AIDS CARE (1999), VOL. 11, NO. 2, pp. 201-219

'In an important way, I did die': uncertaintyand revival in persons living with HIV orAIDS

D. E. BRASHERS,^ J. L. NEIDIG,^L. W . CARDILLO,^L. K. DoBBS,̂ J. A. RUSSELL^ & S. M . HAAS^^University of Illinois at Urbana-Champaign, ^The Ohio State University & ^RutgersUniversity, USA

Abstraet This study reports the revival experiences of persons who once were reconciled to theirdeath from HIV/AIDS but who, as a result of dramatic treatment responses, now believe they maysurvive (popularly known as the Lazarus Syndrome). A purposive sample of men and women livingwith HIV infection or AIDS were interviewed in six focus groups. As part of a larger study ofuncertainty in HIV illness, participants described their uncertainty accompanying renewed health anda return to the joys and problems of continued life. While new discoveries about the disease andexciting antiretroviral therapies hold the promise of improved survival, ambiguity about the durabilityof treatment response and ultimate survival contribute to the level of uncertainty with which a patientmust cope. The experience of uncenainty in the narratives about revival involved renegotiation.Participants described physical renewal as an unexpected new stressor forcing them to renegotiate: (a)feelings of hope and future orientation, (b) social roles and identities, (c) interpersonal relations, and(d) the quality of their lives. Implications for prevention, practice, research and theory are presentedand suggestions for education and assistance are offered.

For those of us who've been diagnosed for a long time, we've been planning to dieand have quit our careers and given up our assets and now all of the sudden they'resaying 'you may live'. And so now how do I get back into work, still paying for mydrugs? So, there's a lot more uncertainty now for me, I think. Because I made mypeace a long time ago about the dying issue and now it's 'uh-oh' ... It's a good'uh-oh' but at the same time, when you're financially devastated because of thedisease, it's a very scary and uncertain 'uh-oh'. (Adam)

Introduction

With the recent availability of protease inhibitors and potent combination antiretroviraltherapies for Human Immunodeficiency Virus (HIV) infection or Acquired Immune Defi-ciency Syndrome (AIDS), a disease once considered uniformly fatal may become a chronic.

Address for correspondence: Dale Brashers, Department of Speech Communication, University of Illinois, 702 S.Wright Street, #244 Uncoln, Urbana, IL 61801-3631. Tel: 217 333 8913. E-mail: dbrasher@uiuc.cdu

0954-0121/99/020201-19 89.50 © Taylor & Francis Ltd

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or perhaps even curable, illness (Carpenter et al, 1997; Gallo, 1996). For persons throughoutthe HIV illness trajectory who currently are enjoying dramatically improved health, excitingand clearly welcomed physical changes are accompanied by confusion and uncertainty(Linden, 1996). Especially for persons who were diagnosed with AIDS before the introduc-tion of these highly effective drugs, the joy of dramatic health renewal is tempered by newconcerns about identity, career, fmances, and social relationships. This experience has beencharacterized as the 'Lazarus Syndrome' (BUng, 1997)'. Renewed health for many has beena return from the tomb of a swiftly approaching death from HIV infection to the joys andproblems of continued life (Gregonis, 1997; Sowell, 1997).

Although research has described the experiences of cancer survivors (e.g. Kennedy et al,1976; Lansky et al, 1986; see Muzzin et al, 1994, for a review) and 'long-term survivors' ofHIV infection (e.g. Barroso, 1996; 1997), to date there has been little or no researchspecifically describing the complex psychosocial phenomenon of 'revival' currently unfolding.We use the term revival to describe the experience of persons who have lived with the beliefthat they were dying from HIV infection, but who have come to believe that they can survivedue to improved HIV treatments. Thus, the specific aim of this paper is to describe theuncertainty experiences of HIV-infected individuals who had faced death, but now reportincreased optimism about survival because of advances in treatment and care. To accomplishthis aim, we first briefly review uncertainty in illness and available literature reportinguncertainty in HIV illness. Next, we describe a focus group study designed to elicit accountsof uncertainty experiences from HIV-infected individuals. Finally, we discuss study resultsthat indicate revival from HIV illness to be a source of uncertainty and a potential stressor forpersons living with this disease.

Uncertainty in illness

Research on uncertainty in illness has demonstrated its important role in the illness experi-ence (see Mast, 1995, or Mishel, 1997, for a review). An individual who has had little priorexperience with a health problem may lack schema or interpretative frames from which tointerpret and/or predict illness-related events (i.e. unfamiliar symptoms or the intended andunintended effects of treatments). In Uncertainty in Illness Theory, Mishel (1988; 1990)argues that individuals with chronic and acute illnesses often experience uncertainty due toambiguous symptom patterns, complex systems of treatment and care, insufficient infor-mation about diagnosis and unpredictable disease progression and prognosis. Babrow et al(1998) note that uncertainty in illness can result from complexity of illness, qualities andstructure of information, beliefs about prognostic probability and lay epistemology (e.g. aperson's orientation toward uncertainty).

Uncertainty in HIV illness

Weitz (1989) found that individuals with HIV experienced uncertainty due to the extensiveand unpredictable mental and physical damage associated with the disease, the novelty of thedisease and the rapidly changing information about the illness and its treatments. Morerecently, Brashers et al (1998) argue that uncertainty about HIV/AIDS can be explainedalong an illness trajectory model (also see Alonzo & Reynolds, 1995). Individuals experienceuncertainty prediagnosis (e.g. 'What is the likelihood that I am infected?') or at diagnosis (e.g.'How long have I been infected?'), as well as when the disease is latent (e.g. 'How willothers react?') or manifest (e.g. 'What do these symptoms mean?'). Studies of HIV-relateduncertainty have shown that uncertainty is: (a) negatively associated with quality of life

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(McCain & Cella, 1995) and psychological adjustment (Ramsey, 1990); (b) greater forsymptomatic than asymptomatic individuals (Ramsey, 1990); (c) lower for individualspractising relaxation techniques (McCain et al, 1996); (d) associated with changes in lifeperspective (Katz, 1996); and (e) linked with level of desired physician communication(Brashers et al, 1996).

With earlier detection and effective early intervention (Gallo, 1996; Siegel & Krauss,1991), prolonged survival may mean high levels of uncertainty for longer spans of time forHIV-infected persons. While new discoveries about the disease and exciting antiretroviraltherapies hold the promise of improved survival, ambiguity about the durability of treatmentresponse and ultimate survival contribute to the level of uncertainty with which a patientmust cope. Because stressors such as uncertainty can negatively impact immune functioning(Jemmott & Locke, 1984; Kiecolt-Glaser & Glaser, 1988), uncertainty management interven-tions are likely to be a vital part of a holistic approach to HIV and AIDS care. As apreliminary step toward that goal, this paper reports focus group interview data collectedfrom men and women living with an HIV infection or AIDS. These results are part of thefindings of a larger qualitative study of HIV-associated uncertainty. In the following sections,we describe data relevant to the phenomenon of revival and uncertainty in HIV-infectedindividuals.

Method

Overview

Data were collected from focus groups conducted to elicit collective perceptions of adultsdiagnosed with HIV or AIDS. According to Krueger (1994), focus groups are 'useful priorto, during, and after programs, events, and experiences' (p. 37). Focus groups can functionfor exploratory research (to generate hypotheses, to provide information on the knowledge,attitudes, and practices of the target group), for clinical research (to uncover hiddenmotivations underlying behaviours) and for phenomenological research (to provide an oppor-tunity to see the world through the eyes of the target group) (Stillman, 1992, p. 174). Themethod offers benefits through the communicative aspects of group dynamics (Stillman,1992). Kitzinger (1994) argues that the focus group method is particularly useful for datacollection in AIDS research because it 'is ideal for exploring social and communicationissues, and examining the cultural construction of experience. It taps into people's underlyingassumptions and theoretical frameworks and draws out how and why they think as they do'(p. 172).

Sample

Following approval by the Institutional Review Board for the Protection of Human Subjects,recruitment was conducted by one of the researchers at an Adult AIDS Clinical Trials Unit(ACTU) in a large midwestem university. Purposeful sampling (Sandelowski, 1995) wasused to recruit and select participants on the basis of their willingness to talk in a small group.Each participant received 840 for his or her participation. Because we hoped to includeindividuals from throughout the HIV spectrum, the initial sample of 24 was divided evenlyinto two groups of participants with self-reported CD4 counts > 200/mm^ (n= 12) and twogroups of participants with CD4 counts < 200/mm^ (n = 12). Although redundant narrativesoccurred after three group interviews, recruitment continued until six focus groups (n = 33)were convened to increase the participation of women and African-Americans.

204 D. E. BRASHERS ETAL.

We should note that the data presented here are from individuals with CD4 counts lessthan 200 (n= 13) or whose CD4 counts had fallen below 200 but had risen above 200(n = 8). In general, those individuals were the ones who produced the revival narratives,perhaps because they were the most likely to have accepted death and experienced revival dueto improved treatments. The resultant sample of 21 was 85% male, 67% white (29%Afiican-American, 5% Hispanic) and 81% gay (14% heterosexual, 5% bisexual), whichclosely approximates local AIDS prevalence data. The mean age of the participants was 38years (range 26 to 59 years, SD = 9.6). Most participants had completed four years of collegeor more (62%) and most were unemployed (67%). The mean time since diagnosis was 66months (range six months to 144 months, SD = 45.6). The mean CD4 count was 168 (range0 to 490, SD=132).

Interview schedule

To elicit accounts of uncertainty experiences, participants were asked a variety of open-endedquestions meant to stimulate group discussion. Probe and follow-up questions also wereincluded to clarify issues and to validate researcher interpretations. The interview schedulecontained four major areas to be included in each group discussion. The interviewer beganby asking the participants to talk generally about their experiences since testing positive forHIV. Participants were encouraged to think broadly about their life experiences. Thenparticipants were asked to describe things that made them feel uncertain (or have questions)since testing positive for HIV. They next were asked to describe how uncertainty affectedtheir lives. Finally, group members were asked to describe methods they had used to managetheir uncertainty. Again, for the purpose of the current study, we report only data andanalysis describing the experiences of revival-associated uncertainty, a predominant issue formany focus group participants.

Procedures

Data were collected from six focus groups conducted between January 1997 and September1997 in the midwestem area of the USA. The first author was present at all focus groupdiscussions. In addition, in each group one researcher acted as a primary moderator whileanother noted speaking order to facilitate transcription. Before the discussions began, eachparticipant signed an informed consent statement and completed a brief demographicquestionnaire. Focus group discussions ranged from one-and-a-half to two hours in lengthand were audiotaped. The researchers presented the reported results to several studyparticipants and were told that the analysis is congruent with their revival experiences.Conducting multiple group interviews and verifying participant reactions to revival themeshelped to strengthen data credibility.

Data analysis

The researchers used latent content analysis (Babbie, 1995) and constant comparativetechniques (Lincoln & Guba, 1985) to analyze interview transcripts. The researchers inde-pendently coded group transcripts to identify general categories. This led to a first general setof questions (i.e. areas of uncertainty) surrounding the issue of revival (e.g. 'What if I live?','What will my life be like?', 'Will I get sick again?', 'Do I still have AIDS?'). The researchersthen met and discussed their independent lists to develop a central set of preliminarycategories. Second, the researchers independently returned to the transcripts with these

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preliminary categories attempting to discern major conceptual themes crossing the groupsand unifying the questions. The researchers again met and reached consensus on globaldimensions in the narratives. Third, the researchers returned to the transcripts and indepen-dently coded all revival narratives into one of the four global dimensions. The researchersthen met to discuss the coding and clarify categories. Finally, the researchers independentlytook the coded examples and selected prototypical exemplars for use in the paper todemonstrate the themes. As a group, the researchers discussed the prototypes until consensuswas reached on appropriate examples for presentation. The following section details thefindings of this study, and elaborates each of the four themes.

Findings

A major source of uncertainty for participants was revival. Many participants reported thatthey had experienced denial and anger upon learning of their HIV-positive status, yet manyalso said they eventually accepted that their premature death was likely. This acceptanceinvolved changing their perspectives about important issues such as long-range plans,self-identity, and their interactions with others. However, while many persons living withHIV/AIDS have been forced to come to terms with the likelihood of an early death, manynow have reason to hope for recovery from the disease. With highly active combination drugtherapies, many persons with HIV/AIDS are experiencing increased helper T-cell counts anddecreased levels of the HIV in their blood stream (Carpenter et al, 1997), strengthening thathope. At the same time that these kinds of improvements in health seem miraculous for thosewith AIDS, surprisingly, they also bring with them new uncertainties that can becomeunexpected and significant life stressors. Persons living with HIV/AIDS have needed tore-structure (or 'reconstruct', see Barroso, 1997; Sowell, 1997; Sowell etal, 1998) aspects oftheir lives. In most cases, life priorities, types of financial support and work status, personalrelationships and long-term plans had to be negotiated when they were diagnosed. Thus,almost as a mixed blessing, the prospect of recovery from AIDS brings with it a multitude ofnew complex issues that can be difficult for persons to address in their lives. One focus groupparticipant, Victor, spoke of how revival led to increased anxiety in his life:

The weirdest thing to me now is that I am experiencing stress, because ... now itlooks like I'm going to be living for a long time. You know, I'd said good-bye andI felt free from all of these responsibilities that had to do with my career, and so on.And now all of the sudden I have to start thinking about tenure—again—and I haveto start thinking about doing scholarly publishing to get tenure—again—you know,stuff which I really don't care to do, but if I'm now going to live, I'm going to haveto do it. So, with me it's almost as though the stress had really ended when I gotreally sick because I had reached this, kind of coming to terms—I don't think thatI felt an enormous amount of emotional stress for a while. But, now it has startedback up again, when I've gotten more healthy. And that's the most perverse thingin the world, for what that's worth.

The renewed prospect of living therefore required renegotiating many of the realities thatparticipants had come to accept. This renegotiation is a source of uncertainty, and oftenstress, for many participants. Specifically, participants noted uncertainty associated withhaving to renegotiate: (a) feelings of hope and future orientation, (b) social roles andidentities, (c) interpersonal relations, and (d) the quality of their lives. Each of these themeswill be elaborated in the following sections.

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Feelings of hope and future orientation

For those living with HIV or AIDS, the possibility for, and degree of, recovery may differ foreach individual. As a result, many living with HIV/AIDS fear being too hopeful. For thosewho have come to terms with their own mortality, to hope for recovery may mean re-openingthemselves to disappointment and new despair. The fear of recurrence of cancer has beencalled the 'Damocles Syndrome' (Koocher & O'Malley, 1981; see also Muzzin et al., 1994).In Greek mythology, 'Damocles was invited to dine with a king; however he was seatedbeneath a sword suspended by a single horsehair. This visual representation is used to depictthe tenuousness of happiness' (Quigly, 1989, p. 64). For persons with HIV or AIDS, thattenuousness is particularly salient because of the many possible complications of HIVinfection. Many realize that improved health still will mean a continued life with a chronic,and possibly life-threatening, illness. Uncertainty associated with feelings of hope and futureorientation includes: (a) a lack of information about long-term efficacy and safety ofmedications and (b) ambiguity about the meaning of immune restoration and function.

For many focus group participants, high levels of uncertainty about treatments revolvedaround a lack of information about the long-term effects of medications. Those takinganti-HIV drugs, either through clinical trials or through prescription, realize that most drugsare still being tested. Although welcomed by most, accelerated drug approval has led manyto question the long-term safety and efficacy of medications. Adam described his uncertaintyassociated with experimental medications: 'The things we're not certain about are ultimatelywhat this drug or drug combination is going to do to us a year from now—we are the test.'Hugh said: 'I'm just not planning. I'm really just trying to deal with today because I don'tknow what the long-term effects of all these new treatments are going to be yet.'

The uncertainty about long-term efficacy centred around unpredictable individual re-sponse to the new drug therapies. Hugh noted: 'These [protease inhibitors] helped a lot ofpeople. But it's not a miracle, it's not a cure. It doesn't work for everybody.' Many knew ofunexplained treatment failures and some worried because of a lack of data on individuals withlong-term infections or low CD4 counts. Randy described his concern: 'My uncertainty isthat they're going to come up with something, this magic bullet, but it's not going to helpthose of us who are already infected or who have been infected for a long time.' Similarly,Clark explained:

I always end up back at, are these new drug therapies gonna work for me? Afterbeing infected for so long? You know, you keep hearing about all these great resultson people who've just been diagnosed, but they're not telling you how peoplewho've been infected for twelve years are doing because they're not doing so well.That's why they're not telling us.

The potential for development of viruses that are drug resistant (see Kuritzkes, 1996)also heightened anxiety about the long-term efficacy of medications and the threat ofrecurrence of HIV replication and downward progression of the illness. Resistance mightmean that certain drugs will only be effective for a limited amount of time. Clark continued:

How are you going to know when yours [treatment] has stopped working? When arewe going to start drug-resistance testing? So that I'll know, okay, this cocktaildoesn't work, I have to switch now to another one. Yeah, it could be, you could waitfor six months and it could be too late by the time you switch. It's all very confusing.

The fear of being hopeful, then, results from uncertainties about the long-term efficacyof treatments. The potential for suboptimal individual response and viral resistance to

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treatments led participants to question the durability of response. As Ungvarksi (1997) notes,the 'next major question' to be answered about the new treatments is 'will this last?'

Related to concerns about efficacy, long-term safety issues were also a source ofuncertainty for focus group participants. Often it is difficult for individuals on HIV medica-tions to discern if their symptoms are a result of HIV infection or of adverse effects of themedications, which can heighten fears about their safety. Kent's concerns included theunknown safety of the drugs. He noted:

And so the other thing is, sure you live another 40 years—then I'm 72—am I goingto get a condition 40 years from now that is related to this that they didn't foresee?Maybe because of these drugs or something, I have a heart condition or something.

Several women expressed concern about the safety of medications because of a lack ofinformation on the effects of protease inhibitors on middle-aged women. Carol noted: 'Ireally don't like this Crixivan. I think it's too toxic. And I really do think it is playing with myhormones.' Alice added:

... there's also a lot of women my age who are heading into menopause, and we haveno idea how our bodies are going to work. I mean, one month I'm going 28 days.The next month it's 20 days. And then it's 27. There's no rhyme or reason and theonly time I have side effects is during that 10 day period. And I even called Abbottto get some feedback and they couldn't even tell me anything.

Thus, many reported feeling grateful that drugs appear to be significantly halting HIVreplication, yet they remain cautious because of uncertainty about long-term efficacy andsafety.

Adding to the uncertainty about long-term efficacy and safety of medications is theconcern that 'restored' immune function may not be effective (for example, see Voelker,1997). Participants noted that this uncertainty threatened feelings of hope and futureorientation. In the following dialogue, a group of individuals with CD4 counts less than 200discussed this issue:

Clark: Is there going to be any immune restoration therapy?Daniel: That's what I want to know.Clark: And, you know, when are my T-cells going to start reproducing?Miguel: Or are they good T-cells, or are they bad T-cells?Clark: And are these cells even going to work?Several people: Yeah, right.Adam: Yeah, I mean, just because my viral load went from sky-high to undetectable,what the hell does that really mean? Does it mean that my immune system is anybetter off? By the way I feel, it's not!

Others also commented on the ambiguity of physiological indicators of health status such asviral load and CD4 counts. Bruce noted:

I was on a protease for three months and my viral load was near undetectable andthen my CD4 counts did nothing they just stay around 60, 70, and uh, the doctorcalls me up and says, 'you know your viral load is almost undetectable'. Two dayslater I'm in the hospital with pneumonia. So you spend two days celebrating andthen you think like 'well, what's up with this?' You know, 'what is going on?'

Uncertainty about the functionality of restored immune systems led many to question

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the meaning of longer survival. Some anticipated that survival might mean longer periods inwhich health might decline. For example, as part of the concern about the functionality ofrestored immune systems, participants raised the issue of whether or not to stop prophylaxis.Adam noted: 'I stopped doing one of my PCP prophylaxis. Now I'm having symptoms ofPCP or something going on which they can't diagnose. It's very frustrating and I don't knowwhether it's because I stopped this or not.' In addition, Clark worried that prophylaxis againstthe major opportunistic infections today may lead to a longer life with HIV having to face asyet unknown opportunistic infections:

The uncertainty that's been bothering me lately is prophylaxis. Now that we'resurviving [PCP], there's certainly other opportunistic infections out there that wedidn't get before because we didn't live long enough. And they're just waiting,lurking, and you get this feeling there's some bug lurking on your shoulder.

In summary, individuals experiencing revival noted uncertainty associated with feelingsof hope and future orientation because of a lack of information about the long-term effectsof medications (e.g. issues of safety and efficacy with experimental medications) and theambiguity of immune restoration and function (e.g. the meaning of increased CD4 countsand decreased viral loads). These sources of uncertainty impacted the feelings of hope andorientation toward the future of the participants in the study.

Social roles and identities

Uncertainty about prospects of revival also came about because of a need to renegotiate rolesand identities. Chronic illness can disrupt a person's self-image (Corbin & Strauss, 1988).For example, Charmaz (1994) argues that men face 'identity dilemmas' when faced with achronic illness, which may include 'defining illness and disability' and 'accommodating touncertainty as men realize the crisis has lasting consequences for their lives' (p. 269; see alsoCharmaz, 1995). Corbin and Strauss (1988) maintain that 'biographical work' associatedwith managing chronic illness includes 'recapturing the past, examining the present, andprojecting into the future—all interpreted in the light of the present' (p. 70). Thus, in makingsense of their experiences, individuals attempt to incorporate their illnesses into their socialroles and identities.

For persons with an HIV infection, upon diagnosis there is a need to come to accept anew identity. Roth and Nelson (1997) note that individuals develop HIV-positive identitiesin part through their association with HIV-positive communities (e.g. AIDS service organiza-tions or support groups). Other aspects of the HIV-positive identity develop through comingto accept HIV as a terminal illness (Chidwick & Borrill, 1996).

As part of 'coming to terms' with an identity of a person with a terminal illness (Corbin& Strauss, 1988), many of those in this study had made end-of-life plans (e.g. securingdisability, writing wills and planning funerals) and had lived their lives with the expectationof dying prematurely (e.g. making viatical settlements and charging credit cards to theirlimits). Many participants in the focus groups reported coming to terms with the potential forearly death. Victor noted:

I had made all of my funeral arrangements, and I had decided in my own mind thatI was going to die and my partner also, the two of us had gone through all of thestages of dealing with this. I had reached a stage of complacency about it. Lots ofreally romantic notions of how I was going to pass away, and all of this kind of stuff.

Randy added that the anticipation of an early death impacted day-to-day activities:

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When I was first diagnosed, I went through a long period where, you know, I didn'tbuy any clothes because I figured my weight would change, or I would die and Iwouldn't need them. You know, do you buy green bananas? How much time do youhave?

For most participants, after accepting death, the prospect of revival led to a primary area ofuncertainty because of the need to renegotiate their social roles and personal identityschemas. After having accepted himself as a person with HIV/AIDS in a time when the HIVtrajectory was seen as primarily downward, Victor described his own improved health, whichincluded decreased HIV viral load, increased CD4 counts, and remission from Hodgkin'slymphoma, as 'as close to a medical miracle as I can conceive'.

Upon revival, major pressures were reported by participants because of the perceivedneed to return to work, to get off disability, and to pay for drugs; yet many expressed concernthat their health would be adversely affected by the stress of working. This led to an identitydilemma for many participants. On the one hand, they wanted to return to their careersbecause the 'worker role' represents values that many believe are important (e.g. indepen-dence, self-sufficiency, responsibility and stability; see Simon, 1997). Becoming 'disabled'had been an identity-threatening event (Thoits, 1995) for many participants. As Rebeccastated: 'I was always independent. Now, all of a sudden, I'm asked to learn this. This isdevastating. I don't like being on welfare, going and collecting food stamps, you know.' AsNeal noted: 'I've been on disability, on SSDI, for a year. And yeah, I want to get back intonursing.' Yet, on the other hand, many reported that being on disability had allowed themto make their health care the focus of their lives. Greg and Hugh noted:

Greg: You know for me the other piece is I know that, after going on disability acouple of years ago—and I was pretty sick when that happened—I've experiencedsome really good health. One of the big things I attribute that to is the fact I haven'thad to deal with the stress of working. What is going to happen if I do go back towork? Am I going to get so stressed out I'm going to end up in the hospital again?You know, I'm healthy because I'm not working.Hugh: You're healthy because you're taking care of your health.Greg: ... right. And that in itself is a full time job.

Uncertainty therefore created a need to examine the roles that individuals could assumeas a person experiencing revival. Managing a new identity often involved dealing with thefmancial and social changes experienced during a time of acute, life-threatening illness. Forexample, as Hugh noted, revival (i.e. changing to the identity of a person living with a chronicillness rather than a person dying from a terminal illness) led to uncertainty about his abilityto pay the debt he incurred after accepting an early death:

What about that viatical settlement? I mean, what about that vacation I'm takingevery other month? I've done all kinds of things planning on my death. And, if Idon't die, I owe an awfiil lot of people an awful lot of money.

Related to issues of identity, another area of uncertainty which surfaced for personsexperiencing revival involves the diagnosis itself. Many individuals had an AIDS diagnosissolely because their CD4 count fell below 200 (by the 1992 CDC defmition of AIDS), butthey are uncertain of their status when their CD4 count rebounds above 200. Some, such asVictor, would prefer to no longer be classified as persons with AIDS:

The question that I've got now is that I was diagnosed with AIDS, my CD4 countwent down to 40 and I didn't have any other opportunistic infections, but that alone

2 1 0 D. E. BRASHERS fir/4L.

was the diagnosis. Now that it's climbed above 200 again, do I still have AIDS? Iwant to know this, I want to argue that I don't ... so, that's a kind of curious littlebattle.

Similarly, Frank said: 'You know I don't consider myself a person living with AIDS. Iconsider myself as a person recovering from AIDS.' However, others (for example, those onSSDI) reported that they might prefer to remain classified as persons with AIDS so that theyare not forced off of disability and back to work, which they believed might threaten theirhealth.

Although most participants reported stress associated with changes in their roles andidentities, not all experiences of uncertainty about renegotiated identity were stressful.Several members reported that facing one's own mortality was a growth experience. Re-searchers have described the phenomenon of finding positive meaning in one's negativeexperiences as transcendence (Mellors et al, 1997). Self-transcendence has been described asgiving and discovering the meaning of conditions or events about oneself (Frankl, 1963) anddefined as 'the expansion of one's conceptual boundaries inwardly through introspectiveactivities, outwardly through concerns about others' welfare, and temporally by integratingperceptions of one's past and future to enhance the present' (Reed, 1991, p. 5). As Victornoted:

I think that in an important way, I did die, because I am not the same person thatI was a couple of years ago. If death is just a really radical change of some sort, that'swhat has happened to me. And the awareness of death and the awareness of mymortality is with me every moment that I live now. And when I waste time now, Ido it on purpose. I still waste time, but I'm just very deliberate and also very carefreeabout a lot of the things that I do, and I feel like I'm much more spiritual and muchmore purposeful about what I do with my life. That isn't something that you shouldhave to be laid up in bed to be able to realize, I mean, that's something that weshould be taught when we're children or that we should be encouraged to under-stand from the minute that we're bom, but we don't and this has taught that to me.I'm ... really kind of glad.

Overall, participants reported uncertainty associated with a transition from a dying roleto the role of a person living with a chronic illness. The potential for surviving AIDS, afterthe likelihood of death had been accepted, involved renegotiating roles and identities. Formany participants, this led to uncertainty about how to re-enter life as a person living witha chronic illness, rather than a person dying from a disease. However, although acceptanceof a dying role led to actual and symbolic losses, some participants experienced transcen-dence as they realized their illness had significant impacts not only on their physical health,but also on their psychosocial development.

Interpersonal relationships

Revival experiences also centred around relational issues for many participants. For example,some participants feared that HIV-associated stigma might be more pronounced withrecovery. Many persons with HIV or AIDS have experienced stigmatizing reactions of others(Alonzo & Reynolds, 1995; Crandall & Coleman, 1992; Grossman, 1991), including friendsand family. Greg noted: 'My parents' idea of support is to call my disease leukemia.' Rebeccaadded: 'My family says I have cirrhosis of the liver and lung cancer.' These negative reactionsmay increase sensitivity to potential future reactions of family, friends, employers, coworkers

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and others as persons with HIV/AIDS re-enter the workforce. As Adam stated: 'You justdon't know how people are going to treat you—you know they're going to be treating youdifferently—you just don't know how that is. And that's, there again, uncertainty.' Becauseof the uncertainty. Clark argued that keeping one's HIV status private may be necessary forself-protection:

Yeah, but you have to balance that; there's a time and a place where it's to yourpersonal benefit for people not to know you're HIV-positive. I'm always advisingpeople, I mean if you're working or whatever, hey, if you feel like you have to lieabout it, there comes a point where you've got to protect yourself. We're talkingabout protection. People can make you suffer a great deal.

Participants noted that, as part of revival, there would be an increased need to explainor account to others as they moved back into the workforce. This lead to uncertainty aboutthe reactions of employers and coworkers. As Thomas suggested, working with individuals ona day-to-day basis increases the likelihood that he will have to confront issues of HIV-relateddiscrimination:

I'm trying to figure out whether to go back to work or not and, for some reasonthat's my biggest fear right now. I've got a tattoo and that doesn't bother me. I canwalk around town with a tank top, because I guess those people I'll only see onceor twice. But I'm going to go into work every day and sit next to these people andI know some of what these people have already said. And, that's just scaring me todeath. I mean, my doctor keeps saying don't rush it, you have until May anywaybefore you actually lose your sick time status and get terminated, so don't rush it.But I feel like I'm ready to go back—that I should be back. But I'm just scared todeath of what people are going to say for some reason and I've never been scaredto death about it before but—maybe it's because before I always thought I was goingto get sick and die. But now I know I'm going to have to live with it a lot longer,and, well forever, in fact, and there is nothing I can do about it.

In addition, according to the participants, simply attempting to return to work after being ondisability creates a 'double stigma' for these individuals. They are not only a person with HIVor AIDS, but also a person who had become disabled. As noted in the following dialogue, thiscreates difficulties for the job search:

Edward: How do you pick up a career afrer a three, or four, or five year absence orlonger ...?Clark: Or longer, yeah.Miguel: And how do you explain that? I was talking to a friend of mine who is aheadhunter the other day, and we were talking very honestly about the fact that afteryou've been on disability for three or four years, a new employer doesn't look verykindly at that prospect—let alone figuring out why it was that you were on disability.Disability, in general, whether it is a back injury or whether it's a chronic illness,employers just don't look at that very favorably.

Clark responded similarly, adding that his age also was a complicating factor:

That would have been all well and good when you're 25 or 30 years old. I mean,I'm 46 now. I was supposed to be dead ten years ago. And I've just been hangingaround waiting to die. And, what do you do? All of the sudden you're 46 years oldand you're knocking on doors and saying, 'Well, I want to change careers'. And,

2 1 2 D. E. BRASHERS ETAL.

they're gonna ask you, like Miguel said 'What have you been doing the last tenyears?'

Other interpersonal or relational issues surfaced in the group discussions. For some,revival led to new feelings of guilt and unworthiness of survival because many other persons(including friends and partners) had already died from AIDS. Thompson et al. (1996) reportthat illness and death of friends, family members and partners are a major source of stress forHIV-positive individuals. Part of that stress may be due to survivor guilt. In research on HIVand AIDS, survivor guilt has been noted among seronegative gay men (Koetting, 1996;Odets, 1994), children of parents who have died from AIDS (Dane, 1994), and AIDScaregivers (Perreault, 1995). Boykin (1991) found that HIV-infected gay men were slightlymore affected by survivor guilt than their HIV-negative counterparts. Similarly, survivor guilthas been described in war veterans (Davidson et al., 1990; Hendin & Haas, 1991) andHolocaust survivors (Cohen, 1991; Garwood, 1996). Across these studies, it is apparent thatsurvivor guilt is a major psychosocial stressor.

Participants in this study reported survivor guilt as a double bind that resulted frombeing happy about one's own survival (and potential for revival) and sad about the death offriends and lovers. Participants questioned why they lived when others had died. Manyexpressed the wish that their friends and lovers could have lived until the new advances intherapy were available. Hugh described his feelings this way:

I have a hard time with friends around me dying on me. And I carry a lot of guiltbecause, and I'll use a mutual friend that still hurts a lot, is our friend, Mark. Soyoung. Died. Never got to accomplish as much as he wanted in life. And I'veaccomplished so much and done so much. I just would want to switch places withsome of these people. You know, because I'm so much more comfortable, andprepared, and I hate losing some of my brothers because they haven't had theopportunity to live ... So, I mean, that's really hard on me.

Thus, for many participants, revival meant having to deal with people on a long-term basiswhen they had expected many of those relationships to be in the past. In addition, theyreported guilt because of living longer than friends and loved ones.

Changes in quality oflife

Questions about the quality of life after revival also were reflected in the discourse of thesegroups. Although HIV disease progression has been associated with declines in scores onquality oflife measures (Revicki et al., 1995; Rizzi et al., 1994; Wachtel et al., 1992), it is notclear that revival will result in improvement. Concerns about side effects of medications,unforeseen opportunistic illnesses and living with a chronic disease all were seen as potentialimpediments to normal life quality. As Clark noted: 'You tell me, "the good news is you'regoing to live. The bad news is you're not going to enjoy the rest of your life." ' Similarly,Wayne stated that:

I want to live, you know, it's not that. It's just that I want to live a quality of life.So I'm going to break out in a rash, or is my blood pressure going to go sky high,if I take this drug?

Finally, Bruce added that:

There are other things you're going to get. You know, maybe you're going to livelonger and be sick. You know, it's just sort of a chronic illness; I think that's where

UNCERTAINTY AND REVIVAL 2 1 3

you're missing the boat. Life's never going to be back to where it was; we're nevergoing to feel as good as we did before.

Quality of life issues because of the diversity and unpredictability of symptoms were amajor source of uncertainty for participants. Adam noted that: 'The hardest thing is todifferentiate what symptom is being caused by the drugs you're on, and what symptom isbeing caused by the virus itself or the infection that's active at the time.' These symptomslead to questions about maintaining an acceptable quality of life during a life of prolongedHIV treatment. As Clark noted:

Yeah, your intestines could take a major beating after a while. How many years canyou take these drugs and have an HIV infection? And the HIV can itself affect theintestines, or you can get a parasitic infection, or the drugs can do it. After a while,you don't know what's causing it, you just go from one bout of diarrhoea to thenext.

Because of this uncertainty, others noted the need for the medical scientific community toaddress quality of life issues such as side effects of medications. Adam stated:

Don't you think that, too, physicians now are going to have to change? ... there aremore and more people living with higher T-cells and lower viral loads and the[opportunistic] killers are going to be around less? I mean, they're going to have tostart addressing our symptoms that are not being addressed now—like fatigue andthe nausea and things that are caused by drugs that we're on.

Finally, some questioned how the financial cost of taking expensive medications wouldimpact long-term life quality. Especially for those who were working, and were responsiblefor insurance copayments or drug costs, the prospect of HIV infection as a chronic illness wasdaunting. As Ian noted:

I think another uncertainty for me is financial ... I read about some of thesetreatments and these protease inhibitors and I think, 'Boy, I'd like to be on that'.Then I look up the EWP [Estimated Wholesale Price], and 'Shit, I can't afford that'.You know, I live in a nice house, I drive a nice car, I like to go on vacations a coupleof times a year and then I think, with the drugs I'm on I can afford them and stilldo this. If my T-cells start to drop, how far are they going to have to drop beforeI start giving up some of these luxuries to buy the medications? That's a biguncertainty for me. I think 'would I rather live ten years having this, what I considera nice lifestyle or twenty-five years on Medicaid?' So, yeah, all these new treatmentscome out and you read it and all the newspapers practically tell you it's a cure, theseprotease inhibitors, but who is going to be able to afford them? And even if you haveinsurance, I know the behind the scenes workings of Pharmaceuticals as far asinsurance goes, and we can't honestly expect these insurance companies just to pickit up. It would be impossible. I mean, all the premiums for the businesses andeverything would just go sky high.

Thus, the human and financial constraints of living with a chronic illness all can impact lifequality. Persons with HIV/AIDS may wonder, 'If I'm getting better, why don't I feel better?'

2 1 4 D. E. BRASHERS ETAL.

Implications

We found that HIV-infected individuals experiencing revival encounter a number of uncer-tainties that can be potential sources of stress. These include renegotiating: (a) feelings ofhope and future orientation, (b) social roles and identities, (c) interpersonal relations, and (d)the quality of their lives. At least in part, this stress is the result of having accepted death andthen having that reality change as new treatments provide a basis for optimism about survival.The results of this study have several implications for Uncertainty in Illness Theory, as wellas for HIV/AIDS care and prevention efforts. These implications are addressed below.

Implications for theory and research

The results of this study support Mishel's Uncertainty in Illness Theory (1988; 1990). In theexperience of revival, participants reported uncertainty due to ambiguous symptom patterns,complex systems of treatment and care, insufficient information about diagnosis and unpre-dictable disease progression and prognosis. These sources of uncertainty connected with thethemes identified in this study. Moreover, this paper forwards Mishel's theory in twoimportant ways. First, in this paper (see also Brashers et al, 1998) we have extended theconception of uncertainty in illness beyond the medical conception that has predominatedthe literature to date. Although Mishel's theory was developed specifically to explain thephenomenon of uncertainty about illness and systems of care, this research demonstrates thatthere are important interconnected social and psychological concerns that combine withuncertainty about illness and systems of care. For example, positive or negative changes inhealth status (e.g. uncertain prognosis) can impact individuals' uncertainty about financialwellbeing, the social reactions of others and future changes in health status. Improvements insurrogate markers of health (increased CD4 counts or decreased viral load) may or may notbe accompanied by improvements in quality of life, because of side effects of medications orcosts of HIV care. Second, this study supports Mishel's (1990) contention that individualswith chronic illnesses or illnesses that have a threat of recurrence must be taught to cope withchronic or continual uncertainty. Our data indicate that, even among individuals who seemto be experiencing vast improvement in their health, there remains uncertainty that can be asignificant psychological stressor. Developing theoretical understanding of uncertainty expe-riences across an unpredictable illness trajectory is needed, as well as theoretical work on howindividuals manage or adapt to uncertainty and the consequences of unmanaged uncertainty.Failure to adequately manage uncertainty might lead to 'chronic sorrow' that has beenreported in cancer populations (see Burke et al, 1992, for a review).

Research on uncertainty in HIV illness should incorporate a broader perspective on thepotential sources of uncertainty and their connection to outcomes. This will require develop-ing instruments to measure the non-medical aspects of uncertainty, as Mishel (1981; 1983)did with the medical aspects of uncertainty in illness. In addition, participants in the studydescribed symptom management as an important direction in research on HIV care. As lifespans are extended, concern increases for quality of life enhancement. Nursing researcherscan play a critical role in research aimed at managing the symptoms of HIV and associatedinfections and side effects of medications.

Implications for care of HIV-infected individuals

Health care providers should be aware that improved health can be a source of uncertaintyand potential distress for their clients. Sowell (1997) notes that, due to renewed health and

UNCERTAINTY AND REVIVAL 2 1 5

the Lazarus Syndrome, 'reconstruction case management' is needed to help individuals andthat advocacy programmes, support services, 'back-to-work' and career counselling, and peersupport are key ingredients of such programmes. In addition, the need for psychosocialintervention to assist individuals who are experiencing revival-related uncertainty may be animportant component of care. Uncertainty can be appraised as danger or opportunity(Mishel, 1988; 1990). If individuals appraise uncertainty as a danger, information and/orinformation-seeking skills should be provided towards the reduction of uncertainty. However,for many areas of uncertainty, there currently is insufficient information to provide answers.Individuals experiencing revival who are concerned with long-term efficacy and safety ofdrugs may want regular updates from results of clinical trials. That information should beprovided in a clear manner through accessible channels. Eakes (1993) found that theprovision of timely and understandable information was seen as a deterrent to chronic sorrowin individuals with cancer, and she suggested that nurses (and other health care providers)need to interpret and explain information to patients. Individuals with HIV also may needcounselling or stress management training (McCain et al, 1996) to help them deal withissues such as stigmatizing reactions or rejection from others, survivor guilt and diminishedquality of life, and to manage uncertainty that cannot be reduced. As HIV disease becomesa chronic illness, learning to live with chronic uncertainty (see Mishel, 1990; 1993) may bea necessary adaptive coping mechanism for individuals with HIV infection.

Implications for prevention and education

Our findings also have implications for prevention and education. Some research indicatesthat gay men are reporting less attention to safe sex because of media messages that promotethe idea that triple drug cocktails with protease inhibitors are 'the cure' for HIV/AIDS (Dilleyet al., 1997). This apparent impact on the sexual behaviour of gay men poses a real threat toprevention efforts. Researchers have found that some individuals say they ynW engage in riskysex because they believe the new drug combinations offer both therapeutic and prophylacticremedy for HIV infection. However, these individuals need to know that life on the new drugcocktails is not the same as life as an uninfected individual. There are severe stressorsassociated with complicated drug regimens, side effects of medications, unknown long-termefficacy and safety of drugs, and the financial consequences of long-term reliance on themedications. Prevention and education efforts need to reinforce to their target audiences thatlife with an HIV infection and antiviral medications is complicated and uncertain. Althoughsome individuals report transcendence, most still deal with a multitude of unresolved issues.Issues of drug failures and drug resistance complicate the ability to predict sustained response(Guidelines Shed New Light, 1997). As Bradley-Springer (1997) notes:

All in all, treatment optimism must be tempered with medical and social reality:treatment will not be available or effective for all of those who need it, no one isclaiming a cure, and prevention must still play a pivotal role in an overall approachto the epidemic (p. 87).

Conclusion

Improved treatments have brought optimism for many individuals with HIV or AIDS, butthat hope is tempered by many unanswered questions. These sources of uncertainty representmedical, social and personal consequences of renewed health that may impact individuals'

216 D. E. BRASHERS ETAL.

ability to successfully reconstruct their lives. The phenomenon of revival appears to be mostpronounced among individuals who had experienced a definite downward trajectory in theirillness (as evidenced by CD4 counts falling below 200) prior to the advent of potent therapiesand now foresee recovery. This phenomenon may be different for individuals who arediagnosed early (when their immune system remains relatively intact). For those who arediagnosed later, recovery from low CD4 counts or opportunistic infections may continue tolead to experiences of revival. For both groups, uncertainty possibly could remain because ofcycles of viral response and rebound, or when new issues arise (such as concerns about HIVreservoirs; see Perelson et al, 1997). Continued work to understand the uncertainty experi-ences of those individuals with HIV or AIDS is needed.

Finally, as was noted earlier, not all experiences associated with revival were necessarilystressful for participants in this study. Revival, as one might expect, for many also is a sourceof renewed hope and optimism. For Alan, the potential for revival due to protease inhibitorswas an important second chance for him. He noted:

Well, this seems to me at times to be sort of pie in the sky, but I think that, especiallywith the introduction of protease inhibitors, that this presents an opportunity ofcourse that just never existed before. And I've been thinking about that cliche, 'Iwish I could go back to when I was eighteen and know what I know now.' Well,to an extent, that's what I feel like now. And I haven't tried protease inhibitors, Idon't know if they will work for me at all, but part of me feels like I can go backto eighteen and know what I know now. Because, the bigger thing that this hastaught me is to ... I keep thinking of that scene from Scrooge where he runs outinto the street, and it's sunny, and it's like, 'I got a second chance at life', youknow, that whole scene. And it makes me think, now I can stop living like the ratrace millions, now I live in the here and now, now I don't have to be so fixated ondying, now I can stop projecting into the future, now I can just be happy in the hereand now and, and live the life I want to live. And if that is the lesson that's comeout of all this, great. I certainly wouldn't want to think that I had to go throughthis to learn this, but if anything this wonderful has come out of it, then so muchthe better.

Acknowledgements

We gratefully acknowledge support for this research from the National Institute ofNursing Research (1R29NR04376), the National Institute of Allergy and Infectious Diseases(Adult AIDS Clinical Trials Group #AI25924, R. J. Fass) and from the Ohio StateUniversity College of Social and Behavioral Sciences. We also wish to thank the menand women who participated in this study and to acknowledge Marie Garland, WilliamMcCartney, Sally Nemeth and Angela Swary for their help with data collection and tran-scription.

Note

[1] The 'Lazarus Syndrome' is named for the biblieal character Lazarus. In the Bible, Jesus brought Lazarus backfrom the dead after four days in his tomb.

UNCERTAINTY AND REVIVAL 217

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