Social Science & Medicine 51 (2000) 1543±1554

www.elsevier.com/locate/socscimed

Perceiving bene®ts in adversity: stress-related growth in

women living with HIV/AIDS
Karolynn Siegel a,*, Eric W. Schrimshaw a, b
a
Center for the Psychosocial Study of Health & Illness, Joseph L. Mailman School of Public Health, Columbia University,
100 Haven Avenue Suite 6A, New York, NY 10032, USA
b
Doctoral Program in Psychology, The City University of New York-Graduate School and University Center, 365 Fifth Avenue,
New York, NY 10016, USA

Abstract

This study examines perceptions of illness-related positive of change or stress-related growth among a sample of
African American, Puerto Rican, and non-Hispanic White women (n = 54) living with HIV/AIDS in New York
City, USA. While these women acknowledged the negative stresses of living with HIV/AIDS, 83% reported at least
one positive change in their lives that they attributed to their illness experience. A number of di€erent domains of
potential growth were identi®ed including: health behaviors, spirituality, interpersonal relationships, view of the self,
value of life, and career goals. While growth was reported by nearly all the women, some variation was found in the
forms of growth reported in relation to the women's ethnic/racial background, class, and IV drug use history. These
data suggest an expanded conceptualization of stress-related growth that includes behavioral aspects of growth in
response to stress and illness, and which takes into account the diverse ways in which growth may be
experienced. 7 2000 Elsevier Science Ltd. All rights reserved.

Keywords: Stress-related growth; Coping; HIV/AIDS; Women; New York City

Psychological research on stress reactions has been
dominated by an almost exclusive focus on pathologi-
cal outcomes. While the negative impact of stress can
indeed be profound, this largely one-sided focus has
resulted in the relative neglect of other potentially posi-
tive stress-related outcomes. Recognizing this problem,
investigators have recently called for a fundamental
paradigm shift in mental health Ð a ``widening of the
focus of the lens'' so that both positive and negative
* Corresponding author. Tel: +1-212-304-5578; fax: 1-212-
304-7268.
E-mail address: ks420@columbia.edu (K. Siegel).
consequences are investigated (Tedeschi & Calhoun,
1998, p. 235). They have emphasized the importance of
understanding the competencies, personal or spiritual
growth, and other positive changes that can result
from individuals' confrontation with signi®cant adver-
sity (Holahan & Moos, 1990; O'Leary & Ickovics,
1995). While interest in possible positive outcomes of
experiencing a stressful life event is not entirely new
(Antonovsky, 1979; Dohrenwend, 1978; Finkel, 1975;
Kobasa, 1979), this issue has recently received renewed
attention including several recent books, special jour-
nal issues, and symposia (e.g., Ickovics & Park, 1998;
Tedeschi & Calhoun, 1995; Tedeschi, Park & Calhoun,
1998).

0277-9536/00/$ - see front matter 7 2000 Elsevier Science Ltd. All rights reserved.
PII: S 0 2 7 7 - 9 5 3 6 ( 0 0 ) 0 0 1 4 4 - 1
1544 K. Siegel, E.W. Schrimshaw / Social Science & Medicine 51 (2000) 1543±1554
Investigators in this area of research have used
di€erent terms to describe the phenomenon of positive
changes attributed to stressful experiences. These have
included ``stress-related growth,'' ``thriving,'' ``transfor-
mational coping,'' and ``posttraumatic growth''
(A‚eck & Tennen, 1996; Aldwin, 1994; Holahan,
Moos & Schaefer, 1996; O'Leary & Ickovics, 1995;
Park, Cohen & Murch, 1996; Tedeschi & Calhoun,
1995; see Carver, 1998 for review). While the conceptu-
alizations of these terms may di€er somewhat, they
share the notion that growth is the process of attaining
and maintaining one or more perceived positive out-
comes that are attributed to or occur in response to a
severe stress experience.
The investigation of stress-related growth has been
proposed as an extension or broadening of earlier
work on resiliency or adaptation to stress. Research on
resilience, much of which focused on children (Gar-
menzy, 1996; Murphy, 1976; Rutter, 1987; Werner &
Smith, 1992; Wolin & Wolin, 1993), was important in
calling attention to ``protective factors'' (e.g., a reliable
caring relationship with an adult) that increased the
chances for psychologically rebounding from stress
and trauma and escaping subsequent adult psycho-
pathology. Research on adults in stressful life situ-
ations has similarly emphasized the importance of the
social and personal resources (e.g., self-esteem, opti-
mism, mastery, social support) that individuals bring
to stressful situations that can serve as stress modera-
tors (e.g., Cohen & Wills, 1985; Scheier & Carver,
1985; Schiano & Revenson, 1992). While this work
has been bene®cial in understanding the adjustment to
stressful life events, the focus has been on the personal
and social (antecedent) resources that serve as stress
mediators, rather than on the positive life changes that
may result from the confrontation with signi®cant
stress.
A variety of forms of stress-related growth outcomes
have been proposed based on research on a number of
di€erent populations including holocaust survivors,
combat veterans, rape victims, bereaved individuals
and patients with serious or life-threatening illnesses
(A‚eck, Tennen, Croog & Levine, 1987; Burt & Katz,
1987; Collins, Taylor & Skokan, 1990; Lehman et al.,
1993; Lifton, 1980; Thompson, 1985; Wortman & Sil-
ver, 1989). These forms of stress-related growth have
been classi®ed into three broad categories, including
perceived changes in the self, a changed sense of re-
lationships with others, and a changed philosophy of
life (Tedeschi & Calhoun, 1995).
Recently, a number of studies have begun to report
stress-related growth in individuals living with HIV/
AIDS. Schwartzberg (1993) found that 74% of the 19
gay men with HIV/AIDS he interviewed believed that
HIV had been a catalyst for growth in their lives. The
positive changes these men reported included: a greater
connection to the gay community, friends, and family;
self-actualization; greater goal directedness; re-prioriti-
zation of time commitments, and a spiritual and reli-
gious awakening. Other kinds of growth were
becoming active in volunteering, political activities,
and changes to more ful®lling jobs (Schwartzberg,
1993). In other HIV-related research on gay men,
growth was identi®ed as gaining knowledge, giving
back to others, and greater aesthetic appreciation or
involvement (Schaefer & Coleman, 1992), and
improved health care behaviors such as improvements
in diet, smoking, stress reduction, sleep, and seeking
better health care (Gloerson, Kendall, Gray, McCon-
nell, Turner & Lewkowicz, 1993). However, it is im-
portant to note that in these studies virtually all of the
participants have been White (non-Hispanic), middle-
class educated gay men, thus the generalizability of
these ®ndings to other populations may be proble-
matic.
The systematic assessment of such stress-related
growth is still a relatively new development and its ap-
plication to date, including its application to HIV/
AIDS, has been primarily limited to educated, middle
class White men or college students with few studies
including women or ethnic minorities (see Abraõdo-
Lanza, Guier & ColoÂn, 1998 as an exception). Thus,
there is still a pressing need for good descriptive stu-
dies in diverse populations to ensure that the phenom-
enon is not culture bound and to examine how it may
vary in di€erent social groups (Blankenship, 1998).
Massey, Cameron, Ouellette and Fine (1998) have
emphasized the important contribution that qualitative
research can make in this area. They argue that
because in quantitative research, investigators often
decide beforehand how stress-related growth or thriv-
ing will be operationalized, they may prematurely
narrow ``the conceptual boundaries of how we think
thriving will be exhibited'' (p. 339) potentially foreclos-
ing the opportunity to ``hear'' and identify other ways
individuals may experience growth. This danger may
be particularly pronounced with respect to the study of
socioeconomically disadvantaged minority populations
where stress-related growth may need to be de®ned in
a way that is relevant to the contexts in which these in-
dividuals ®nd themselves, and the resources available
to them, rather than in the prevailing terms which may
be more relevant to more advantaged social groups
(Massey et al., 1998; Blankenship, 1998).
The purpose of the present paper is to describe the
various forms of positive change or stress-related
growth reported by a sample of primarily disadvan-
taged African American, Puerto Rican, and (non-His-
panic) White women living with HIV/AIDS at various
stages of disease progression. Women living with HIV/
AIDS are an informative group in which to examine
stress-related growth because they di€er so substan-
 K. Siegel, E.W. Schrimshaw / Social Science & Medicine 51 (2000) 1543±1554
tially (in gender, race/ethnicity, and social class) from
the samples investigated in past growth research and
thus may experience forms of stress-related growth
di€erent from that identi®ed in previous investigations.
Particular attention will be made to ethnicity, class,
and drug use histories for their potential impact on the
presence and forms of stress-related growth.
Method
Sample recruitment
The present study utilized interview data from a sub-
sample (n = 54) of women who participated in a study
of HIV-infected Puerto Rican, African American, and
non-Hispanic White women's adaptation to living with
HIV/AIDS as a chronic illness (N = 146). Participants
were recruited through advertisements, ¯yers, and com-
munity outreach to health, social and advocacy organ-
izations that serve HIV-infected individuals in New
York City. E€orts were made to recruit White, African
American, and Puerto Rican women from similar
sources to avoid selection bias. In order to preserve
con®dentiality, individuals interested in participating in
the research or wanting further information about the
study were directed to self-refer by calling a phone
number at the study's research oces.
Potential participants were screened over the phone
to determine their eligibility. Women were eligible for
accrual into the study if they: (1) had tested seroposi-
tive for HIV antibodies or diagnosed with AIDS; (2)
resided in the New York City metropolitan region; (3)
were 20±45 years of age; (4) if Latina, were Puerto
Rican (of any race) and had resided on the mainland
for at least four years, or if African American or
White, were native born and non-Hispanic; (5) had
completed eighth grade; and (6) had not injected drugs
in the past six months.
The focus on women was selected because the psy-
chosocial issues they infected confront in living with
the disease di€er in many ways di€er from those con-
fronted by infected men, given the socioeconomic, gen-
der role, and health behavior di€erences that
characterize these two groups. A parallel study of
HIV-infected gay and bisexual men, employing the
same design and methodology, had been carried out
prior to the women's study. Those data are not
included in this report because the signi®cant historical
changes that had occurred between the two data col-
lection periods in the treatment and care of infected in-
dividuals, as well as the signi®cant socioeconomic
disparities between the two samples, would confound
any attempt to identify gender-related di€erences.
Eligibility was restricted to women aged 20±45 in an
e€ort to limit the heterogeneity of the sample with
1545
respect to age and developmental issues, given the rela-
tively small sample size. In fact, this age criteria
excluded few women, as 85% of women living with
HIV/AIDS in New York City at that time fell within
this age group. Latina women were restricted to Puerto
Rican women, and African American and White
women were restricted to native-born in order to main-
tain some level of cultural homogeneity within each
ethnic/cultural group. Women who reported drug use
within the past six months were excluded because
recent use of these drugs may have a€ected their abil-
ity to provide adequate and reliable information, and
may have a number of drug-related stresses unrelated
to the experience of living with HIV/AIDS.
Quota sampling was used to obtain accrual of ap-
proximately equal numbers of African American (n =
48), White (n = 48), and Puerto Rican (n = 50)
women. E€orts were made to obtain an equal pro-
portion of participants at each disease stage (asympto-
matic, symptomatic, AIDS) within each ethnic/racial
group. Additionally, e€orts were made to include
women with and without children, with and without
partners, with and without histories of drug use, and
with varying lengths of time since learning of her HIV-
infection, as these characteristics were felt to poten-
tially impact women's psychosocial adjustment to
HIV/AIDS. This sampling method is consistent with
the ``representative case sampling'' strategy described
by Shontz (1965). While not a random sample, it is im-
portant that is it not a convenience sample. Rather, it
is a systematic strategy to obtain a sample with su-
cient diversity on key characteristics potentially related
to the phenomenon of interest. This sampling strategy
has been widely used in the authors' past research and
is particularly suited for achieving a diverse represen-
tation of the population within a small sample.
Procedure
Study participants met three times with a female
clinical interviewer, typically within a one month
period. Each interview session lasted approximately
two hours. At the ®rst meeting informed consent was
obtained, the women provided demographic and medi-
cal history data, and completed a self-administered
questionnaire containing a number of standardized
mental health and psychosocial measures. At the two
subsequent meetings, participants engaged in semi-
structured interviews about various aspects of living
with HIV. Women were asked at the time of telephone
screening if they preferred to speak with an interviewer
of the same race/ethnicity of if they had no preference.
Ethnically matched interviewers were provided for all
women who expressed interest, and otherwise were
matched as schedules permitted. Puerto Rican women
were given the choice of completing the questionnaire
1546 K. Siegel, E.W. Schrimshaw / Social Science & Medicine 51 (2000) 1543±1554
and/or the interview in Spanish or English. Partici-
pants received a US$ 25 honorarium and were reim-
bursed for travel (and when necessary babysitting
expenses) at each meeting. Interviews were conducted
between Fall 1994 and Fall 1996.
Interviews were conducted based on Merton, Fiske
and Kendall's (1956) conceptualization of focused indi-
vidual interviews. Interviews employed an interview
guide or outline of topic areas which was developed by
the investigators based on a review of the literature on
psychosocial adaptation to AIDS or other life-threa-
tening and chronic illnesses and their own previous
research. The guide was not used as a formal interview
schedule, but rather served as a ``conceptual roadmap''
that provided the interviewer with topics of interest.
Interviewers were trained to cover all of the topics
within the two interview sessions, but were encouraged
to follow the participants' leads and use their com-
ments as a bridge from one topic area to another.
Although stress-related growth or positive changes
brought about by the illness was not a focus of the
research, there were several topic areas within the
interview guide that required women to be asked
about changes in their lives since their illness. Ques-
tions regarding these changes were deliberately written
neutrally so they did not display the assumption that
such changes had occurred and did not lead toward
either a positive or negative account of change when it
did occur. Following a general question regarding
changes due to HIV/AIDS, speci®c changes in beha-
vior, relationships, spirituality, goals, and how the par-
ticipant was a ``di€erent person'' than before her
infection, were explored within each interview. Finally,
after a neutral coverage of these potential changes,
women were asked a speci®c question regarding any
positive changes that may have resulted.
Data analysis
All interviews were audiotaped with the participants'
permission, and transcribed verbatim for thematic
analysis. Transcripts ranged in length between 100 and
200 single spaced pages. The investigators indepen-
dently read a randomly selected subsample of tran-
scripts to identify the kinds of positive changes the
women attributed to HIV/AIDS. From this initial
reading, codes for positive change were created,
extended and re®ned. The decision was made to code
as illness-related growth only those changes which the
women perceived as positive changes and they them-
selves clearly attributed to their illness.
An independent random subsample of transcripts
was then selected, read and thematically coded for the
presence of each form of positive change. This sub-
sample was selected by stratifying the larger sample by
race/ethnicity and then randomly sampling within each
racial/ethnic group, selecting three cases Ð one per
group Ð at a time. To ensure the completeness of the
coding, in addition to reading the full interviews, a
computer software program was used to identify any
places in the interview where positive change may have
been referred to outside the context of the speci®c
questions asked. This was accomplished by searching
the text for keys words like ``positive,'' ``good,'' ``ben-
e®t,'' ``change,'' ``growth,'' ``improve,'' and ``better.''
In addition to examining the forms of growth rep-
resented within the interviews, particular attention was
also paid to potential variations in the presence and
forms of growth as they were impacted by ethnicity,
class, and drug use history, as well as other demo-
graphic factors. Analysis was halted after 54 interviews
when ``saturation'' was achieved and additional inter-
views yielded only positive changes already fully elabo-
rated by earlier interviews. This resulted in a ®nal
sample of 18 African American, 17 Puerto Rican, and
19 non-Hispanic White women. Chi-square tests
revealed that this subsample was very similar to the
full sample of 146 women. Only one signi®cant di€er-
ence was detected, with the present subsample having
a somewhat higher percentage of AIDS cases (56%)
than those not included (34%), w 2 (N = 146, 2)=6.82,
p = 0.03.
Results
Sample characteristics
Of the 54 women included in the analysis, 21% were
asymptomatic, 23% were symptomatic, and 56% had
AIDS according to current CDC criteria (Centers for
Disease Control and Prevention, 1992). The women
ranged in age from 25 to 44 years (mean age=35.9
years, SD=5.1). A balanced sample of 34% African
American, 32% Puerto Rican, and 34% non-Hispanic
White women was obtained. The women's educational
attainment was relatively low, with 36% reporting less
than high school education, 30% having a high school
degree, and 34% having some college, or an associates
degree. Household income was generally low, exceed-
ing US$ 20,000 in only 17% of the cases. Twenty-six
percent of the women reported working at least part
time. The majority were single (49%), or divorced,
widowed or separated (38%), with only 13% currently
married. Two-thirds (66%) of the women were
mothers. Many women lived alone (38%), but 26%
lived with a partner and 49% lived with their children.
All (100%) of the Puerto Rican women scored as
highly acculturated as assessed by the Marin Accul-
turation Scale for Hispanics (Marin, Sabogal, Marin,
Otero-Sabogal & Perez-Stable, 1987). Fifty-®ve percent
of the women reported past IV drug use. The average
 K. Siegel, E.W. Schrimshaw / Social Science & Medicine 51 (2000) 1543±1554
length of time since learning of HIV-infection was over
4 years (M = 50.7 months, SD=25.3).
Prevalence of stress-related growth
A surprisingly high number of women reported that
HIV/AIDS had changed their lives in some positive
way. Qualitative coding of the interview transcripts
revealed that over 83% of the women reported at least
one positive change they attributed to HIV/AIDS with
most reporting multiple positive changes. Because the
interviewers speci®cally questioned women about po-
tential positive outcomes, this may be a reliable esti-
mate of stress-related growth for this sample.
However, due to the qualitative nature of the data and
the targeted sampling methods it should not be
assumed this prevalence can be generalized to the
population of HIV-infected women. Still, the data do
suggest that the phenomenon of stress-related growth
may be a prevalent one among these women.
An exploration of the variability in stress-related
growth among various subgroups within the sample
revealed some observable di€erences, however, none
were statistically signi®cant. Growth was reported by
83% of the African Americans, 94% of the Puerto
Ricans, and 78% of the White participants. Reports of
positive change were o€ered by 82% of those with
asymptomatic HIV, by 75% of those with sympto-
matic HIV, and 90% of those with AIDS. Growth was
reported by 84% of those with less than a high school
education, 94% of high school graduates, and 78% of
those with some college education. Growth was
reported by 90% of the women with histories of IV
drug use, and 79% of women with no history of drug
use. While no statistical di€erences were found for the
reporting of growth in general, some forms of growth
were more prevalent in some groups than others.
These di€erences are explored below as they relate to
each form of growth discussed.
Varieties of stress-related growth
A number of di€erent forms of positive change or
stress-related growth were identi®ed in response to
questions about how their lives had changed since
their diagnosis. Without denying the tragedy or adver-
sity in their situation, most were able to perceive some
positive or constructive change in their lives that had
emerged from their illness experience. While clearly
there remained many negative aspects of HIV-infection
for these women, these changes allowed for the illness
to have a ``silver lining'' or be a ``mixed blessing.''
Below the forms of stress-related growth reported by
these women are discussed.
1547
Positive behavioral changes
One of the most prevalent forms of positive change
reported by the women was that HIV/AIDS had
served as a motivating factor for them to make
changes in their behaviors, especially health-related
behaviors. Many reported that HIV/AIDS had been
the ``wake-up call'' they needed to activate them to
change long standing problematic behaviors including
drug and alcohol abuse, smoking, and risky sexual
behaviors. Some who had repeatedly tried unsuccess-
fully to give up their drug use earlier, said that their
HIV diagnosis was the motivation they needed to ``get
clean and stay clean.'' For example one White woman
living with AIDS who had an extensive drug use his-
tory reported:
For the most part, I attribute getting clean to hav-
ing HIV. I still think about getting high. But once I
think that, the next sentence is you're HIV positive.
You know, so its like a motivation to you know
just keep on Ð you know on the right track. I'm
not saying you know, I know for sure that I'll con-
tinue. But I mean it has for like ®ve and a half
years. Ah, you know, I'm not saying I love my HIV
status. But I don't think that if, if I wasn't HIV,
that I would have gotten clean.
Another woman, a Puerto Rican woman with
AIDS, also suggested the disease was the main motiva-
tional factor that helped her to quit her drug use:
I've always said that Ð although its not something
you know, that you'd wish for, becoming HIV is
ah, I think the major, the major part in why I
stopped using [drugs], because I don't know if I
would have stopped if I hadn't become positive.
. . .knowing my status anyway has ah, had de®nitely
made me, you know, want to stop using drugs and
stay o€ drugs because I know that can become the
number one hazard to your health because you
break down your immune system when you use
drugs. And that is already happening when you
have HIV. So I know that Ð it's to me, I've always
said it's like a mixed blessing, you know. Because
had I not been positive, or had I not known, I may
still be using today.
Women also reported making a number of other
changes in their health behaviors including reducing
their use of alcohol, ceasing participation in unsafe
sex, changing to a healthier diet, and becoming more
conscientiousness about their health. For example, one
woman of Puerto Rican heritage and living with AIDS
reported health behavior changes which she felt had
been very positive for her:
1548 K. Siegel, E.W. Schrimshaw / Social Science & Medicine 51 (2000) 1543±1554
My eating habits are di€erent now. I'm eating, I'm
eating healthier now because before I used to eat a
lot of junk food. A lot of outside junk food, maybe
pizza, burgers, and stu€ like that. But I watch what
I eat, watch what I drink. I stopped drugs and alco-
hol. I'm learning to reduce my stress. Ah and let's
just say I've changed a lot of things that would
naturally make someone else be real sick. . . . It
[HIV/AIDS] taught me to, like I said eat better.
Learn to take my health seriously.
While changes in health behaviors motivated by
HIV infection was present for many women, the most
profound changes were reported by women who had
histories of drug use (including all those quoted here).
Religious/spiritual growth
Another prevalent kind of AIDS-related positive
change reported was greater spiritual or religious faith.
For many women, the diagnosis of HIV/AIDS motiv-
ated them to return to their long neglected religious
roots in an e€ort to ®nd meaning in the illness experi-
ence or obtain spiritual support for coping with their
illness. Others, who had been somewhat religious prior
to learning of their infection, believed that their diag-
nosis had led to a deepening or intensi®cation of their
faith. In renewing their faith, some appeared also to be
seeking forgiveness for earlier behaviors, hoping that
by growing closer to God, they would ®nd a sense of
peace and a change at redemption. For example, one
African American woman with AIDS reported that
HIV has greatly impacted her spiritual world:
When I found out I had HIV, that made it [her reli-
giosity] more intense, wanting to know how to get
closer to my creator or make amends with my crea-
tor for the life that I've lived. And ah, my faith has
grown tremendously. My life has changed di€er-
ently. More di€erent than it has been. And I'm
more at peace with myself so I guess the mercy of
Him has shined upon me. So the change Ð a great
deal Ð whereas I pray when I wake up, pray when
I go to bed, pray for meals. Pray thanks for this
and thanks for that. Not a second thought. I
wouldn't do it before. I do it now.
This religious or spiritual growth often came about
only after a period during which the diagnosis of HIV/
AIDS had led them to question their faith. For
example, when asked about possible religious or spiri-
tual changes as a result of HIV, one White woman
with AIDS told us about the emotional journey that
ultimately led her back to her religious roots:
Well, ®rst I went through this anger thing. God
wasn't on my side, and God didn't care about me,
and why should I pray to him anymore? He could
have saved me from getting this [HIV]. And then
what happened was I realized that if I don't turn to
God, if I don't have some kind of hope and some
kind of faith, then what do I have left to hold
onto? So I ran back to [the church], and what hap-
pened was I got deeper into my faith. And I'm
more spiritual and connected because after I
accepted that I had AIDS, what happened was
everything in life that I thought was important
became so unimportant. So AIDS, really, its kind
of like a gift, in a weird kind of way, because it
really made me understand and realize a lot of
things about life that maybe I wouldn't have seen
so quickly.
This spiritual or religious growth triggered by HIV/
AIDS was universally viewed as both a positive change
in their lives and as a particularly e€ective resource for
coping with the negative aspects of their illness. Con-
sistent with some past research which suggests that
African Americans rely heavily on their spiritual faith
in coping with signi®cant life stressors (Bourjolly,
1998), African American and Puerto Rican women
were particularly strong in their reports of religious
growth and reliance on their spiritual faith. However,
White women also frequently reported that HIV/AIDS
had lead to a strengthening of their religious beliefs as
well (as evidenced by the above quote).
Growth in relationships
While some women experienced signi®cant rejection,
stigmatization and isolation after disclosing their HIV
status, a large proportion felt that over time their re-
lationships with their children, family, and friends had
become closer due to HIV/AIDS. Some reported that
their illness had been a catalyst for resolving past
di€erences with family and friends and using their
remaining time together to express and arm their
love for one another. For example, one Puerto Rican
woman with AIDS who had known of her infection
for less than a year, saw improvement in her relation-
ship with her young daughter:
It's changed Ð its good times. Not arguing. Good
times, ya know? Saying I love her like twelve times
a day. Just like she's now my best friend. She's thir-
teen, so it's kind of hard, but it's a good relation-
ship and it's ± I don't know, it's excellent. We're
together a lot. We do a lot of things together. She's
the best daughter there is. We don't argue. We try
to take life a lot easier. She doesn't know I'm HIV
positive, so she doesn't know why, but she thinks
that I'm that best and that my life has changed. I
 K. Siegel, E.W. Schrimshaw / Social Science & Medicine 51 (2000) 1543±1554
can sit down with her and read a book, or like
helping her with her homework. And it's like it's
di€erent. Life is di€erent now. I hate to say that,
but it's like HIV's been rewarding.
Other relationships, such as those with friends and
lovers, were also felt by the women to have grown
since their diagnosis. For some this was due to a
increase in concern for one another's well-being, as
well as the compassion and support provided by
others. For example a Puerto Rican woman with
symptomatic HIV, when asked about changes in her
relationships due to HIV, told us:
As far as my lover, I think its made my relationship
stronger, you know, because we worry about each
other, even though they're negative and I'm
positive . . . . Ah, but my friends Ð we've been, my
friends and I have become a lot closer also. You
know, 'cause ah, not only with the friends that are
positive but the friends that are not positive. We've
also become closer, you know. We make sure we
stay in touch. That ah, if one of us gets sick and
calls the other one, and if one of us winds up in the
hospital, well let me call this one and you call that
one. We'll meet at the hospital and we'll go give
them some support. You know, it's become a bigger
circle, you know. And I have more family in a circle
of friends than in my own family, so you know, its
really Ð the bond has become a lot stronger.
For others, not only were relationships viewed as
closer, but a greater appreciation and importance was
placed on these relationships. For example, a Puerto
Rican women living with AIDS, explained that her re-
lationships with her sister had become particularly
close:
I've gotten Ð although my siblings and myself,
we've always been close. So ah, we've always been
close, but we've gotten closer. I have become more
open with them as far as life in general, and things
that didn't mean that much to me before, now they
do. For instance, my sister, invited me to dinner.
And that's not like a big deal, but it was to me.
That I was able to spend time with her and her
granddaughter. And have fun, memorable moments
you know. We went out and ate. I mean this is
something that you know, it may not have meant
very much before. But now, its like every moment
is so precious? And I treasure it now.
While years of con¯ict and dysfunctional relations
may not be instantly resolved and supplanted with clo-
ser relationships following an HIV diagnosis, many
women did report that due to the renewed importance
1549
of their relationships with family and friends following
their diagnosis, they were able to put aside past di€er-
ences. This was suggested by one White woman living
with AIDS who explained:
My relationship with my mother, I think, has
grown a lot closer. I think we both see that neither
one of us, or both of us, or whatever, we really
don't have a lot of time together. She's 80 years
old. And I have AIDS. And so we make the most
of our times together. And we've a lot of past
wounds and scars, and problems that we used to
have, kind of have put them aside. Or we've let
them go. Something like that. Just to be able to
have a good relationship.
Positive self changes
A number of women also reported that their HIV/
AIDS experience had changed their view of themselves
in a positive way. They reported many ways that they
felt they were a di€erent and better person because
HIV/AIDS had made them stronger, more caring, and
improved their attitude toward life. One of the most
prevalent of these changes women believed they had
experienced was to become more empathic and con-
cerned about other people's feelings, whereas before
their illness they had been solely concerned about
themselves. For example, when asked if HIV had chan-
ged her in any way, an African American women with
asymptomatic HIV told us:
I think it has Ð I think it's changed me for the
better . . . . At one point in my life, I really didn't
care who I hurt, with things that I did. You know?
I felt like uh I just has a nonchalant attitude. I
didn't care about other people's feelings. I didn't
care if I hurt their feelings.
Another White woman with AIDS reported similar
changes in this way:
I think I'm a little more ah, understanding, with
others and myself. And a little more patient. And a
try to stop and think before I speak. I don't always,
but I sort of try to make sure I do do that more
now. And I, you know, I value life more now. I
value moments and memories, and you know, what
is good about life. Things, material things don't
mean like anything anymore. I never never before
did I ever notice the sky like I notice the sky now.
You know and the clouds. I savor a sunset when I
see a nice sunset. Or ah, you know, life is di€erent
now. You see things more clearly.
Other women expressed great satisfaction and pride
in the fact that they had become a stronger as a result
1550 K. Siegel, E.W. Schrimshaw / Social Science & Medicine 51 (2000) 1543±1554
of HIV/AIDS. Their illness had forced them to stand
up for themselves, to advocate for services, and man-
age the varied challenges of living with HIV-infection.
They saw this as a dramatic change from the depen-
dent (on men and drugs) women they had previously
been. One Puerto Rican women with AIDS explained,
when asked if she was a di€erent person as a result of
HIV, that she was now more assertive and able to
stand up for herself:
Yeah, I de®nitely think I am a stronger person
because of learning, you know, of my status. It has
made me become a little bit stronger because I need
to stand up for certain things. [Such as?] Well, es-
pecially at the point in my life when I did ®nd out I
was positive, I was using drugs. And when you use
drugs, you know, you get humiliated a lot. You
have to take a lot of abuse because you're in. And
sometimes people will talk down to you, and you
feel obligated to kind of take it and stay quiet. Not
today. No. I'm not using today and I refuse to let
someone talk down to me Ð regardless of my sta-
tus.
Other women viewed themselves as having become
more responsible. When asked about how she was a
di€erent person as a result of HIV, one White woman
with AIDS explained:
I'm much more serious. Ah, before I knew I was
HIV positive, I took everything very very lightly.
Ah, happy go lucky. Ah, if I had ten dollars, I
would spend ten dollars. You know, I never really
planned for anything. Just everything was okay.
Now, I see it to be a lot more serious than ah, even
you know, even money wise. Its just a lot more
serious and responsible. Yeah, it made me more re-
sponsible, I was very irresponsible.
Finally, a number of women also suggested that
they were no longer as focused on appearance, acquir-
ing material things, and having fun as they once had
been. Rather they had realized that there were more
important things in life. One Puerto Rican woman
with AIDS told us of how her priorities had changed:
I picture myself as long as the body is still living, it
doesn't matter how I look. As long as the body
functions, I don't care how I look. That's not im-
portant to me anymore. I mean, before I used to
always put on a lot of makeup. I used to, well, I
mean I love myself. You know? But I used to
always overdo it. I took I took my looks and my
health for granted. Now I say, as long as I can get
up in the morning, and everything is basically taken
care of, there really no need for me to put on a lot
of makeup or wear certain clothes. And I don't
have to impress anyone but me. And to me, this is
comfortable . . . I'm going for comfortability, you
know, just being comfortable.
Changes in value of life
A number of women also reported that HIV/AIDS
had completely changed the meaning and value they
placed on life. Most often this was reported as a
greater appreciation of their lives and the time they
have left. One HIV-symptomatic African American
women told us:
I think my whole outlook on life has changed
because I wanted it to change. Because I wanted to
be di€erent. Because drugs and HIV and everything
else that was going on in my life made me realize
that ah, life is precious. Time is precious. And that
we, as people, have to start realizing that and stop
wasting time. Stop wasting life because you don't
live but once. Makes you want to make the best of
that once.
In other cases, this change in value of life was
expressed as a greater appreciation for the little things
in life. One HIV asymptomatic Puerto Rican woman
reported how much more she appreciated her life and
no longer takes things for granted:
I'm becoming a better person in a lot of ways. I
don't want to say that if I could do this all over
again, that I would want this disease, but I've
grown. The smallest things that didn't mean diddly
squat to me in the past, mean something to me
now. It's amazing. Just going outside and seeing the
sun and the trees and the air. And being able to
enjoy you know, a nice day at the park, or be with
your children. Things that other people take for
granted, you know. You start, you know, I guess,
taking life in a more quality, you know, in a more
important sense. And things start meaning more to
me.
Positive goal-related changes
While some women felt that their HIV/AIDS diag-
nosis had forced them to curtail, restrict, or abandon
their educational and career goals due to the physical
limitations imposed by the disease, for an even greater
number, HIV/AIDS had given them a set new goals Ð
usually to try to help others by becoming involved in
AIDS advocacy, education or care provision. Often
this was the ®rst time the women had ever had any
form of meaningful life goals. One Puerto Rican
woman with symptomatic HIV reported:
 K. Siegel, E.W. Schrimshaw / Social Science & Medicine 51 (2000) 1543±1554
Well when I found out [her HIV status], I didn't
have any career or nothing. No goals or nothing.
You know, it's now when I have goals. I'm pre-
sently, like I said, I'm a consultant for [AIDS ser-
vice organization]. I'm an activist for HIV now.
Um, I like it. I like doing that, and I also like help-
ing people in recovery. You know, get their life
together . . . A goal of mines is to one day, um, get
my GED which I will be pursuing in September.
Hopefully work for [AIDS Organization] and be an
HIV coordinator. Then get my condo and all that.
So, my goals have changed tremendous Ð I never
had goals; I have them now.
Others suggested that while they had never before
had educational aspirations, they felt that HIV/AIDS
had focused them on this goal. Typically this was in
order to gain some form of educational background or
training that would enable them to serve the HIV/
AIDS community. For example, one African American
woman with symptomatic HIV, when asked if her
career or goals had changed due to HIV, replied:
My goals have changed because I was never anyone
interested in health or prevention. You know? So
now my direction is di€erent. Ah again, if I did go
back to school, it would be in the public health
way. And where I am going to my new job is at a
health complex in which I'll do pre- and post-test
counseling. So this is nothing that I would have
thought about before being HIV.
As noted earlier, not all women viewed HIV/AIDS
as having bene®cial e€ects on their career goals. For a
number of women, especially women who already were
working or had established careers before their diagno-
sis, HIV/AIDS was view as a setback. However, while
these more economically secure or educated working
women were often forced to discontinue their careers
due to HIV-symptoms, many felt that quitting their
jobs was a positive change in that they now had more
time to take care of themselves, relax, and avoid the
detrimental stresses inherent in their previous work-re-
lated lives. For example, one White women explained
when asked if her work life had changed since her
HIV-infection:
I used to work for lawyers, and I was studying to
be a court reporter. I had a career going. I mean I
always enjoyed that type of work, but I don't really
have the time for it. I don't want to put that much
time into a career no more. I don't know how
much time I have left with my daughter. If I have
had this almost six years, how much time is left?
Another ®ve? I don't want to waste it, working
eight hours a day. Because I want to be with her
1551
right now. You know, so it changed my, my goal,
my career goals a lot.
Discussion
These results provide additional evidence for the
existence of the potential for individuals to experience
a sense that positive changes or growth has resulted
from the stress of living with HIV/AIDS. While vir-
tually all the women experienced and acknowledged
negative sequelae of HIV/AIDS including stigma, dis-
ability, and psychological distress, most had come to
believe that the illness had also contributed something
positive to their lives as well. Thus, they did not have
to deny the adversity in their situation to perceive posi-
tive consequences. Indeed it was often the need to cope
with these negative consequences that provided the
opportunity for them to experience positive change.
The perception of bene®ts or positive changes associ-
ated with the illness experience frequently emerged as
part of a temporal process of coming to terms with the
diagnosis and its rami®cations that followed the initial
crisis of diagnosis and early diculties in accommodat-
ing to illness and treatment-elated demands.
Tennen and A‚eck (1999) have noted that there are
a number of ways to understand reports of ``bene®t-
®nding'' in the face of adversity. One is that these
reports are accurate accounts of real change. Certainly
most of the women appeared to believe the change was
very real. Another, more common, construal of ben-
e®t-®nding is that it represents an emotion-focused
coping strategy that allows one to ®nd positive mean-
ing in a stressful situation and thus reappraise their
plight more favorably (e.g., Folkman, 1997, Aldwin,
1994). Tennen and A‚eck (1999) for example, explain
that bene®t ®nding helps the individual to reinstate
valued beliefs ``about themselves as worthy and rela-
tively invulnerable and their world as orderly, predict-
able, meaningful and benevolent or at least benign'' (p.
292). Similarly, Folkman (1997) found that among the
caregiving partners of men with AIDS a variety of
coping strategies with a common theme Ð searching
for and ®nding positive meaning in the experience Ð
were associated with experiencing positive mental
states (co-existing with negatives ones) during caregiv-
ing and bereavement.
Certainly in the absence of corroborating reports
(e.g., from signi®cant others) that positive change has
occurred, it is conceivable that many of the women
were trying to ``®nd a silver lining'' so that they would
feel less victimized by the situation. Reports that deal
with the kinds of changes that are largely subjective
and not readily observable Ð e.g. feeling closer to
people, feeling more con®dent about one's ability to
1552 K. Siegel, E.W. Schrimshaw / Social Science & Medicine 51 (2000) 1543±1554
handle problems Ð are obviously dicult to corrobo-
rate or dispute. Whereas reports of no longer using
drugs or alcohol and eating a healthy diet are poten-
tially observable changes of objective behaviors.
Unfortunately, without triangulation or more objective
assessments of change the degree to which these
changes are objective or perceived is dicult to deter-
mine. Yet whether perceived changes are merely cogni-
tive reappraisals or real changes, they all may have the
same adaptive value.
Another way of explaining bene®t-®nding is as a
personality characteristic (Park et al., 1996; Park,
1998; Tennen & A‚eck, 1998). That is the tendency to
be able to ®nd a silver lining in a stressful situation
may be a re¯ection of an underlying trait like disposi-
tional optimism. The high proportion of women who
perceived something positive coming out of their
adversity, coupled with the similar ®nding reported by
Schwartzberg (1993) for HIV-infected gay men,
suggests that bene®t ®nding may be a common
phenomenon among infected adults. Similarly, in other
reports of individuals facing serious medical problems
a majority of participants cited bene®ts from their situ-
ation (A‚eck, Pfei€er, Tennen & Fi®eld, 1988; Taylor,
Lichtman & Wood, 1984; Thompson, 1991). However,
the high prevalence commonly found would argue
against the notion that being able to ®nd bene®t in
adversity is a re¯ection of an underlying personality
characteristic, unless such a characteristic was so
prevalent as to almost be useless as a predictor of posi-
tive change.
Stress-related growth manifested itself in di€erent
forms including: health behavior changes, spiritual
changes, changes in relationships, changes in view of
the self, changes in value of life, and changes in goals.
Many of the forms of growth observed within this
multi-ethnic sample of women with HIV/AIDS were
quite similar to those previously outlined in the two
major theories of growth (Schaefer & Moos, 1992;
Tedeschi & Calhoun, 1995). However, one change not
accounted for by the current conceptualizations of
growth outcomes is the often dramatic changes in
health behaviors these women experienced. A large
proportion of the women reported that HIV/AIDS
had motivated changes in health behaviors, such as
quitting drugs, alcohol, and smoking, eating better,
and engaging in safer sexual behaviors. Women fre-
quently perceived these to be the most positive changes
to come out of their illness experience. While coping
behaviors have been incorporated into Schaefer and
Moos' (1992) conceptualization of growth, there has
been little focus on health behavior changes resulting
from stress. These data suggest an expansion of how
stress-related growth is measured and conceptualized
to include these dramatic behavioral changes.
The ®nding of a high level of stress-related growth
in women living with HIV/AIDS has important impli-
cations. For example, the ®ndings suggest that the
stress-related growth is generalizable to populations
other than the primarily educated White middle-class
samples previously examined. While some have raised
the concern that this optimistic view of severe stress
and illness might be characteristic of only an educated
elite (Blankenship, 1998), these ®ndings support that
stress-related growth exists in women with lower
incomes and education, and from diverse ethnic back-
grounds. Moreover, no di€erences were noted in the
prevalence of growth between various demographic
groups including race/ethnicity, education, or drug use
history. However, while stress-related growth in gen-
eral was noted evenly throughout the sample, several
important di€erences were noted as to what forms of
growth were reported. Women with histories of drug
use comprised many of the reports of positive changes
in health behaviors, African American and Puerto
Rican women were more likely to report spiritual
changes, and educated working women more often
reporting negative career changes. These di€erences
may provide important contextual insights as to for
whom and in what form growth may take place.
It is also interesting to note also that many of the
women, especially those who had a history of drug
abuse, actually experienced improved living conditions
as a result of their diagnosis. This was, in part, a result
of the entitlements they now received due to their dis-
ability. For example, for the ®rst time in many years
some had stable housing situation, a regular source of
health care, and a supportive network of social service
and health professionals. Many also participated in
support groups where they found emotional support,
armation of their worth, and practical advice for
coping with many illness-related stressors. Thus, many
women were a€orded structural supports that might
have made it possible to realize positive change in var-
ious domains of their life. While these changes in
access to resources is clearly not in keeping with the
concept of stress-related growth, the presence of these
resources may be one factor that facilitated the high
levels of stress-related growth in this sample.
While some women did feel that their illness trans-
formed their life in very profound ways, many others
reported more modest forms of positive change and
growth such as placing a greater value of health,
improving their diets, or making new friendships (e.g.,
in their support group). Rather than ``blaming the vic-
tim'' (Ryan, 1971) by labeling these women who only
experience modest positive changes as non-thriving or
not achieving stress-related growth, perhaps there
needs to be an expansion of our de®nitions, under-
standing, and assessment of what is meant by stress-re-
lated growth. For many, these more modest changes
were also growth. This may be especially important to
 K. Siegel, E.W. Schrimshaw / Social Science & Medicine 51 (2000) 1543±1554
consider in populations facing multiple burdens (e.g.,
poverty, racism, sexism), in which any positive change
or growth, however modest, may be impressive under
the circumstances.
Another insight gained by the presence of stress-re-
lated growth in women living with HIV/AIDS is that
growth can exist concurrently with the stressor. In con-
trast to growth research with rape, holocaust, or heart
attack victims (Burt & Katz, 1987; Lifton, 1980;
A‚eck et al., 1987), all of whom have already survived
the speci®c stressor event and are no longer in physical
danger (although stresses such as fear of recurrence
often continue), women living with HIV/AIDS per-
ceived positive changes while the stressor was still
ongoing or, perhaps more signi®cantly, often even as
their health worsened. This suggests that stress-related
growth may not occur purely as a reconstruction of
past events, but may occur at an early time point in
the stress experience. However, further research must
be conducted to better understand the development of
stress-related growth.
The ®ndings also have important value for inform-
ing the development of psychosocial and clinical inter-
ventions with HIV infected women. One strong
criticism of the existing pathology-focused emphasis in
both stress research and mental health is its inade-
quacy for providing direction for prevention research
and clinical practice (Saakvitne, Tennen & A‚eck,
1998; Weick, Rapp, Sullivan & Kisthardt, 1989). By
focusing on the development of new strengths, bene®t-
®nding, and feelings of empowerment and strength,
growth facilitating interventions may provide a rep-
resentation of stresses such as HIV diagnosis from one
of total loss, to one that may also contain some gains.
Clearly view may have therapeutic bene®t. Such inter-
ventions would almost certainly hold more appeal than
those which emphasize primarily their de®cits and vul-
nerabilities and would have the bene®t of reducing the
sense of victimization that some may feel.
As stress-related growth is a relatively new area of
research, a great many questions remain to be
answered. The ®ndings presented here are only a ®rst
step in understanding the diversity and breadth of
what constitutes stress-related growth for this unique
stressor and population. Future research is needed to
determine how these di€erent forms of growth,
described here, may be di€erent for other populations,
other stressors, and other cultural contexts. Additional
research to triangulate reports of stress-related growth
are also needed in order to better determine if these
changes are actual or perceived changes.
Acknowledgements
Funding for this research was provided by a grant
1553
from the National Institute for Mental Health
(MH50414), Karolynn Siegel, Principal Investigator.
The authors express thanks to Suzanne C. Ouellette
for her many helpful comments on this paper. An ear-
lier version of this paper was presented at Reconstruct-
ing Health Psychology: First International Conference
on Critical and Qualitative Approaches to Health Psy-
chology, July 1999, St. John's, Newfoundland,
Canada.
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