OF WOMEN LIVING WITH HIV INFECTION
Gray, PhD, RN
Journal of Psychosocial Nursing, May 1999
is inherently stressful, especially those that are life
threatening and associated with social stigma. HIV is both
life threatening and often viewed as an illness associated
with socially inappropriate or undesirable behaviors. Although
the stresses associated with living with HIV are assumed to be
great, the views of the affected individuals, specifically
women, have not been assessed.
epidemic was first recognized in men and early studies on
psychosocial aspects of the infection were conducted with
predominantly male samples. Women with HIV describe the health
care provider's lack of knowledge and compassion as the most
salient barrier to health care services (AIDS Legal Referral
Panel [ALRP], 1998). Nurses must become more aware of
stressors for women with HIV infection. Only then is the nurse
prepared to assess and plan effective interventions.
purpose of this article is to capture the responses of women
with HIV infection to the question, "What [aspect] about
living with HIV infection has been the most difficult for
you?" The data were obtained as part of a larger study
that examined both quantitative and qualitative aspects of
stress among women with HIV infection. The quantitative
results from the study have been submitted for publication
number of women living with HIV infection continues to climb
despite a decline in infection rates in other populations.
Worldwide, a woman becomes infected with HIV every 20 seconds
(HIV Frondine, 1997). In 1996, women accounted for 20%
of those with AIDS in the United States (Centers for Disease
Control and Prevention [CDC], 1997). The rate of AIDS deaths
among women declined by 7% in 1996 compared with a 19% decline
for the overall AIDS population (CDC, 1997). AIDS is the third
leading cause of death among women of childbearing age (15 to
44 years) (CDC, 1996). Among black women in the same age
group, AIDS is the leading cause of death (CDC, 1996).
women account for 21% of the population in the United States;
they also account for 77% of the women with AIDS (CDC, 1997).
Race, gender, and social class interact to place women at
increased risk for HIV infection and poverty (Osmond et al.,
1993). Medicaid was the. primary payor for more than half of
the hospital stays of HIV infected women (U.S. Department of
Health and Human Services [DHHS], 1995). Heterosexual contact
has bypassed intravenous drug use as the most common means of
transmission for women (CDC, 1997). Although HIV infects women
in all socioeconomic levels, the majority of HIV positive
women are poor and socially disadvantaged (Andrews, Williams,
& Neil, 1993).
rates from HIV/AIDS appear to be similar for men and women
when access to care is equal (DHHS, 1995). Not only are women
at greater risk for contracting HIV because of gender,
race/ethnicity, and poverty, these same factors are barriers
to accessing health care. These barriers are critical because
access to care determines to a significant degree who lives or
dies (ALRP, 1998).
defining criteria of AIDS were expanded to include
female-specific symptoms in 1993. Because many women with HIV
die without an AIDS diagnosis, Melnick, Wertheimer, and Pinn
(1995) expressed concern that
number of women dying with AIDS may be underestimated.
in both men and women is often diagnosed as a result of the
presence of Pneumocystis caring pneumonia. Kaposi's
sarcoma is another condition frequently leading to an AIDS
diagnosis, but it is rarely seen in women. AIDS in women is
usually diagnosed based on esophageal candidiasis, chronic
herpes simplex, and invasive cervical dysplasia (Peng, 1998).
The first HIV related symptoms for which women seek care are
usually recurrent candidal vaginitis, bacterial pneumonia, and
lymphadenopathy (Peng). Farzadegan and colleagues (1998) found
that women with half the viral loads of their male
counterparts progressed to AIDS in* a similar length of time.
These findings have clinical implications because
antiretroviral therapy is initiated based on viral loads. It
also emphasizes the biological differences between infected
men and women.
in AIDS care were recruited as data collectors through a
professional journal and networking at conferences. Support
groups of HIV positive women were also contacted about
participating in the study. Using data collectors privy to the
serostatus of potential subjects protected the confidentiality
of the subjects. .Because of the use of volunteer data
collectors and a variety of settings,
data collection was controlled by using pencil and paper
instruments to ensure each woman responded to the same
questions. Having the women respond in writing to all the
instruments, including the question of what was the most
difficult aspect of living with HIV infection, was also a
limitation. Education and culture may have influenced the
information the women felt comfortable sharing in writing.
researcher coded the responses by themes using the constant
comparative method (Lindlof, 1995; Weber, 1990). Clustering
was used to group the themes into mutually exclusive
categories whose boundaries reflect differences in the content
of the grouped responses (Krippendorff, 1980). The process was
repeated several months later by the researcher with similar
results. Although a weak measure of reliability, the stability
of the findings lends credibility to the resulting categories
convenience sample of 80 women positive for HIV women residing
in 10 states comprised the study. The average age of the women
in the study was 35.8 years (SD=9.2, range: 20 to 65).
Fourteen of the women were caring for an HIV-positive spouse
or lover. Only two of the women were caring for HIV positive
children. Minority women in the study totaled 41 (51.4%), most
of whom were African American(n=33). Only 22 of the women were
married or partnered; 13 were widows. Another 20 women were
divorced or separated.
of the women who were employed (n=30) were not caring for an
HIV positive family member. A total of 33 women were unable to
work as a result of ill health. Although 38 subjects had
household incomes of less than $9,999 a year, 6 had household
incomes greater than $50,000. High school was the highest
level of educational achievement for 21 of the subjects; 28
reported attending college and another 10 had college degrees.
activity was the mode of transmission for 57.5% of
the subjects. The next most frequent mode of transmission was
intravenous drug use.
average length of time from diagnosis to data collection was
45.9 months (SD=32.5). The number of months the subjects had
known their serostatus ranged from 2 to 125 months.
the women described a wide range of stressful aspects involved
in living with HIV infection, four categories of stressors
emerged through content analysis: fears, limitations,
symptoms, and emotions. Each of these categories will be
described and examples of the subjects' statements provided.
of disclosure. Sixteen women identified shame, secrecy, or disclosure as being the
most stressful aspect of living with HIV infection. The stigma
associated with the diagnosis was typified by the statement
that the most difficult aspect of HIV infection was the
"society shame; dealing with the stigma that society
places." Having to hide the diagnosis or realizing that
others knew the diagnosis "without me telling them"
was also identified as stressful.
women believed that "the hardest part for me has been the
secrecy. Feeling that I cannot tell everyone what is wrong for
fear of people's perception of those with HIV" Another
participant reported that "the disease has such a stigma
attached that I am afraid to share my diagnosis with family
members and friends."
of dying. One participant fought against the "pressure to
label the disease as a `death sentence,"' considering the
label a public misconception about the virus. Other women
acknowledged their own perceptions of the diagnosis as a death
sentence, admitting their concerns about becoming more ill and
eventually dying. The most stressful aspects of the infection
were described as the "fear of dying after a long painful
illness that no cure has been found for yet," and
"knowing that it is a progressive illness that will
eventually kill me." Especially poignant was one women's
realization that "because of HIV, I am going to have to
leave my children before they grow up."
some women, concerns about death were overshadowed by the
limitations they were already experiencing in their lives.
Some of the limitations were comprehensive and stated as
"not being able to have a full life" and " . .
. not being able to do the things I used to do." Some of
the limitations were a result of caring for other family
members who were infected. One women was "trying to care
for a child who is also infected." Another was
"taking care of a dying husband."
and sexual concerns included "the thought of never having
children"; " . . . not being able to have more
children"; and "not wanting to have sex as much as
my boyfriend because of my virus." Physical and emotional
limitations were also listed.
woman described the most stressful aspect as "dealing
with my husband's guilt and coping with the physical
limitations imposed by HIV" Another wrote " . . .
the emotional and physical limitations it has brought to my
appearance of financial limitations was not surprising
considering 33 of the women were unable to work. This inability resulted in
loss of salary and insurance for one participant. These losses
placed limitations on the women and required "getting
adjusted to a new income level" and possible
"financial dependence on family to pay for medications
symptoms of the infection, such as fatigue and pain were
linked to the demands of treatment. The intensity of this
stressor is captured by one participant who stated that
"the most difficult part is staying sick all the
time." Being sick involved symptoms, such as declining
vision, weight loss, and pain.
women noted that physical symptoms were especially troublesome
as signs of disease progression. Consequently, there was
".`the daily worry of what is next or if certain things
are signs of new disease" and " . . . worrying every
time I get a cold or sinus infection." One participant
reported staying well had become a full-time job. The
emergence of symptoms, led to "feeling helpless,"
and "having no control over the symptoms or course of the
illness," along with "living with uncertainty,
coaster. This uncertainty and the struggle toward acceptance
was pictured by one woman as an "emotional roller
coaster-a roller coaster that does not end and you cannot get
out." Another women stated that living with HIV infection
was "very hard to deal with at times, for me; I have my
depression, and loneliness were identified by several women as
being difficult aspects of HIV infection. Regrets related to
the behaviors of others included "realizing that me and
my mate have HIV because of him not using his head," and
"being angry because my husband gave it to me." A
woman caring for an infected family member identified " .
. . the pain of watching someone suffer" as stressful.
on others. Some of the concerns voiced by the women were related to the impact
of the illness on other people. One woman was concerned about
the "possibility of infecting my husband and my children
not knowing." Concerns were shared about " . . . the
`stress' it has put on my mom and other family members."
chose to withhold the diagnosis because of its impact on loved
ones. One woman was "trying to get my children to forgive
my boyfriend for infecting me." Withholding the diagnosis
was also influenced by the desire to protect family members.
woman described the most difficult aspect of HIV
of HIV; only revealing it to a friend and not to my
family . . .mainly because I do not want to cause them
worry; or to act differently towards me . . . whether with overwhelming
attention and emotion or adverse
The desire to protect loved ones was shown in statements, such
as " . . . the one thing that really is difficult is not
wanting my family to see me when I really get sick.".
Experiencing the emotional reactions, "watching my family
suffer, wonder, and be sad; I very often
feel guilt." -
stress of living with HIV was quantitatively measured by one
of the scales of the clinical version of the Mastery of Stress
Instrument (MSI) (Younger, 1993). On a scale of 10 to 50, the
mean for this sample was 30.12 (SD=8.61, range: 10 to 50),
higher than any published findings of other studies using the
MSI. Balancing the intensity of the subjects' stress
experience, the subjects reported a limited degree of mastery
of stress (M=54.94, SD=9.59, range: 27 to 75). The women
responded most positively to the MSI items dealing with
certainty or mastery of meaning.
related to disclosure and stigma permeated many of the women's
comments. Feeling unable to share the diagnosis with friends
and family members can lead to isolation and secrecy at a time when additional support
is most needed (Giacquinta, 1989). Stigma has been negatively
linked to life satisfaction among HIV-positive persons
(Heckman, Somlai, Sikkema, Kelly, & Franzoi, 1997). Nurses
must be aware of the interpersonal asp&ts of the women's
fears and their implications for the health care environment.
lack of compassion and sensitivity on the part of health care
providers has been reported by women with HIV as a reason to
delay or terminate care. Women with HIV are reluctant to seek
health care because of potential discrimination and loss of
confidentiality (ALRP, 1998). Although nurses in the field of
mental health are no strangers to protecting patient privacy,
a heightened commitment to confidentiality - is critical in
creating a health care environment in which women with HIV
will feel safe and accepted.
with HIV infection complicated the sexual and reproductive
decisions of the women in the study. One woman described her
fear of transmitting the infection to an HIV-negative partner
as decreasing her desire for sexual activity. The vast
majority of women in the world with HIV are of reproductive
age (Minkoff, 1998). Scientists remain unsure of pregnancy's
impact on HIV infection and what the best methods of treatment
for the HIV infected
expectant mother are. Such professional uncertainty only
heightens the reproductive uncertainty experienced by the
woman faced with the reality of mandatory testing and the
possibilities of negative health care provider attitudes; and
the likelihood of being unable to live until the unborn child
is an adult.
inability to work resulted in financial limitations that
influenced decisions about health care and ways to meet basic
needs. Being unable to work may limit the woman's health care
options (ALRP, 1998) and access to social support (Sharts-Hopka,
ReganKubinski, Lincoln, & Heverly, 1996).
influenced quality of life and were viewed by the women as
possible indicators of a progressing disease, eliciting
distress and uncertainty. Folkman, Chesney, and
ChristopherRichards (1994) found the unpredictable course of
HIV infection and unexpected improvement in health among the
factors contributing to depression in men with HIV Managing
symptoms and seeking treatment have been described in other
studies of persons with HIV infection as being "illness
work" (Gaskin & Brown, 1992).
women in the study were at different stages in their
experiences with HIV infection. Reflecting the subjective
nature of stress the women held contrasting views of the
overall experience of living with HIV infection. One
participant did not identify a specific stressful aspect,
rather she described the stress as "very extremely, hard,
difficult; basically, it sucks."
participant stated that dealing with the stressors was
"very hard at times . . . I have my days." Others
reflected on sources of strength: "Living with this
infection has made me see the strength I have within and to
know there is someone to love and care for me no matter
what"; and "For a while I was thinking negative. But
today, I can think positive."
in this study described the most difficult aspects of living
HIV infection. Glimpses of the reality and poignancy of the
experience were contained .in their candid statements. These
findings cannot be generalized to all HIV positive women
because the nonrandom sample was relatively small and the data
were primarily collected in urban areas. The methodology was
further limited by the reliance on written responses. The
methodology also prevented validating the meaning of the responses and the categories developed with the participants.
these limitations, nurses working with HIV positive women can
use these findings to initiate a focused psychosocial
assessment. The nurse could share that other HIV positive
women have described fears, limitations, symptoms, and
emotions as being difficult aspects of living
with the infection. The nurse could validate whether these
were difficult for the woman, eliciting specific
that focus on helping women identify and work through the
stressors of fear of disclosure
and premature death may serve to increase coping and quality of life. Assisting with access to resources to minimize limitations
imposed by the disease is warranted.
Just as imperative is the implementation of psychosocial and spiritual interventions to help the women deal
with the intense emotions involved in living with the
uncertainty of HIV Holistic, compassionate care can be facilitated by applying
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Dr. Gray is Assistant Professor, The
of Texas at Arlington School of Nursing,
Supported by grants from the
Nursing Research, The University of Texas at
Arlington School of Nursing and Delta Theta
Chapter, Sigma Theta Tau, International.
Appreciation for editorial assistance is
expressed to Dr. Carolyn Cason, Dr. Edith
Summerlin, Susan Brown-Chappell, and Kathy
Wright, colleagues at UTASN.
Address correspondence to
PhD, RN, 6409 British Lane, Arlington, TX
Eighty women described
the most difficult aspects of living with HIV infection.
Content analysis revealed four themes: fear, limitation,
symptoms, and emotions.
Fears related to disclosure and sigma were more
frequently described than fears of dying. Limitations
were financial, sexual/reproductive, and physical. The
physical limitations were related to the presence of symptoms
leading to a wide range of emotions.