The fatigue experience: persons with HIV infection

Journal of Advanced Nursing, 1998, 28(2), 295–304 Nursing theory and concept development or analysis

The fatigue experience: persons withHIV infection

Linda Rose RN PhD

Assistant Professor, The Johns Hopkins University School of Nursing

Linda C. Pugh RNC PhD

Director, Center for Nursing Research, Hershey Medical Center, Pennsylvania StateUniversity, Hershey, Pennsylvania

Kate Lears RN CIC MPH

Senior Research Nurse, The Johns Hopkins University School of Nursing

and Dorothy L. Gordon RN DNSc FAAN

Associate Professor, The Johns Hopkins University School of Nursing, Baltimore, USA

Accepted for publication 24 June 1997

ROSE L., PUGH L.C., LEARS K. & GORDON D.L. (1998) Journal of Advanced Nursing28(2), 295–304The fatigue experience: persons with HIV infectionFatigue is a frequently reported symptom by persons with HIV infection and onethat has an adverse impact on activities of daily living and overall quality oflife. Although the concept of fatigue has been studied extensively and discussedin the literature, little is known about the experience of fatigue by persons withHIV infection. A hermeneutic phenomenological study was conducted toinvestigate the subjective experience of HIV-associated fatigue and to describethe management of fatigue in the context of daily life. In-depth interviews weredone with 10 adult patients of an outpatient HIV/AIDS clinic. Thematicanalysis identified three concerns that represented the meaning of fatigue forthe participants. The first concern was ‘Fatigue as a signal of AIDS’. A secondconcern was ‘The mind, the body, the social experience of fatigue’. The thirdconcern was ‘Choosing ways to live with fatigue and addiction’. The findingsprovide insights for nursing practice regarding the subjective meaning of fatiguefor patients with HIV and the need for nurses to explore this topic with patients.

Keywords: HIV, fatigue, qualitative, nursing, psychosocial, AIDS, addiction,coping, interventions, research

O’Dell et al. 1996). Normal activities of daily living forINTRODUCTION

persons who have the HIV virus may be significantly andnegatively affected by this problem. Although numerousThere is compelling evidence to suggest that fatigue is a

prevalent and disabling symptom for persons who are HIV studies have focused on the psychosocial impact of theHIV diagnosis and the individual’s coping response to theseropositive (Darko et al. 1992, Semple et al. 1993, Hoover

et al. 1993, Cleary et al. 1993, Hurley & Ungvarski 1994, diagnosis itself, few studies have investigated the impactof chronic symptoms such as fatigue and ways in whichpatients respond to them. Persons with HIV are frequentlyCorrespondence: Linda Rose, The Johns Hopkins University School of

Nursing, 1830 East Monument Street, Baltimore, Maryland 21205, USA. preoccupied with all aspects of their physical health, and

295© 1998 Blackwell Science Ltd

L. Rose et al.

fatigue is identified as one of those concerns (Chidwick enhance health care providers’ efforts to assist and supportpatients’ efforts to manage the fatigue and cope with it in& Borrill 1996). Even when the individual is otherwise

healthy, fatigue can be a disturbing and sometimes severe light of their diagnosis of HIV. Therefore, the purpose ofthis study was to describe from the participants’ perspec-symptom (Freidland et al. 1996).

The recognition of fatigue as a symptom of HIV is not tives the experience of fatigue and their management of itin the context of their daily lives.new. The earliest clinical descriptions of AIDS (Smith

et al. 1983) cited fatigue as a universally common com-plaint. Almost 10 years later, studies continued to docu-

THE STUDYment its importance (Darko et al. 1992). Persons with HIVidentify fatigue as the symptom causing the most distress

Participantsin their lives (O’Brien & Pheifer 1992, Nokes et al. 1994).It can be severe enough to interfere with daily activities A purposive sample of five female patients and five male

patients was included in the study. Participants wereand employment (Darko et al. 1992) and adversely affectquality of life (Zander et al. 1993). Indeed, the prevalence recruited from an HIV/AIDS clinic in an inner city medical

centre. Patients were included if: they were at the clinicand severity of the symptom of fatigue has led to the questfor effective interventions, such as hyperbaric oxygen ther- for their regular monthly appointment; they reported that

fatigue was a problem that developed since the last clinicapy to relieve it (Reillo 1993).Unexplained fatigue is a significant problem among visit; and they were able and willing to respond to ques-

tions about their fatigue. Participants ranged in age frompatients with both acute and chronic HIV-related symp-toms. There is conflicting evidence regarding the relation- 21 to 41 years old. Mean age was 32·8 years. Eight partici-

pants were between 30 and 40 years of age, one personship of fatigue and stage of illness, with some reportssuggesting that depression is the primary cause, while was 41 years old, and one person was 21 years old. Eight

participants were African-American and two wereothers have noted that fatigue is greater in patients withAIDS related complex (Atkinson et al. 1988). Caucasian. Educational level ranged from tenth grade to 2

years of college, five participants having a high school dip-Most investigators agree that fatigue is multidimensionaland spans a continuum from a feeling of tiredness to a loma, or 2 years of college. One participant had completed

eighth grade; three had completed tenth grade; and onestate of exhaustion. Most definitions of fatigue includeaspects of work decrement, physiological effects, and feel- had completed eleventh grade. Mean length of time since

known seroconversion was 3 years. Self-reported T-cellings of tiredness (Piper 1991). When people are fatigued,their energy and their use of it are unbalanced as a result count ranged from a low of 19 to a high of 470 at the time

of the interviews. Although the intensity of fatigue experi-of physiological, psychological or pathophysiologicalevents (Grandjean 1970, Bartley 1976, Hart & Freel 1982, enced by each patient varied, all identified that they had

changed their activity levels as a result of the symptom.Pugh & Milligan 1993). In addition to these manifestationsof fatigue, the experience of fatigue can be acute or chronic, All participants were receiving disability benefits as a

result of their diagnosis. They were unemployed andand can be characterized by weariness, body discomfort,and efforts to stop unpleasant feelings (Sugarman & Berg receiving no other income at the time of the study. Living

arrangements included living with a partner, adult chil-1984). Finally, although no studies were found thatinvestigated HIV patients’ descriptions of fatigue, cancer dren or other relatives. None lived alone. Seven patients

reported a history of substance abuse and were in recoverypatients have described the experience as tiredness, weak-ness, lack of energy, exhaustion, lethargy, depression, programmes for drug addiction. None identified current

drug use.inability to concentrate, malaise, asthenia, boredom,sleepiness, lack of motivation and decreased mental status(Winningham et al. 1994). It is not clear how closely the

Procedureperson with HIV shares these experiences.

Despite the fact that fatigue has been ranked as the most A phenomenological approach (Benner 1994) was used toinvestigate the lived experience of fatigue in persons withfrequently reported symptom in the HIV/AIDS population

that interferes with even the most basic activities of daily HIV. The overall goal of the approach was interpretive,following the philosophical tenets of hermeneutics ofliving, no studies were found that investigated the experi-

ences of HIV patients living with fatigue and what it meant Heidegger (1962) as described by Leonard (1994) and dis-cussed by Dreyfus (1991). Heidegger espoused the beliefto them. Fatigue has strong subjective components that

influence how it is managed. A qualitative approach that that human experience is an interpretive process that takesplace in a social-historical context and can be expressedexplores this experience would increase understanding of

the meaning of fatigue for the patient and its impact on as conscious awareness through language. The her-meneutic approach was seen as appropriate for thisother illness issues, such as emotional and physical well-

being and overall quality of life. This in turn would study because Heidegger’s philosophical concern for the

296 © 1998 Blackwell Science Ltd, Journal of Advanced Nursing, 28(2), 295–304

Nursing theory and concept development or analysis Fatigue and persons with HIV

ontological question ‘What does it mean to be?’ was central were made to elicit in the participants’ own words,descriptions of fatigue that might enhance the understand-to the inquiry of how persons with HIV made sense of a

pervasive aspect of that illness. Further, the study was ing of how fatigue differed from or was similar to otherfatigue experiences, or other aspects of HIV.guided by hermeneutic concept of ‘Being-in-the-World’

(Dreyfus 1991) which Heidegger described as an involve- The first author interviewed each participant immedi-ately following his or her appointment with the health carement with, or sense of dwelling in, our world, in a way

that Being, or ‘Dasein’ and the world we dwell in, cannot provider in the clinic. Interviews ranged from 30 minutesto 1 hour. Participants’ rights were protected in the follow-be separate.

A hermeneutic inquiry focused the inquiry on under- ing ways: they were assured that their responses would bekept confidential and no names would be used in thestanding of the ways in which persons who are HIV posi-

tive interpret their place in their world that had become report; they were told that they could terminate the inter-view at any time, and the care they received at the clinicirrevocably changed as a result of a radical diagnosis. The

presence of the fatigue related to that disease calls into would not be affected; and they were assured that individ-ual responses would not be shared with clinic staff. Thequestion what Heidegger calls ‘unready-to-hand’ mode of

engaging in the world: the familiar, the habitual ways of study was approved by the institutional review board ofthe facility.being involved in the world no longer work. The long-term

nature of the situation challenges the person to develop a All interviews were audiotaped and transcribed ver-batim for analysis. Data analysis was guided by Benner’s‘ready-to-hand’ mode of engaging in the world: a familiar,

habitual way of relating to the world and being situated (1994) discussion of interpretive phenomenology. The pro-cess consisted of multiple readings of the interview tran-in their world. The purpose of the inquiry was to gain an

understanding of how meaning of fatigue was developed scripts in order to reflect on the essence of the experiencesof the participants and to identify themes that representedin the context of being HIV positive. What are the past

behaviours and the future concerns that influence how the the meaning of those experiences. The initial stage ofanalysis consisted of reading each transcript in its entiretyparticipants understand what is happening when they

become fatigued? to gain a sense of the whole. The interviews were thenre-read several more times to begin the process of ident-Semi-structured in-depth interviews were conducted

with each participant in a private room in the HIV/AIDS ifying portions of the transcript that expressed a theme orconcern about an aspect of the fatigue experience. Codeclinic. The interview was organized around broad topical

areas that were reflective of the purpose of the study and words were attached to these segments using theEthnograph computer program (Seidel et al. 1995). Thisthe hermeneutic assumptions on which they were based:

their personal meanings of fatigue, their subjective facilitated the process of reflecting on the shared experi-ences across interviews. Initial codes were descriptive,responses to fatigue, contextual descriptions of when

fatigue occurred and their interpretations, or ‘sense- using the actual words of the participants themselves, butbecame increasingly interpretive as the reflective processmaking’ of the overall experience of fatigue. For example,

participants were asked, ‘Can you describe what fatigue is continued across interviews.Trustworthiness of the interpretations was a primarylike for you?’ and ‘How does fatigue affect what you do

every day?’ as a way of drawing out their personal narra- concern. The writings of Lincoln and Guba (1985) as wellas Benner (1994) and Plager (1994) were used to addresstives, or stories. In addition, they were encouraged to elab-

orate on other illness issues that would provide a this concern. Lincoln and Guba discussed ways for theresearcher to build ‘trustworthiness’ of the data. Bennertemporal/historical context of understanding and enhance

communication of ‘taken-for-granted’ meanings of fatigue. (1994) further emphasized that interpretation is rigorous,involving ‘questioning, comparing, and imaginativelyThe interview was structured as a dialogue, with ques-

tions, comments and observations designed to elicit the dwelling’ in the texts. Despite the hermeneutic stances thatthe other’s meaning can never be completely understood,participants’ perspectives on the meanings of fatigue in a

way that they may not have previously reflected upon and the interpreter can never completely abandon his orher own background experiences, an effort was made to(Benner 1994).

According to Heidegger, the researcher must necessarily be ‘true to the text’ (Benner 1994) in the following way.Initial coding was done by the first author. Initial interpret-become involved in ‘engaged reasoning’ in which the

researcher interprets the meaning from his or her own ations were presented to a team of colleagues who dis-cussed the analysis and read all the transcribed interviews.stance of pre-understandings and suppositions. Care was

taken to avoid shared meaning of ‘fatigue’ and to seek par- The team consisted of an expert in phenomenologicalresearch, an expert in fatigue research, and an expertticipants’ understandings of concepts such as ‘tired’, ‘no

energy’ and ‘lazy’. Participants were asked about their in clinical management of patients with HIV. Each col-league brought a unique perspective to the process andresponses to fatigue in terms of its effect on daily life and

efforts they made to manage the fatigue. Finally, efforts moved the analysis forwards beyond any one person’s

297© 1998 Blackwell Science Ltd, Journal of Advanced Nursing, 28(2), 295–304

L. Rose et al.

preconceptions. The process continued until all had views as a group: these participants had a need to talkabout the HIV status as much as the feeling of fatiguearrived at consensus regarding the results of the analysis.

Extensive notes were kept during the analysis process. associated with it. One could not be considered in iso-lation from the other. The second concern, ‘The mind, theThese notes consisted of researchers’ responses to the data,

preliminary ideas of what the data might represent, and body, the social experience of fatigue’, was communicatedthrough descriptions of the intense physical, emotionaldocumentation of discussions of the data among the

researchers. These notes were used to enhance depend- and interpersonal awareness of fatigue. The third concern,‘Choosing ways to live with fatigue and addiction’,ability of the findings (Lincoln & Guba 1985) by helping

the researchers to avoid bias, by illuminating misunder- reflected the importance of the context of the everyday life,especially past and future responses to drug addictingstandings in the analysis process (Benner 1994), and by

documenting the linkages of interpretations to the text. behaviors. The interpretations of these concerns emergedfrom participants’ responses to questions such as, ‘what isFinally, although returning to the participants for vali-

dation is recommended (Benner 1994) it was not possible it like for you when you are tired?’ and ‘how do you handlethings when you are tired?’ that were focused on the sense-because of constraints in the setting. Transferability of the

findings (Lincoln & Guba 1985) was addressed when the making processes of the participants. The concepts about‘Fatigue as a signal of AIDS’ will be discussed first becauseresearcher made efforts to raise questions and concerns

from earlier interviews into subsequent ones. Confirmation it was important to the development and understandingof the two later concerns.that the participants’ lived experiences had been under-

stood involved a process of ‘open-listening’ and an empha-sis on the larger context of the story such as family

Fatigue as a signal of AIDSconcerns, job history, feelings about coming to the clinic,and so on (Benner 1994). The first author’s extensive clini- Interpreting the experience of fatigue as an indicator of the

stage of the HIV illness and progression toward full-blowncal experience as a psychiatric nurse provided the neces-sary skills of communication and an ability to become AIDS was echoed by many participants. One woman

stated:engaged in the interview and use ‘persistent observation’and avoidance of premature closure of the interviews.

Sometimes when I have thought about it or really get into it, IConfirmability of the analysis was enhanced by the use of

start getting the fatigue. I’ll say, ‘Oh goodness I’m getting readya computer program that facilitated the development of an

to get to that bad stage where I am going to be hospitalized andaudit trail of the analysis process (Lincoln & Guba 1985).

can’t walk. That will go into my head and I’ll get depressed’.

Fatigue was seen as a critical factor in the fight againstRESULTS

the disabling effects of AIDS. One participant describedher notion of the fight, ‘You’re not going to beat me’, refer-The hermeneutic analysis resulted in the identification of

three patterns of concern related to the participants’ lived ring to the necessity to avoid fatigue because it contributesto illness severity and advancement of disease. Even whenexperience of fatigue, what it meant to them, and how they

responded to being fatigued. Concerns are ‘the way the fatigue was attributed to other causes, based on assess-ments of providers, patients expressed doubts. One partici-person is oriented meaningfully to the situation’ that deter-

mine what the person pays attention to, in essence what pant acknowledged: ‘I really want to believe it’s themedicine I’m taking. I could be wrong, but that’s what Imatters (Benner 1994, p. 105). In the process of uncovering

these concerns, attention was paid to how the persons want to believe’. Participants identified decisions regard-ing activity levels, and efforts to maintain a positive atti-were situated, or how they came to be where they were.

Second, the analysis sought to identify commonality of tude and not give in to the fatigue, suggesting that manyperceived that giving in to fatigue was threatening. Oneembodiment or the emotional and bodily responses of the

participants to the fatigue experience. Third, the explo- participant explained:ration attended to temporality, or the way the participants

It’s a danger sign. A lot of my friends, the ones that went on, that’sview their past and their future. Each of these areas pro-

how it started with them. They started going back into the hospitalvided a direction in seeking to understand the meaning of

and just becoming house bound and bedridden with fatigue. Theyfatigue to the persons in this study.

stopped certain things. They may have only been getting fatiguedThe three concerns emerged from the multiple readings

a couple of months and just threw up their hands and stayed inof the transcripts that focused on the original research

the house. I don’t want to get like that so I keep on pushing.questions as well as concerns that emerged by virtue ofthe emphasis placed on topics across interviews by the The variable nature of fatigue meant that participants

continuously evaluated its significance, and used compari-participants. The first concern, ‘Considering fatigue as asignal of impending AIDS’, emerged from reflective and sons with others who were more fatigued or had given in

to the fatigue in order to determine their own overall healthintense response of the researcher to reading the inter-



status. One participant explained that she was ‘living with you can’t move. You want to get up, but it isn’t in you to get up.

You’re not sick, you don’t feel sick. You just feel like a bada body that won’t behave’, pointing to her sense of vulner-ability and lack of control. Another described doubts that hangover.

emerged about meaning of the fatigue because of messagesAlthough fatigue was commonly experienced as ‘slug-from others: ‘I think I make myself tired because I think I

gishness’ and these participants echoed that feeling, theyshould be. I feel fatigued because I think I should be’. Thealso perceived unique dimensions that they labeled asnotion of taking on the expected demeanor of an AIDS‘something removed from my body’ or a sensation ofpatient, incorporating what was noticed in other AIDS‘floating’ or being ‘lightheaded’. One participant describedpatients in the clinic, was an element of the experience ofit as ‘fatigue on the inside coming outward’. The intensityfatigue that was an integral part of living with HIV. Theyof the experience was illustrated in one man’s descrip-considered the fatigue apparent in other HIV patients (fortions: ‘It’s like a burnout ... all out tired ...I can feel it inexample, in the clinic waiting room) as well as their per-my body’.sonal experiences with friends who they perceived did not

handle their fatigue well and gave in to it:Mind tired: feeling stuck in a ‘black hole’Emotional awareness of fatigue was evident in partici-A friend of mine was diagnosed the same time I was. And he took

a different route with his. He wasn’t doing what he used to. He pants’ descriptions of feeling tearful, isolative, and lackingin motivation, leading one participant to ask: ‘Is it [thesaid ‘I just don’t have the ‘ummph’ anymore’. And it definitely

affected him. fatigue] just me or is it the virus?’ They saw this mood asrelated to, but distinct from the overall fatigue experience

The goal then became keeping the ‘ummph’ and not letting that varied in intensity. Moreover, the presence ofthe fatigue have an effect on going on with life. depressed mood meant that they were less capable of

fighting the fatigue. HIV-associated fatigue was describedas a sensation of weakness, often affecting the legs andThe body, the mind, the social experience of fatigueability to walk, whereas depression was seen as a mental

Making sense of the fatigue as a signal of AIDS meant attitude, a feeling of ‘wanting to cry’ and of being stuck indealing with unique physical sensations, emotional an emotional ‘black hole’. One patient described what thisresponses of fear and depression, and changes in social felt like:relationships. Participants considered these physical,emotional and social contextual themes as fatigue came to It’s like being stuck in a dark, cold, clammy room where you can’t

get out. You can’t go nowhere, you’re not really locked in a room,represent the more encompassing experience of HIV. Theparticipants’ understandings of sensations of fatigue were you just can’t get enough motivation to get out of it. It’s just there.

reflected in the words they used to describe those sen-Being fatigued contributed to a depressed mood if thesations. There was an intensity in their descriptions that

person felt that there was no reasonable explanation. Onecommunicated a clear imperative to pay attention to them.participant who described fatigue as ‘just plain old tired’,explained her emotional response this way:Body tired

Being fatigued meant being aware of bodily sensations that Why is my body feeling like this? It’s just like, I just want to sithad to be attended to: ‘my legs feel light’ and ‘its a whole there and don’t do anything until I get up enough energy, youbody tired’. Comparisons were made between the physical know, get pumped up. But when I get depressed, it’s like, I’msensations of this fatigue and other physical discomforts, going to cry. I’m upset. I don’t want anybody worrying me. I don’tsuch as alcohol intoxication or other conditions, such as want anybody saying anything to me because it’s like they’repregnancy. Fatigue of HIV was seen as ‘different’ or trying to dig into my feeling or something. And I don’t want tounique. Because fatigue was evaluated as a signal of AIDS, bother until that feeling passes.the current physical experiences of fatigue were seen as

This concern was echoed by another participant whodifferent from fatigue sensations in the past because theydescribed the impact of fatigue on his mental state: ‘I justsignaled that something serious was going on in a way thatfeel drained. That’s a good way to describe it. And notwas bothersome. A participant explained:only physically but I seem to lose motivation also because

The most bothersome thing is the body. The body tired. That is I am always concentrating on when I’m going to get mywhat I have been going through lately, the body tired. That is next nap’.when you feel like you are going to go in to convulsions and just

like everything in your body is shutting down. Fearing a dangerous situationEmotional awareness of the fatigue was also evident inSimilarly, the intensity of the fatigue was felt:participants’ responses of fear. Because fatigue was evalu-ated as a signal of impending AIDS, severe fatigue evokedIt means to me — being out of it, like being drunk to a degree that


L. Rose et al.

fear: ‘I can feel so tired that I’m afraid to sleep. I feel like responses. The concern here in reflecting on the text wasto identify the ways in which the participants’ understand-something is wrong’. Not knowing how to eliminate or

control the fatigue was another source of fear. Others ident- ings of their place in the world was viewed and re-viewedin light of the impact of the fatigue on everyday practicesified the magnitude of fatigue and fears about lack of con-

trol: ‘I am so tired that I feel if I lay down, I won’t be able and activities. Also of concern was the way in which cul-tural and historical understandings of being, or ‘clearings’to get up’. Fear accompanied the fatigue because as one

participant interpreted it, ‘the immune system is down and (Heidegger 1962) might illuminate the responses of partici-pants to the fatigue. A pattern emerged that reflected theirit’s not able to fight things as it once did, and it kind of

works with things that are the weakest ... the virus attacks consideration of the temporal nature of the fatigue, thesense of trying to achieve control over the fatigue by push-what is weakest’. As a result, severe fatigue, either experi-

enced or anticipated, left patients feeling vulnerable and ing themselves to fight it, and the simultaneous fightagainst drug addiction that was a part of their world thatscared in a way that many described as ‘a dangerous situ-

ation’ because it seemed that the body was ‘shutting had to be confronted. These themes reflected a changingsense of self, personal abilities, and a reflection on thedown’. The fear was intense for participants who had to

deal with the fatigue being visible to others, for example: meaning of drug behaviour and coping.Participants engaged in a variety of strategies to deal

I’d be like, I just got up, it feels like I don’t have no rest. And thenwith the fatigue. Strategies were adjusted to reflect the sud-

people look at me and say, Are you tired? I’d be like, Do I lookdenness of fatigue episodes, the awareness of chronic

tired to you? And they say yes. I’d say, Something isn’t right. Andfatigue, and the need to accept some limitations and

it scares me if somebody else can notice that I look tired.the far reaching implications of drug abuse and itscontributions to fatigue and general health.The participants acknowledged that their concern with

a declining energy level and the need to avoid extremefatigue was related to this notion of danger and the fear Push self to fight fatigue

There were day-to-day practical concerns in the face ofabout being overcome by the fatigue. They had comethrough a process of acknowledging and accepting the fatigue that were a major focus of the fatigue experience,

including concerns about scheduling activities, events andneed for change to avoid the danger: ‘If I sleep all day,that’s fine too. I allow myself to do that now. It used to be, appointments, and meeting responsibilities such as house-

work or preparing meals. Participants made efforts tobefore I was diagnosed I wouldn’t allow myself to lie inbed all day’. manage their fatigue by strictly scheduling their days in

ways that preserved their strength. They tried to ‘push off ’the fatigue by engaging in volunteer activities, or otherwiseSocial tired: a change in relating to others

Fatigue had a social impact that was most apparent in the getting involved in activities outside the home. Onewoman who talked about going back to school explainedtendency of some participants to isolate themselves, with-

drawing from others because they were fatigued and could her belief in the importance of structured scheduledactivity: ‘Knowing that you have something to do eachnot ‘keep up’ or because they saw the need to conserve

energy. It also meant that their ability to seek support from day, every day — I’m thinking that will help with theenergy level’. For some this meant significant lifestylepeople was severely hampered. As one participant said,

‘Sometimes I’ll just stay in and I don’t really do anything’. changes, signalling a new perspective on staying healthy.They also gained confidence in learning to monitor andAnother described the decisions about balancing needs

and abilities: ‘I only come out if I have an appointment’. adjust to impending fatigue: ‘I know I can gauge myselfduring the day and know that I’m going to make it to bed-The quality of interactions with others was affected by the

fatigue: ‘Sometimes even with the talking I get tired’. time’. Some participants lacked the resources to structuredaily routines and they engaged in a different sort of fightInteractions with family members changed as a result of

their efforts to identify and minimize fatigue for the par- with fatigue, a process of ‘pulling back’. As one personsaid, ‘I’ve been kind of reluctant to be going out and catch-ticipants. Situations then arose in which family members

were watching for signs of fatigue and tried to take on a ing the bus and then I just feel tired’. The pulling backresulted in increasing isolation and extensive periods ofprotective role. This sometimes resulted in frustration on

both sides. time spent alone or napping.Participants’ efforts to resist acute episodes of fatigue

that ‘hit suddenly’ were important to their understandingsChoosing ways to live with fatigue and addiction

of the meaning of fatigue. Although dealing with chronicfatigue involved trying to ignore it, they acknowledged itsAs a way of comprehending how the ‘situatedness’ (Benner

& Wrubel 1989) as well as the temporality of the partici- message that the virus ‘is not going anywhere’ and that tosome extent, fatigue is inevitable but the rate can bepants was changed by the fatigue, they were asked what

they did when they felt fatigued and why they chose these controlled:



I just do all these things when I can’t control it. I just got to lay who one is was most apparent here, as participants talkedabout the efforts to accept the physical limitations whiledown. Sometimes I’ll just say ‘well, if I could just give you some-

thing, this feeling would go away’. Sometimes it passes. trying to develop a comfort level with self, or developingthe ‘right perspective’.Sometimes it don’t.

They were always aware of their diagnosis and the many Deal with addiction: find the strength to fightlayers of meaning they had for the feeling of being tired. Seven participants identified having been a part of a cul-Some participants who blamed HIV medications for caus- ture of substance abuse and/or alcohol dependence in aing fatigue decided to make adjustments in the time of way that helped define their sense of self and their placetaking the medications. in the world. The battle against the addiction was fought

Slowing oneself down and guarding one’s energy level on two fronts: the physical and the emotional. Both battleswere seen as efforts to slow down the progress of the dis- had to be fought at the same time and the connectionease. One participant explained that he learned to deal to fatigue and the fight against AIDS was clear: ‘Thewith it by setting a pace that accommodated the fatigue virus wipes out most people, that’s what keeps them outwhile trying to always ‘push myself a little further’, an there using’. The relationship between fatigue and sub-important element of the day-to-day integration of fatigue stance abuse was complex as coping strategies involvedinto his life: ‘I don’t allow myself to get dog-tired like I concurrent battles against fatigue and drug abuseused to, I don’t allow myself to do what I used to’. The behaviors.ever-present nature of acute fatigue was acknowledged as Dealing with the diagnosis by turning to drugs or alcoholwas the sense of urgency that acute episodes evoked: ‘My led to fatigue and weakened resolve and a seemingly end-body goes through this whole fatigue thing whereas I’m less cycle of drinking/drug use, feeling fatigued, then usingbarely crawling and I’ve just got to get to bed. I’ve just got drugs to fight that feeling: ‘I know what it is to drink andto get somewhere and just sit and relax’. wake up and feel sluggish and tired, taking a day and a

half just to get yourself together. Until you take that nextThink positive, not negative drink and it’s like magic: you’re back’. There was a strongPart of the process of accepting the need to pace oneself imperative to stay on top of the fatigue and ‘not let it takeand activities was reframing the overall experience to look hold’ but try to maintain control over it. There was also aat it in a positive way. It was critically important to adjust sense that one had to stay focused on staying away fromthe emotional responses and accommodate physical needs drug-related environments and relationships that contrib-associated with the disease. Their desire to perform even uted to that drug using behaviour. Giving in to the fatigue,basic activities, such as walking, was altered to allow for and the feeling of ‘poor me’ referred to earlier, was seenperiods of inactivity, usually napping, which in some as dangerous because it weakened the resolve to stay awaycases lasted for 3 or 4 hours a day. Participants were aware from drugs. These efforts contributed to feelings of fatigueof the critical need to balance or offset bouts of depression for some patients, while others described feeling that theand negative thinking with a positive attitude: fight against fatigue intensified the urge for alcohol/drug

use: ‘You start getting these thoughts in your head that itIt was just that I needed to slow down my activities and reshufflewould be nice to get a cold beer because I know it wouldthat deck up there. A lot of stuff that goes on with this thing whenmake that tired feeling go away’. Fatigue might also loosenyou are by yourself is a ‘poor me’ type attitude.the resolve to stay away from drugs/alcohol: ‘The next

Another participant concurred that a positive outlook was thing you know you are reaching for a bottle at the nearestimportant in handling fatigue and HIV in general: liquor store or nearest vial of cocaine to give you that

psychological boost’.You can’t get down on yourself. Because once you get down onClearly there was a need to give up some aspect of theiryourself, you’ll trigger the disease and it’s going to grow faster

former lifestyle in a way that was perceived as a significantinside of you. Try to stay away from negative thoughts, thinkchange in the view of what was important. In most cases,positive.this involved major efforts to stay away from drugs and

Another participant explained: attending support groups on a regular basis. The specterof using drugs or alcohol to deal with psychological fatigue

To sit around and mope about it is a sign of defeat so I find thingswas always there, close by and available. Drug treatment

to do. Then I go and try to take a little nap. You’ve got to keepgave emotional strength to deal with physical fatigue and

your mind on the right perspective. You’re not dead. You’re stillfatigue associated with fear and depressed mood because

capable of moving around so you push yourself a little further.of the diagnosis.

You don’t overdo it. You just carry on a pace but you know you’reGroup meetings became a central focus and a way of

tired and would like to go lay down somewhere.dealing not only with the drugs and alcohol, but also withthe physical and psychological components of the fatigueThe work involved in adjusting one’s sense of self and


L. Rose et al.

associated with the fight to abstain from drugs and manage ing degrees of fatigue and had varying degrees of successin managing it without decreasing meaningful activity andthe HIV with a more healthy lifestyle. One man who had

been dealing successfully with addiction this way, satisfying interactions in supportive relationships withothers.explained:

This study provides important insights into the fatigueIt puts you among people, gives you energy. Some days I’ll start experience that can be used to examine treatment goalsoff feeling sluggish but then you forget that and you come out a and their relevance to the HIV-infected person. An import-little perked up, spiritually recovered. It has it’s benefits a lot ant implication of the findings of this study is that healthmore to go to the program than to sit around and feel lazy and professionals should be sensitive to the broader interpret-sluggish and tired. ations that patients make of fatigue, particularly as those

interpretations relate to how their illness is progressing.It was an experience of overcoming a huge obstacle thatDecisions that patients make about managing fatigue mayprovided them with the psychological energy and sense ofalso be far-reaching, as they attempt first to preserve whatpersonal growth that counterbalanced the fatigue andthey see as a finite resource for fighting the disease, andhelped them to move forward in their lives:second to stave off what they see as a dangerous situation.

One person came to the NA meeting and he looked like he was Participants were able to distinguish symptoms ofjust worn out. He apologized to the group but he was just that fatigue from symptoms of depressed mood. The relation-tired he just wanted to lay down, but his spirit wouldn’t allow ship of depression and fatigue is documented but the com-him to do that. He had to carry a message to all recovering addicts plexity of teasing out the unique aspects of each clinicalout there. You can get the virus through your crazy practices but entity is also apparent. Although clinical depression mayyou can also function with it if you choose to. not be evident, a low mood or sense of ‘feeling down’ may

be apparent and may respond to supportive counseling asIn one exemplar case, the patient acknowledged the sim-well as efforts to increase meaningful activity on a dailyultaneous reframing, dealing with addiction and payingbasis. The participants in this study knew when fatigueattention to physical cues that was required and that madewas a result of low mood and when physical fatigue wasup his experience of fatigue: He described his attitudea result of decreasing energy levels. They described inabout ‘party lifestyle’ that he believed contributed to hisevocative detail their experience of feeling down on them-present condition and that he could no longer continue:selves and how they saw some experiences of fatigue as

It’s not necessarily true that I don’t have the energy, but when I separate from that low mood. Perkins and colleaguesget tired I don’t feel like expending anymore. I mean I could reach (1995) in a recent study of the relationship of depressiondeep down and find the energy and keep going, but I don’t. and fatigue found that increased levels of fatigue wereNothing is that important anymore ... I have to have a day’s notice associated with increase in depression and dysphoricbefore I do anything, because that’s the way I pace myself. mood, but not associated with HIV disease progression.

Whether the experience of fatigue and its resultant impactThere were repercussions from these decisions.on daily life contributed to the depression or was a symp-Changing habits of drug use meant that their previoustom of the depression itself is not clear. The conflictingsocial networks could no longer be called upon for sup-findings warrant further investigation since the patient’sport. For one participant, this meant reducing or eliminat-interpretation of their situation has ramifications in howing all contact with immediate family members who hadthey choose to manage their symptoms.been involved in the drug use with her:

A distinguishing characteristic of the experiences ofthese participants was the fear that accompanied theI had to get away from my family, because I was into drugs with

my sisters. Me and my two sisters we used to shoot together, we fatigue. It made the perceived need to balance activity andinactivity and the factors associated with that more urgent.drank together, we done everything together. So, I had to get away

from them. It’s not that I don’t love them, but it’s just that I wanted Some participants spoke of experiencing fatigue because‘they ought to’, that it was expected to occur as a part ofto change my way of living.

the disease and they should heed the warning and slowdown. Others adopted a stance of fighting it off because it

DISCUSSIONwas dangerous not do. Nurses can counsel patients onimplications of fatigue in the personal situation, provideThe experience of fatigue for persons who are HIV seropos-

itive is a significant component of the overall experience an opportunity for patients to share their interpretationsof what should or should not be done, and correct anyof HIV. Its presence made the participants reflect on their

health status, it became a barometer of the illness in their misconceptions that patients may have. The fear thatpatients may experience as fatigue varies in intensity andlives and it caused them to consider ways of changing

lifestyles, support systems, and priorities as a ways of stav- impact needs to be addressed.The link between drug addiction and fatigue was alsoing off debilitating fatigue. Participants experienced vary-



important to these participants. Those persons who were changes, especially in situations where support is limited?These and other questions become important in light ofinvolved in recovery programmes for addiction also ident-

ified ways these programmes helped them with fatigue, in the meaning that patients with HIV/AIDS may have of thefatigue and it’s place in the overall experience ofparticular the psychological fatigue associated with inac-

tivity or ‘sluggishness’ or ‘laziness’. Recommendations for HIV/AIDS. Finally, nursing interventions for patients withHIV can be enhanced by consideration of the multi-facetedthis group of seropositive persons (those dealing with drug

and alcohol addictions) can include information about the nature of the fatigue experience for patients with HIV, andthe provision of support for the decisions they makebenefits of such programmes in handling the psychological

fatigue associated with coping with HIV status. As well, regarding the managing of the illness.Nursing goals for HIV-infected fatigued persons haveefforts to encourage patients’ involvement in these and

other activities will provide the daily structure that these been identified and include the need to recognize the pres-ence of fatigue, identify and use an individualizedparticipants saw as important to their success in staving

off fatigue from a ‘poor mental attitude’. For the partici- activity–rest programme, accept assistance from othersand adopt a more balanced life style (Hart et al. 1990).pants in this study, the notion of managing fatigue, and

indeed the entire spectrum of living with HIV, meant that Participants in this study were in treatment at a localHIV/AIDS clinic. They were aware of the importance of athe substance abuse behaviors had to be confronted.

Efforts to deal with fatigue involved a concerted effort healthy lifestyle, such as a healthy diet and adequate rest,in combating HIV. Nurses can monitor and reinforce theseto stay away from drugs, to avoid worsening the fatigue

through this lifestyle, while at the same time acknowledg- efforts as a way to deal with the disabling effects of fatigueas well. Participants talked about the message theying the temptation to medicate the fatigue with alcohol or

drugs. As well, their descriptions of coping strategies, received from professionals about ‘lowering their stresslevel’ as a way of managing fatigue. Nurses can helpincluding a careful balancing of needs and developing a

positive attitude, were indicative of the careful consider- patients to define specifically what that means to them,given their personal resources, limitations and co-existingation and concerted efforts they were making to handle

the disease in a responsible way. The efforts of these battles against drug addiction. For some patients, recoveryprogrammes and adequate housing are critical to their suc-patients should be applauded and supported. Some per-

sons must leave behind significant relationships thus cess. For others, development of a new social network iswhat is needed. For all patients who make adjustments inshrinking their support networks. We cannot assume there

is adequate support to replace them. In addition, chronic their place in the world in a way that they see as a mentalbattle as much as a physical one, acknowledgment of thefatigue and lack of resources can lead to increasing iso-

lation that in turn increases inactivity and sense of fatigue. magnitude of their efforts is essential.Other studies have identified the importance of a sense

of personal control to the infected person’s ability to copewith the illness of HIV (McCain & Zeller 1994). For the Referencesparticipants in this study, their experience of fatigue meant

Atkinson L.H., Grant I., Kennedy K.T., Richman D.D. et al. (1988)that they were faced with challenges: pushing themselvesPrevalence of psychiatric disorders among men infected within spite of fatigue; deciding when to adapt to the fatigue;human immunodeficiency syndrome. In AIDS: Etiology,and paying attention to and accepting the consequencesDiagnosis, Treatment, Prevention 2nd edn (Devita V.T.R.,

of fatigue. Taking control was affected by and affected theirHellman S. & Rosenberg S.A. eds), J.B. Lippincott, New York.

ability to control the rhythm and content of their daily Bartley S.H. (1976) What do we call fatigue? In Psychologicallives. McCain and Zeller (1994) asserted that future Aspects and Physiological Correlates of Work and Fatigueresearch must identify psychosocial variables that affect (Simonson E. & Weiser P.C. eds), Charles C. Thomas,the course of the illness. The findings of this study provide Springfield, Illinois, pp. 409–414.

Benner P. (1994) The tradition and skill of interpretive phenomen-preliminary data that suggest that personal interpretationsology in studying health, illness, and caring practices. Inof symptoms such as fatigue and ways they influenceInterpretive Phenomenology (Benner P. ed.) Sage, Thousandresponses of fear and depression are important avenuesOaks, California, p. 127.for further study.

Benner P. & Wrubel J. (1989) The Primacy of Caring. Addison-The impact of fatigue on a person with HIV/AIDS canWesley, Menlo Park, California.be pervasive in a way that does not necessarily reflect

Chidwick A. & Borrill J. (1996) Dealing with a life-threateningseverity of the fatigue. Although the findings of the study

diagnosis: the experience of people with the human immunode-can not be generalized to all persons with HIV/AIDS, they ficiency virus. AIDS Care 8, 271–284.do raise questions for further research. How does the Cleary P.D., Fowler F.J. Jr., Weissman J. et al. (1993) Health-relatedfatigue experience influence depression? What are the quality of life in persons with acquired immune deficiency syn-ramifications of fear associated with fatigue on the person’s drome. Medical Care 31, 569–580.

Darko D., McCutchan J., Kripke D., Gillin J. & Golshan S. (1992)ability to cope? How are decisions made about lifestyle


L. Rose et al.

Fatigue, sleep disturbance, disability, and indices of progression in HIV infection prior to AIDS: a pilot study. Disability &Rehabilitation 18, 249–254.of HIV infection. American Journal of Psychiatry 149, 514–520.

Dreyfus H.L. (1991) Being-in-the-World: A Commentary on Perkins D., Leserman J., Stern R. et al. (1995) Somatic symptomsand HIV infection: relationship to depressive symptoms andHeidegger’s ‘Being and Time’ Division I. MIT Press, Cambridge.

Friedland J., Renwick R. & McColl M. (1996) Coping and social indicators of HIV disease. American Journal of Psychiatry 152,1776–1781.support as determinants of quality of life in HIV/AIDS. AIDS

Care 8, 15–31. Piper B. (1991) Alterations in energy: the sensation of fatigue. InCancer Nursing: A Comprehensive Textbook (Baird S.,Grandjean E.P. (1970) Fatigue. American Industrial Hygiene

Association Journal 31, 401–411. McCorkle R. & Grant M. eds), W.B. Saunders Company,Philadelphia, pp. 894–908.Hart L.K. & Freel M.I. (1982) Fatigue. In Concept Clarification in

Nursing (Norris C. ed.), Aspen, Rockville, pp. 251–262. Plager K.A. (1994) Hermeneutic phenomenology: a methodologyfor family health and health promotion. In InterpretiveHart L.K., Freel M.I. & Milde F.K. (1990) Fatigue. Nursing Clinics

of North America 25(4), 967–976. Phenomenology (Benner P. ed.), Sage, Thousand Oaks,California, pp. 65–83.Heidegger M. (1962) Being and Time (trans. by J. Macquarrie &

E. Robinson), Harper & Row, New York (original work pub- Pugh L.C. & Milligan R.C.A. (1993) A framework for the study ofchildbearing fatigue. Advances in Nursing Science 15, 460–470.lished 1927).

Hoover D.R., Saah A.J., Bacellar H. et al. (1993) Signs and symp- Reillo M. (1993) Hyperbaric oxygen therapy for the treatment ofdebilitating fatigue associated with HIV/AIDS. Journal of thetoms of ‘asymptomatic’ HIV-1 infection in homosexual men.

Multicenter AIDS Cohort Study. Journal of Acquired Immune Association of Nurses in AIDS Care 4(3), 33–38.Seidel J., Friese J. & Leonard D.C. (1995) The Ethnograph: A User’sDeficiency Syndromes 6, 66–71.

Hurley P.M. & Ungvarski P.J. (1994) Home health care needs of Guide. Qualis Research Associates, Littleton, Colorado.Semple S.J., Patterson T.L., Temoshok L.R. et al. (1993)adults living with HIV/AIDS in New York City. Journal of the

Association of Nurses in AIDS Care 5, 33–40. Identification of psychobiological stressors among HIV-positivewomen. HIV Neurobehavioral Research Center Group. WomenLeonard V.W. (1994) A Heideggerian phenomenological perspec-

tive on the concept of person. In Interpretive Phenomenology and Health 20, 15–36.Smith C.I., Motum P.I. & Walls R.S. (1983) Prodromal acquired(Benner P. ed.), Sage, Thousand Oaks, California, pp. 43–63.

Lincoln Y. & Guba E. (1985) Naturalistic Inquiry. Sage, Newbury immune deficiency syndrome in Australian homosexual men.Medical Journal of Australia 1, 561–563.Park, California.

McCain N.L. & Zeller J. (1994) Research priorities for psychosocial Sugarman J.R. & Berg A.O. (1984) Evaluation of fatigue in a familypractice. The Journal of Family Practice 19, 643–647.aspects of nursing care in HIV disease. Journal of the

Association of Nurses in AIDS Care 5, 21–26. Winningham M.L., Nail L.M., Burke M.B., Bvophy L., Cimprich B.& Jones L.S. (1994) Fatigue and the cancer experience: the stateNokes K.M., Wheeler K. & Kendrew T. (1994) Development of an

HIV assessment tool. IMAGE: Journal of Nursing Scholarships of the knowledge. Oncology Nursing Forum 21(1), 23–26.Zander K., Jager H., Palitzsch M., Poppinger J., von Steinbuchel N.26(2), 133–138.

O’Brien M.E. & Pheifer W.G. (1992) Physical and psychosocial & Bullinger M. (1993) Health related quality of life (HRQL) inHIV disease: influence of symptom load, functioning, mood andnursing care for patients with HIV infection. Nursing Clinics of

North America 28(2), 303–316. coping styles. International Conference on AIDS 9, 79 (abstract# ws-b36–4).O’Dell M.W., Meighen M. & Riggs R.V. (1996) Correlates of fatigue


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The fatigue experience: persons with HIV infection