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Self-Care for Fatigue in Patients With HIV
Inge B. Corless, PhD, RN, FAAN, Eli Haugen Bunch, DNSc, RN,
Jeanne K. Kemppainen, PhD, RN, William L. Holzemer, PhD, RN, FAAN,
Kathleen M. Nokes, PhD, RN, FAAN, Lucille Sanzero Eller, PhD, RN,
Carmen J. Portillo, PhD, RN, FAAN, Ellen Butensky, MS, RN,
Patrice K. Nicholas, DNSc, MPH, RN, Catherine A. Bain, MS, RN, Sheila Davis, MS, RN,
Kenn M. Kirksey, PhD, RN, and Fang-Yu Chou, MS, RN
Key Points . . .
Purpose/Objectives: To identify when fatigue is reported
as a problem by people who are HIV positive, what the
perception of fatigue is, and which self-care behaviors are
Patients with HIV, AIDS, cancer, or other chronic diseases
used and with what efficacy.
commonly report experiencing fatigue.
Design: Multisite descriptive study.
Setting: University-based AIDS clinics, community-based
Healthcare professionals often overlook fatigue.
organizations, and homecare agencies located in cities
Fatigue is treated with a variety of strategies.
across the United States, in Norway, and through a univer-
sity Web site.
Participants' reported sources of care were self-designed and
Sample: Convenience sample of 422 self-identified
obtained from their informal support networks, not their
people who are HIV positive.
healthcare providers.
Main Research Variables: Symptom description, symp-
tom relief, symptom help, and self-care strategies.
Findings: The sixth most reported symptom in this study, fa-
tigue, was treated with a variety of self-designed strategies.
In only three instances was consultation with a healthcare
provider (i.e., physician) or an injection (medication not de-
Inge B. Corless, PhD, RN, FAAN, is a professor at MGH Institute of
fined) mentioned. The most frequently used interventions
Health Professions in Boston, MA; Eli Haugen Bunch, DNSc, RN,
were supplements, vitamins, and nutrition followed by sleep
is an associate professor at the University of Oslo in Norway; Jeanne
and rest; exercise; adjusting activities, approaches, and
K. Kemppainen, PhD, RN, is a clinical nurse specialist at the VA
thoughts; distraction; and complementary and alternative
Palo Alto Health Care System in CA; William L. Holzemer, PhD,
therapies. In addition to self-designed strategies, the media
RN, FAAN, is a professor at the University of California, San Fran-
and friends and family were sources of information.
cisco (UCSF); Kathleen M. Nokes, PhD, RN, FAAN, is a professor
Conclusions: Fatigue was reported less frequently in this
at Hunter College, the City University of New York (CUNY), in New
study than in other HIV-, AIDS-, or cancer-related studies.
York; Lucille Sanzero Eller, PhD, RN, is an assistant professor at
This may be an artifact of the study design. The use of in-
Rutgers, the State University of New Jersey, in Newark; Carmen J.
formal networks for assistance, let alone the prevalence of
Portillo, PhD, RN, FAAN, is an associate professor, and Ellen
unrelieved fatigue, indicates the need for more attention
Butensky, MS, RN, is a doctoral candidate, both at UCSF; Patrice
to this problem among people with AIDS.
K. Nicholas, DNSc, MPH, RN, is an associate professor at MGH In-
Implications for Nursing: Careful assessment of the pat-
stitute of Health Professions; Catherine A. Bain, MS, RN, is a clini-
tern of fatigue and its onset, duration, intervention, and
cal assistant professor at UCSF; Sheila Davis, MS, RN, is an adult
resolution is required if the varied types of fatigue are to be
nurse practitioner, infectious diseases, at Massachusetts General
identified and treated successfully.
Hospital in Boston; Kenn M. Kirksey, PhD, RN, is an associate pro-
fessor at California State University in Fresno; and Fang-Yu Chou,
MS, RN, is a doctoral candidate in the School of Nursing at UCSF.
This project was supported, in part, by an award from the Presiden-
ith the advent of more effective therapies, HIV and
tial New Research Teaching Initiatives Program at Hunter College
AIDS, which once were imminently fatal, now are
of CUNY. (Submitted March 2001. Accepted for publication Decem-
chronic. This change has increased the attention
ber 10, 2001.)
given to the management of symptoms, particularly those
symptoms of greatest concern to patients living with HIV or
Digital Object Identifier: 10.1188/02.ONF.E60-E69
ONF ­ VOL 29, NO 5, 2002
AIDS and the healthcare community. Fatigue is a symptom
were effective in decreasing fatigue with minimal side effects
common to individuals with or without chronic diseases. The
and improving quality of life. Fuhrer and Wessely (1995)
critical question is whether rest resolves fatigue. In the latter
came to a similar conclusion with a sample of 3,784 partici-
instance, fatigue is considered transitory. Fatigue occurring in
pants examined for fatigue as a presenting complaint in a pri-
those with HIV or AIDS that was not alleviated by rest and the
mary care study of patients in a general practice. Fatigue also
self-care strategies used were the focus of this study. Specifi-
has been associated with pain (Burrows, Dibble, & Miaskow-
cally, individual perceptions of fatigue, self-care strategies,
ski, 1998). Finally, Blesch et al. (1991) cited Aistars (1987) who
and the efficacy of those strategies in resolving fatigue as it
viewed fatigue as the endpoint of the stress related to physi-
occurs in those with HIV or AIDS were studied.
ologic, psychological, and situational factors involved in dis-
ease and treatment.
Before a further explication of the causes and correlates of
fatigue in those infected with HIV, fatigue in patients with can-
Fatigue has been defined in various ways. Piper, Lindsey,
cer has been observed to be complex, multicausal, and multi-
and Dodd's (1987) definition of fatigue in patients with can-
dimensional (Curt, 2000). Fatigue also is the most frequently
cer addressed their lived experiences. They stated "fatigue,
reported symptom by patients with cancer (Magnusson, Moller,
from a nursing perspective, is defined as a subjective feeling
Ekman, & Wallgren, 1999; Nail, Jones, Greene, Schipper, &
of tiredness that is influenced by circadian rhythm. It can vary
Jensen, 1991; Piper et al., 1998; Sarna, 1998; Simon & Zittoun,
in unpleasantness, duration, and intensity" (p. 19). In contrast
1999; Winningham et al., 1994; Wyatt & Friedman, 1998; Yar-
to this subjective definition, Lee, Hicks, and Nino-Murcia
bro, 1996), occurring in 40%­84% of patients (Carlson, 2001)
(1991) defined fatigue from a physiologic perspective as "the
and 100% of patients with breast cancer during radiation
end result of excessive energy consumption, depleted hor-
therapy (Mock et al., 1997). Fatigue was the second most fre-
mones, or diminished ability of muscle cells to contract" (p.
quently occurring symptom for patients undergoing chemo-
291). Breitbart, McDonald, Rosenfeld, Monkman, and Passik
therapy (Foltz, Gaines, & Gullatte, 1996).
(1998), quoting from the work of Hays, Turner, and Coates
Irvine, Vincent, Graydon, and Bubela (1998) tracked fa-
(1992), noted the positivist or "simple definition (e.g., `persis-
tigue in patients receiving radiation therapy for breast cancer
tent or frequent fatigue [feeling tired all the time] for at least
and found that fatigue increased during treatment and receded
two weeks')" (p. 165). This definition operationalizes fatigue
to pretreatment levels three months post-treatment. Bower et
as tiredness that persists for a given length of time--in this
al. (2000) found that only a minority of women with early-
case, greater than two weeks.
stage breast cancer had persistent fatigue after the conclusion
Breitbart et al. (1998) contrasted this simple definition with
of therapy. This finding may be related to disease stage and
definitions that contain multiple and interactive components,
the types of therapy experienced. In contrast to these results,
including cognitive, behavioral, and emotional aspects. Rose,
Harpham (1999) discussed the profound tiredness that many
Pugh, Lears, and Gordon (1998), who referenced Piper et al.
patients feel even after therapy has been completed. In another
(1987) when they observed "most definitions of fatigue in-
study, patients reported that fatigue was a continuing problem
clude aspects of work decrement, physiological effects, and
(Ferrell, Grant, Funk, Otis-Green, & Garcia, 1998). Walker,
feelings of tiredness" (p. 296), highlighted the continuum
Nail, Larsen, Magill, and Schwartz (1996) emphasized that fa-
from tiredness to exhaustion. Cleary et al. (1993) found fa-
tigue was the most frequently reported continuing problem.
tigue a strong predictor of the limitations in daily activities
In addition to the experience of fatigue at the conclusion of
among patients with AIDS. Specifically, Darko, McCutchan,
therapy, Berger (1998), in a study of women undergoing che-
Kripke, Gillin, and Golshan (1992) found that fatigue affected
motherapy, found a roller-coaster pattern of fatigue intensity.
employment and activities of homosexual men who were HIV
Richardson, Ream, and Wilson-Barnett (1998) identified a
seropositive. Capaldini (1998a) described physical fatigue but
similar cyclic pattern. Woo, Dibble, Piper, Keating, and Weiss
also noted other types, such as psychological, depression, hy-
(1998) noted that women receiving combination therapy had
pogonadism, and morning fatigue. These types represent fa-
the greatest fatigue. However, these patients also were at the
tigue secondary to other phenomena, as well as the time of
most advanced disease state. Sarna (1998) found fatigue the
day when fatigue occurs.
most severely rated symptom over a six-month period by par-
By mentioning depression, Capaldini (1998b) drew atten-
ticipants with advanced lung cancer, and it was the most per-
tion to a major debate in the literature--the association be-
sistent symptom over a year in patients with breast cancer
tween depression and fatigue. Perkins et al. (1995) and
(Hoskins, 1997). These studies identify multiple patterns of
Walker, McGowan, Jantos, and Anson (1997) saw a close re-
fatigue in patients with cancer depending on disease status,
lationship between depression and fatigue. Perkins et al., in a
cell type, and course of therapy.
six-month follow-up of 82 homosexual men infected with
The HIV and AIDS literature is underdeveloped compared
HIV and 64 uninfected homosexual men, noted that "com-
to that of cancer-related fatigue. This symptom is prominent
plaints of fatigue and insomnia in otherwise asymptomatic
for those with HIV or AIDS. In studies of people infected with
HIV-infected patients were likely to be related to psychologi-
HIV, the incidence of fatigue ranged from 55%­98%. Fatigue
cal disturbances and possibly major depression" (p. 1776).
was present in 43 (98%) women (van Servellen, Sarna, &
Breitbart et al. (1998) and Ferrando et al. (1998) disagreed and
Jablonski, 1998), 428 (85%) ambulatory patients (Vogl et al.,
observed that although associated with depression, fatigue
1999), 91 (77%) hospitalized patients, and 75 (64%) ambula-
makes an independent contribution to morbidity in HIV dis-
tory patients who were HIV positive (Fontaine, Larue, &
ease. In a recent double-blind, placebo-controlled study,
Lassauniere, 1999). Breitbart et al. (1998) found that 363
Breitbart, Rosenfeld, Kaim, and Funesti-Esch (2001) found
(85%) ambulatory patients infected with HIV described a
that psychostimulants (i.e., methylphenidate and pemoline)
"lack of energy" during the preceding week and 235 (55%)
CORLESS ­ VOL 29, NO 5, 2002
participants felt tired "all the time." In a comparison of patient
The study questions were "When fatigue is identified as a
and nurse ratings of HIV-related signs and symptoms, fatigue
problem, what is the individual's perception of fatigue? What
was mentioned by 62% of the 207 patients (Reilly, Holzemer,
self-care behaviors are used, and with what efficacy? What are
Henry, Slaughter, & Portillo, 1997).
the sources of information for the self-care behaviors utilized
Various causes of HIV-related fatigue have been noted,
by people experiencing fatigue?"
including anemia, impaired liver or thyroid function, malnu-
Setting and Sample
trition, wasting, AIDS dementia, HIV myopathy, immunosup-
Data were collected for this multisite, descriptive study in
pression, hormonal deficiencies, depression, lack of exercise,
person or by mail at various agencies and institutions that pro-
pain, infection or fever, nutritional deficiencies, excessive
vide services to those infected with HIV or over the Internet at
inactivity or rest, and growth hormone dysregulation (Adin-
www.hivsymptoms.ucsf.edu. The Web site was developed by
olfi, 2001a, 2001b; Barroso, 1999; Breitbart et al., 1998,
the UCSF International HIV/AIDS Nursing Research Network.
2001; Darko, Mitler, & Miller, 1998; Groopman, 1998; Lee,
A convenience sample of people who were HIV positive (N =
Portillo, & Miramontes, 1999, 2001; "More Awareness
422) was recruited from university-based AIDS clinics, private
Needed in Treatment of Fatigue," 1996). McDonnell, Gielen,
practices, public and for-profit hospitals, residential and daycare
O'Campo, and Burke (1999) found viral load and energy
facilities, community-based organizations, and homecare agen-
were inversely related in 273 women who were HIV positive.
cies located in Boston, MA (n = 52), New York, NY (n = 49),
Lee et al. (1999) also found that lower CD4 counts in women
Oslo, Norway (n = 20), Paterson, NJ (n = 52), the San Francisco
who were HIV positive were related to higher morning and
Bay Area (n = 87), and through the UCSF Web site (n = 162).
evening fatigue. For women in general, fatigue is a major is-
The Web site accounted for 38% of the study responses, fol-
sue (Stewart, Abbey, Meana, & Boydell, 1998).
lowed by the greater San Francisco Bay Area (21%), Paterson
Factors unrelated to fatigue include hemoglobin, hemat-
(12%), Boston (12%), New York (12%), and Oslo (5%).
ocrit, albumin, total protein, altered muscle metabolism, and
Participants, self-identified as being HIV positive, volun-
treatable anemia (Barroso, 1999; Cosby, Holzemer, Henry, &
teered to participate in the study. Informed consent was implied
Portillo, 2000; Miller et al., 1991; O'Dell, Meighen, & Riggs,
by participation in the study (Boston) or given by written con-
1996). O'Dell et al. noted that their data indicated a stronger
sent (New York, Paterson, San Francisco Bay Area, and Nor-
association of fatigue with psychosocial factors rather than
way sites). Web participants were informed about the study
with physiologic factors. Messias, Yeager, Dibble, and Dodd
with the following introduction: "You are invited to take a few
(1997) urged nurses "to listen carefully to patient's own de-
minutes to complete this survey designed to help us gather in-
scription of being tired" (p. 47).
formation on how people living with HIV or AIDS manage the
symptoms related to their illness and its treatments." The Web
Conceptual Framework
site clearly identified the study as research and stated that indi-
viduals were free to participate as they wished, but that partici-
The current study used the symptom management model
pation would help the researchers understand the nature of the
developed by the University of California, San Francisco
self-care strategies used by the respondents. To maintain ano-
(UCSF) School of Nursing Symptom Management Faculty
nymity, names were not requested.
Group ("A Model of Symptom Management," 1994). This
model emphasizes the subjective aspect of the symptom ex-
perience. Symptoms are considered to reflect changes in
biopsychosocial function, sensation, or cognition. For effec-
The demographic questionnaire included questions about
tive symptom management to occur, attention must be given
age, gender, race, education, current living arrangements, ad-
to the three interrelated aspects of the model, namely, symp-
equacy of income, perceived adequacy of insurance coverage,
CD4 lymphocyte count, AIDS diagnosis, history of injection
tom experience, symptom management, and symptom out-
comes. In the current study, this focus translates to the
drug use, and antiretroviral medication use. Adequacy of in-
individual's perception of fatigue, self-care strategies, and the
come and insurance coverage were categorized as "enough,"
"barely possible," and "totally inadequate."
efficacy of those strategies in resolving fatigue as reflected in
the symptom management outcome.
The participants were asked to name and describe a physi-
Piper et al. (1989) proposed a model of fatigue in patients
cal or psychological symptom or problem they frequently ex-
with cancer. Characteristics distinguishing acute and chronic
perienced. Once participants named a symptom, they were
fatigue include purpose or function, population at risk, etiol-
asked to describe the symptom and answer the following
ogy, perception, onset, duration, pattern, relief dimension, and
questions. What do you do to help relieve this symptom?
impact on activities. Two of the characteristics of this model,
Where did you learn this strategy? How does it help? Partici-
onset and resolution, which are components of the relief di-
pants then had the option of naming another symptom and
mension, will be used as part of the framework and analysis
repeating the process for the next symptom identified or end-
of this study. Descriptors of fatigue and self-care strategies
ing the interview. A panel of expert HIV and AIDS clinicians
will be evaluated as to the acute or chronic nature of both
and researchers established face validity. Instruments were
onset and resolution.
pretested with people with HIV or AIDS; no modifications
were made to the instruments.
Data Analysis
Data were analyzed using both quantitative and descriptive
The data for this analysis were obtained in a survey of the
techniques. Statistical Packages for the Social Sciences­Per-
sonal Computer Version 10.0 was used to organize and analyze
symptom management strategies used by people with HIV.
ONF ­ VOL 29, NO 5, 2002
the demographic and descriptive data about symptoms. Data
and makes it difficult for me to concentrate and participate in
were aggregated by the symptom mentioned. For example,
long meetings or long lectures." Other respondents described
in addition to fatigue, such related concepts as tiredness, loss
having fatigue as "[being] tired, even when just waking up,"
of energy, exhaustion, weakness, and chronic fatigue also
"[being] extremely tired, weak, achy, sleepy," "extreme fa-
were mentioned as symptoms. Participants who discussed
tigue that is not affected by the amount of sleep," and "I have
fatigue and the related concepts constituted the sample for
just no energy; I'm weak and tired. It's hard to do anything or
this study.
to get motivated."
Self-Care Behaviors
The respondents to this survey utilized various self-care be-
haviors to address fatigue. Ninety-four different behaviors
were mentioned, and those responses were listed and grouped
A comparison of all participants of this symptom manage-
(see Table 2). The most frequently reported self-care strate-
ment study and those who reported fatigue is given in Table
gies included supplements, vitamins, and nutrition (n = 29,
1. The demographic characteristics for the fatigue sample and
31%); sleep or rest (n = 21, 23%); adjustments to activities,
the total sample were similar except in regard to ethnicity,
approaches, or thoughts (n = 16, 17%); and exercise (n = 14,
education, and living arrangements. The fatigue sample was
less racially diverse, more educated, and less likely to live
alone than the totality of the participants of the symptom
Sources of Information
management study.
Participants reported 41 sources of information for these self-
Fatigue Descriptors
care behaviors, including self-designed interventions (n = 15,
37%), media reports (n = 13, 32%), friends and family (n = 7,
Fatigue was the sixth most frequently reported symptom
17%), physicians (n = 3, 7%), and other (n = 3, 7%).
(10%, n = 31) in the symptom management study, with anxi-
ety or fear (25%), diarrhea (23%), neuropathy (16%), nausea
Efficacy of Self-Care Behaviors
and vomiting (14%), and depression (11%) reported more
frequently. Other symptoms categorized by the participants as
Strategies utilized by this sample were helpful to varying
fatigue included exhaustion, tiredness, weakness, and loss of
degrees from "not at all" to "it helps a lot." Seventy one per-
cent of the strategies were considered helpful, 12% "not at
Fatigue was attributed to discontinuation of antiretroviral
all," and the remainder helped "sometimes," "somewhat,"
drugs and "not having enough blood." As one participant said,
"very little," and "not much."
In this study, a distinction was not made a priori as to
[I'm] often able to be up for four to six hours in a day.
whether the fatigue was acute or chronic. Using the Piper et
This has been getting worse since my doctor took me off
al. (1989) model of fatigue, the descriptors of fatigue given by
antiretrovirals in February of 1999 because my liver en-
this study's participants were differentiated as to whether
zyme levels were dangerously high.
onset and resolution were described as acute or chronic. Piper
Fatigue was associated with depression and a difficulty in
et al. (1989) described acute onset as rapid, whereas chronic
concentration. "Fatigue leads to depression and sadness or is
onset is gradual and cumulative. Acute resolution is quick,
it the other way around, I wonder sometimes?" As another
alleviated by rest, diet, exercise, or stress management tech-
participant said, "[The fatigue] comes and goes during the day
niques. Chronic resolution requires a combination of methods
and does not resolve readily. Using these distinguishing char-
acteristics, Table 3 was developed with four different patterns
Table 1. Demographic Profile: Fatigue Sample and Total
of onset and resolution: acute-acute, acute-chronic, chronic-
acute, and chronic-chronic.
If patterns of onset were observed alone, 15 participants were
Total Sample
Fatigue Sample
acute and 14 were chronic. Similarly, if only patterns of reso-
(n = 3l)
(N = 422)
lution were examined, 17 participants were acute and 12 were
Age (years)
chronic. Ten respondents were divided almost equally into
Range = 15­79
mixed patterns of onset and resolution of acute-chronic (n = 4)
or chronic-acute (n = 6). Further investigation of the use of self-
care strategies by the participants may elucidate treatments that
Greater than high school
were more effective for one pattern than another.
Table 4 lists the interventions by onset and resolution pat-
Inadequate income
tern. The major distinction in the categories depicted in Table
Does not live alone
4 is that although all groups used sleep and rest, the acute-
No history of injecting
chronic group mentioned sleep more frequently (as a percent-
drug use
age of total mentions). Indeed, 44% (n = 4) of the acute-
Mean CD4
chronic group, 33% (n = 5) of the chronic-chronic group, 26%
(SD = 312.45)
(SD = 267.48)
(n = 10) of the acute-acute group, and 6% (n = 2) of the
Range = 0­1,488
chronic-acute group described sleep. Nevertheless, more par-
Inadequate insurance
ticipants in the acute-acute group described sleep and rest than
Taking antiretroviral
in any other group. Fifty-three percent (n = 17) of the chronic-
acute group, 26% (n = 10) of the acute-acute group, 22% (n =
CORLESS ­ VOL 29, NO 5, 2002
Table 2. Activities Used to Relieve Fatigue
Number of Times
Type of Activity
Supplements, vitamins, and nutrition
Vitamins, minerals, herbs, ginko biloba
Sleep or rest
Sleep, rest, nap, take it easy
A d j u s t m e n t s to activities, approaches, or
Adjusting social agenda, planning, not getting stressed out,
believing activities will help
Exercising, walking, light weight-lifting
Movies, gardening, housework, watching television, reading
Complementary and alternative therapies
Acupuncture, prayer, meditation
Amitriptyline, shots
Healthcare provider support
Seeing/talking with a physician
2) of the acute-chronic group, and no participants in the
most frequently reported symptoms. Given this literature, fa-
chronic-chronic group mentioned supplements, vitamins, and
tigue may have been underreported in this study. The design
nutrition. Those with a chronic resolution described sleep
of the study may have affected this outcome. Participants
more frequently, whereas those with an acute resolution to
were invited to name and describe a physical or psychologi-
their fatigue described supplements, vitamins, and nutrition
cal symptom that frequently occurs instead of all of their
more frequently. Although participants in all groups described
symptoms, the most troublesome, or the one of longest stand-
sleep, the chronic-chronic group did not mention supple-
ing. Thus, the fact that fatigue was less prominent in this study
ments, vitamins, and nutrition.
may be an artifact of study design. Collection of data via the
These same strategies were used with very different effects.
Internet is fraught with a new problem, the potential for mul-
For the acute-acute group these strategies increased energy,
tiple entries by the same individual. An inspection of the de-
"helped a lot," resulted in "rejuvenation," and left participants
mographic data led the researchers to believe this was not a
"rested enough to handle things," "more relaxed and less in-
problem in this study.
tense," and "less tired." In the chronic-chronic group these
Descriptors of fatigue in this study overlap with those noted
same strategies helped "somewhat," "sometimes," "some,"
by Messias et al. (1997) for patients undergoing cancer che-
"often not," "just a little," "very little," "it doesn't seem to,"
motherapy, with the exception of feeling cold. The latter was
"no," or "not at all." The difference between the two mixed
indicated by patients with cancer and may reflect a low hema-
groups was, by definition, if the intervention helped, the reso-
tocrit level. In a study of the psychometric properties of a fa-
lution was characterized as acute. Those in the chronic-acute
tigue assessment tool study, Schwartz (1998b) organized fa-
group stated "it seems to help," "[it] takes my mind off it," "it
tigue descriptors under physical, emotional, cognitive, and
helped me," "somewhat," "yes," and "at least I have some life
temporal subscales. Descriptors listed under the emotional
now." In contrast, those in the acute-chronic group were not
subscale include loss of ability or being overcome, stuck, list-
helped by the intervention as indicated by "doesn't help," "not
less, frustrated, helpless, and vulnerable. The descriptors listed
much," "it doesn't help," and "rest and time seem to be the
by the participants in the current study were physical, cogni-
only solution."
tive, and temporal descriptors, but not emotional ones. Simi-
larly, the descriptors do not contain the sensory subscale in the
four subscales of the Piper Fatigue Scale (i.e., behavioral/se-
verity, affective meaning, cognitive/mood, and sensory)
In this study of self-care strategies used for symptoms by
(Piper et al., 1998). These differences may be the result of
people infected with HIV, fatigue was the sixth most fre-
sampling variations or may reflect a difference between pa-
quently cited symptom. This differs from other reports cited
tients with cancer and those with HIV or AIDS.
earlier, as well as Barroso (1999), who found a 20%­60%
The interventions described in the literature are medications
prevalence of fatigue in the literature, and Bormann, Shively,
directed at physiologic causes ("Fighting Fatigue Requires
Smith, and Gifford (2001), who viewed fatigue as among the
Battle on Many Fronts," 1996; "More Awareness Needed in
Treatment of Fatigue," 1996). Potential treatments mentioned
in the literature, but not specifically by these respondents, in-
Table 3. Frequency of Acute and Chronic Onset and
clude dextroamphetamine (Capaldini, 1998a; Wagner &
Resolution of Fatigue
Rabkin, 2000), peptide T (Doob & MacFadden, 1992), hyper-
baric oxygen therapy (Reillo, 1993; Reillo & Myers, 1992;
Steinhart, Montoya, & Kaiser, 1994), and testosterone ("Tes-
tosterone Therapy Can Improve Mood, Energy," 1999; Wag-
Relief Dimension:
ner, Rabkin, & Rabkin, 1998). Whether the participant who
mentioned getting "shots" was referring to B12 or testosterone,
which is available in patches and gels, is unclear.
The participants of this study used self-care interventions
that were nonspecific and germane to chronic disease in gen-
eral. Skalla and Lacasse (1992) developed a patient-education
Missing data = 2
ONF ­ VOL 29, NO 5, 2002
Table 4. Intervention by Onset and Resolution Pattern
Self-care interventions for patients with multiple sclerosis
or myasthenia gravis are similar to those used by the current
Self-Care Strategy
study's participants and include energy conservation, stress
reduction, and an increase in rest and sleep (Grohar-Murray,
Supplements, vitamins, and
Becker, Reilly, & Ricci, 1998; Stuifbergen & Rogers, 1997).
(n = 38)
A study by van Mens-Verhulst, van Dijkum, Lam, and van
Sleep and rest
Kuijk (1999) indicated that for individuals with a moderately
Adjust activities
severe chronic disease, focusing on symptoms, maintaining
activity, and accommodating the illness were the most effec-
Complementary and alter-
tive approaches. Irvine et al. (1998) found the most frequent
native therapies
self-care strategies used by women undergoing radiation
therapy for breast cancer were sitting and sleeping. Foltz et al.
Sleep and rest
(1996) also found that inpatients undergoing chemotherapy
(n = 9)
Supplements, vitamins, and
used sleep and rest most frequently in self-care for fatigue.
As in the current study where healthcare providers were
listed very infrequently as sources of information (7%), only
Adjust activities
14% of patients with cancer-related fatigue had any interven-
tion prescribed or recommended by their providers (Stone,
Richards, Ream, et al., 2000).
Supplements, vitamins, and
(n = 32)
Implications for Nursing
Complementary and alter-
Fatigue continues to be a problem for people living with
native therapies
HIV or AIDS and contributes to both morbidity and disabil-
Sleep and rest
ity (Darko et al., 1992). Strategies utilized by this sample were
Healthcare provider sup-
helpful to varying degrees from "not at all" to "it helps a lot."
Careful assessment of the pattern of fatigue including its on-
set, duration, intervention, and resolution is required if the
varying lineages of fatigue are to be identified successfully. A
Adjust activities
Sleep and rest
focus on the four dimensions of subjective fatigue--affective
(n = 15)
and meaning, behavioral and severity (including disruption of
Complementary and alter-
activities of daily living), cognitive and mood, and sensory
native therapies
(physical symptoms)--will add to the precision of the scien-
tific discourse.
Fatigue may be the consequence of a deficiency (e.g., ane-
Note. Because of rounding, not all percentages total 100.
mia), a biobehavioral factor (e.g., alteration in sleep activity
patterns), or some other cause. Development of successful in-
tool that suggests that patients with cancer sit or lie down of-
terventions requires a careful assessment of the cause.
ten and take naps. These suggestions were the same as those
Remediation of a deficiency or alteration of a biobehavioral
used as self-care by the participants of this study. Similarly,
pattern, although challenging, may constitute the simple case.
Fatigue resulting from the interaction of complex and poorly
84% of patients with cancer in a study by Ream and Richard-
understood mechanisms will be more difficult to resolve and
son (1999) employed resting and napping, taking things easy,
modifying activities, and walking and gardening as self-care
may receive inadequate attention from healthcare providers.
strategies. These are the same strategies used by the partici-
Providers may not be alarmed by what may be construed as
the lesser of a series of problems because of their own accep-
pants with HIV in the current study.
tance of fatigue as a part of their daily lives. Kaasa, Loge, Kno-
Schwartz (1998a) reported that 76% of the participants in
her study exercised to relieve cancer-related fatigue. Less fre-
bel, Jordhoy, and Brenne (1999) argued that although fatigue,
mental health, and pain are connected to psychosocial strain in
quently used were being with friends and family, eating,
the general population, fatigue is more related to a decline in
watching television, or reading. Ninety percent of the sample
reported using a combination of rest and exercise to reduce
physical health in patients with cancer. This study received ad-
ditional credence by the finding that despite the presence of
cancer-related fatigue. Mock et al. (1994) found a structured
fatigue in the general population, a significantly greater level
exercise program of walking combined with a support group
to convey benefits for those undergoing adjuvant chemo-
of fatigue in patients with cancer was identified (Stone,
Richards, A'Hern, & Hardy, 2000). Unfortunately, one study
therapy. Aerobic exercise also was beneficial for patients with
found that 45% of patients with cancer believe nothing can be
cancer (Dimeo, Rumberger, & Keul, 1998).
done to alleviate fatigue (Curt et al., 2000). Those living with
Self-care activities devised by Nail et al. (1991) addressed
both fatigue and nausea faced by patients undergoing chemo-
HIV or AIDS likely have similar feelings.
Kuuppelomaki and Lauri (1998) found that the suffering
therapy. Fatigue interventions included taking naps, going to
experienced by patients with cancer had physical, psychologi-
bed earlier than usual, sleeping later than usual, and keeping
cal, and social dimensions. Fatigue and weakness were the
busy to keep the mind off fatigue. These are the same as those
used by the participants who were HIV positive in the current
most common general complaints observed by these re-
searchers. Thus, to alleviate suffering, healthcare providers
CORLESS ­ VOL 29, NO 5, 2002
need to address fatigue and other troublesome symptoms.
The most significant implication of this study relates to the
The concept of a side-effects burden proposed by Longman,
importance of routine nursing assessment of fatigue for the
Braden, and Mishel (1997) is one that needs to be examined
relief of suffering. Future research should focus on the effec-
with regard to HIV and AIDS therapeutics. In fact, the side-
tiveness of the strategies identified in this study with a larger
effects burden may become more significant as the pill count
sample of research participants infected with HIV, as well as
and frequency of dosage per day declines. The side-effects
the measurement of biologic markers of fatigue as related to
burden may predict adherence to medications in that as the
self-care strategies. Specifically, helpful supplements, vita-
burden increases, adherence decreases. As healthcare provid-
mins, and nutrition need to be identified and evaluated.
ers become more effective in reducing that burden, adherence
Although the prevalence of fatigue was not as high in the
may be facilitated. With particular therapies, such as inter-
participants with HIV or AIDS in this study as in the literature,
leukin-2, fatigue may be increased substantially, which af-
the result may be an artifact of questionnaire design that did
fects quality of life (Grady, Anderson, & Chase, 1998). For-
not necessarily capture all of the symptoms experienced by
tunately, with the cessation of therapy, fatigue returned to
the participants. Similarly, unless nurses in practice investi-
baseline after one month.
gate all of the problems patients experience, fatigue is likely
The question of quality of life has been mentioned as one
to be both unreported and untreated. The importance of using
of the reasons patients decide to terminate therapies. Side ef-
an instrument to measure fatigue in the ongoing clinical as-
fects have a profound impact on quality of life. As Ferrell,
sessment of patients to identify and, hopefully, alleviate this
Grant, Dean, Funk, and Ly (1996) observed, "rather than be-
distressing symptom cannot be overemphasized.
ing an isolated physical symptom, fatigue is a force that has
an impact on all dimensions of quality of life" (p. 1539). Rec-
Author Contact: Inge B. Corless, PhD, RN, FAAN, can be reached
ognizing the profound impact of symptoms is crucial to com-
at icorless@partners.org, with copy to editor at rose_mary
prehensive nursing care.
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