Valerie A. Earnshaw

From Conceptualizing to Measuring HIV Stigma: A Review of HIV Stigma Mechanism Measures

Recent analyses suggest that lack of clarity in the conceptualization and measurement of HIV stigma at an individual level is a significant barrier to HIV prevention and treatment efforts. In order to address this concern, we articulate a new framework designed to aid in clarifying the conceptualization and measurement of HIV stigma among individuals. The HIV Stigma Framework explores how the stigma of HIV elicits a series of stigma mechanisms, which in turn lead to deleterious outcomes for HIV uninfected and infected people. We then apply this framework to review measures developed to gauge the effect of HIV stigma since the beginning of the epidemic. Finally, we emphasize the utility of using three questions to guide future HIV stigma research: who is affected by, how are they affected by, and what are the outcomes of HIV stigma?

Stigma and Racial/Ethnic HIV Disparities: Moving Toward Resilience

Prior research suggests that stigma plays a role in racial/ethnic health disparities. However, there is limited understanding about the mechanisms by which stigma contributes to HIV-related disparities in risk, incidence and screening, treatment, and survival and what can be done to reduce the impact of stigma on these disparities. We introduce the Stigma and HIV Disparities Model to describe how societal stigma related to race and ethnicity is associated with racial/ethnic HIV disparities via its manifestations at the structural level (e.g., residential segregation) as well as the individual level among perceivers (e.g., discrimination) and targets (e.g., internalized stigma). We then review evidence of these associations. Because racial/ethnic minorities at risk of and living with HIV often possess multiple stigmas (e.g., HIV-positive, substance use), we adopt an intersectionality framework and conceptualize interdependence among co-occurring stigmas. We further propose a resilience agenda and suggest that intervening on modifiable strength-based moderators of the association between societal stigma and disparities can reduce disparities. Strengthening economic and community empowerment and trust at the structural level, creating common ingroup identities and promoting contact with people living with HIV among perceivers at the individual level, and enhancing social support and adaptive coping among targets at the individual level can improve resilience to societal stigma and ultimately reduce racial/ethnic HIV disparities.

HIV Stigma Mechanisms and Well-Being among PLWH: A Test of the HIV Stigma Framework

The current work evaluates the HIV Stigma Framework in a sample of 95 people living with HIV recruited from an inner-city clinic in the Bronx, NY. To determine the contributions of each HIV stigma mechanism (internalized, enacted, and anticipated) on indicators of health and well-being, we conducted an interviewer-delivered survey and abstracted data from medical records. Results suggest that internalized stigma associates significantly with indicators of affective (i.e., helplessness regarding, acceptance of, and perceived benefits of HIV) and behavioral (i.e., days in medical care gaps and ARV non-adherence) health and well-being. Enacted and anticipated stigma associate with indicators of physical health and well-being (i.e., CD4 count less than 200 and chronic illness comorbidity respectively). By differentiating between HIV stigma mechanisms, researchers may gain a more nuanced understanding of how HIV stigma impacts health and well-being and better inform targeted interventions to improve specific outcomes among people living with HIV.ResumenEl presente trabajo evalúa el Marco Teórico del Estigma hacia el VIH en una muestra de 95 personas que viven con VIH y que fueron reclutadas en una clínica del centro de la ciudad del Bronx, NY. Para determinar la contribución de cada mecanismo con el que el estigma hacia el VIH (interiorizado, percibido, y anticipado) funciona en relación a indicadores de salud y bienestar, se realizó una encuesta conducida por entrevistadores y se extrajo información de registros médicos. Los resultados sugieren que el estigma internalizado se asocia significativamente con indicadores de salud y bienestar afectivos (es decir desesperanza, aceptación del VIH y beneficios percibidos por tener VIH) y de comportamiento (es decir, días de interrupción en la atención médica y falta de adherencia a medicamentos ARV). El estigma percibido y el anticipado se asocian con indicadores de salud física y bienestar (es decir, recuento de CD4 inferior a 200 y comorbilidad con otras enfermedades crónicas, respectivamente). Al diferenciar entre mecanismos de estigmatización en relación al VIH, los investigadores pueden obtener una comprensión más matizada de cómo el estigma impacta a la salud y al bienestar y pueden utilizar esta información para informar adecuadamente el desarrollo de intervenciones dirigidas a mejorar resultados específicos entre las personas que viven con VIH.

The impact of stigma in healthcare on people living with chronic illnesses.

Approximately half of adults are living with a chronic illness, many of whom may feel stigmatized by their chronic illness in different contexts. We explored the impact of internalized, experienced, and anticipated stigma within healthcare settings on the quality of life of 184 participants living with chronic illnesses (e.g. diabetes, inflammatory bowel disease, asthma). Results of a path analysis demonstrate that participants who internalized stigma and experienced stigma from healthcare workers anticipated greater stigma from healthcare workers. Participants who anticipated greater stigma from healthcare workers, in turn, accessed healthcare less and experienced a decreased quality of life.

Internalized stigma and HIV status disclosure among HIV-positive black men who have sex with men

Abstract Black men who have sex with men (BMSM) are severely affected by the HIV epidemic, yet research on the relationship between HIV stigma and status disclosure is relatively limited among this population. Within this epidemic, internalized HIV stigma, the extent to which people living with HIV/AIDS endorse the negative beliefs associated with HIV as true of themselves, can negatively shape interpersonal outcomes and have important implications for psychological and physical health. In a sample of HIV-positive BMSM (N=156), the current study examined the effect of internalized stigma on HIV status disclosure to sexual partners, which can inform sexual decision-making in serodiscordant couples, and HIV status disclosure to family members, which can be beneficial in minimizing the psychological distress associated with HIV. Results revealed that greater internalized stigma was associated with less HIV status disclosure to participants’ last sexual partner and to family members. Findings from this study provide evidence that internalized negative beliefs about ones HIV status are linked to adverse interpersonal consequences. Implications of these findings are discussed with regard to prevention and intervention efforts to reduce HIV stigmatization.

The importance of full-time work for urban adults' mental and physical health.

Unemployment and underemployment have adverse mental and physical health consequences, such as increased stress and depression. Health damaging behaviors like unhealthy eating, smoking, and alcohol use may be used to cope, contributing to chronic disease risk. In this adverse economic climate, it is vital to understand the health implications of unemployment and underemployment as well as underlying mechanisms. A randomized household survey of adults in six low resource communities was conducted in New Haven, Connecticut in 2009, yielding a sample of 1205 (73% participation) racially diverse adults (61% Black, 20% Latino, 12% White) ages 18-65 (61% women). We used ANOVA to test group differences and structural equation modeling to test mediation. 14.5% were unemployed and looking for work, 18.4% worked part-time, 38.2% worked full-time. Those employed full-time reported the least damaging psychological factors and health behaviors: lowest levels of stress and depression, most healthy and least unhealthy eating, most physical activity, and lowest levels of smoking and drinking. Those employed part-time fell in the middle, and those unemployed fell on the unhealthy end of all psychological and behavioral factors. Stress significantly mediated the associations of full-time employment with frequency of unhealthy eating and physical activity, and amount of cigarette smoking and alcohol consumption. Depression significantly mediated the association of full-time employment with frequency of healthy eating. Compared to <10% nationwide, rates of unemployment in this sample were high. Both those unemployed and employed part-time reported adverse health behaviors as compared to those employed full-time, partially mediated by heightened stress and depression. It is vital for the health and well-being of the nation to increase not simply employment, but specifically full-time employment. Provision of mental health services to those unemployed and underemployed should be a priority to promote healthier lifestyles and prevent costly future chronic disease.

HIV Stigma and Physical Health Symptoms: Do Social Support, Adaptive Coping, and/or Identity Centrality Act as Resilience Resources?

Despite efforts to eliminate it at the societal level, HIV stigma persists and continues to threaten the health of people living with HIV (PLWH). We tested whether social support, adaptive coping, and/or HIV identity centrality act as resilience resources by buffering people from the negative impact of enacted and/or anticipated stigma on stress and ultimately HIV symptoms. Ninety-three PLWH completed a survey, and data analyses tested for evidence of mediation and moderation. Results demonstrated that instrumental social support, perceived community support, and HIV identity centrality buffered participants from the association between anticipated stigma and HIV symptoms. That is, anticipated stigma was associated with HIV symptoms via stress only at low levels of these resources. No resources buffered participants from the impact of enacted stigma. Identifying and enhancing resilience resources among PLWH is critical for protecting PLWH from the harmful effects of stigma.ResumenA pesar de los esfuerzo para eliminar en todos los niveles sociales, el estigma del VIH, este continua amenazando la salud de las personas viviendo con VIH (PLWH). Nosotros examinamos si el soporte social, mecanismos adaptados, y/o la identidad central del VIH actúan como recursos adaptados neutralizando a las personas de impactos negativos y/o anticipando el stress causado por el estigma y el aumento de los síntomas del VIH. Noventa y tres PLHW completaron las encuestas y los resultados fueron examinados para evidencia de mediación y moderación. Los resultados demostraron que el soporte social, el soporte de la comunidad e individualidad central son instrumentales para neutralizar a los participantes de la asociación entre el estigma anticipado y los síntomas del VIH. Esto quiere decir que el estigma anticipado estaba asociado con síntomas del VIH a través del stress solamente en niveles más bajos de estos recursos. Ninguno de los recursos neutralizan a los participantes del impacto de los estigmas establecidos. Es crítico el poder identificar e intensificar los recursos establecidos entre PLWH para protección de PLWH de los efectos dañinos del estigma.

Examining Effects of Anticipated Stigma, Centrality, Salience, Internalization, and Outness on Psychological Distress for People with Concealable Stigmatized Identities

Understanding how stigmatized identities contribute to increased rates of depression and anxiety is critical to stigma reduction and mental health treatment. There has been little research testing multiple aspects of stigmatized identities simultaneously. In the current study, we collected data from a diverse, urban, adult community sample of people with a concealed stigmatized identity (CSI). We targeted 5 specific CSIs – mental illness, substance abuse, experience of domestic violence, experience of sexual assault, and experience of childhood abuse – that have been shown to put people at risk for increased psychological distress. We collected measures of the anticipation of being devalued by others if the identity became known (anticipated stigma), the level of defining oneself by the stigmatized identity (centrality), the frequency of thinking about the identity (salience), the extent of agreement with negative stereotypes about the identity (internalized stigma), and extent to which other people currently know about the identity (outness). Results showed that greater anticipated stigma, greater identity salience, and lower levels of outness each uniquely and significantly predicted variance in increased psychological distress (a composite of depression and anxiety). In examining communalities and differences across the five identities, we found that mean levels of the stigma variables differed across the identities, with people with substance abuse and mental illness reporting greater anticipated and internalized stigma. However, the prediction pattern of the variables for psychological distress was similar across the substance abuse, mental illness, domestic violence, and childhood abuse identities (but not sexual assault). Understanding which components of stigmatized identities predict distress can lead to more effective treatment for people experiencing psychological distress.

Drug Addiction Stigma in the Context of Methadone Maintenance Therapy: An Investigation into Understudied Sources of Stigma.

Experiences of stigma from others among people with a history of drug addiction are understudied in comparison to the strength of stigma associated with drug addiction. Work that has studied these experiences has primarily focused on stigma experienced from healthcare workers specifically even though stigma is often experienced from other sources as well. Because stigma has important implications for the mental health and recovery efforts of people in treatment, it is critical to better understand these experiences of stigma. Therefore, we characterize drug addiction stigma from multiple sources using qualitative methodology to advance understandings of how drug addiction stigma is experienced among methadone maintenance therapy patients and from whom. Results demonstrate that methadone maintenance therapy patients experience prejudice, stereotypes, and discrimination from friends and family, coworkers and employers, healthcare workers, and others. Discussion highlights similarities and differences in stigma experienced from these sources.

Discredited Versus "Discreditable": Understanding How Shared and Unique Stigma Mechanisms Affect Psychological and Physical Health Disparities.

In his classic treatise, Goffman (1963) delineates between people who are discredited—whose stigma is clearly known or visible—and people who are discreditable—whose stigma is unknown and can be concealable. To what extent has research in the past 50 years advanced Goffmans original ideas regarding the impact of concealability on stigma management strategies and outcomes? In the current article, we outline a framework that articulates how stigma can “get under the skin” in order to lead to psychological and physical health disparities. Further, we consider when and to what degree concealability moderates these effects, creating divergent outcomes for the discredited and discreditable.