Addressing Intersectional Stigma in Programs Focused on Ending the HIV Epidemic

Stigma is defined as a process by which individuals or groups are devalued because of attributes or behaviors deemed “deeply discrediting.”¹ HIV stigma, the social discrediting of people living with HIV, often intersects with other forms of social marginalization. Intersectionality is a framework that considers how interlocking social systems of privilege and oppression (racism, sexism, transphobia, heterosexism, classism, xenophobia) condition (at a microlevel) the experiences of people with intersecting, often marginalized social identities (e.g., race, gender identity, sexual orientation, socioeconomic status, country of origin, health status).^2,3 In the HIV context, an intersectional stigma lens recognizes that multiple marginalized social positions, processes, and identities are “mutually constituted” and that disparities cannot be effectively addressed if racial, gender, and sexual minority status among people living with HIV are treated separately.⁴

An intersectional approach becomes particularly relevant given the social groups most affected by HIV in the United States. In 2019, HIV incidence was higher among Black (45.0 per 100 000), Latinx (21.5 per 100 000), and multiracial (18.8 per 100 000) individuals than among White individuals (5.3 per 100 000).⁵ In addition, 70% of transmissions were attributed to male-to-male sexual contact, as compared with 23% by sexual contact between cisgender men and cisgender women.⁵ Black women account for more than half of new HIV cases among women overall,⁵ and rates of heterosexual HIV transmission among Black women are considerably higher than rates among Black men.⁵ From 2015 to 2019, the only gender categories for which HIV incidence increased were transgender women and transgender men. Black gay and bisexual men and transgender women demonstrate the lowest preexposure prophylaxis use, HIV diagnosis rates, linkage to and retention in care, and viral suppression rates of all racial and gender groups.⁶

People living with HIV and other individuals affected by HIV stigma contend with the negative synergistic impact of intersectional stigma^2–4,7,8 on health, manifested at institutional (health care access and competence), interpersonal (rejection and victimization), and individual (internalized stigma and associated poor mental health) levels. Varying stigmas often act in concert^4,7,8 to increase stress among people with HIV, reduce their likelihood of engaging in health-promoting behavior (e.g., seeking HIV testing or care), and undermine their resilience (e.g., well-being, optimism, medication adherence). Although these represent major challenges, the agency, efficacy, resilience, and resistance of individuals who experience intersectional stigma are strengths that can be harnessed to improve health and well-being. Along with this, individuals who are most marginalized experience a disproportionate share of stigma related to HIV.⁹

Intersectional stigma, a primary driving factor of health inequities and a barrier to health care in the United States, has been undertargeted in interventions despite the fact that its effects might be modifiable at several socioecological levels. Existing interventions have been limited in scope and have yet to be tested with respect to their large-scale efficacy. The scope and nature of programmatic work to reduce intersectional stigma and improve HIV-related outcomes, as well as the effects of multilevel interventions, remain unknown. Here we draw upon the expertise and experience of staff at the National Institutes of Health (NIH), scientific investigators conducting intersectional stigma research, and community service providers who implement programs to improve HIV outcomes in the context of intersectional stigma to inform recommendations to address HIV.

INCREASING AND ENHANCING THE IMPACT OF INTERVENTIONS

There are few interventions explicitly designed to address intersectional stigma. Thus, there is a paucity of research demonstrating the efficacy of intersectional stigma interventions incorporating traditional scientific designs and standards. Other efficacious interventions adopting anti–intersectional stigma approaches may exist, but they may not be labeled and disseminated as such. Nevertheless, work conducted to date offers instructive innovative approaches to optimize HIV-related interventions in the context of intersectional stigma (e.g., comprehensive sex education, programs to optimize coping among clients). As the impact of intersectional stigma on HIV prevention and treatment is increasingly acknowledged in HIV research and the need for more interventions to address this challenge is recognized, more guidance will be needed to ensure optimal effectiveness of anti-stigma efforts. Thus, we developed recommendations to enhance the impact of interventions designed to reduce HIV-related stigma and other intersecting stigmas in implementation settings (Table 1).

TABLE 1—

Increasing and Enhancing the Effects of Interventions Aiming to Reduce HIV Stigma and Intersecting Stigmas in Implementation Settings

Recommendation	Principle(s)	Example(s)
Prioritize community ownership, engagement, and connectedness, which are critical for successful stigma reduction intervention implementation.	Communities need to be equal partners. Researchers must recognize and value the unique and complementary skill sets and expertise that partnerships promote.	Develop memorandums of agreement emphasizing equitable sharing of budget resources, decision-making authority, and capacity building. Employ nontraditional, community-driven, participatory methodologies (e.g., human-centered design, digital storytelling). Collaborate with researchers in the mental health field to develop anti-stigma approaches.
Incorporate the perceptions and experiences of front-line service providers to improve intervention approaches within communities.	Ensure equal participation from communities and health care entities, providers, and staff.	Community partners (providers, community-based organizations, peers) tasked with implementing an intervention are included in design discussions to ensure that the intervention accommodates their practice constraints or beliefs around what should be done and how.
Conduct more expansive intersectional stigma interventions and evaluations.	Consider implementation science study designs to evaluate existing community-based interventions or services instead of prioritizing efficacy. The lack of validated measures to assess impact may partially explain why there is limited evidence for efficacious interventions.	Evaluate interventions emphasizing academic–community partnerships to reduce intersectional stigma. Develop assessments that measure the comprehensive effects of interventions.
Create an accessible, living, and open compendium or database of research and community efforts to address intersectional stigma.	Create an evidence-based intervention compendium but employ a more flexible, dynamic approach. Select and combine core elements from different interventions that are relevant to the context.	The Stigma and Resilience Coalition is cataloguing community organization–based and research-based intersectional stigma efforts in New York City. Within the compendium, emphasize common elements of different interventions effective in terms of stigma reduction.
Address the role funding priorities play in our ability to address intersectional stigma.	Broaden the funding scope beyond behavioral and biomedical HIV outcomes to include stigma reduction and community empowerment.	Fund multilevel interventions with intersectional stigma reduction as the primary outcome of interest.

Recommendation 1

Our first recommendation is to prioritize community ownership, engagement, and connectedness, which are critical for successful stigma reduction intervention implementation. Researchers should incorporate context- and community-driven approaches to understand types of intersectional stigmas, how they operate, and how to address them. Communities need to be recognized as equal partners given their important and complementary strengths.¹⁰ Researchers must recognize and value the unique skills and expertise that partnerships promote. This can mean ensuring that community members have leadership and decision-making roles in research teams, developing memorandums of agreement emphasizing equitable sharing of budget resources, sharing decision-making authority, and including capacity-building activities in research projects. Communities are often relegated to limited roles, included only for their ability to recruit participants into studies (e.g., via focus groups or in-depth interviews) or to provide feedback on intervention content once developed (e.g., through time-limited advisory boards).

Novel approaches amplifying community voices and involvement are needed so that interventions are dynamic and responsive to emerging challenges and stigmas. Researchers should consider nontraditional, community-driven, participatory methodologies (e.g., human-centered design,¹¹ digital storytelling,¹² a modified Delphi process,¹³ photovoice¹⁴) and support organizations in such work even without research funding.

It is time to move away from reliance on tokenistic community advisory boards with minimal input and move toward engaging community members in conceptualizing and carrying out interventions and research studies, starting with writing funding proposals. Partnered research should include equitable arrangements in terms of finances, decision making, and capacity building. Communities must be centered in such work, as this vantage point allows true intervention tailoring to community and stakeholder priorities. Finally, the field needs more research led by scientists whose identities and lived experiences mirror the communities under study.

Recommendation 2

Our second recommendation is to incorporate the perceptions and experiences of front-line service providers as a means of improving intervention approaches within communities. Service providers are typically underrecognized and undersupported in efforts addressing intersectional stigma. Thus, although many service providers work to address intersectional stigma (even if they do not label it as such) as part of their day-to-day work, we know little about the content and impact of those efforts. Even if researchers develop the most rigorous and multilayered content-based intervention, it will fail if the experiences and perspectives of service providers on the ground are not incorporated. Their input, beginning with the development stage, is critical. It should be noted that service providers, at times, have been identified as a source of stigma among clients.^15–17 Thus, although service provider perspectives may be valuable for informing interventions, this does not negate the need for the implementation of strategies to address stigma within this population.

Recommendation 3

The third recommendation is to conduct more expansive intersectional stigma interventions and evaluations. Intersectional stigma interventions require attention to multiple levels (e.g., individual, interpersonal, community, structural), types of stigma (e.g., internalized, anticipated, enacted), and stigmatizing and discriminating forces (e.g., racism, sexism, sexual minority status). They also should address systems of privilege and oppression and intervene on these systems or their manifestations.¹⁸ Finally, intersectional interventions should acknowledge the complexity of intersecting identities and systems, give attention to the contexts in which HIV and other stigmas occur, and incorporate the strength and solidarity that can emerge when people with shared identities convene.

Given these considerations, we need novel, wide-ranging ways of evaluating intersectional stigma interventions beyond efficacy and effectiveness in terms of HIV-related behaviors and health outcomes. Researchers and funders should consider more use of implementation science study designs (including hybrid implementation and efficacy trial designs)^19,20 to evaluate community-based interventions and services. Implementation science research can include evaluation of community-based interventions, use of mechanisms such as academic–community partnerships, and local health department–community–federal partnerships. This is critical as approaches to intersectional stigma have effects at both the individual level (by building strengths and resilience to resist stigma) and the structural level (by working with leadership at all levels on sustainable policy change).

These types of studies should be conducted in equal collaboration with community partners, and attention should be directed to inner organizational (e.g., organizational culture, structure, and leadership) and outer system (e.g., legislation) contexts.²¹ Researchers and funders should consider how to balance innovation with proven-effective strategies to bring programmatic public health impact to scale. The lack of validated measures assessing the effects of interventions on outcomes beyond HIV indicators (e.g., resilience, empowerment, stigma reduction) may partially explain the limited evidence for intersectional stigma interventions.

Recommendation 4

Our fourth recommendation is to create an accessible, living, and open compendium or database of research and community efforts to address intersectional stigma. Community efforts addressing intersectional stigma cataloged within local health department strategies and end the HIV epidemic plans could be collated with peer-reviewed academic research. The compendium could be modeled after the Centers for Disease Control and Prevention (CDC) compendium of evidence-based interventions with a more flexible approach. According to the CDC, if adapted interventions do not have all of the core components of the original evidence-based interventions, they are not “evidence based.”

However, rigid evidence-based intervention guidelines can result in an inability to grow and expand core intervention components in different settings and in alignment with community priorities. Rather than beginning with interventions showing efficacy or effectiveness, we suggest prioritizing core intervention characteristics (e.g., the aspects of an intervention that are most applicable to a given setting) for adaptation, implementation, and testing. In addition, we must develop other open and accessible forums for sharing and disseminating promising programs, best practices, or evidence-informed programming.

Recommendation 5

The final recommendation is to address the role funding priorities play in our ability to address intersectional stigma. We need to broaden the scope of priority HIV research and programmatic outcomes to include stigma reduction and community empowerment. Funders’ prioritization of biomedical outcomes over stigma reduction can be detrimental to program implementation and harmful to participants. This “misalignment” of success metrics—what the funders value versus what communities need—poses a barrier to testing and adoption of effective intersectional stigma-related interventions. Also, the biomedical endpoints demanded by funders often hamper holistic responses to clients’ needs. Lastly, the siloed nature of funding prevents the formation of meaningful collaborations among researchers, providers, and communities.

CONCLUSIONS

In this editorial, we have addressed the emergence, potential, key challenges, and future directions of implementation research and practice targeting intersectional stigma within the field of HIV. NIH staff, investigators conducting intersectional stigma research, and community service providers who implement programs to improve HIV outcomes identified critical gaps in funded research, intervention approaches, and teams. These gaps result from suboptimal participation on the part of communities affected by intersectional stigma and those who support them (e.g., health care and social service providers). A common thread that runs across our recommendations is the need to intentionally elevate the focus on intersectional stigma in HIV-related implementation science. Namely, there is a need to reconfigure the unilateral investigator-driven research model by incorporating an equivalent presence of community partners from conceptualization to funding and implementation.

There are benefits in this paradigm shift. First, it may help researchers understand operating mechanisms of intersectional stigmas and assist in developing commensurate interventions and policy-level strategies that combat stigmas and their effects. Second, multilevel, multicomponent hybrid interventions may have more powerful and long-lasting effects than single-focus, single-level approaches.^18,22 Integration of individual and structural stigma reduction interventions is yet to be optimized and tested in study designs. Findings from emerging interventions conducted by research–community collaborations will be informative with respect to the feasibility and efficacy of interventions targeting both stigma and support among affected individuals. In addition, implementation research related to intersectional stigma around HIV continuums of prevention and care that is conducted in equal collaboration with community partners is more likely to increase validity, buy-in, and sustainability.

Critical steps must be taken to develop true research–community partnerships addressing intersectional stigma. This requires modifying research funding approaches, including creating funding mechanisms prioritizing stigma measurement and eradication as primary outcomes. In addition, grant review models that include community members may help ensure that community values and interests are represented in decisions regarding funding. Moreover, funders can facilitate more authentic research–community partnerships by mandating scientific and community co-leadership on grants and requiring budgets that ensure significant resource disbursement within community-based organizations.

Lastly, governmental–academic–community partnerships can establish an infrastructure for grassroots reporting and cataloguing of ongoing substantial community and service provider efforts addressing intersectional stigma. Creating a “living,” centralized platform with project or study descriptions of existing funded and unfunded local and national projects would be beneficial for potential cross collaborations and accelerated timelines to achieve sustained effects on intersectional stigma.

Addressing intersectional stigma can have significant returns with respect to ending the HIV epidemic. However, to obtain these benefits, researchers, funders, and service providers must reconceptualize how efforts to combat intersectional stigma are understood, evaluated, and delivered. Approaches that emphasize authentic community partnerships, build on individual and community strengths, increase the knowledge base regarding intersectional stigma measurement and interventions, and reconfigure funding models are critical in this process.