Disclosure of HIV
Infection Among Asian/Pacific Islander American Women:
Cultural Stigma and Support
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Cultural
Diversity and Ethnic Minority Psychology
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© 1999 by the
Educational Publishing Foundation, Inc.
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1999
Vol. 5, No. 3, 222-235
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Dorothy
Chin
Department of Psychiatry and Biobehavioral Sciences University
of California, Los Angeles (UCLA)
Kendall W. Kroesen
Veterans Affairs Medical Center
ABSTRACT
Disclosure of HIV infection can lead to important social
support that can mitigate the negative effects of stress ( R.
B. Hays et al., 1993 ). However, disclosure can also
result in rejection, discrimination, and stigma, making the
decision to disclose a dilemma for individuals infected with
HIV. This decision may be particularly difficult for
Asian/Pacific Islander (A/PI) women, owing to HIV's
association with topics considered "taboo" in Asian
cultures ( T.
S. Gock, 1994 ; G.
Yep, 1993 ). This study explored the process, influencing
factors, and consequences of disclosure among a sample of 9
HIV-positive A/PI women. On the basis of qualitative
interviews and quantitative social network data, findings
suggest that these women are acutely aware of and affected by
the stigma attached to HIV and that the decision to disclose
is influenced by fears about being stigmatized, concerns about
disappointing or burdening others, and concerns about
discrimination. The consequences of disclosure were generally
positive, with variations over time that include both the
exacerbation and amelioration of stress. Results suggest the
need for research and interventions to address the cultural
factors that affect the disclosure process as well as the
varying levels and sources of stress over time.
Whether to disclose one's HIV infection is a potentially
critical decision that can lead to both positive and negative
outcomes. Accordingly, it has received greater scrutiny from
researchers in recent years (e.g., Hays
et al., 1993 ; Simoni
et al., 1995 ). Disclosure can result in greater social
support, which has been shown to buffer the effects of stress
( Cohen
& Wills, 1985 ; Peterson,
Folkman, & Bakeman, 1996 ) and to reduce anxiety and
depression ( Hays,
Turner, & Coates, 1992 ). Conversely, hiding one's
status may not only preclude HIV-related social support and
its attendant benefits but may also have direct negative
effects on disease progression for HIV-positive individuals.
For example, one study found that HIV-positive gay men who
concealed their sexual identity exhibited a faster progression
of their HIV disease than those who did not ( Cole,
Kemeny, Taylor, & Visscher, 1996 ). Also, emotional
inhibition, of which nondisclosure may be an exemplar, has
been shown to have adverse effects on immunologic functioning,
including lower T-cell counts and antibody response ( Pennebaker,
Keicolt-Glaser, & Glaser, 1988 ). However, the
consequences of disclosure are not singularly positive.
Individuals who decide to disclose their serostatus risk
personal rejection, discrimination, and ostracization from
family and community, and withdrawal of emotional and
instrumental support ( Herek
& Glunt, 1988 ). Furthermore, the process of
disclosure may be inherently stressful, even in cases with
positive outcomes. Thus, to facilitate better outcomes for
HIV-positive individuals and their significant others, one
must examine the factors that contribute to the decision to
disclose, the process of disclosure, and its impact on
HIV-positive individuals and others.
For Asians/Pacific Islanders (A/PIs), disclosure of HIV may
be particularly difficult because of its association with
death, illness, drugs, and homosexuality, topics deemed to be
"taboo" in Asian cultures ( Gock,
1994 ; Yep,
1993 ). Indeed, some researchers have postulated that the
stigma associated with HIV in Asian populations has inhibited
the reporting of cases ( Aoki,
Ngin, Mo, & Ja, 1989 ; Gock,
1994 ), a contention supported by studies showing rates of
risk behaviors and markers of risk behaviors among Asians to
be roughly equal to those of other groups ( Baldwin,
Whiteley, & Baldwin, 1992 ; Cochran,
Mays, & Leung, 1991 ; Gellert
et al., 1995 ), even though official tabulations of AIDS
rates are much lower ( Centers
for Disease Control and Prevention [CDC], 1998 ). That
A/PIs attribute their infection to blood transfusions–a more
culturally acceptable source of infection–two to seven times
more than other individuals ( CDC,
1998 ), a disparity with no apparent realistic basis, also
speaks to the stigma of HIV within this population ( Gock,
1994 ).
For A/PI women infected with HIV, the issue of disclosure
may be further complicated by cultural and gender values that
emphasize sexual modesty ( Baldwin
et al., 1992 ; Kulig,
1992 ), reticence regarding sex and sexuality ( Gock,
1994 ; Kulig,
1992 ), and the fulfillment of family obligations and
responsibilities ( Schweder
& Bourne, 1984 ; Triandis,
1995 ). A declaration that one is HIV-positive may be
viewed by the self and others as a rejection of these core
values. Furthermore, because Asian cultures are predominantly
collectivistic, where individuals are defined as part of
groups such as families rather than as separate, independent
entities ( Triandis,
1995 ), being HIV-positive may be seen as a negative
reflection not only on oneself but also on one's family or
community. Therefore, the potential for shame and loss of face
following disclosure is likely to be greater in this cultural
context than in more individualistic cultures, making the
concealment of one's seropositivity even more attractive.
The influence of cultural values on the decision to
disclose has been suggested in previous studies. Simoni
et al. (1995) found that Spanish-speaking Latina women
disclosed to fewer people, and in particular to fewer family
members, than did English-speaking Latinas. A similar pattern
of results was found for men, with Whites disclosing more than
Latinos, and English-speaking Latinos disclosing more than
Spanish-speaking Latinos ( Mason,
Marks, Simoni, Ruiz, & Richardson, 1995 ). These
authors suggested that these ethnic and cultural differences
may be due to a difference in cultural values, specifically
familism and simpatia, that inhibit disclosure. A
desire to protect others was more frequently cited by Latino
than White men as the reason not to disclose, consistent with
the collectivistic orientation found in Latino cultures and
therefore supporting the cultural hypothesis.
As Asian and Pacific Islander cultures are also considered
to be collectivistic ( Triandis,
1995 ), we might expect to see a similar pattern of
disclosure and its effects among A/PIs. That is, the extent of
one's cultural orientation and acculturation level may
influence the disclosure process. To date, however, few
studies have investigated HIV/AIDS among A/PI women, and none
have examined disclosure issues, perhaps because of the
disproportionately low infection rates reported for this
group. 1
However, to the extent that rates are a reflection of
individuals' willingness to disclose, which is influenced by
the cultural stigma, which in turn may be influenced by the
rates themselves, an understanding of how and why women choose
to disclose and the consequences of disclosure could affect
not only the well-being of infected individuals but community
attitudes and resource allocation as well.
The present study examined disclosure of HIV infection
among a small sample of A/PI American women to members of
their social networks. Although the term Asian/Pacific
Islander encompasses many ethnicities varying in
seroprevalence rates, we elected not to restrict the sample
further in this study because there are no studies to date on
HIV-positive A/PI American women and because of sample
limitations. As HIV/AIDS rates begin to distinguish certain
subgroups of A/PI women from others, research will likely
shift accordingly to focus on those subgroups. This study was
designed to address three primary questions:
·
Did participants disclose and to whom did they
disclose?
·
What factors influenced the decision to
disclose?
·
What were the consequences of disclosure?
A paramount objective of the study was to
investigate the cultural context that gives rise to the
meanings of disclosure in this population. Therefore, we used
a multimethod approach combining quantitative social network
data with qualitative analysis aimed toward the understanding
of the cultural context in which sociocultural phenomena are
situated ( Weisner,
1996 , 1997
).
Method
Procedure
The present study used quantitative social network data
collected as part of a larger study, the University of
California, Los Angeles—Charles Drew Medical Center
(UCLA—Drew) Women and Family Project (WFP), a 5-year
longitudinal study of women infected with HIV, as well as
qualitative data obtained from a subsample of A/PI
participants to explore disclosure issues in greater depth.
For the WFP, women of all ethnic backgrounds who
self-identified as HIV-positive were recruited and invited to
participate in the study. Participants were administered a
comprehensive, structured interview that covered a wide range
of topics related to HIV/AIDS, as well as a pelvic exam and an
HIV test (ELISA/Western Blot) to confirm their serostatus (for
a more detailed description of methods used in the original
study, see Wyatt
& Chin, 1999 ).
The present study included only the A/PI women from the
original sample. Owing to the combination of a low rate of
AIDS 2
reported in Los Angeles County (57 cumulative cases
reported as of December 31, 1998; Los
Angeles County Department of Health Services, 1999 ) and
surrounding areas and the overwhelming reluctance of this
group to participate in HIV research ( Chin,
1997 ), special concerted effort was made to recruit
participants in Los Angeles, San Bernardino, and Orange
Counties at Asian-specific as well as nonspecific HIV/AIDS
service organizations, clinics and hospitals, traditional
Eastern medicine clinics, mental health clinics, general
social service organizations, women's organizations and
groups, college campuses, and through Asian-language
newspapers and newsletters and by word-of-mouth. Fifteen
HIV-positive A/PI women were contacted; however, 6 ultimately
refused to participate, resulting in a final sample of 9
women.
Participants were interviewed in English or an Asian
language according to their preference. Two participants opted
to have questions translated into an Asian
language–specifically, Chinese (Mandarin) and
Cambodian–and to respond in their native language, which was
translated back into English by trained interpreters who staff
an agency that provides translation services specifically for
health and medical matters. However, these 2 participants
chose not to participate in the qualitative interviews; thus,
translations of items and responses occurred only for the
structured social network questions and not for the
qualitative data, all of which were provided by participants
in English.
Sample Characteristics
The sample consisted of 9 HIV-positive A/PI women ranging
from 21 to 51 years of age ( mean age = 38.8 years ). Three
were Filipino, 2 were Chinese, 2 were Cambodian, 1 was
Vietnamese, and 1 was of mixed Chinese/Vietnamese background.
All but 1 of the participants were born outside of the United
States. Among those foreign born, length of residence in the
United States ranged from 12 to 24 years, with an average of
17.5 years. The sample was diverse in education, ranging from
6 to 18 years ( M = 12.1 ). All of the participants
self-identified as heterosexual. In terms of infection source,
7 had been infected through heterosexual contact and 2 through
blood transfusion. Among the partners who infected the women,
two were later known to be bisexual and one used intravenous
drugs. Length of time since HIV diagnosis ranged from 2 to 8
years, with a mean of 4.1 years.
Data Structure and Analysis
To examine the process, influencing factors, and
consequences of disclosure in this population, we used both
quantitative and qualitative data. Quantitative data were
based on social network items asking respondents to list the
people in their lives whom they considered "important.
" The instructions to this question distinguished
"important" from "supportive," clarifying
that important people may not necessarily be supportive.
Respondents were asked, with respect to each network member,
whether the network member knew of the respondent's HIV
status, whether respondents themselves disclosed the
information, their level of comfort talking about HIV
concerns, the network member's reactions to disclosure, and if
and how the relationship changed after disclosure.
Qualitative data were derived from semi-structured
interviews focusing on the experience of being diagnosed with
HIV and its effects on identity and relationships, subsequent
coping, and the process and effects of disclosure.
Investigator-driven themes were established on the basis of
the research topics outlined above. Within these general
topics, participants responded freely, and data from interview
transcripts were read and analyzed using a grounded-theory
approach by two independent coders ( Glaser
& Strauss, 1967 ; Strauss
& Corbin, 1990 ). Textual passages and themes that
were pertinent to investigator-driven themes were identified.
Text for a given theme was aggregated and examined for
explanations of behavior regarding disclosure that were
indigenous to the respondents. Themes were considered reliable
when agreed on by both coders; those that did not reach
consensus were discarded.
Results
Social Networks
Participants were asked to generate a list of people whom
they felt were important to them. As displayed in Table
1 , the number of people in individuals' social networks
ranged from 2 to 12 ( Mdn = 5 ). Social networks
included family members (mother, father, sister, brother, son,
daughter), significant others (partner, husband), health and
mental health providers, and friends. Friends were most often
named as important network members, followed by therapist or
counselor, sister, and brother. Only 3 women named their
husbands or partners as important members of their social
networks, reflecting the fact that almost all of the
participants were unmarried or were not in intimate
relationships. In the aggregate ( N = 51 ), social
networks comprised a roughly equal number of men (43%) and
women (57%). In terms of HIV status, the majority (91%) of
network members were seronegative or of unknown serostatus;
only three individuals were known to be HIV-positive. Almost
all network members (84 %) knew participants' HIV status. Of
those who knew, only six were not informed by the participant
herself and were instead informed by physicians or other
family members.
To Whom Did Participants Disclose?
As shown in Table
1 , network members to whom participants disclosed their
HIV status are indicated by a checkmark, and those to whom
serostatus was not disclosed are denoted by an asterisk.
Eighty percent of the total number of people in social
networks were informed by participants of their HIV status. On
average, respondents disclosed to 75% of people in their
social networks. All of the participants disclosed to at least
one person considered important to them. Four participants
reported disclosing to everyone in their networks, and 1
reported that she informed only three of the nine people in
her social network. Because the cases in the social network
dataset are nonindependent (i.e., a different number of cases
is accounted for by each participant), we did not perform
statistical analyses to ascertain differences based on network
member characteristics. However, inspection of the data
suggests that disclosure did not significantly vary by gender
of network member or relationship to respondent. 3
Serostatus of network member appeared to make a
difference, with respondents disclosing to 100 % of
seropositive members as compared with 78% of seronegatives or
unknowns; however, this inference is limited by the fact that
there were only three seropositive individuals in networks.
Although rates of disclosure to social network members were
quite high, suggesting a favorable stance toward disclosure,
examination of the qualitative data suggests a more complex
process. The data show that participants tended to dissociate
from friends in general upon learning their diagnosis. For
example, 1 respondent stated,
I would say
under five people know (I'm HIV-positive). But percentagewise,
that's probably 80% of the people I hang out with. Yeah, for
the most part, I really cut out a lot of associations.
Another participant stated that she has
limited her friendships because of the potential problem of
having to disclose her illness:
I can't have any
friends to hang out with, because eventually I would want to
tell them because that's a part of my life. So sometimes I
don't even bother making friends because I'm afraid of
rejection.
Thus, the social networks of participants
may have already been pared down to exclude people to whom
participants did not want to reveal their HIV status,
accounting for high rates of disclosure to remaining network
members.
What Factors Influenced the Decision
to Disclose?
Analysis of the qualitative data indicated several salient
factors that influenced whether women disclosed or not: (a)
fears of being stigimatized; (b) concerns about burdening or
disappointing others; and (c) concerns about discrimination.
These factors were central to the respondents in their
analysis of whether, when, and how to disclose to the people
in their lives. Furthermore, the strength of the relationship
between these major factors and the decision to disclose
appears to be affected by the following: (a) the cultural
orientation of the respondent; (b) the perceived cultural
orientation of the target; and (c) the type of relationship
the respondent has with the target of disclosure (i.e.,
family, acquaintance, etc.). For example, concerns about being
stigmatized influence the decision to disclose more so for
individuals who are more Asian in cultural orientation, who
perceive the person to whom they may disclose to be more
culturally Asian, and whose relationship to the target is
family. Thus, these factors appear to moderate the
relationship between major influencing factors and the
decision to disclose. They also appear to have independent
effects on the influencing factors and the decision to
disclose. We now discuss each of these factors.
Fear of Stigma.
Although the stigma attached to HIV has been noted for
infected individuals regardless of ethnicity or culture (e.g.,
Herek
& Glunt, 1988 ), it may be heightened for A/PIs, owing
to its associations with topics considered culturally
taboo–in particular, death, disease, sex, and drugs ( Gock,
1994 ; Yep,
1993 ). To disclose one's HIV status is to openly
associate oneself with a topic that should remain unspoken, as
proscribed by cultural norms ( Chin,
in press ). Regardless of whether and to whom respondents
eventually disclosed, every respondent voiced the fear of
being stigmatized by HIV. Many respondents spoke of the stigma
HIV connotes in contrast to other terminal illnesses such as
cancer. A 25-year-old respondent who contracted HIV from an
ex-boyfriend stated:
I think
sometimes I wish–I don't think dealing with a terminal
illness is so hard, I think it's that it's HIV. Dealing with
cancer, I would feel much more relieved. Because it's more
accepted.
Another young, unmarried woman who learned of her
seropositivity 2.5 years ago also described the stigma of HIV
in comparison with cancer.
Having this
disease is very, very difficult because there is such a stigma
attached to it. It's not like having breast cancer where
everyone's like, "Oh you have cancer, you poor thing, I
feel so sorry for you." When you have HIV, people are
like, "You animal. You're disgusting, and you got
yourself infected."
This woman's fears about being judged harshly as well as
the possible negative connotations about her sexuality
prevented her from disclosing to anyone until a year after her
diagnosis, and then only to her sisters.
Nobody knows. I
don't know why I'm so afraid to tell anybody because it's not
like I asked for it. It's not like I slept with a million guys
and got it. All it takes is once. And I'm so ashamed of it. I
don't know why I'm so fearful of being judged by people.
Thus, not only is HIV a stigmatized disease, but being
infected by having sex is distinguished from blood
transfusions as a further source of stigma. The meaning that
is attributed to contracting HIV through sex was voiced by
another respondent:
You know the
"A group, B group" thing? The A group is the poor
unfortunate group, through no fault of their own got blood
transfusions or whatever. The rest of us are sluts. The women
who got it through sex have that shame about them.
It is interesting to note that the women who were ashamed
of contracting HIV through sex were all unmarried at the time
they were infected (and all who were so infected spoke of
shame). None of the 4 women who were infected through sex with
their husbands raised sexuality as a topic of concern,
suggesting that it is only sex outside of marriage that
confers stigma. The 25-year-old woman who was infected by an
ex-boyfriend saw the decision to disclose her HIV status also
as an embarassing admission that she has had sex:
It's like
everybody knows you had sex. If you didn't have this disease,
at least you might get away with that.
Disclosing to those within the culture, including family
members and one's ethnic community, appears to be particularly
difficult, suggesting further that the stigma of HIV is in
part culturally based. Almost all of the respondents decided
initially not to tell their parents, and most agreed that
their parents' cultural orientations contributed to their
decision. Indeed, only 2 respondents informed their mothers
about their status, and none told their fathers. One woman was
"forced to" tell her mother because she was living
with her parents at the time of diagnosis and could not hide
her traumatized state. The other respondent disclosed to her
mother readily, a factor in which may be her
"blameless" route of infection of sex with her
husband.
She supports me
all the way because my mom knows I never fooled around. She
never once said "Oh, how did you get it? Why you do
that?" She supports me all the way. She says, "Don't
worry, just take good care of yourself."
Respondents were more likely to tell their siblings than
their parents about their illness, perhaps because they
perceived them to be less Asian and more "Western"
in cultural orientation. The young woman quoted earlier who
has not informed her parents told her sisters. The reactions
of siblings who were more culturally Asian (e.g., those who
lived in an Asian country) were expected to be negative,
similar to that of parents. One respondent whose brothers and
sisters resided in the Philippines was compelled to disclose
to them because her niece found out through another source.
She anticipated rejection based on her community's norms.
They should shun
me. Not talk to me. But they're very kind people, they're very
nice, but that's just how they think. Generally, how the
people think there. And, I wanted to tell them at the right
time, slowly, and introduce them to the case. But it didn't
happen that way.
The cultural stigma of HIV is also suggested by specific
fears about disclosing to members of one's ethnic community.
One respondent was extremely concerned that members of her
small, tight-knit community would find out about her infection
through gossip. Her fears proved to be true, unfortunately, as
two medical providers in the community to whom she disclosed
told others, which enhanced her fears of being judged.
I think there
are probably other people who know, because from the people I
told. (How do you feel about people knowing?) I don't dislike
them or anything, but I guess, I worry they may go around
telling some more. I'm worried they discriminate against me.
That's why I don't want them to know. (What kind of
discrimination?) Oh, that they're going to get it from me, not
talking to me, being friends with me. Or thinking I deserve
it.
It is worth noting that although this respondent used the
word discrimination to describe the consequence she
fears, it is more than that, encapsulating elements of
emotional rejection–"not talking to me, being friends
with me"–and stigma– "I deserve it." The
elaboration of her meaning behind the oft-used term discrimination
underscores the utility of qualitative methods in
obtaining meaningful and valid data.
In addition to cultural values that confer stigma, the
collectivistic orientation of A/PI cultures may also inhibit
disclosure, especially to family and community members. In
collectivistic cultures, individuals are considered part of an
organic whole, in contrast to individualistic societies that
consider individuals as autonomous, independent entities
living together under a social contract ( Schweder
& Bourne, 1984 ). Actions of individuals in a
collectivistic culture are usually contextualized rather than
treated as independent, and they inherently affect other
members of society to some degree depending on how they are
related. In the context of HIV, then, stigma is borne not only
by the individual but also by the family and community. One
respondent who immigrated from Vietnam at 4 years of age spoke
of this issue from her bicultural perspective:
I think my mom
thinks it's her parenting. I think she blames herself.
Everybody here (in the United States) is like "be who you
are, just express your feelings." It's kind of hard, you
know. So in some ways we're closer, but she's–a part of me
thinks that she's ashamed, you know, because of the stigma,
but more so in Asian cultures.
Concern About Disappointing/Burdening
Others.
A second major factor in the decision to disclose was
concern about disappointing or burdening others, particularly
with respect to family members. Disappointing and burdening
others were usually voiced simultaneously as aspects of a
single construct. The young woman who could not bring herself
to tell her parents and younger brother her HIV status spoke
of this fear:
I would have
told my brother, but I think he would be heartbroken. I'm the
oldest in the family, I've always been kind of invincible to
them. And for him to know that I have a terminal illness would
be very hard for him. I know he's trying to adjust himself, so
I don't want to bog him down with my problems. I know that's
wrong, I need a support system for myself.
Thus she struggles with the conflicting needs of wanting
more personal support yet not wanting to burden or disappoint.
Her expectation that her parents would be hurt and
disappointed in her should they find out her HIV status was
the overwhelming factor in her decision not to disclose to
them.
I think it would
be the hardest thing in the world to tell my mom and dad. This
is something that could have been prevented if I had been a
little safer, if I had practiced safer sex, I would not be in
this situation. How do you tell your parents something like
that? I think one day, I'm going to tell them when I'm really,
really healthy, so not to scare them or anything. The last
thing I want to do is hurt my mom and dad.
The woman who was able to disclose to her mother readily
did not fear being stigmatized but instead feared placing a
burden on her that she felt should not be there.
But my concern
is she's old and stuff, you know. She may end up sick because
of taking too much of my responsibilities. But at this age,
she's supposed to have fun, enjoy life, but she didn't see
taking care of my responsibilities, taking care of my child.
Concern About Discrimination.
Concern about discrimination was another factor respondents
considered in their decision to disclose their HIV status.
Unlike concern about disappointing others, which was most
relevant to family members, concern about discrimination
applied to all potential targets of disclosure, from family to
medical personnel to the workplace. Many feared discrimination
even from family and friends–that they would be asked to
keep their distance, eat separately, and not share utensils,
for example. After she learned she was HIV-positive, the young
Vietnamese woman did not disclose to anyone except a gay male
friend whom she felt would not discriminate against her:
One day we
started talking, and I told him. He was gay so it was easy for
me to tell him, "you know, I'm HIV-positive." And he
said, "Really, so am I." So we were just really good
friends.
In many cases, however, fears of discrimination were
realized. One woman who informed her church leader she was
HIV-positive was told to bring her own plate and utensils to
church lunches, even though the church leader was emotionally
compassionate. Thus, unlike other forms of rejection that may
be rooted in cultural taboos, discrimination appears to be
fueled by ignorance about HIV. Independent of the stigma
attached to HIV, a lack of accurate knowledge within Asian
communities may make discrimination more likely for
HIV-positive A/PI women. One respondent clearly believed this:
Actually, the
people who don't have it are very discriminated against the
ones who do. They tend to be, oh my gosh, don't go near, don't
eat what she give you, things like that. And the ones who do,
most of them don't come out. And they don't tell others
because once you tell, it's going to be all over. And if they
do, they all probably only go to a doctor far away.
The element of stigma is also evident, however, as she
expressed concern not only about possible discrimination but
also about people in her community knowing her status. Indeed,
it may be virtually impossible to disentangle the two. When
asked why Asians may be especially discriminatory, she alluded
to cultural and language barriers:
Asians are more
afraid because of the small community, or maybe the language.
They don't want to go out, they don't understand what other
people say, or maybe they're afraid what other people say,
afraid to talk to other people, things like that.
What Were the Consequences of
Disclosure?
As part of the network data, respondents indicated whether
they were closer, less close, or at about the same level of
closeness to each member after disclosing their HIV status. Of
the 51 relationships represented in the social network data,
respondents felt closer in 63% of cases, and in 34% they
reported that the level of closeness was the same. Only one
relationship was reported to be less close after disclosure.
However, in examining the qualitative data (presented below),
a fuller picture emerges indicating varying levels of
closeness over time, and responses would depend on the point
in time the question is asked. Respondents were also asked
whether they were comfortable talking with network members
about their HIV concerns. Eighty-one percent said they were
comfortable, and 19% reported being uncomfortable. Again,
because ratings of network members were nonindependent, we did
not perform statistical analyses based on network member
characteristics. However, inspection of the data suggests that
feelings of closeness did not significantly vary by gender of
network member or type of relationship. 4
Serostatus seemed to make a difference, with
respondents feeling closer to 100% of seropositive members as
opposed to 58% of seronegatives or unknowns, although this
inference is constrained by the low number of HIV-positive
network members. Feelings of comfort appeared to vary by type
of relationship, as respondents reported feeling comfortable
talking about their HIV concerns to 96 % of friends and other
associates, compared with 67% of partners and 57% of family
members.
The qualitative data suggest that upon disclosing to
family, participants experienced changes in stress and social
support, the level and source of which varied over time. For
example, the immediate aftermath of disclosure was usually
extremely stressful and negative, as participants had to deal
with shock, rejection, withdrawal of social support, and
stigma. For example, 1 participant's family completely cut off
all communication, leaving "no connections
whatsoever," and the reaction of another participant's
sister created more stress for her.
When I told my
other sister, she screamed and started crying. She didn't want
to talk to me. I just didn't even want to deal with it, like I
wanted to crawl into a hole and just be myself and not deal
with it anymore.
However, as time progressed, greater social support from
family members was evident. The family who withdrew entirely
reestablished communication and offered more support:
They're very
supportive right now. They're offering me to come there (to
the Philippines). Which I have been, they've sent for me last
year, and the previous year for vacations there for 3 months.
But this year, I'm just waiting if they'll offer to. But they
just know there's no medication there, and it will be hurting
my feelings because the people are still very narrow-minded.
Although disclosure eventually resulted in greater support
from family members, in some cases it also led to the
formation of in-groups that functioned to limit further
disclosure–that is, although family members accepted the
situation, disclosure to individuals beyond the immediate
family unit was discouraged and sanctioned. One respondent
reported:
With my family,
it was really hard, because they were–they accepted it, but
they were still in denial. They accepted it because I was
their daughter, they had no choice. But they didn't really
accept it, you know. Like when my aunt came over, we had to
hide all my videos and books (related to HIV and AIDS).
Thus, while disclosure resulted in an increase in social
support, it also created intrafamily conflicts that increased
stress for participants. The confining conditions imposed by
family on participants following disclosure were often at odds
with the need for individuality.
It was hard
especially because I was living with my mom and dad because
they're very traditional, and they're very, like, take care of
your soul if you're falling apart on the inside, just make
sure that everything (on the outside) is OK. So that was hard
for me because I couldn't live in denial. Because it was part
of my life. So eventually I moved out, like maybe eight months
or a year after I found out.
Similar to the level of stress, the sources of stress also
changed over time following disclosure to family members.
While rejection or withdrawal was an immediate stressor,
participants worried about being a burden to family members
over time. Many respondents spoke of the "sick role"
being the antithesis of what they should be in
life–independent, productive adults taking care of children
and aging parents. Indeed, it reverses what are viewed as
culturally prescribed roles of an adult child and her parent.
I feel bad
sometimes. I mean, I'm glad she's helping me, but at the same
time I feel like I'm selfish. You know Asian family, you grow
up, she's taking care of you, now you're older, you're
supposed to do nice things for her. Instead I'm giving her
more work, more things to do. I'm supposed to be independent.
She's taking care of me like I'm still a kid.
Disclosure to individuals other than family usually yielded
immediate positive outcomes that were sustained over time.
Unlike family members to whom participants felt
"forced" to disclose because of circumstances,
disclosure to friends and other acquaintances was usually
voluntary, making positive outcomes more likely. For example,
disclosure to a gay male friend led to higher social support
and personal growth for one respondent:
He hooked me up
with (a support group). So I would say five months, and that's
when everything began, like my acceptance, and growth. Good
things.
Another woman who sought a therapist also
gained a wider circle of support and friendship.
[Of a support
organization in Hollywood] And then the women, they–it's a
two-day weekend, and it's just a, a seminar. Everybody gets to
vent. And, every–at least twice a day there's a support
group so you can have a little family by the time you're done
... And ah, it's, it's very intimate, it's very nice. It was
very good for me.
It is interesting to note that among the people named in
respondents' social networks, the individuals to whom
respondents told their HIV status most consistently were
medical providers and therapists or counselors. As these
individuals probably entered participants' lives as a result
of HIV and not prior, this suggests that health and mental
health care providers become very important to HIV-positive
individuals, possibly providing the support and intimate,
consistent contact that friends and family had given prior to
diagnosis. Thus, patterns of social support appear to evolve
over time, diminishing in non-HIV-related sources after
diagnosis and increasing in HIV-related sources.
Discussion
Findings among 9 A/PI women with HIV revealed high rates of
disclosure of HIV status to members of their social networks.
Overall, participants withheld their status from very few
people they considered important. This is somewhat surprising,
as A/PI women might be expected to hide their status to
protect themselves and significant others from the stigma
associated with HIV. Indeed, the stigma appears quite strong,
as participants voiced many fears of being stigmatized. The
high rates of disclosure may be explained by the inherently
selective sample of women who, by virtue of participating in
the study, are by definition already disclosing their HIV
status in some fashion. Those who are least inclined to
disclose are probably not represented in studies on
disclosure, thus study samples, including this one, are likely
skewed toward those who have already initiated the disclosure
process. That these findings are representative of
less-inhibited A/PI women suggests that concerns about
disclosure may be even more intense and magnified for the
greater population of HIV-positive A/PI women.
The high rates of disclosure should also be considered in
light of the finding that participants may have already
limited their social networks following diagnosis in
anticipation of having to disclose, leaving only individuals
to whom participants are likely to disclose. Another
consideration is the phrasing of the network question, in
which respondents were asked to name those important to them.
Although the generated lists included people not disclosed to,
some respondents could have defined as important those they
had already disclosed to or were likely to disclose to in the
future, thus inflating disclosure rates. The approach used in
other studies (e. g., Simoni
et al., 1995 ) of using investigator-identified
significant others rather than respondent-generated ones,
while addressing a slightly different question, may result in
differing rates.
Respondents disclosed to a roughly equal number of men and
women. In contrast to previous findings on African American
women ( Simoni
et al., 1995 ), few respondents disclosed to their
mothers, which probably reflects a strong cultural expectation
against disappointing one's parents. Respondents appeared more
likely to disclose to HIV-positive network members. However,
this inference is limited by the few HIV-positive individuals
represented in networks. Underlying this may be a reluctance
to attend HIV support groups because of fears of being
"discovered" by association. In addition, the
paucity of support groups designed for heterosexual women
within A/PI-specific HIV organizations or an underlying gay
culture may discourage them from seeking out seropositive
peers. Indeed, in a study of six major A/PI-focused HIV
service agencies in the United States, five have their roots
in gay or bisexual communities ( Wong,
Chng, & Lo, 1998 ).
Several major factors influenced the decision to disclose:
fear of stigma, concern about disappointing or burdening
others, and concern about discrimination. Stigma appears to
stem from taboos prevalent in Asian cultures and thus may be
stronger for A/PI women than other cultural groups. Stigma
associated with source of infection–specifically, through
sex (especially premarital) as opposed to blood
transfusion–was also evidenced. The responses of women
regarding this, referring to the "shame" of their
predicament, were especially poignant. As a previous study
found no differences in disclosure based on source of
infection among a group of ethnically diverse women that did
not include Asians or Pacific Islanders ( Simoni
et al., 1995 ), this may be unique to Asian cultures and
is consistent with the high rates of infection attributed to
blood transfusions among Asians compared with other groups ( Gock,
1994 ). Obviously, because of the preliminary nature of
these findings, further study will be needed to address this
issue. Concerns about disappointing or burdening others and
about discrimination are similar to those found in Latino
populations (e.g., Mason
et al., 1995 ). These concerns reflect the cultural,
language, and instrumental barriers that reinforce and promote
silence about HIV among A/PI individuals and communities and
call for continued education and intervention.
Perhaps the most striking finding is that consequences of
disclosure were overall quite positive. Disclosure to health
providers led to very positive outcomes with only two
exceptions. Despite immediately negative and sometimes very
harsh reactions, disclosure to family members and friends led
to eventual support, personal growth, and a sense of
well-being. However, while reducing or eliminating certain
sources of stress, disclosure also brought about new stressors
such as being placed in culturally incongruent roles. These
findings suggest that HIV-positive A/PI women should be
encouraged to disclose to those likely to respond positively.
At the same time, because the greatest stress appears to occur
around the disclosure period, increased support should be
provided to women immediately preceding and following
disclosure, possibly with the inclusion of family members in
interventions. Because negative reactions appear to stem from
a combination of stigma and ignorance about HIV, basic HIV
education, including mechanisms of transmission, disease
course, and treatment, should be provided to families to
dispel any misconceptions and to facilitate their adjustment
to having an HIV-positive family member. Given adequate
knowledge, the cultural value of collectivism should be an
advantage, motivating family members to offer the appropriate
support to someone close to them.
Increased disclosure may have ramifications not only for
individuals but for the larger community as well. Given a
reciprocal influence of stigma and disclosure, if more A/PIs
were willing to disclose their positive status, the cultural
stigma attached to HIV may diminish over time, which in turn
may lead to higher disclosure. In addition, the rate of
disclosure may affect the level and quality of HIV services in
the community, which may have effects on stigma and hence on
disclosure itself.
The findings reported here are based on a small sample of
HIV-infected A/PI American women that includes several
specific ethnic backgrounds. Although we are aware that many
groups fall under the term Asian/Pacific Islander, we
included all A/PI groups because of sample limitations and
because the findings seem of value despite these limitations.
Not restricting the sample further does assume a degree of
cultural commonality with respect to these issues, an
assumption that should be explored further. The reader is
cautioned to consider the findings within the proper
epistemological and methodological context, and note that
assumptions associated with the classical quantitative
approach may not be applicable (see Kroesen
et al., 1998 ). In particular, the sample may be skewed
toward individuals who are more acculturated, English
proficient, and amenable to disclosing their illness. Thus,
our findings are intended to serve as starting points for
future research and should not be assumed to apply to other
groups beyond this one. More research is needed to better
understand the disclosure of HIV infection among groups for
whom cultural scripts and expectations may further complicate
the process, taking into consideration that sources and levels
of stress and support are likely to be culturally defined and
to vary over time.
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1
A/PI women constitute 3.3% of the U.S. female population
and 0.5% of reported U.S. female adult and adolescent AIDS
cases ( CDC,
1998 ).
2
HIV rates (as opposed to AIDS rates) are not officially
compiled in California.
3
Aggregating all social network members ( N = 51 ),
serostatus was disclosed to 89% of women, 75% of men, 87% of
family members, 67% of partners, and 79% of friends and other
associates.
4
Aggregating all social network members ( N = 51 ),
respondents reported feeling closer after disclosure to 72% of
male network members, 57% of female network members, 50% of
family, 67% of partners, and 71% of friends and other
associates.
This study was supported in part by National Institute of
Mental Health (NIMH) Grant R01 MH48269, NIMH Postdoctoral
Training Grant MH-19200-09, and a seed grant from the UCLA
AIDS Institute. We thank the Asian Pacific AIDS Intervention
Team and Pacific Asian Language Services for supporting the
project, Judy Tejero and Michelle Cheng for research
assistance, Sanford Britton for data consultation, and Jane
Simoni, Tooru Nemoto, Anita Raj, and Eli Lieber for their
insightful comments and suggestions on an earlier version of
the article. Special appreciation is extended to the women who
participated in the study.
Correspondence may be addressed to Dorothy Chin, UCLA-NPI, 760
Westwood Plaza, C8-668, Los Angeles, California, 90024-1759.
Electronic mail may be sent to dchin@ucla.edu.
Table 1. Members of Social Networks and Rates of HIV
Disclosure
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