HIV Stigma Among Black Women in the United States: Intersectionality, Support, Resilience

Follow up on: Aggleton P, Parker R. Moving beyond biomedicalization in the HIV response: implications for community involvement and community leadership among men who have sex with men and transgender people. Am J Public Health. 2015;105(8):1552–1558.

In an AJPH report published two years ago, Aggleton and Parker argued that it is vital to promote community ownership, political commitment, solidarity, and respect for differences, not as competing values, but as part of the ultimate solution to HIV.¹ We agree. While they focused on men who have sex with men and transgender people, we believe it is essential in this historical moment to extend their argument to embrace Black women. Here we provide our rationale and proposed approach.

INTERSECTIONALITY AND RISK

Heterosexual Black women accounted for 61% of new HIV diagnoses among US women—16 times the diagnosis rate of White women.² Other studies indicate that Black women experience higher morbidity and mortality when compared with their White counterparts.³ Gender and race are strongly linked to health outcomes including disparities along the HIV care continuum. Yet, much of the HIV prevention and intervention work for Black women has failed to focus on the multifaceted nature of health and well-being for women of color. In much of the existing HIV work, the issues of race, gender, and socioeconomic status are largely treated as discrete categories rather than interconnected issues. As a result, gender and race are often isolated and treated as independent contributors to health outcomes. This may be particularly detrimental to the understanding of risk, disease transmission, and health outcomes among Black women who hold multiple identities, statuses, or conditions simultaneously (e.g., race, gender, ethnicity, and socioeconomic status).

Addressing current HIV-related disparities and the impact of these disparities on Black women requires that intersectionality be taken into account.⁴ Although not a new approach, an intersectional approach (rooted in Black feminist social justice work) to HIV prevention and intervention views race, class, and gender as categories that interact with systems of social and power relations in society.⁴ Our understanding of the factors that have an impact on the health of Black women is limited when we regard these categories as distinct or static identities and add or subtract them from concepts of interest. Intersectionality conceptualizes these categories as mutually constructed and fluid, continually shaping and shaped by dynamics of power.

ROLE OF STIGMA IN POOR OUTCOMES

Race and ethnicity have an associated stigma that can contribute to general mental and physical health disparities. Individuals with multiple co-occurring devalued social identities often experience stigma, including acts of discrimination such as profiling, bias in hiring, and microaggressions. These experiences may be more frequent and severe when a Black woman has additional devalued identities, such as a history of incarceration, immigration, sexual minority orientation, transgender identity, or substance use. Causing further detriment, perceived and experienced stigma resulting from multiple co-occurring devalued social identities pushes many to keep their statuses hidden, places Black women at increased risk of HIV infection, and forces them to stay at home rather than engage in services along the HIV care continuum. This can compound the negative effect of stigma on medication adherence and, ultimately, health outcomes. Seen in a more positive light, this body of research suggests that if we examine resilience among Blacks living with HIV and use these strategies in implementing interventions to reduce internalized stigma, we may improve health outcomes for this population.

BLACK WOMEN AND RESILIENCE

A number of factors have been found to reduce stigma and promote resilience in Black women. Our own experience with resilience comes from adapting the International Center for Research on Women’s HIV Stigma Toolkit for Black women living with HIV and testing its effectiveness in two distinct cities in the United States: Chicago, Illinois, and Birmingham, Alabama.⁵ The workshop involved the stigma-reduction components of education, contact with affected persons, coping skills, social support, active learning, and modeling methods of navigating stigmatizing situations, promoted through trigger video and discussion segments. These techniques were tailored specifically for the intersectional experience of Black women living with HIV—discussions attended to issues of health, race, and gender. The group format led to increased social support that was robustly tied to reductions in stigma. Above all, our recent analyses have demonstrated that reductions in stigma and increases in social support were tied to viral suppression.⁶ Our studies have suggested that social support is critical in providing Black women with opportunities to receive validation about their experiences of gendered racism. Social support can encourage women to openly discuss their experiences of stigma and discrimination and, in doing so, actively avoid the suppression of thoughts, rumination, and distress that often accompany perceptions of stigma.

Self-efficacy, or the perception of having control over one’s circumstances and perception of capability to effectively carry out actions, is another mechanism that Black women have used to develop resilience to stigmas. People who feel in control of their lives may be more likely to engage in health-affirming activities, seek help, and practice a lifestyle that promotes health.

Building trust and empowerment are also important in resilience. Empowerment manifests through racial pride, consciousness-raising groups, and economic empowerment. This involves establishing opportunities for Black women to receive support by increasing resources to build community capacity to address challenges as they arise, as well as the development and deployment of skills, knowledge, and resources that facilitate these efforts. A key component to empowerment efforts is community involvement at every stage, from program development through implementation. In our work, community-based participatory research models have suggested increased relevance of materials, bidirectional learning, and empowerment as beneficial products.

Spirituality is also a coping resource that increases resilience to stigma. Spirituality, whether formal or informal, often provides Black women with a sense of meaning or purpose in the world, a reason for living, and the feeling they have a “second chance.” Wingood et al. found that their Sisters Informing Sisters About Topics on AIDS (SISTA) intervention, developed with close community-based organization assistance, was effective when implemented in Black churches, increasing Black women’s social capital in the church.⁷

Lastly, self-esteem, defined as the overall evaluation of one’s worth, is another important resource to attain resilience to stigmatizing experiences. Individuals with high self-esteem may experience less stress, demonstrate adaptive coping behaviors, and seek and obtain more social support. Effective strategies to enhance self-esteem among Black women include connecting with their ethnic heritage to instill pride and employing themselves in culturally relevant activities as well as cultural practices, beliefs, values norms, and ideologies components. These practices can come about through activism, community center membership, and other forms of social group participation.

THE WAY FORWARD FOR BLACK WOMEN

Intervening on HIV-related stigma for Black women can have far-reaching impacts. As the research suggests, reduced stigma has the potential to improve prevention and intervention efforts and ultimately reduce burdens of illness. At the center of stigma for Black women is the concept of intersectionality: considering the multiple, intersecting identities, statuses, and conditions around race, gender, socioeconomic status, and risk factors for acquiring HIV. Given that stigma may be associated with marginalized identities and each stigma can have additive impacts, multiple and intersecting stigmas can acutely contribute to poor long-term health consequences for Black women. Interventions that consider the unique position of Black women—social support programs that can bond women together in their intersecting identities—appear to be fundamental to improving engagement and resilience and to promoting long-term psychological and physical health.