Understanding the impact of stigma on older adults with HIV
By Charles A. Emlet, PhD
Despite being 30 years into the AIDS epidemic, HIV-related stigma remains a significant problem for many persons living with HIV/AIDS (Logie & Gadalla, 2009; Wolitski et al, 2009) and is a dilemma that disproportionately affects HIV-infected older adults (High et al, 2012). HIV stigma has been associated with many negative psychological states and poor health outcomes, including poor medication adherence and disclosure difficulties (Grov, Golub, Parsons, Brennan & Karpiak, 2010; Vanable et al, 2006), loneliness and depression (Grov et al), and a lower likelihood of engaging in health-seeking behaviors (Cahill & Valadéz, 2013). By improving our understanding of HIV stigma among older adults — and identifying factors that impact stigma in both positive and negative ways — we can facilitate the efforts of HIV-infected older adults to better cope with the consequences of stigma and more accurately inform programs and policies that reduce the impact of stigma and promote positive change. This article will define the various ways in which HIV-related stigma evolves and discuss the impact of stigma-related manifestations on older adults. Implications for future research and practice are also discussed.
HIV stigma, defined as prejudice, discounting, discrediting and discrimination directed towards persons perceived to have HIV or AIDS (Herek et al, 1998) is a complex process. Earnshaw and Chaudior (2009) suggested that stigma manifests in a variety of ways, including enacted, internalized and anticipated stigma. Enacted stigma represents the extent to which an individual experiences prejudice and/or discrimination emanating from others. Internalized stigma is the extent to which those negative attributes and beliefs about people living with HIV are endorsed and accepted internally. Anticipated stigma represents the extent to which a person living with HIV expects to experience enacted stigma (Rueda et al., 2012). These components of stigma may impact older people differently, depending upon their gender, sexual orientation and social networks. It is critical that we understand the multi-faceted elements of stigma and their differential impact on the lives of HIV-infected older persons so that social and individual interventions can be conceptualized, implemented and evaluated.
The Primary Elements of HIV Stigma and Their Impact on Older Adults
Enacted stigma involves the behaviors and attitudes of others that include prejudice and discrimination. These manifestations may be directed specifically at a person living with HIV or communicated more generally, such as expressing one’s feelings about homophobia or fear of contagion. In a study of HIV-positive older adults in the South, Foster and Gaskins (2009) reported that while many participants did not experience stigma directly (due to non-disclosure as a stigma management strategy), they frequently heard disparaging remarks from others about people living with HIV, which in turn had negative impacts on them. Emlet (2006a) found that among older adults living with HIV/AIDS in the Pacific Northwest, one-third believed that people avoided them due to their HIV disease; 50 percent believed people were uncomfortable being around them because of their HIV-positive serostatus.
The judgments of others through enacted stigma have serious impacts on the psychological well-being of older adults living with HIV. Internalized stigma negatively impacts self-esteem and psychological well-being. Psaros and colleagues (2012, p.757) studied HIV positive older women and found profound experiences of internalized stigma resulting in the belief that no one would enter into an intimate relationship with them, describing themselves as feeling “dirty.” Similarly, Emlet’s (2006) study of stigma among older adults found that 48 percent felt ashamed of their illness at least some of the time. Internalized stigma is associated with negative psychological states. In a sample of 914 HIV positive older adults in New York City, Grov and colleagues (2010) found that HIV-associated stigma was positively and significantly associated with depression.
Older adults experiencing anticipated stigma can engage in stigma management strategies that, over time, may be maladaptive. Some research has found that non-disclosure of one’s HIV-positive serostatus is used to manage stigma among older people. Foster and Gaskins (2009) noted that older adults used non-disclosure as a means to manage anticipated stigma by not seeking care in the area in which they lived to avoid disclosure of their status. Wallach and Brotman (2012) recently studied older adults living with HIV in Quebec, Canada. They found that older adults hid their HIV-seropositive status from their family members, including adult children, to reduce anticipated stigma. Unfortunately, by limiting disclosure due to anticipated stigma, one limits the potential for greater social support, which can serve as a protective factor against stigma and other negative consequences of HIV. The interplay between stigma, disclosure and social support is clearly complex and requires additional research.
Older people, in addition to their experiences of HIV-related stigma, also face the potential for what Reidpath and Chan (2005) refer to as layering or the co-occurrence of multiple stigmatizing attributes. Emlet (2006b) studied experiences of HIV stigma and ageism among older HIV positive adults in Washington State. The majority (68 percent) had experienced co-occurring stigmas of ageism and HIV stigma. Moreover, many study informants discussed the internalizing of ageist beliefs or what has been termed intrinsic ageism. Thus ageism, as well as HIV stigma, can have enacted as well as internalized properties. High and colleagues (2012), in their report of the state of the knowledge on aging and HIV, identified this phenomenon of layering as a critical issue needing further investigation.
While research has shed considerable light on the impact of HIV stigma on older people, several studies are identifying characteristics that may serve as protective mechanisms against stigma in persons aging with HIV. These characteristics can be intrapersonal, interpersonal and social. One element that is a protective factor against stigma is mastery, which Pearlin and Schooler defined as the extent to which you believe your life circumstances are under your control (Pearlin & Schooler, 1978). In a recent study of 378 adults ≥ 50 years of age living with HIV in Toronto Ontario, Emlet and colleagues (2013) found increased mastery to be associated with decreased stigma. Moreover, mastery was associated with diminished stigma across all three types of stigma (enacted, internalized and anticipated). Other studies have found mastery to mediate the effects of stigma in HIV-positive populations (Rueda et al, 2012).
Research has also noted the importance of social support in managing stigma among people with HIV in general and older adults specifically. In their meta-analysis of the stigma literature, Logie and Gadalla (2009) found less social support to be associated with greater experiences of HIV stigma in the 24 studies they analyzed. Slomka and colleagues (2012) studied characteristics that long-term survivors used to cope with HIV. Social support from various sources was a key component that long-term survivors’ used in the management of their disease. Using data from the Ontario HIV Treatment Network Cohort Study, Emlet and colleagues (2013) found emotional and informational social supports to be protective factors against all three types of HIV-related stigma in older Canadians. In the same study, the authors noted that certain demographic characteristics were also associated with decreased stigma. For instance, gay and bisexual men had significantly lower stigma scores than either women or heterosexual men.
Research has documented the negative impact of HIV stigma on older adults and the consequences of the various elements that comprise HIV stigma. Research is also beginning to identify a variety of factors associated with decreased stigma that could serve as protective factors against stigma. These characteristics include intrapersonal characteristics such as mastery and coping, as well as more interpersonal dynamics such as social support. Future research involving the integration of these processes into standardized interventions could potentially improve the lives of older persons living with HIV/AIDS. Additionally, understanding why gay and bisexual men experience lower levels of stigma than their female and heterosexual counterparts may provide a clearer picture of the personal elements that exacerbate or lessen HIV stigma.
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About the Author
Charles A. Emlet, PhD, MSW, is professor of social work at the University of Washington Tacoma and a fulbright visiting research chair at McMaster University in Hamilton Ontario, Canada. He is affiliate faculty with the University of Washington Center for AIDS Research and has been working in the field of HIV since 1987. He has been the principal investigator on numerous studies focusing on HIV and aging funded by the John A. Hartford Foundation, the National Institutes of Health, the University of Washington and most recently Fulbright Canada.