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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

 


Disclosure of HIV Infection Among Asian/Pacific Islander American Women: Cultural Stigma and Support

Cultural Diversity and Ethnic Minority Psychology

© 1999 by the Educational Publishing Foundation, Inc.

1999 Vol. 5, No. 3, 222-235

 

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.

References


Aoki, B., Ngin, C. P., Mo, B. & Ja, D. Y. (1989). AIDS prevention models in Asian-American communities.(In V. M. Mays, G. W. Albee,& S. F. Schneider (Eds.), Primary prevention of AIDS: Psychological approaches (pp. 290—308). Newbury Park, CA: Sage.)
Baldwin, J. D., Whiteley, S. & Baldwin, J. I. (1992). The effect of ethnic group on sexual activities related to contraception and STDs. Journal of Sex Research, 29, 189-205.
Centers for Disease Control Prevention. (1998). HIV/AIDS surveillance report. (Atlanta, GA: Author)
Chin, D. (1997, January). Issues in the recruitment and retention of HIV-positive Asian Pacific women. (Paper presented at the Universitywide AIDS Research Program(UARP) Conference, Los Angeles.)
Chin, D. ((in press).). HIV-related sexual risk assessment among Asian/Pacific Islander women: An inductive model.(Social Science and Medicine. )
Cochran, S. D., Mays, V. M. & Leung, L. (1991). Sexual practices of heterosexual Asian-American young adults: Implication for risk of HIV infection. Archives of Sexual Behavior, 20, 381-391.
Cohen, S. & Wills, T. A. (1985). Social support, stress, and the buffering hypothesis. Psychological Bulletin, 98, 310-357.
Cole, S. W., Kemeny, M. E., Taylor, S. E. & Visscher, B. R. (1996). Elevated physical health risk among gay men who conceal their homosexual identity. Health Psychology, 15, 243-251.
Gellert, G. A., Maxwell, R. M., Higgins, K. V., Mai, K. K., Lowery, R. & Doll, L. (1995). HIV/AIDS knowledge and high risk sexual practices among southern California Vietnamese. Genitourinary Medicine, 71, 216-223.
Glaser, B. & Strauss, A. (1967). The discovery of grounded theory: Strategies for qualitative research. (Chicago: Aldine)
Gock, T. S. (1994). Acquired immunodeficiency syndrome.(In N. W. S. Zane, D. T.Takeuchi, & K. N. J. Young (Eds.), Confronting critical issues of Asian/Pacific Islanders (pp. 247—265). London: Sage.)
Hays, R. B., McKusick, L., Pollack, L., Hilliard, R., Hoff, C. & Coates, T. (1993). Disclosing HIV seropositivity to significant others. AIDS, 7, 425-431.
Hays, R. B., Turner, H. A. & Coates, T. J. (1992). Social support, HIV symptoms, and depression among gay men. Journal of Consulting and Clinical Psychology, 60, 463-469.
Herek, G. M. & Glunt, E. K. (1988). An epidemic of stigma: Public reactions to AIDS. American Psychologist, 43, 886-891.
Kroesen, K., Chin, D., Gallimore, R., Ryan, G., Subramanian, S., Takeuchi, D., Tucker, B. & Weisner, T. (1998). Qualitative tools for multi-method research. (Los Angeles: University of California, LosAngeles, Neuropsychiatric Institute.)
Kulig, J. (1992). Sexuality beliefs among Cambodians: Implications for health care professionals. Health Care for Women International, 15, 69-76.
Los Angeles County Department of Health Services HIV Epidemiology Program (1999, January 15). Advanced HIV disease (AIDS) quarterly surveillance summary. (Los Angeles: Author)
Mason, H. R. C., Marks, G., Simoni, J., Ruiz, M. S. & Richardson, J. L. (1995). Culturally sanctioned secrets? Latino men's nondisclosure of HIV infection to family, friends, and lovers. Health Psychology, 14, 6-12.
Pennebaker, J. W., Kiecolt-Glaser, J. & Glaser, R. (1988). Disclosure of traumas and immune function: Health implications for psychotherapy. Journal of Consulting and Clinical Psychology, 63, 787-792.
Peterson, J. L., Folkman, S. & Bakeman, R. (1996). Stress, coping, HIV status, psychosocial resources, and depressive mood in African American gay, bisexual, and heterosexual men. American Journal of Community Psychology, 24, 461-487.
Schweder, R. A. & Bourne, E. J. (1984). Does the concept of the person vary cross-culturally?(In R. A. Shweder & R. A. LeVine(Eds.), Culture theory: Essays on mind, self, and emotion (pp. 158—199). Cambridge, England: Cambridge University Press.)
Simoni, J. M., Mason, H. R. C., Marks, G., Ruiz, M. S., Reed, D. & Richardson, J. L. (1995). Women's self-disclosure of HIV infection: Rates, reasons, and reactions. Journal of Consulting and Clinical Psychology, 63, 474-478.
Strauss, A. & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. (Newbury Park, CA: Sage)
Triandis, H. (1995). Individualism and collectivism. (Boulder, CO: Westview Press)
Weisner, T. S. (1996). Why ethnography should be the most important method in the study of human development.(In R. Jessor, A. Colby, & R.A. Shweder (Eds.), Ethnography and human development: Context and meaning in social inquiry (pp. 305—324). Chicago: University of Chicago Press.)
Weisner, T. S. (1997). The ecocultural project of human development: Why ethnography and its findings matter. Ethos, 25, 177-190.
Wong, F., Chng, C. L. & Lo, W. (1998). A profile of six community-based HIV prevention programs targeting Asian and Pacific Islander Americans. AIDS Education and Prevention, 10, Suppl. A 61-76.
Wyatt, G. & Chin, D. (1999). HIV and ethnic minority women, families, and communities: An overview. Cultural Diversity and Ethnic MinorityPsychology, 5, 179-182.
Yep, G. (1993). HIV/AIDS in Asian and Pacific Islander communities in the U. S.: A review, analysis, and integration. International Quarterly of Community HealthEducation, 13, 293-315.


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