)
I used to be active all day long… I led quite an active life…
golf... running, working… 40 hours a week… Scottish dancing
and so on… now I am really cut off from those folks, the friends
that we had with those activities… we haven’t really been
travelling. (5A)
We don’t entertain as much as we used to… and my wife has to
do more around the house now. I have this strength limitation.
(3A)
…just basically your life is not as lively because lots of times
you’re not quite well enough to go out and see people and that sort
of thing. But you do the best you can and go out when you can… I’ve
had to stay close to home. I normally travel quite a bit and I have
not been out of [the city] since last year… you don’t often feel quite
brilliant… I get fatigued and I don’t feel 100% quite a lot of the
time. (4A)
Emotional responses to the situation
The emotional response or distress for the person experiencing
the fatigue was often linked to how much of an issue it was for the
CONJ • 18/3/08
individual to be unable to do something that was of importance to
them. The emotional responses ranged from minimal to
frustration.
Yes, it can be frustrating, because you want to do things… but you
find you want not to start projects… not do as many things,
especially creatively… as far as going out and doing things, you
don’t have the gumption to get up and go out and have more of a
social life. (15)
Whether or not the fatigue and its impact were perceived as a
problem for the person was embedded within their attitude or
perspective about managing it. For some, if they had to adjust, but
could still do important activities to some degree, the fatigue was not
as much of an issue for them. Others, who found themselves rather
limited in doing what was important to them, were more upset about
the fatigue.
My walks are shorter… the amount of time I spend swimming
lanes is less. I am good for a golf game… It’s a question of degree
more than the activity. I’m probably down to 25% in terms of what
I used to do. My stamina is pretty good. I don’t have trouble
getting up and going to work. I don’t have to push myself…
relatively mild side effects. But, as we go down the road, who
knows? (3A)
I haven’t really considered it a real problem. It doesn’t stand in the
way of getting things done… it takes a bit longer… I have to space
things out a lot more than I did… sort of wish you would get more
done. Sometimes. (19)
Some participants were very clear that, as long as the fatigue
was temporary, and they thought it was, they could cope for now.
They could make the necessary adjustments on a short-term
basis.
You know, I know it’s something I have to do for now and so I am
OK with it, as long as it is not a permanent thing. (6A)
I don’t feel frustrated because I know that in a month or so it’ll
be back to normal, I hope. It is annoying, actually, but not too bad.
(23)
For some participants, the fatigue was clearly a problem for them
and a source of frustration and distress.
It’s a drag. There’s no other way to put it. I am usually, like, an
active kind of go-go-go kind of person. So, to me, that’s the worst part
of having cancer—even this, the crappy chemo, everything,
whatever—to me, the hardest part is the fatigue. You want to do things
and you can’t. That’s the hardest emotionally for me. The toughest
thing. (22).
I still worked every day… I think maybe that is why I was exhausted
after. Because I didn’t want to look weak or unable. And I wanted my
life to be as normal as possible. There is something about it,
especially if you are younger and going through cancer. If you have a
job it is part of the normal world, the healthy world. So you try to
pretend nothing is wrong. (2)
Patient-initiated strategies to cope with fatigue
No one reported they did not try to do something about the
fatigue. Most of the patients reported using several strategies to try
to deal with it. A small proportion described using more than 10
different types of strategies while the majority focused on three to
four. The strategies described in Table Two are presented in
descending order of frequency reported by the participants (i.e.,
those reported most often by the participants are described first).
All participants described using the strategies of sleeping, resting,
and taking naps. Many described stopping an activity or adjusting
their activities. Few used exercise. Patients often elected to try
strategies they had used in the past to deal with feeling tired.
Sometimes the strategies patients used were helpful but, other
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Table Two. Patient-reported strategies to cope with fatigue (reported in descending order of frequency)
doi:10.5737/1181912x183124131
Sleeping/Taking Naps
• Sleep, rest, not doing active stuff. Just like sitting down and watching TV...and I guess maybe those two-hour naps in the day help. (Marg, 40)
• Any fatigue I have, I deal with it as I always have. I take cat naps. (Ian, 60)
• I do normally take a rest every day. I try to take a nap every day. Sometimes I sleep. (Mary, 60)
• Sometimes just close my eyes and thrash around a bit, try to relax. (Mark, 70)
Lying Down/Resting/Relaxing
• If I am standing [and I feel overwhelmed] I feel I have to sit down. If I sit down, I am fine. Other times, I realize the only way I am going
to get out of this sort of situation is to go and lie down, you know. (John, 75)
• ...when I am home, I lie down and I think that helps. I don’t lie in bed. I lie on the couch. I don’t go upstairs. I turn on the TV or read a
book. (Jackie, 58)
Stopping an Activity/Doing it in Stages
• I had to stage it all out. Like clean the bathroom, do the laundry...make the pie crust. Rest. Fill it later. I can’t do it all at once any more.
(Nancy, 58)
• Sometimes, I have to drag my keister, but I will drag it. I will cut the grass at the lake, you know. It will take me maybe twice as long to
cut it, but it will be cut... I take little rests... I will cut half and go take a little drink and sit down. (Mark, 70)
Adjusting (reducing) Activities
• ...you would want to empty your dishwasher, so you sit down to do it. If you want to do any cooking or anything like that, you have to
sit...walking from the parking lot to here, I had to keep sitting down. (Mary, 60)
• If I feel tired or I know there’s something, say for example, that I have to do like in the evening, I will kind of make sure I take it easy in
the daytime and in the morning, so I can rest in preparation for that. (Marg, 40)
Organizing Daily Activities/Planning Around Fatigue (and Chemo/Radiation Cycle)
• I don’t make elaborate plans to do things and I would say to people, I have a window of opportunity of one week in which we can go to the
movies or we can go out to dinner or go out for a walk or whatever. And the other three weeks, I’d have people come in to me. (Mary, 60)
• I can do almost everything that I normally do... I have been able to arrange my life so the fact I have fatigue doesn’t get in the way. And
if I get tired, then I sit down and don’t do anything. (Alex, 59)
Accepting Help from Family and Friends
• It’s lack of physical and mental energy... I have days when things are a lot lower... the energy level’s quite low...and then my husband has
to jump in and do the daily chores more or less. (Sally, 42)
• Without the support of family and friends, I don’t think I could have made it... they will come and make dinner, you know. Clean the house
and say, “Don’t you worry”...my brother comes over and cooks and my husband does the grocery shopping... the laundry and stuff like
that. (Sue, 48)
• My wife... we talk about it. We talk about what’s happening... We devise strategies to deal with it... try a division of work that fits the
pattern of how I am feeling. (Ian, 60)
Keeping Busy/Finding Something to Do
• As long as you are doing something, something that keeps your mind off it. (Gale, 58)
• I find reading helps me... it keeps your mind going and it keeps my mind off the fact that I am tired. Therefore, there is something else
in the forefront. (Norman, 48)
• I keep busy. I like to try to keep busy. There’s a lot to do. It keeps your mind off your problems. (Liz, 51)
Exercising/Walking
• I try a little walking... I try to go to work, if I can, and do all the things... I like to keep active... I keep walking. (Don, 67)
• I try to exercise regularly to see if that will help. And it sometimes does. (Ian, 60)
• I find that throughout the day, if I’m really tired, instead of just going and lying down, I’ll often get down on the floor and do some
stretches and even just doing the stretches really helps getting over being incredibly tired. (Fran, 30)
Eating a Balanced Diet
• I’ve changed my diet. There’s certain things I’m doing that I didn’t do before... no alcohol, no caffeine... and those heavy carbs; cut back
on pasta and breads, stick to proteins and fruit and vegetables. A lighter diet... and I take Nonijuice and coral calcium. (Sally, 42)
• You can be tired if you don’t eat, if you don’t eat like you are supposed to... I think the best vitamins you get are from eating fresh
vegetables and the fruits. (Bob, 64)
Other (mentioned only once)
• Removed all deadlines
• Focusing on one goal a day
• Telling myself it’s okay to slow down
• Get a cleaning lady
• Organize a quiet spot for oneself
• Don’t fight it
• Break things into stages
• Don’t dwell on it
• Don’t look too far ahead—deal with today
• Tell others when I need to rest or sit or lie down
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times, they were not. These participants talked about believing they
were doing the best they could in the circumstances and trying to
find what worked best. All recognized fatigue was part of the
cancer experience.
Advice to health care professionals
Participants in this study, for the most part, did not talk with health
care professionals about the fatigue they were experiencing. Most did
not raise the topic with their care providers, nor did the health care
professionals raise it with them, as far as they could recall. For those
few who did raise the topic, the main message they received from the
health care professionals was that fatigue was normal and to be
expected with cancer treatment. They did not receive a strong
indication that interventions existed to help them cope with the side
effects.
I talked to the doctor, but I don’t think there is much that you can
do… I think the thing about being tired is that it is expected from the
chemo treatment. (5)
Not really [talked to the doctor or nurse about it]. It’s all part of
the course. It’s expected. We read up on it and it’s all part of the
chemo and radiation. It makes you tired. (24)
They seem unsympathetic… they don’t have much to offer in the
way of helpful advice. Because they say always it’s just the side effects
of chemotherapy. (5A)
I just think it’s a whole parcel of this thing… what’s to talk about?
(4A)
…the doctors, the nurses, the technicians didn’t tell me as much
about how tired I would be. I asked about side effects of radiation,
“Oh, you might feel a little tired.” But they kind of, I wouldn’t say
pooh-poohed it, that is probably unfair, but downplayed it. (2)
Participants indicated it would have been more helpful to receive
information about how to handle the fatigue. They thought this was a
role health care professionals ought to perform, particularly cancer
nurses.
It would be helpful if they could give you a more detailed outline
about what to do about it. Maybe a pamphlet on how to deal with your
fatigue. (6A)
This study was undertaken to identify strategies cancer patients
use on their own to cope with fatigue. We wanted to understand
what cancer patients do about the fatigue they experience in the
absence of a structured program for fatigue management. Most
qualitative work in the past has focused on patient experiences
regarding the impact of fatigue. However, these studies have not
linked the experiences to patient-initiated strategies for coping with
fatigue (Chan & Molassiotis, 2001; Harden et al., 2002;
Magnusson, Moller, Ekman, & Wallgren, 1999; Pearce &
Richardson, 1996). We anticipated this work would provide a
baseline description prior to mounting a fatigue management
program in our cancer centre.
A convenience sample was used in this work and, as a result,
relevant populations have been omitted (i.e., ovarian, lung, etc.). A
qualitative methodology was used to garner the patient perspective
without colouring their viewpoints by providing a predetermined
checklist of possible strategies from the investigator. However, in
future work, a checklist of strategies could be provided as a
stimulus to discussion with the person. Our approach may have led
patients to describe only those strategies they used with conscious
intent.
The participants in this study provided rich, detailed descriptions
about the impact of fatigue and how they tried to deal with it. The
physical impact was described most often, although many individuals
also described other dimensions of the phenomenon. Clearly, the
fatigue had a profound impact on daily living for some of these
Discussion
CONJ • 18/3/08
individuals. The nature of this impact has also been reported by other
investigators (Ferrel et al., 1996; Harden et al., 2002; Kurtz et al.,
1993; Walker et al., 1993).
The participants also described how their emotional reaction to
the impact of the fatigue was linked to whatever activity they could
no longer do and how important that activity was to them. If they
were unable to do something that was important to them, the
emotional reaction (i.e., anger, frustration, resignation, etc.) was
heightened. This emotional response pattern has been described in
the literature on appraisal of stressful life events (Lazarus &
Folkman, 1984). The emotional reaction emerges as a result of
perceiving that important values and commitments cannot be
fulfilled.
In terms of strategies they used to cope with the fatigue, these
participants described using strategies they had found helpful in the
past to cope with being tired. One is left with a sense they engaged
in a process of trial and error to find out what was helpful, rather
than having been instructed in appropriate and relevant (evidencebased) interventions. In particular, concerns could be raised about
how all individuals select rest and sleep activities as their primary
strategy to cope with fatigue with the emerging evidence regarding
the effectiveness of exercise and more proactive approaches
(Schwartz, 2000). Yet, at the same time, it is not surprising
individuals selected rest or sleep based on their past experience of
being tired or fatigued, as this is a common-sense approach
(Graydon, Bubela, Irvine, & Vincent, 1995).
However, the fascinating aspect of this study was the capacity
to observe, on a case-by-case basis, what individuals actually
tried to do (i.e., the strategies they had used) about the fatigue
within the context of living with it. The complexity emerged by
looking at the interplay among their perceptions about the fatigue
(e.g., it is normal, not much can be done about it, it is not
permanent), the impact on their lives (e.g., slowed them down,
stopped them doing an activity), their doing something
intentionally to cope with the fatigue (e.g., resting, adjusting their
pace of activity), and their finding out whether or not the strategy
they tried actually worked. If it did have some effect, the strategy
was used again. If it did not, the perspective of fatigue being
something one could actually do something about was questioned
by participants. In some cases, this stopped any more
experimenting with other strategies. The notion of just putting up
with the situation and waiting until it’s over emerged. However, if
the predominant issue for the person was not being able to do
something that was rather important, the effort was often renewed
to find another strategy to cope with the fatigue. A fundamental
issue for these participants, however, was that the menu of
strategies they knew about was rather short. Additionally, being
unfamiliar with the patterns of fatigue and not making use of
systematic assessment or monitoring schemes/tools, participants
may have judged a strategy to be ineffective – but, if it had been
used at a different point in the fatigue experience, it may have
been helpful. For example, what would be an effective strategy
during the three or four days following a chemotherapy dose
might not be an effective strategy at the point a week or so
following the dose when a person is apt to be more mobile and
engaged in activities.
Based on these observations, clearly tailoring interventions to
the nature and pattern of fatigue, as well as the individual is
essential. The same specific strategy may not have the same effect
for everyone. The practice challenge, then, is to determine which
strategies to use at what point for which individual patient. This
will necessitate that health care providers have a) a solid
knowledge base about fatigue/fatigue interventions, b) skills in
assessing/monitoring, communication and patient education, and c)
positive attitudes about working in partnership with patients to
cope with fatigue.
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Implications for practice
Cancer nurses need to be proactively asking patients who are
receiving treatment about their experiences with fatigue. They need
to listen acutely and identify accurately the nature of the fatigue
and whether the patients want help with it. Appropriate guides for
triage and assessment are available (National Comprehensive
Cancer Network website). Cancer nurses also need to be prepared
to assist patients in learning about appropriate strategies to combat
the impact of the fatigue (Skalla & Lacasse, 1992; Servaes et al.,
2002). They need to link the strategies or interventions to the
relevant dimension (i.e., cognitive, physical, motivational,
emotional) and pattern of fatigue. User-friendly patient education
resources (e.g., the brochure, Your Bank to Energy Savings: How
People with Cancer Can Handle Fatigue, 2004) are available for
use by nurses.
Above all, the communication needs to occur in such a way that
patients not only realize the fatigue is normally part of the cancer
treatment experience, but also realize there are potentially ways to
combat the impact. Cancer patients must know they do not have to
fight fatigue alone, or feel they “just have to live with it.”
In light of the proposed program for fatigue management, several
important aspects—related to knowledge, skill, and attitudes—have
emerged from these study results that should be incorporated and
emphasized.
• Cancer-related fatigue is real, is important to manage, and has a
pattern that can be described.
• Fatigue is a part of cancer and cancer treatment, but its impact can
be reduced (i.e., interventions are available).
• Cancer-related fatigue may impact a person’s life in different ways
at different times and the strategies to cope with it need to be
matched with that impact (i.e., physical, cognitive, etc.) for the
individual and changed as necessary.
• Systematic assessment and routine monitoring of fatigue are useful
to sort out what type of strategy is needed and what is working once
it is implemented (i.e., use of patient diaries).
• The notion of a team approach is helpful with good
communication exchange among members (e.g., patient and
nurse working together to monitor effectiveness of fatigue
strategy).
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