HIV-Related Stigma Among Persons Attending an Urban HIV Clinic
Relf, Michael V
OBJECTIVES: HIV-related stigma (HRS) is rooted in the sociocultural constructions associated with infectious diseases, particularly in the HIV/AIDS epidemic. The purpose of this study was to determine the level and impact of HRS in a culturally diverse sample of persons attending an urban HIV clinic. METHODS: Using a combination of quantitative (n = 87) and qualitative (n = 27) methods, this study examined the level of HIV-related stigma in four domains: personalized, disclosure-related, negative self-image, and public attitudes. Relationships between HRS, depressive symptoms, and qualify of life were explored. Interviews were used to identify sources of HRS and processes utilized to manage HRS. RESULTS: HRS is a significant problem for persons living with HIV/AIDS. Persons with higher levels of HRS are more likely to experience depressive symptomatology and a lower quality of life than persons who perceive less stigma. CONCLUSIONS: HIV-positive persons experience various forms of stigma in meeting family, societal, and cultural expectations. Nursing interventions can reduce HRS and promote coping as well as connectedness to family, community, and the health care system.
KEY WORDS: Cultural Constructions; Depression; Disclosure; HIV/AIDS; Quality of Life; Stigma.
In AIDS and Its Metaphors, Sontag (1988) eloquently described the emergence of HIV/AIDS as a new dis ease “whose charge of stigmatization, whose capacity to create spoiled identity” is far greater than any other disease in history (p. 16). For centuries, persons at risk for or living with a communicable disease have been stigmatized, labeled as deviants, and shunned by society. Brandt (1988) also highlighted how “AIDS makes explicit, as few diseases could, the complex interaction of social, cultural and biological forces” (p.163), shaping the global response to the epidemic that we experience today.
Throughout history, communicable disease epidemics such as the plague, cholera, polio, and venereal diseases have resulted in infected persons being stigmatized, ostracized, and in some cases, quarantined. The substantial fear the AIDS epidemic has incited has been compounded by the fact that the disease initially affected two groups that were already marginalized: gay men and injection drug users. Hence, all HIV infected persons, and even persons considered to be at risk for HIV infection, have been further victimized by stigmatization and discrimination (Brandt, 1988).
Stigmatization, which may result from a perceived abomination of the body or a blemish of one’s individual character (Goffman, 1963), has characterized societal reactions to the AIDS epidemic. Additionally, AIDS has highlighted the tribal stigmas of race, nation, and religion. It is not uncommon for persons with HIV infection to be labeled as either “innocent victims” or “deserving” as a result of personal behaviors. Since HIV/AIDS is a communicable disease embodied in history and sociocultural constructions associated with normality and deviance, it is necessary to explore the impact of HIV-related stigma on persons living with the virus. The purpose of this study was to explore the phenomenon of HIV-related stigma (HRS) and its relationship to depressive symptoms and quality of life among a diverse sample of persons attending an urban HIV clinic.
BACKGROUND AND SIGNIFICANCE
Stigma is a profoundly complex process that separates individuals, links persons to an objectionable attribute, impacts social status and interaction, and destroys self-identity. Stigma leads to rejection and isolation from society which can be compounded by discrimination, an integral component of stigmatization (Fife & Wright, 2000; Goffman, 1963; Link & Phelan, 2001). The blatant expression of HIV-related stigma and discrimination has decreased in the U.S., yet highly discriminatory views toward persons with HIV still remain prevalent. In 1997, one-fifth of participants in a large multi-state population based study (N = 1,309) reported fearing HIV positive persons, while one-sixth expressed disgust toward infected persons (Centers for Disease Control and Prevention [CDC], 2000; Herek, Capitanio, & Widaman, 2002). However, participants in a more recent study demonstrated a sense of altruism and acceptance by stating that they were more inclined and motivated to help a person because of a positive HIV status (Schulte, 2002).
The HIV/AIDS disease trajectory can be segmented into four distinct phases: at risk, diagnosis, latent, and manifest. Each phase is characterized by strikingly different individual physical, emotional, and psychological experiences, leading to differing levels and types of stigmatization (Alonzo & Reynolds, 1995). Lower levels of perceived stigma and the ability to cope effectively with HIV/AIDS have been associated with greater overall life satisfaction (Gill et al., 2002; Heckman, Somlai, Sikkema, Kelly, & Franzoi, 1997). Depression, often a detrimental side effect of illness, requires a tremendous amount of coping and stigma management on the part of the HIV-positive individual shown to be integral to re-establishing one’s sense of self-identity (Pearson et al., 1999; Stanley, 1999). Persistent experience of stigma also plays a role in decreasing the likelihood of getting tested for HIV due to shame, fear, and denial (Fortenberry et al., 2002; “Multiple Barriers”, 2003).
The emerging patterns of the HIV/AIDS epidemic have shifted requiring a new focus on the poor and underserved (Parker & Aggleton, 2003). Research has demonstrated that culture can be extremely influential on stigma, both for the person stigmatizing and for the person being stigmatized (Fullilove, 1998; Taylor, 2001). Frequently, stigmatization occurs subconsciously and unintentionally. Faith and religious beliefs are major factors that contribute to cultural values, especially within minority communities, leading to stigmatization, alienation, and conflicting emotions for HIV-positive individuals, especially among homosexuals (Fullilove, 1998).
Minimal research has been conducted to evaluate the effects of HIV/AIDS stigma within varying cultural groups. In a study conducted with the Honduran Latino community, findings demonstrated that stigma played a critical role in the transmission of the virus. Due to the central role of the family and religion, their primary support system is lost often causing further mental health disparities (Stansbury & Sierra, 2004). Additionally, the negative impact and change in social treatment of infected persons often leads them to become outcasts. The denial of homosexuality within Latino and African American communities has led to the denial of HIV/AIDS. Simultaneously, some Hispanic persons living with HIV/AIDS often experience double stigmatization not only because of HIV status but (also) immigration status (Bunting, 1996; Takahashi, 1997).
Experiences with stigma often vary dramatically based on gender. Women have been shown to experience high rates of stigma related to stereotypes, social discomfort, and pity from others supplemented by high levels of fear of infecting their children. These outcomes of stigma often lead HIV-positive mothers to live “double lives” of mothers and persons living with HIV (Bunting, 1996; Ingram & Hutchinson, 1999; Moneyham et al., 1996; Sandelowski, Lambe, & Barroso, 2004). Disclosure of HIV status to family, co-workers, and potential partners is heavily influenced by fear of stigmatization and fear of the consequences among rural HIV-positive women (Sowell et al., 1997). Frequently, health care providers are among the first people to know about a person’s HIV status, often before disclosure to family members and close friends (Laryea & Gien, 1993).
This study, part of a larger investigation of retention of persons with HIV in primary care, utilized both quantitative and qualitative methods to explore the complex phenomenon of HIV-related stigma (HRS). The intent of the concurrent, mixed-methods design was to develop a comprehensive understanding of HRS by collecting prevalence and descriptive data with survey instruments and, subsequently, to develop a model with which to theorize influential factors, conditions, and consequences of managing HRS (Strauss & Corbin, 1998). Data-whether they are numbers or narratives-that are trustworthy and interpreted in context may allow vulnerable persons to express a “voice” while contributing to the knowledge base of the discipline (Campbell & Bunting, 1991; Drevdahl, 1995).
A convenience sample of clients attending an urban HIV clinic was recruited to participate in this descriptive, cross-sectional study during the summer of 2003. After obtaining informed consent, the respondents completed a demographic questionnaire and set of study instruments.
Participants received a $10 food voucher or phone card to compensate them for their time in completing the instruments.
To explore the concepts of interest, three reliable and valid instruments were utilized. The HIV-Related Stigma Scale (Berger, Ferrans, & Lashley, 2001), a 40-item, Likert-type instrument was used to determine total stigma scores and subscale scores for personalized stigma, disclosure, negative self-image, and public attitudes. Depressive symptomatology was measured using the 20-item Center for Epidemiologie Studies Depression Scale (CES-D) (Radloff, 1977). To measure HIV-AIDS targeted quality of life, a 34-item instrument developed by Holmes (1999) was administered. The instrument measures nine dimensions of HIV-AIDS related quality of life including overall function, life satisfaction, health worries, financial worries, medication worries, HIV mastery, disclosure worries, provider trust, and sexual function.
All study instruments were available in both English and Spanish. To develop the Spanish versions of the informed consent tool and study instruments, standardized translation methodologies (i.e., forward-backward-forward) were utilized. To assess reliability and content validity of the translated documents as well as cultural relevance and sensitivity, focus groups were also conducted. Participants in the focus groups represented an ethnically and gender diverse sample of Spanish speaking persons from 10 Latin and South American countries. Twenty nine participants completed the study instruments in Spanish.
A theoretically selected, purposive sample of clinic clients was recruited to participate in in-depth interviews. Using a grounded theory approach (Strauss & Corbin, 1998), data analysis was concurrent with data collection. This approach allowed the investigators to theoretically select subsequent participants and focus the interview questions to enrich the diversity of the narratives and elucidate factors that might have affected engagement in care. The interview guide included questions about (a) living with HIV/AIDS, (b) relationships with family and others, (c) disclosure of HIV status to others, (d) perceived obstacles and successes in their lives, and (e) seeking HIV-oriented primary care. The concept of “stigma” was not specifically introduced by the interviewers.
Using a semi-structured interview guide, interviews were conducted in English by two doctorally-prepared nurse scientists. All but one of the interviews were audiotaped. One participant consented to participate in the study but declined to have the session audiotaped for fear of disclosure. This participant, however, allowed the interviewer to take comprehensive, detailed notes; at the end of the interview, the notes were reviewed and validated with the participant. The qualitative interviews varied in length from 25 to 60 minutes. Participants received a $10 food voucher or phone card to compensate them for their time.
All audiotapes and field notes were transcribed verbatim, reviewed per a quality assurance protocol, and imported into the NVivo computer software program (Qualitative Solutions for Research, 1994) for coding and analysis. A panel of experts conducted a constant comparative analysis (Strauss & Corbin, 1998) of the narrative data throughout the study. The panel included two doctorally-prepared nurse scientists with extensive experience in HIV/AIDS, a doctorally-prepared program evaluator, an undergraduate research assistant, and a person living with HIV/AIDS.
Demographics of Study Participants
Participants in both the quantitative (n = 87) and qualitative (n =27) samples were from diverse backgrounds (see Table 1). A majority of participants in both samples were men, yet the samples included women and transgendered persons. In both samples, about one half of the participants were uninsured. Approximately 90% of the participants resided in stable housing, and the majority of participants were either employed or going to school full or part-time. Both samples were ethnically diverse with a large number of participants being foreign-born.
Survey Data: HIV-Related Stigma, Depression, and Quality of Life
HIV-related stigma was identified among this urban sample of HIV-positive persons enrolled in HIV-oriented primary medical care. There were no differences in HRS total or subscale scores different in terms of gender, sexual orientation, or age (see Table 2). However, there were significant negative correlations between number of years since testing positive for HIV and all domains of HRS indicating that the longer individuals are HIV positive, the less stigma they perceive.
For all domains except disclosure, Hispanics had significantly higher mean stigma scores than other racial/ethnic groups. Likewise, persons who were foreign born had higher mean stigma scores than participants who were born in the U.S. with the exception of on the disclosure subscale.
To determine the variables associated with HIV-related stigma, multivariate analyses were conducted using the significant variables identified from bivariate analyses. For total HIV-related stigma, race/ethnicity and years positive predicted 23% of the variance. Likewise, these two variables also predicted approximately 24% of the variance for personalized stigma and negative self-image. Number of years since testing positive was the only variable that significantly contributed to disclosure-related stigma and public attitudes predicting 6.6% and 10% of the variance, respectively (see Table 3).
When examining the relationship between HRS and depressive symptomatology, results showed that depressive symptoms are associated with all domains of HIV-related stigma, except disclosure. Likewise, higher levels of HIV-related stigma were associated with decreased HIV-related quality of life, particularly in the domains of overall function, health worries, and disclosure worries.
Dimensions of stigma. The main factors that emerged from the narrative analysis that affect HIV-positive persons engaged in HIV-oriented primary care were stigma, obstacles, health literacy, and connectedness. For these participants with HIV, stigma emerged as an insidious deterrent to integrating HIV primary care (e.g., medications, clinic appointments) into daily life. Expressions of stigma in the interview narratives that were condensed into categories aligned with the four dimensions of the HIV Stigma Scale (Berger et al., 2001): disclosure concerns, personalized stigma, negative self-image, and concern with public attitudes toward people with HIV.
Disclosure concerns. The issue of stigma most often emerged when participants were asked about disclosing their HIV serostatus to others. Disclosure carried the risk of emotional injury, loss of relationships, and/or termination of one’s job. Hence, some participants expended considerable energy to keep their serostatus a secret. For example, one Latino participant had not yet disclosed to his partner for fear of losing the relationship. When asked how he kept such a secret while adhering to his antiretroviral medications, he explained:
Well, I got my own privacy. I keep my own privacy from anybody, even when I was at home with my mom. My space is my space . . . ’cause my medicine is someplace safe. So I try to get it when she’s not in my space.
To avoid inadvertent disclosure, he also removed the labels from the medication bottles.
Disclosure in the workplace raised anxieties about job discrimination for an African-American man:
. . . it was kind of hard because nobody at work knew, so if I was taking medication while I was at work, I would not let anybody know I was taking anything. If I had doctor’s appointments, I had to try to work the schedule out so it was just a regular day off, and they never knew anything . . . I was also always afraid of losing my job.
The struggle to balance privacy on the job with the need to attend clinic appointments sometimes led to unexpected, but welcome, outcomes. An African-American woman recounted:
My boss, he knows because of my doctor’s appointments . . . a lot of times, I had doctor’s appointments, and sometimes I had to bring verification back that I had been to the doctor. So one day, I brought the card back for my next appointment. And he said, “You go to [this HIV clinic]?” I said, “Yes, sir.” He said, “Can I talk to you in private?” So we talked for a good while, and he was very understanding and I haven’t heard nobody else on my job say anything about it . . . I was kind of scared about if I was gonna lose my job, but he said no.
Participants did not always have positive outcomes associated with disclosure, however. One woman described the consequences of her disclosure experience as “traumatic” and asserted, “What is personal is personal . . . whatever one’s medical condition-be it cancer; be it HIV . . . whatever, is only totally and absolutely one’s own business. So knowing whether one is HIV positive or not, [it’s] how that information may be abused.” As a result of her painful experience with disclosure, this woman said she “keeps the company of very few people nowadays.”
Public attitudes. Another dimension of stigma involved how participants perceived attitudes in the general public. Some felt that “[President] Bush was not doing enough for persons with HIV/AIDS in this country” or that “people are prejudiced” and will gossip about people with HIV. Others were fearful of “having a doctor stigmatize you or make assumptions because of HIV or not treat you well.” Many participants felt that people who were ill-informed caused considerable difficulties. One man recalled the reactions of his coworkers:
. . . one of my coworkers . . . was diagnosed with it. And the whispers . . . you see people running away like they’re going to get something from him just by standing too close or by talking to him and you hear people saying, “Well, you have AIDS and you can’t touch that cup or you can’t touch that glass.”
Negative self-image. The prevalent attitude that some persons with HIV were “deserving” of their infection through their behaviors, as opposed to being “innocent victims”, may have contributed to the development of a negative self-image. An Asian man had not wanted to reveal his HIV status to anyone because of the “shame”. Yet, he expressed “extreme guilt” about having extramarital sex and didn’t want to continue lying; he didn’t like the “secrecy and deceit.” Shame and self-doubt were recurring topics. One African-American woman who feared telling her daughters about her HIV infection said, “They didn’t really know I was sick because I kept it from them . . . Shame . . . I was scared to tell them. I didn’t know how they would react. It’s just like I disappointed them.”
Negative self-image passages revealed insights into the differential influences of church and spiritual life for some persons with HIV/AIDS. One African woman feared that the members of her church would cast doubt upon her character:
Interviewer: Ok, and does your pastor know that you’re HIV-positive?
Participant: No. Nobody knows . . . I don’t want anybody in church [to know]. Because sometimes when you come to church, they always say . . . you come in, people might be thinking, looking for some bad evil, that I’m bad.
Yet when this woman discussed her spiritual relationship with God, she never implied that God perceived her as tainted or unworthy. Her spirituality inspired her and provided support. She exclaimed “God help me [sic] . . . I think I learned that strength by Jesus Christ.” Similarly, an African-American woman revealed how God’s help was without judgment or disgrace:
. . . I was praying or I would only pray or ask for God’s help . . . but today, I talk to God on a regular basis. Thank him everyday, any time of the day, I will thank him. And I’m just letting God guide me right now.
Although usually perceived as a support system, participants were wary of church members who might ostracize and contribute to feelings of blame, shame, and worthlessness.
Personalized stigma. There were stories of the direct impact that stigma had on participants’ lives. Participants feared not only losing their jobs but (also) the love and support of family members and friends. An African-American man felt that due to unrealistic fears of HIV transmission, his girlfriend wouldn’t want him to “come around” anymore and that he would not be allowed to play with the children. Another man described having only one friend left in his life. He had not told the friend of his HIV status “Because we may not be friends. ” As a consequence, he was not able to obtain the support he needed during times of illness. When asked what he needed to support his HIV care, he said, “I just need friends that could talk to me . . . I just, I get very lonesome, (pause) ‘Cause I live by myself. I see my friend, and we talk and talk. But he doesn’t know what I have . . .” (he was crying at this point).
The effects of HIV-related stigma on the receipt of HIV primary care services were insidious. One African-American woman asserted that quality care was not guaranteed when accessing services in a minority-managed community organization:
Yes, I once tried to go to another clinic, but I’m not gonna call its name. I went there, and I had the blood work done and everything and I just didn’t particularly care for it. It was an organization that’s run by blacks and all the patients are black. This virus is not centered around blacks . . . I’m a human being first that happens to be black. So anyway, I came back here where I’m comfortable.
For many of the minority participants in this study, quality health care was characterized by respectful, supportive, and compassionate care. Interactions with clinic providers provided the sense of comfort and trust; quality care was not perceived to be solely dependent upon health care providers being members of minority communities.
The narrative data also revealed stigmatization that was not specifically HIV-related. The participants recounted how homophobia and racism had been obstacles in their lives. They also told stories about how their trust of health care providers was undermined by unprofessional behaviors that left them feeling demeaned, disenfranchised, or devalued. Public attitudes of disapproval specific to transgendered persons also emerged. Participants who had been in prison or were struggling with substance use were also facing obstacles due to preconceived notions about their personal character.
When the participants spoke about occasions when they felt supported, accepted, and safe, it was most often when a friend, family member, or health care provider took the time to listen to their story, validate their experience, advocate for their needs, and respect their autonomy. When asked how the clinical care could be improved, one man replied:
Get rid of this terrible problem with AIDS and HIV Get people to get a better understanding that they don’t have to close the door in your face because of HIV or AIDS . . . learn a little more about it before you know you start shutting people out. Try to understand people and see how they feel and, you know, see if they can help, not financially but, you know, just be there for them . . . You don’t want sympathy. That’s the last thing you want. You want somebody you know you can talk to.
In summary, these participants experienced HIV-related stigma that not only impeded personal disclosure of their HIV serostatus to others but (also) eroded their self-esteem and obstructed their willingness to seek treatment for their infection. The participants were aware of prevalent public attitudes about persons with HIV/AIDS and appealed to be recognized as human beings who happen to have HIV infection.
The respondents in the survey sample and the participants in the interviews reported experiencing HIV-related stigma. Stigma was not found to vary by gender, sexual orientation, or age, suggesting that HRS may have a distinct and pervasive influence on the lives of a wide variety of persons with HIV infection. However, as the number of years since testing HIV positive increased, perceptions of stigma were significantly lower across all stigma domains. Upon receiving an HIV positive test result, it is reasonable to postulate that individuals would initially be personally affected by public attitudes, experience a lower self-image, and fear the disclosure of their serostatus to others. As years pass, however, persons with HIV are likely to increase their knowledge of HIV disease, interact with other infected persons, and eventually depersonalize the ignorant comments and misconceptions of others.
It is possible that the increased stigma among HIV-positive Hispanic respondents may be a result of cultural incongruence with perceived routes of viral transmission (e.g., homosexual sex) or consequences of infection (e.g., impact of having children). For Hispanic respondents, it may have been that an HIV diagnosis was perceived as more than a personal tragedy; one’s infection may represent a stigma that affects the whole family.
Race/ethnicity and number of years since testing HIV positive were found to be significant contributors to stigma, particularly for personalized stigma and negative self-image. Furthermore, stigma was found to be associated with depressive symptomatology; although the associations were not strong, they are theoretically and clinically important. HIV positive subjects were found to have a four-fold increased risk for depressive disorders than noninfected persons (Morrison et al., 2002), and Heckman and colleagues (2004) reported that 60% of their HIV positive sample had significantly elevated depressive symptoms.
Very few of the interview participants introduced the word stigma; rather, stigma emerged as they recounted incidents in which they felt ostracized, diminished, or disrespected because of their HIV serostatus. It is possible that many persons with HIV have limited opportunities to discuss their concerns about HIV disclosure and explore their painful experiences with public attitudes. However, given the chance, these men and women were able to describe how HIV-related stigma had stunted intimate relationships, threatened support systems, and contributed to declines in their overall functioning and quality of life. Furthermore, their satisfaction with health care services was undermined by providers who either failed to address HRS or contributed to it.
The ability to detect gender differences may have been limited by the small number of female respondents in this study. The use of a one-time interview may not have allowed for the rapport and trust necessary for participants to adequately explore and express sensitive feelings about personalized stigma (e.g., shame, blame, feeling dirty) and negative self-image. Future studies might include serial interviews for purposes of confirmation and completeness to further enhance knowledge and understanding of HRS.
Our findings suggest that nurses and other health care providers need to assess for dimensions of HIV-related stigma and the impact on individual clients. Since the dimensions and impact of stigma are likely to change as a person has more experience living with HIV, interventions need to be tailored. Providing clients with opportunities to discuss their perceptions of stigma in one-on-one or group settings may create a “safe space” to talk, improve prevention and adherence outcomes, and alleviate the deleterious effects of HRS on clients’ self-images. Most importantly, this diverse sample of persons with HIV expressed a need to be respected, listened to, and treated with compassion by health providers. Further research is needed to ascertain the specific factors affecting the differential influences of HRS on various minority populations so that appropriate interventions may be developed.
Persons with HIV infection experience high levels of HIV-related stigma that may be associated with poorer mental health, impaired daily functioning, and an overall lower quality of life. HRS may also contribute to an individual’s reluctance to disclose their HIV status to family, friends, and sexual and/or needle-sharing partners. Impeding openness and disclosure may result in diminished social support and increased opportunities for the transmission of HIV to others. Health care providers may reduce HRS by recognizing the impact of stigma and demonstrating nonjudgmental attitudes and respectful, caring actions when encountering clients with HIV infection.
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Michael V. Relf, PhD, APRN, BC, AACRN, CCRN
Kevin Mallinson, PhD, RN, AACRN
Kathy Dolan, BS
Debra Dekker, PhD
ACKNOWLEDGMENTS: Funding Source: This research was supported by grant number 5-H97HA00207-02 from the Health Resources and Services Administration (HRSA) Special Projects of National Significance (SPNS) program. Contents are solely the responsibility of the authors and do not necessarily reflect the official view of HRSA or the SPNS program.
The authors would like to acknowledge Mans/Shah and Miguel Mejia for assistance with recruitment of qualitative study participants, Anna Ford for her coordination of qualitative data transcription, and Changfu Chien, PhD for assistance with quantitative data analysis.
Michael V. Relf, PhD, APRN, BC, AACRN, CCRN, Assistant Professor and Chair, Department of Professional Nursing; Kevin Mallinson, PhD, RN, AACRN, Assistant Professor, and Lora Pawlowski, Student, Health Systems Administration Program, are all with the School of Nursing and Health Studies, Georgetown University, Kathy Dolan, BS, Retention Care Coordinator and Debra Dekker, PhD, Director, Outcomes & Evaluation, are both with the Whitman -Walker Clinic. All are in Washington, DC.
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