Monitoring Intersectional Stigma: A Key Strategy to Ending the HIV Epidemic in the United States

Barriers to HIV prevention and treatment in the United States persist. Although the Ending the HIV Epidemic (EHE) initiative holds promise, the success of the program may be stymied by inadequate frameworks and tools for monitoring intersectional stigma. Originating from a Black feminist critique of the consequences of treating race and gender as mutually exclusive categories,¹ intersectionality is a theoretical framework that examines how intersecting and mutually interdependent forms of power and oppression (e.g., racism, classism, cisgenderism, ableism) drive health inequities.²

Given that populations most affected by HIV are often impacted by stigma related to multiple axes of marginalization (e.g., race, socioeconomic position, sexual orientation), intersectionality is a valuable framework to understanding HIV inequities in the United States, and monitoring for intersectional stigma should be a key component of EHE activities because it allows for assessing health status and relevant behaviors over time to better determine intervention needs. We view monitoring expansively as ongoing, systematic processes to collect, analyze, disseminate, and utilize information regarding precursors, mechanisms, and outcomes of intersectional stigma within multilevel spheres of influence (e.g., within both academic research and public health practice). In this article, we discuss (1) current data sources and opportunities for monitoring intersectional stigma in public health practice, (2) key gaps within intersectional stigma research, and (3) implementation strategies for successful monitoring, which we believe will lead to more comprehensive, equitable, and ethical EHE interventions in the United States.

INTERSECTIONAL STIGMA IN PUBLIC HEALTH PRACTICE

This section describes how select data sources can better address intersectional stigma at multiple levels of public health practice (federal, state, local, and community levels), pointing to actionable steps that can be taken now. More detailed information is provided in Appendix A (available as a supplement to the online version of this article at http://www.ajph.org).

At the federal level, EHE aims (pillars) are biomedical, and funding opportunities lack intersectional stigma‒related monitoring and regulatory frameworks.³ As one example, the EHE data visualization Web site, AHEAD,⁴ excludes structural determinants of health such as intersectional stigma, filters combining multiple demographics for national-level data, and any stratifications for data on local jurisdictions, despite demographics being present in the source data. AHEAD and other data visualization Web sites such as AIDSVu⁵ would be improved by including a broader diversity of data sources that reflect intersectional stigma (e.g., surveys, laws, geographical indicators, court and prison records). By contrast to EHE, the 2022–2025 National HIV/AIDS Strategy for the US⁶ addresses intersectional stigma through its focus on racism as a public health threat, quality of life, integrated responses to intersecting health conditions, leadership for people living with HIV, structural determinants of health, reforming HIV criminalization laws, and intersectional priority populations (e.g., Black women).

At the state and local levels, health departments serve important monitoring and technical assistance functions. Jurisdictional EHE plans⁷ could add intersectional stigma pillars related to implementing programs for priority populations and utilizing an expansive array of data sources for metrics beyond HIV surveillance data. For example, administrative databases like Medicaid are prime opportunities for collection of intersectional stigma‒related data and reporting EHE metrics. Similarly, health department funding contracts could stipulate collection of intersectional stigma‒relevant data, including service utilization, client demographics, and organizational characteristics. Population-specific surveys that already include validated HIV stigma measures (e.g., Medical Monitoring Project) could be expanded to assess other types of stigma.

At the community level, embedding intersectional stigma measurement within routine engagement in HIV services could improve service quality and determine whether interventions reduce intersectional stigma. Examples of collectable data include assessment of trauma and resilience, stigmatization by providers, or whether policies and physical spaces are welcoming. Funders’ focus on biomedical person-level or program-level outcomes (e.g., HIV care continuum),⁸ can preclude dedication of resources or personnel to stigma-mitigation activities. Therefore, framing intersectional stigma as a quality-of-care issue and establishing clear plans and agreements for how these data will be used are strategies that may accelerate provider buy-in.⁹ Providers may need valid measures and training on collecting intersectional stigma‒related data, such as how to report on communities that are smaller in number and thus potentially more easily identifiable from reported data (e.g., Black transgender women and Latino gay men).

By virtue of lived experience, marginalized communities are quite familiar with the harmful consequences of intersecting systems of oppression, and, yet, they are often ostracized from decision-making roles. People who have personal experience with the stigma-related constructs in question should have positions of leadership in research activities, public health practice, and organizational development.^10–13 It behooves us to adopt language used by communities (e.g., “whole-person approach”) to demystify the concept of “monitoring” into concrete steps, measures, and best practices and to tailor intersectionality research for community partners. Partnerships must be equitable and characterized by shared leadership¹⁴ where all partners have the power to address their priorities and grievances and receive technical support and funding to participate in monitoring.

THEORETICAL AND MEASUREMENT CHALLENGES

Monitoring must be intersectional from conceptualization, design, analysis, and through to data interpretation and dissemination to prevent from rendering invisible the experiences of oppressed groups.¹⁵ Nonholistic approaches include relying upon additive notions of identity and experience, focusing on demographic variables devoid of their socio-historical contexts rather than more conceptually meaningful measures of inequity, and allowing intersectional stigma to remain implicit when opportunities arise to make it explicit.¹⁶ In this section, we discuss some conceptual, methodological, policy-related, and procedural gaps challenging integration of intersectional stigma within monitoring efforts.

Conceptual Gaps

Focusing solely on demographic characteristics and presenting data stripped of their structural, social, cultural, and historical origins poses problems for monitoring health inequities. These include (1) reductive attribution of outcomes to individual behavior or deficits within communities rather than systems and structures that ignore or exacerbate intersectional stigma, (2) reliance by decision-makers (e.g., policymakers, organizational leadership) on their own insufficient theoretical understandings or limited direct experiences with intersectional stigma processes when interpreting the significance of disparities, and (3) hyperfocus on the multiple intersecting social categories that comprise people’s identities (i.e., “flattening” of intersectionality).¹⁷ The latter may perpetuate a false belief that disparities are somehow intrinsic to communities and intractable, rather than emphasizing actionable solutions and resiliencies within these populations. A myopic view of inequities that focuses exclusively on identity-related demographic differences is unjustifiable when more conceptually meaningful variables exist (e.g., socioeconomic status, food insecurity, trauma).

The 2022–2025 National HIV/AIDS Strategy’s⁶ goal of achieving a 50% reduction in HIV stigma among people living with HIV ignores other forms of stigma (e.g., racism, sexism) that are based upon systems of inequality and power, consequently rendering them less visible in funding, monitoring, and programming. Because stigmas are interdependent and mutually constitutive, EHE must incorporate a more holistic view regarding reduction of intersectional stigma.

Methodological Gaps

Appropriate measurement

There are several existing approaches to examining stigma intersectionally.^18,19 One approach is to independently assess different types of stigma by using either parallel questions (i.e., adapting the same stigma measure) or condition-specific measures (e.g., experiences of racism and HIV stigma). Two important limitations of this approach are that a priori defined categories may not always be relevant or comprehensive and that asking questions about separate types of stigma requires participants to think independently about their identities, which goes against one of intersectionality’s core tenets that social identities are multiple and intersecting, rather than unidimensional and independent.^2,18

A second approach is to compare HIV stigma across groups at different intersections (e.g., Black heterosexual women vs White bisexual men). Solely focusing on HIV stigma limits our ability to capture other types of discrimination, hampers understanding of which interventions to test first with certain populations or communities versus others, overly relies on demographic characteristics rather than larger structural factors, and may prevent examination of interaction effects in data analyses, which often requires large samples. This approach also requires a priori decisions regarding how many and which social categories to include, and proper categorization to identify intersectional groups.¹⁸

A third approach is to use attribution-free measures, such as the Intersectional Discrimination Index.¹⁸ This index is composed of three subscales that assess anticipated, day-to-day, and major discrimination. Participants are prompted to think about experiences they have had “because of who you are,” thus, not priming specific attributional bases. This approach may overcome many of the challenges of the former, although more research and investment are needed to explore its utility within practice settings.

Qualitative and mixed-method research approaches can provide contextualized insight into the unique manifestations of intersectional stigma within certain populations and yield greater clarity regarding how intersectional stigma influences service utilization. Accordingly, such approaches may elucidate challenges to achieving EHE outcomes. However, even mixed-method assessments of intersectional stigma require vigilance about integrating an intersectional approach, such as eschewing additive questions (e.g., How would you describe your experience as a Black person? Woman? Lesbian?) and avoiding asking respondents to rank their identities or discrimination experiences.¹⁶ Ultimately, effective development and use of intersectional stigma measures requires a primary focus on interlocking systems of oppression (not on identities) and meaningful engagement and empowerment of communities disproportionately affected by HIV.

Focus on individual-level factors

Efforts to study and monitor stigma generally focus on experiences of stigmatized individuals, often excluding interpersonal and structural processes in clinical settings and communities. EHE monitoring efforts must identify social and structural determinants that fuel intersectional stigma in these domains. If, for instance, we neglect how laws that criminalize HIV exposure, drug use, or sex work drive people to avoid services, then a focus solely on individual-level factors will lead to selection bias when we are evaluating progress toward EHE benchmarks. EHE monitoring needs to connect culture, policies, and laws to individual outcomes to elucidate change targets situated farther upstream from individual behavior.

Lack of inclusion of strength-based approaches

Assessment tends to focus on negative experiences and overlooks opportunities for assessing strengths and multilevel resilience, such as social support, coping, and collective action and advocacy.²⁰ It remains unclear which measures are most appropriate for monitoring strengths, but this approach can provide new avenues for intervention that resonate with affected populations and individuals and more closely align with how they view themselves.

Policy and Procedural Gaps

There are currently no widely accepted policies or procedures, nor a national strategy, to identify individual-, community-, or population-level impacts of intersectional stigma or to track intersectional stigma trends to ensure federal and state resources are quickly directed to meet the needs of affected populations. Public health information systems lack regulatory frameworks and scientific guidelines necessary to integrate intersectional stigma into monitoring. Limitations of existing data systems include a lack of validated measures, chronic underfunding for robust stigma data collection, limited reporting of who is receiving services and their health outcomes, siloed and duplicative data systems, and data monitoring requirements that are burdensome or may be too strenuous for smaller organizations. Institutions may lack capacity or procedures to effectively address unique needs of marginalized populations—such as ethics protocols to implement when stigma is reported by recipients of services—or may utilize systems that inadequately capture critical information necessary to do so, such as those that conflate gender identity and sexual orientation. For example, monitoring systems that only assess people’s sex assigned at birth or that inadequately assess present gender identity²¹ may result in gender-diverse populations being either misclassified in analyses or misgendered, risking failure to monitor and address their unique health needs.

INTERSECTIONALITY PRACTICES FOR HIV PUBLIC HEALTH GOALS

To advance the public health goals of EHE, we propose three priorities for intersectional implementation of EHE monitoring activities: (1) ensuring access to validated stigma measures and supporting their use aligned with the core tenants of intersectionality, (2) motivating use of such measures via policy and data feedback loops, and (3) establishing equitable community partnerships.

Access

A measurement toolkit is needed to streamline access and dissemination by cataloguing current and future psychometrically validated measures and qualitative instruments and by providing written guidance on their adaptation to meet diverse needs. The National Institutes of Health‒funded PhenX Toolkit²² is an aspirational format for an intersectional stigma toolkit because its protocols detail how to integrate a catalog of measures across studies, thereby increasing continuity and statistical power. Stakeholders need capacity building to monitor intersectional stigma in ways that do not perpetuate stigma. Capacity-building agencies that are adept at providing linkages between community, health care, academics, and health departments, such as AIDS Education and Training Centers, could provide training on monitoring that is aligned with principles of intersectionality.

Motivation

Reaching policy goals requires interagency coordination and regulatory frameworks for screening, identifying, and addressing intersectional stigma, whereby data are quickly returned to public health stakeholders who have opportunities to address stigma. In addition to explicitly adding intersectional stigma metrics to jurisdictional EHE plans and data dashboards, federal agencies should convene a national HIV-related intersectional stigma strategy working group to establish new policies, guidelines, and funding mechanisms for monitoring intersectional stigma, building upon the 2020 HIV-Related Intersectional Stigma Research Advances and Opportunities Workshop.²³ Tracking intersectional stigma trends can help ensure expedient distribution of resources to interventions that meet the needs of communities. One priority implementation strategy is development of national and local surveillance to monitor stigma indicators and outcomes. Current data-to-care programs signal health departments to re-engage clients lost to care, and data on intersectional stigma could likewise function as a sentinel event to prioritize the deployment of intervention specialists to mitigate stigma when it deters service engagement and, through a feedback loop, to quickly relay information to entities engaged in monitoring intersectional stigma. These data could be integrated into existing surveillance activities and dashboards and used to optimize processes for quality improvement within organizations.

Partnerships

Achieving EHE goals while attending to intersectional stigma requires participatory praxis that disrupts current inequitable power dynamics and improves opportunities for leadership and professional development among individuals from stigmatized communities.¹⁴ By its nature, intersectional stigma engenders feelings of mistrust, fosters disengagement, and makes people hesitant to disclose sensitive information.²⁴ Equitable approaches to ending the HIV epidemic necessitate rebuilding trust that has been historically broken by ensuring unencumbered access to expertise that exists across all partners. Ongoing engagement of community leaders, people living with HIV, and marginalized and historically underrepresented communities through entities such as the Centers for AIDS Research and the Federal AIDS Policy Partnership is critical to EHE implementation and comprehensive assessment of intersectional stigma.^11,13,25 Partnerships must be mutually beneficial to all parties, interdisciplinary, and aligned with the core tenets of intersectionality, and must utilize ethical and empowering methods such as community-based participatory research.

CONCLUSIONS

Intersectional stigma provides a lens to examine how social and structural processes produce or exacerbate HIV-related health inequities. Although conceptual, methodological, and procedural gaps remain, the various data sources currently available in the United States are promising for monitoring intersectional stigma, and there are ample opportunities to improve monitoring as we work toward ending the HIV epidemic. The COVID-19 pandemic has further reinforced how crucial an intersectional approach is to monitoring effects of interlocking systems of oppression, not only toward ending the HIV epidemic but also ultimately toward dismantling the very systems that perpetuate health inequities. We propose that achieving these goals hinges upon increased access to and support for measurement of intersectional stigma and requires policies that motivate the use of intersectional measures with proper feedback loops, as well as equitable community partnerships.