HIV Stigma and Discrimination: Enduring Issues

HIV Stigma and Discrimination: Enduring Issues

HIV Stigma and Discrimination: Enduring Issues

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Since the first documentation of cases of HIV/AIDS, stigma and discrimina- tion have been serious and burdensome issues for people living with HIV and for those who care for them. Much has been learned about AIDS stigma, yet to date, a lasting decline in levels of stigma remains elusive (Poindexter & Lynch, 2010). In Goffman’s (1963) seminal book, stigma is defined as an undesirable or discrediting attribute that an individual possesses that reduces that individual’s status in society; thus, an individual or group is perceived as being deviant, unwanted, and often derogated. Stigma may exist due to an individual attribute, such as disfigurement, or it may persist as an attitude toward the behavior of a group, such as injection drug users. Stigma often arises when there is a perceived violation of communal beliefs or values, such as bartering sex or sexual contact outside of marriage (Swendeman, Rotheram-Borus, Comulada, Weiss, & Ramos, 2006). Such dynamics are com- monly felt by individuals living with HIV/AIDS (PLHA). In fact, discrimina- tory behaviors may be enacted on the part of governments, individuals, or communities (Gant, 2010). Secondary stigma may be experienced by those who have contact with PLHAs as has been the case for HIV/AIDS caregivers, partners, family members, and medical professionals providing care to those with AIDS (Brown, MacIntyre, & Trujillo, 2003).

Stigma due to HIV/AIDS is often layered over previous manifestations of stigma. Therefore, stigma toward PLHA is built over stigma toward sex work- ers, homosexuals, the economically impoverished, people of color, and injec- tion drug users (Parker & Aggleton, 2002; Voisin, Bird, Shi Shiu, & Kreiger, 2012). Stigma associated with these social and structural factors has the unfor- tunate effect of extending and deepening AIDS stigma. Sources of AIDS stigma often include fear of disease, contagion, and death. Many of these fears are unwarranted and are based on misinformation and ignorance about disease transmission (UNAIDS, 2000). While stigmatizing behavior may take the form of avoidance of people with HIV, fear of interaction with those who are perceived to have HIV, and denial of access to resources or services due to HIV status, the fear of stigma and discrimination may also be internalized by the PLHA and their family members. Such a consequence may lead to withdrawal, lack of social engagement, and ensuing depression. In fact, the reciprocal and inverse relationship between stigma and social support has been documented in the literature (Poindexter & Linsk, 1999a, 1999b).

4 Introduction

Much has been discussed about HIV stigma. Regardless of this informa- tion, we are sure of a singular and enduring phenomenon: stigma has a deep and deleterious impact on health. AIDS stigma has adverse consequences for preventive behaviors, such as condom use, HIV test–seeking behaviors, will- ingness to disclose serostatus, care-seeking behaviors, adherence to treat- ment, the quality of care provided to PLHA, and social support received (Rintamaki, Davis, Skripkauskas, Bennet, & Wolf, 2006; Land & Hudson, 2004). Silence and denial generate barriers to treatment and expand poor health outcomes for the infected. Those residing in United States and other countries around the world have been attacked; in some extreme cases, those with AIDS have been murdered when disclosing their health status and advocating for medical care (Brown et al., 2001). Lack of social support, and the presence of mental health symptoms such as depression often relate to feelings of isolation and stigmatization both in the United States and around the world (Swendeman et al., 2006). Moreover, depression has been found to be significantly associated with both internalized shame and perceived stigma, while enacted stigma has been associated with being gay or bisexual, being symptomatic, and bartering sex (Swendeman et al.).

Investigations of stigma vary widely. A substantial number of studies have designed interventions for increased tolerance of PLHA, but a many of these studies have methodological shortcomings. The use of proxies, such as case scenarios, videos, and hypothetical encounters with PLWAs, has been common procedure in lieu of direct contact with persons with HIVAIDS. Such methods have yielded less attitudinal tolerance (Brown et al., 2001). Other study designs have not tested actual stigma reduction in the field, rely- ing primarily on participant self-report. As a result, the validity of findings remains questionable. In addition, reliability and validity of stigma measures vary considerably from one investigation to another. While some studies have used validated instruments, others rely on a single question to measure the complex construct of stigma. Finally, few studies have reported a long- term effect of antistigma interventions beyond 6 months postintervention (Brown et al., 2001).

Differences in disclosure and felt stigma among various groups have been studied as well. Findings from one prominent study revealed that about half of respondents felt stigmatized (Emlet, 2006). Feelings of shame, isolation, and stigmatization rates remain fairly constant regardless of age or gender. Younger people were more likely to fear losing their jobs due to stigmatization and disclosure of having HIV/AIDS, while older persons (50+ years) were less likely to disclose serostatus to neighbors, friends, and relatives out of fear of stigmatization (Emlet, 2006). Research continues to indicate that persons of color living with HIV are more likely to report feel- ing stigmatized due to their serostatus than are their white counterparts (Emlet). Gay or bisexual youth who were also HIV symptomatic or AIDS diagnosed report experiencing more HIV stigma than their heterosexual

Introduction 5

peers (Swendeman et al., 2006). Such findings support the layering theory of stigmatization where HIV stigma is built on a foundation of racism and homophobia (Parker & Aggleton, 2002; Voisin et al., 2012).

It is equally important for service providers and scholars in the social services to be aware of protective factors that are associated with lower levels of HIV stigma. Investigations repeatedly point to such protective fac- tors as strong social support from friends, lower levels of depression, a longer time since HIV diagnosis, and a higher educational level. Information about the beneficial effects of perceived social support from friends and other sources can assist in providing guidance for those working to decrease the negative impact of HIV stigma among HIV-positive individuals (Galvan, Davis, Banks, & Bing, 2008). Recommendations on a macro level to decrease HIV/AIDS stigma include targeting whole communities for antistigma inter- ventions and the utilization of national campaigns against HIV stigma. Decreasing AIDS stigma is a vital step in reducing the epidemic. Given this information it is critical that lasting interventions to reduce HIV/AIDS stigma be identified and implemented.

This issue continues to explore the phenomenon of HIV stigma on both the local level and the global level. Once again, we see that those who are at greatest risk for being stigmatized are among the most vulnerable. Beginning in the West, our first article by Erik Storholm and colleagues examines the association between multiple minority statuses, HIV stigma, and mental health issues. Supporting the layering theory of stigma, authors note that there is a synergistic relationship between multiple minority statuses including discrimi- nation, marginalization, and HIV stigma. Those reporting greater HIV stigma also experience poorer mental well-being. Investigators’ analyses reveal that to fully address mental well-being, we must both address factors such as depression and loneliness head on and advocate to diminish structural inequalities. Practice-specific guidelines are given.

Bruce and colleagues addresses the circumstances surrounding heavy marijuana use among young gay and bisexual men. The investigators used mixed methods to examine the role that elevated marijuana use may play in the lives young gay and bisexual males living with HIV/AIDS. Almost a quar- ter of their survey sample reported using marijuana daily. Significant associa- tions were noted with at least weekly use and included using to relieve stress and using while alone. These factors were also emphasized by participants in semistructured interviews. Their findings present important implications for self-care strategies for this young population of gay and bisexual men.

Turning to another part of the world, McCleary-Sills and colleagues conducted a study related to psychosocial care needs for vulnerable children in Uganda and South Africa. Based on interviews and focus groups with children, families, other caregivers, and professional staff, they found that stigma and discrimination were major concerns along with disclosure issues and grief. In this investigation, the authors report that all respondent groups

6 Introduction

highlighted the extent of HIV-related stigma and that this stigma not only had negative effects on the children but also was associated with how chil- dren and families related to HIV disclosure issues. The authors suggest sup- portive services including counseling and group support that may assist in resolving these issues. Importantly, the authors propose that interventions interface with the children’s “circle of care” to reduce stigma.

A quasi-experimental, mixed-methods study is presented by Ndzibidtu and colleagues. The authors assessed whether an experimental group of assisted orphans resided with their family caregivers and remained in school longer than those not receiving services. As with many programs serving orphans, ensuring educational opportunities for orphaned children is critical in mitigating HIV-related vulnerability, including stigmatization. In fact, chil- dren who drop out of school are frequently exposed to socioeconomic dif- ficulties, including trauma and abuse. Findings suggest that when compared with orphans not receiving services, those receiving services resided for longer periods of time with their family in a family home and had greater school success, including remaining in school, completing higher school grade levels, and receiving more school certificates. The primary reason for school dropout was difficulty in paying school fees and expenses. Perhaps one indicator for such poverty and vulnerability is that over half the caregiv- ers were widowed due to the devastating effects of HIV/AIDS in the com- munity and over two-thirds of all caregivers had two or more orphans living in their home. Implications for services are discussed in light of these findings.

James and colleagues present a qualitative study of people living with HIV/AIDS in Kerala, India. Through interviews with both men and women of mainly lower socioeconomic levels, the authors bring to light the complex issue of stigma in Kerala. Physical appearance plays a significant role in determining the social acceptance of individuals with HIV. Further, inter- viewees discussed their surprise of being stigmatized by individuals with biomedical knowledge of HIV. It seems that stigma in Kerala is more a factor of social context and moral process than one of education. Results point to the need consider both gender and social class in the development of stigma interventions.

Poindexter and a team of U.S. and international investigators conducted a qualitative analysis of HIV stigma for African immigrants and refugees in New Zealand. The refugee participants in this study who had been forced to leave their homelands had come to New Zealand with existing trauma and loss, and they reported further stigmatization because of their HIV status. They authors note that “HIV stigma holds them hostage,” in terms of social and community support as well as of overt and covert discrimination in employment, community activities, and health care. Among the issues they describe are isolation, perceived judgment of others, and loss of privacy and control both in the larger community and among fellow refugees. The

Introduction 7

implications of the study include both programmatic and supportive inter- vention within the unique cultural context they come from and live within.

Last, we present a book review by Anne Marie Fostnacht on a work titled Older Adults With HIV: An In-depth of an Emerging Population. We hope this set of articles updates the readership about stigma and discrimina- tion across the globe and the life cycle. HIV stigma, discrimination, and mar- ginalization are indeed enduring and experienced worldwide in the lives of people living with HIV and those who care for them.

Helen Land, Ph.D., LCSW Co-Editor

Nathan Linsk, Ph.D. Co-Editor

REFERENCES

Brown, L., MacIntyre, K., & Trujillo, L. (2003). Predictors of HIV-related stigma among young people living with HIV/AIDS education and prevention. AIDS Education and Prevention, 15(1), 49–69.

Emlet, C. A. (2006). “You’re awfully old to have this disease”: Experiences of stigma and ageism in adults 50 years and older living with HIV/AIDS. The Gerontologist, 46(6), 781–790.

Galvan, F. H., Davis, E. M., Banks, D., & Bing, E. G. (2008). HIV stigma and social support among African Americans. AIDS Patient Care STDs, 22(5), 423–436.

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Poindexter, C. C., & Linsk, N. (2010). Afterward: Looking back, looking forward in HIV social work. In Cynthia Cannon Poindexter (Ed.), Handbook of HIV and Social Work: Principles, Practice, and Populations (pp. 327–332). New York: John Wiley & Sons, Inc.

8 Introduction

Rintamaki, L., Davis, T., Skripkauskas, B. A., Bennet, C., & Wolf, M. (2006). Social stigma concerns and HIV medication adherence. AIDS Patient Care and STDs, 20, 359–368.

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