2011. Vol.2, No.2, 117-121
Copyright © 2011 SciRes. DOI:10.4236/psych.2011.22019
Illness and Medication Appraisals in People with HIV
Deciding to Begin Antiretroviral Treatment
Judith Wrubel1, Judith T. Moskowitz1, Eu ni ce Steph ens2, Mallory O. Johnson2
1Osher Center for Integrative Medicine, University of California San Francisco, San Francisco, USA;
2Center for AIDS Prevention Studies, University of California San Francisco, San Francisco, USA.
Received August 13th, 2010; revised December 9th, 2010; accepted December 21st, 2010.
Deciding to initiate antiretroviral treatment (ART) for HIV involves a number of factors, including how one
thinks about disease (illness appraisals) and how one thinks about treatment (medication appraisals). We con-
ducted semi-structured interviews with 20 adults who were deciding whether to begin ART, in which partici-
pants were asked to relate their experience of testing positive, their experience with medications other than ART,
and their thoughts about ART. Digital recordings were transcribed for team-based narrative analysis. In response
to HIV+ diagnosis, participants described the following appraisals: 1) HIV is a threat to mortality; 2) nonaccep-
tance of the HIV diagnosis; 3) HIV is associated with stigma and rejection; and, 4) the HIV diagnosis meant be-
trayal by a cared for other. Medication appraisals included: 1) negative feelings about medications in general, 2)
taking HIV medication would create a personal crisis; 3) the benefits of taking HIV medication would not out-
weigh the costs; 4) doubts whether they could adhere, and 5) taking medications would be stigmatizing. Illness
and medication appraisals may represent barriers to initiating and adhering to treatment and should be taken into
account in helping clients t o c o p e w it h t heir diagnosis and man a g e t h e i r healthcare.
Keywords: Antiretroviral Therapy, HIV/AIDS, Health Care Utilization, Illness Appraisals
The decision to initiate antiretroviral treatment (ART) for
HIV rests on a number of considerations ranging from the in-
terpretation and implementation of formal treatment guidelines
to informal assessments by providers and patients of a patient’s
likelihood to adhere to an ART regimen. Two central factors
that subsequently influence the ability to maintain adherence
are how people with HIV think about their disease (illness ap-
praisals) and how they think about HIV medications (medica-
tion appraisals). An illness appraisal is an individual’s beliefs
about the course and consequences of an illness, which includes
the interpretation of symptoms and the understanding of how
the illness will affect future survival, health, and well-being.
Illness appraisals (Moskowitz, Wrubel, Hult, Maurer, &
Stephens, 2007; Moskowitz & Wrubel, 2005) have been de-
scribed in terms of illness meaning (Browne et al., 1988; Farber,
Mirsalimi, Williams, & McDaniel, 2003; Fife, 1994, 1995,
2005), illness representations (e.g., (Leventhal et al., 1997)
personal models of illness (Skelton & Croyle, 1991), and illness
perceptions (Weinman, Petrie, & Moss-Morris, 1996).
Some researchers have developed questionnaires designed to
elicit people’s appraisals of their illness (e.g., Fife, 1995;
Weinman, et al., 1996). While useful in some contexts, there
are limitations to this approach. Questionnaires provide pre-set
and pre-defined appraisals and may miss important appraisals
that are unique to the individual. Second, the meanings are cast
as either positive or negative. (e.g., “My illness is something I
will never recover from.” “My illness is serious but I will return
to life as it was.” (Fife, 2005; p. 2136). In this way, the mean-
ing of the illness for the person and the positive or negative
outcome of having this appraisal are confounded. Further, as
Hunt, Jordan, Irwin and Browner (Hunt, Jordan, Irwin, &
Browner, 1989) have pointed out, measures like the Health
Belief Model (Rosenstock, 1974) use physicians’ diagnostic
categories and not the patient’s understanding of the illness.
This last point illustrates the importance of distinguishing
between disease, which is the biomedical assessment of disrup-
tion in the body, and illness, which is the lived experience of
that disruption. Health researchers have recommended the ex-
amination of the insider perspective that speaks to how illness
is experienced cogni tively and emo tion ally by individuals in the
context of their ongoing lives (Benner & Wrubel, 1989; Conrad,
1990; Eisenberg, 1977; Kleinman, Eisenberg, & Good, 1978;
Zimmermann, 2004, 2007).
Taking the issue of distinguishing between disease and ill-
ness one step further, researchers have called for the study of
the link between illness appraisals and medication appraisals,
particularly among people with chronic illness. They have ar-
gued for a shift from a doctor-centered to a patient-centered
understanding of medication-taking in order to see the full con-
text of the effect of medications on people’s lives and to under-
stand how people actively incorporate medication practices into
their lives (Conrad, 1985; Shoemaker & Ramalho de Oliveira,
2008; Stimson, 1974). Illness and medication appraisals have
been investigated in people with asthma (Adams, Pill, & Jones,
1997), rheumatoid arthritis (Donovan & Blake, 1992), epilepsy
(Conrad, 1985), HIV (Golub, Indyk, & Wainberg, 2006), and
people with common but non-specific symptoms (e.g., dizzi-
ness, headache, fatigue) (Hunt, et al., 1989). These latter au-
thors conclude: “To be of any real value the treatment for an
illness must be usable. It must be capable of addressing illness
as it occurs in the context of everyday life” (Hunt, et al., 1989;
J. WRUBEL ET AL.
It is particularly with respect to antiretroviral therapy (ART)
for HIV, which requires very high levels of adherence to be
effective, that the need for understanding illness and medication
appraisals has become a focus. As Remien, et al. (2003) have
noted: “The ‘meaning’ of medication and Western treatments
can differ across individuals and this in turn can influence ad-
herence behavior.” (p. 70)
Golub et al. (2006) propose reframing the traditional view of
adherence/non-adherence from a treatment problem to an ill-
ness problem. In their study of 42 HIV-positive men and
women, the authors identified the following medication ap-
praisals: medication side-effects personally intolerable; daily
activities more important than adherence; taking any medica-
tion aversive; feeling in control by altering prescribed regimen;
pill-taking part of disease management; medications associated
with feeling healthy. The authors proposed that instead of
viewing adherence in terms of people’s willingness to follow
prescribed regimens, researchers should examine the reasons
behind their willingness or unwillingness. In this way, it would
be possible to develop interventions that could address the
meaning of taking medications for people’s identity, wishes for
autonomy, self-management, and integration into daily life.
These strategies could result in greater commitment to treat-
ment which could lead to better adherence, more effective viral
suppression, and lower HIV-related morbidity and mortality.
We propose that medication appraisals are a factor not only
in adherence to medications, but also in the decision to initiate a
therapy. The decision-making process about initiating ART can
be challenging. People can be confused about the need for
treatment and can be unclear about the possibilities of adverse
side effects, treatment resistance, and the timing of treatment
during the course of disease. This decisional process therefore
offers a good vantage point from which to explore the
co-occurring illness and treatment appraisals that may drive this
decision and affect subsequent treatment adherence and clinical
In the present study we report qualitative data on illness ap-
praisals of HIV and appraisals of antiretroviral medication
(ART) for 20 participants in a formative study of treatment
expectancies. The goal of the study is to articulate the meanings
that HIV seropositivity and ART hold for the participants in
order to illustrate the underlying issues involved in the decision
to initiate treatment.
This study draws on data from a pilot study of treatment ex-
pectancies. Interviews were conducted from 8/2005 to 3/2006.
Twenty men and women with HIV were recruited for one in-
terview about HIV related issues and treatment factors. All
participants were ART naïve and reported being in the process
of deciding whether to initiate ART.
To be eligible for the study, the participants had to be Eng-
lish-speaking 18 or older, HIV-positive, never on ART, and
reporting that they were maybe, very likely, or definitely plan-
ning to start ART in the next six months. Participants were
recruited from flyers posted in clinics and community venues,
referrals from other studies, and word of mouth. Interviewers
obtained informed consent at the time of the interview. Partici-
pants were screened on the phone for inclusion and then sched-
uled for a study interview. The UCSF Institutional Review
Board approved the study’s procedures.
The sample of 16 men and 4 women had been diagnosed
with HIV for an average of 8 ½ years (range 1 to 21 years) and
had never been on ART. Fourteen participants gave their eth-
nicity as White, 4 African American, 1 Latino, and 1 Other.
Twelve of the 20 were employed. Twelve participants had at-
tended college. Of the remaining 8, 1 had not completed high
school. This is a somewhat select sample because it excludes
those people who started ART at the time of their diagnosis.
Many participants in this sample had been diagnosed with HIV
for a long time, and many had viral loads and CD4 counts at or
below levels at which ART is recommended.
The focus for this analysis was the narrative responses to
questions concerning the participants’ experience of testing
positive, their experiences with and attitudes toward medica-
tions other than ART, their thoughts about ART, their defini-
tion of adherence, and their thoughts about their ability to
maintain adherence should they begin ART. Narrative data
were audio recorded then transcribed for analysis. Transcribed
interviews were entered into ATLAS.ti, a software program for
coding and retrieving narrative data.
The narratives were content coded for themes concerning
participants’ responses to their diagnosis, including feelings,
attitudes and beliefs about HIV at that time and at the present
time. The interviews were also coded for attitudes and beliefs
about medications in general and HIV medications in particular,
and for their feelings about their ability to maintain adherence
to ART. One team member coded the interviews and a second
member verified the coded themes.
In response to the news that they were HIV+ the participants
recounted the following illness appraisals: 1) HIV is a threat to
mortality; 2) nonacceptance of the HIV diagnosis; 3) HIV is
associated with stigma and rejection; and, 4) the HIV diagnosis
meant bet r ay al by a car e d fo r ot he r . T he se 4 a p pra i sal s we r e n ot
mutually exclusive. Six of the 20 participants expressed 2 of
these appraisals .
HIV is a Threat to Mortality
This was the most common illness appraisal despite the fact
that the effectiveness of current antiretroviral medications has
led to HIV being more commonly viewed as a chronic illness.
Half of the participants narrated concerns that the diagnosis
meant that they would die soon.
The first thing that came in my mind was “I'm going to die.”
I think that’s the way everybody thinks.
It is possible that some participants received their diagnosis
before a wide range of ART options was available and had
witnessed the death of many others from AIDS. However, none
of the participants with this appraisal said that now they knew
their diagnosis was not a “death sentence.” Some participants
voiced this appraisal while acknowledging that they personally
knew people who had lived with HIV for over 20 years.
Nonacceptance of HIV Diagnosis
Eight participants narrated this illness appraisal, which was
J. WRUBEL ET AL. 119
the second most common in this sample. Some participants
expressed disbelief in the diagnosis itself, others held the con-
viction that although they were positive for HIV, they were not
ill and did not require medical attention.
I really didn’t even believe it really, you know. I was like oh,
that experience like never happened, you know?
I tested positive, but I was never sick, I never went to the
doctor in all those years because I was never sick, no symp-
Several participants, viewing their disbelief of their diagnosis
in retrospect, labeled their attitude as “denial.”
I would have to say that at first I felt like in this denial proc-
ess, like, okay, I’m positive but I won’t do anything about it. I
will continue my life just like normal, like I didn’t pay attention
to it. I put it like in the back burner of my brain somehow.
One behavioral consequence for participants who did not be-
lieve or did not accept their diagnosis was the avoidance of
medical care. And even when they sought care for symptoms or
other illnesses, they were not receptive to tests or assessments
for their HIV.
The clinic I go to, they’re constantly upset with me because I
haven’t completed blood tests. I’m very irresponsible, because I
am very avoidant of medical care.
HIV is Associated with Stigma and Rejection
Participants described both an initial (upon diagnosis) and an
ongoing concern about stigma. Some participants had experi-
enced stigma directly, others indirectly.
Whether it’s HIV or you’re gay and you haven’t come out,
it’s interesting because people then feel as though they can be
honest about how they feel about gay people or how they feel
about HIV. And it’s kind of hurtful because you’re standing
there and they’re talking about you and they don’t know they’re
talking about you.
Yeah, for fear of rejection, I have told a few people but this
past year, I don’t know, I just have been unable to. So I do try
to have safe sex. However, the father of the baby doesn’t know
I’m HIV-positive. I don’t like that idea either, but he’s a pretty
violent person so I don’t know how I’m going to handle that,
but I know I have to tell him in a week or two.
The HIV Diagnosis Meant Betrayal by a Cared for Other
Stress appraisals can be generally described in terms of threat,
harm or challenge (Lazarus & Folkman, 1984). Being diag-
nosed with HIV is a harm situation since it is no longer some-
thing that might happen. For some participants, the diagnosis
involved an additional harm, that of having been betrayed by
someone they trusted.
I was with a man and I asked him point blank about the, you
know, risk of disease there, and he told me he was all good.
And we stayed together for about three weeks and then one of
his friends told me he had HIV. I tested for it, and it was terri-
Unfortunately I am virtually certain that my significant other
brought the virus into our relationship. He tested positive first.
And I thought I was in a monogamous relationship that was
The participants recounted the following medication appraisals
in their narratives: 1) negative feelings about medications in
general, 2) taking HIV medication would create an existential
crisis; 3) the benefits of taking HIV medication would not out-
weigh the costs; 4) doubts whether they could maintain adher-
ence, and 5) taking medications would be stigmatizing. As with
the illness appraisals, medication appraisals were not mutually
exclusive. All participants recounted at least one of the follow-
ing medication appraisals. Eleven participants narrated two of
Negative Feelings about Medications in General and ART
Consistent with Golub et al.’s (2006) findings, one issue with
adherence to ART is that many people find taking medication
of any kind aversive. Twelve participants in this study ex-
pressed strong negative feelings toward taking medications.
I look at pills and it makes my belly turn just looking at them,
because I just hate taking pills.
Some participants also felt that any medication should cure a
disease, not just maintain the person in a chronic condition.
Two participants expressed concern that taking pills regularly
could reawaken addictive tendencies. It is in this context of
negative beliefs and aversive feelings about taking medications
that the participants’ health care providers would have to pro-
pose starting antiretroviral therapy.
Taking HIV Medication Would Create an Existential Crisis
A common response among the participants was the concern
that taking ART meant acknowledging their seropositivity and
incorporating it into their self-view. Ten participants gave voice
to this concern. Particularly for those participants who ex-
pressed illness appraisals of threat to their mortality or of
nonacceptance of their HIV diagnosis, the prospect of taking
HIV medications threatened their self-view. Some expressed
the belief that taking ART, or even becoming informed about
the medications would make their HIV diagnosis “real.”
And I’ve been in other groups where people discuss meds but
it’s like it goes in one ear and out the other because it’s not a
reality for me yet.
Well for years I was in denial, you know, about HIV. I just
thought maybe I might be one of these people that it doesn’t
affect for a long time. And I have avoided learning about the
medication. It comes on the news, I change the channel. If it’s
in the newspaper I don’t read about it. You know, I probably
haven’t had a really functional--[Chuckles]--attitude about
Another aspect of their changed identity if they started ART
would be as a person who has an illness.
Getting to the point where I admit that I need them, that's
going to be a big challenge because I don’t want to admit that I
A further change in self-view for some participants was the
feeling that taking HIV medications would transform them into
someone who was approaching death. The following narrative
illustrates this concern as well as the emotional component of
I don’t know, for some reason I associate the meds with the
end. You know, people go on the medicines right before they die.
I don’t know why because I also know that’s not true. I know
there are people who've been taking their meds for 10, 15, 20
years and they’re doing fine and it just, it has to become part of
your daily routine. But part of me is really scared because for
J. WRUBEL ET AL.
some reason I have it associated with death and I can’t get it
out of my head. It’s scary.
The Benefits of Taking HIV Medication Would Not
Outweigh the Costs
Nine participants expressed a belief that the costs of taking
HIV medications would be greater than the benefits.
I don’t know if getting sick to stay well is altogether worth it
For some, the costs were seen in terms of medication side
There’s certain side effects that come with the medications so
they can do one thing for the virus, but then they can also affect
other things. There’s sort of a catch 22—you’re damned if you
do, damned if you don’t.
Other participants questioned the efficacy of the medications
and considered the possibility that the medications would “do
more harm than good.” These concerns included the notion that
HIV medications were “toxic.”
Would it make me healthier than I am or would it do damage
to what’s already there or would I start getting sick if I did start
taking them? Then I’d be real mad.
Concerns about the Ability to be Adherent
Another common response from the participants was the con-
cern that they personally would not be able to be adherent.
They were all aware that once on medications it would be cru-
cial to maintain adherence.
It’s like I’m there and I’m feeling these feelings and I’m not
even taking them yet. But I’m already feeling, you know,
afraid-- can I do this? And it’s just a source of anxiety for me,
you know. If I don’t do it, you know, it’s like I’m going to die
from missing doses, like I’m going to die.
I’m not a very compliant person when it comes to taking
medication and that’s what scares me. ‘Cause you have to be
compliant, I know that, and I don’t know if I can do that.
Taking Medications Would be Stigmatizing
Some participants felt that taking medications would expose
them to stigma. This is one of the sequelae of the illness ap-
praisal of HIV as stigmatizing.
I have no idea what that’s going to be like. I mean, there
might be stigma that would be challenging. I don’t know if I’d
want to be in a restaurant and have to break out a bunch of
A corollary of the view that taking HIV medications would
expose the individual to stigma is the concern that the medica-
tions would create a change in physical appearance, altering a
person’s body in a visible and negative way.
Medication is something that you have to take to stay alive,
right? That’s what I think. Unfortunately the first thing that I
think about when I think of medications would be like the dis-
tortion of the people’s appearance, and I don’t want that to
happen to me.
The goal of the current in-depth inquiry was to articulate the
meanings that HIV seropositivity and ART hold for the par-
ticipants in order to illustrate the underlying issues involved in
the decision to initiate treatment. Findings reveal that illness
appraisals of HIV disease are related to how people think and
feel about the available treatments for that condition, and ulti-
mately, perhaps, to the decisions they make regarding initiation
of ART. Specifically, it is evident in this sample of men and
women contemplating treatment that there was continuity from
some of the illness appraisals to the medication appraisals.
The illness appraisal of HIV as stigmatizing, which can in-
clude fear of stigma, experienced stigma and internalized
stigma, appeared in both the illness appraisals and medication
appraisals. This points to the personal and public health conse-
quences of stigma, and the need to address it on both an indi-
vidual counseling level and in public forums aimed at educa-
The illness appraisal of HIV as a threat to mortality was
commonly translated into a medication appraisal that the costs
of going on medication would outweigh the benefits. Partici-
pants counted as one of the costs the possible progression of the
disease and hastening of their death. Remien and colleagues
(Remien, Wagner, Dolezal, & Carballo-Dieguez) in their quali-
tative study of ART adherence found that feelings of ambiva-
lence about medications to be a common theme. Possibly a
medication appraisal of ambivalence (i.e., being aware of the
positives and the negatives of taking ART) could be common
among people who are at the decision point of whether to begin
ART, as well as those who are already on an ART regimen.
These illness and medication appraisals all represent barriers
to initiating a medication regimen and to maintaining adherence.
Artificially separating appraisals of illness from the appraisals
of treatment may neglect important factors that may be driving
decision-making about treatment and subsequent adherence and
maintenance of treatment. Indeed, the current data suggest that
medication decision-making and the related medication ap-
praisals may serve as a trigger to reactivate distressing repre-
sentations of HIV disease, including fears of death, stigma, and
rejection. In the case of people who either do not believe or do
not accept their HIV diagnosis, the prospect of initiating ART
requires them to change their self view and incorporate having
an illness into their identity. This challenge for people with
HIV has been described in other research (e.g., (Baumgartner,
2007; Lewis, 1999).
Decisions regarding the initiation of ART are shaped by a
context of meanings. It is important that formal health care
providers attend to the dynamic interplay of illness and treat-
ment appraisals. People with HIV may hold negative appraisals
of their HIV seropositivity, and/or HIV medications that acti-
vate negative feelings and increase distress at the prospect of
beginning with ART. By contrast, some people with HIV ap-
praise their serostatus less negatively, for example, they view it
as a treatable chronic illness (J. Moskowitz, Wrubel, Hult,
Maurer, & Stephens, 2006). This appraisal could be associated
with more positive medication appraisals, for example, as life
saving. Understanding how these processes inter-relate can help
to address appraisal related barriers to HIV management and
thus facilitate the successful initiation, adherence, and mainte-
nance of life-saving therapies for those living with HIV. HIV
service providers need to take individual differences in illness
appraisals into account in helping new clients to cope with their
diagnosis, manage their healthcare, collaborate in decision-
making about treatment, and prevent future complications from
J. WRUBEL ET AL. 121
This study is limited by the small sample interviewed. The
participants were interviewed only once, so there is no informa-
tion about their subsequent treatment choices, or about their
ability to maintain adherence if they chose to begin an ART
regimen. Further, the sample is select, in that some participants
have already delayed initiating ART for months or even years.
Thus, those who volunteered for the study may not express
views that are representative of others considering treatment
options. We need to compare these participants’ illness and
medication appraisals with those of people who begin ART as
soon as it is medically indicated in order to clarify further how
to identify effec tive interventions.
This study was funded by grants ID-SF-082 from the Cali-
fornia Universitywide AIDS Research Program and K08MH
01995 and K24MH087220 from the National Institutes of
Health. We would also like to thank the men and women who
participated in the research.
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