HIV-Related HIV-Related StigmaStigma

John B. Pryor, Ph.D.John B. Pryor, Ph.D.

Illinois State UniversityIllinois State University

HIV/AIDS Anti-Stigma and Discrimination ForumAcademy for Educational Development (AED)

Washington, DCOctober 29, 2007

What is a stigma?What is a stigma?

In his classic treatise, Goffman In his classic treatise, Goffman (1963) defined (1963) defined stigmastigma as "an as "an undesired undesired differentnessdifferentness from from what we had anticipated" that what we had anticipated" that reduces the bearer "in our minds reduces the bearer "in our minds from a whole and usual person to from a whole and usual person to a tainted, discounted one." a tainted, discounted one."

Four types of stigmaFour types of stigma

Public StigmaPublic Stigma – people’s social and – people’s social and psychological reactions to someone with a psychological reactions to someone with a perceived stigma perceived stigma

Self-StigmaSelf-Stigma – how one reacts to the – how one reacts to the possession of a stigmapossession of a stigma

Stigma-by-AssociationStigma-by-Association – social and – social and psychological reactions to people somehow psychological reactions to people somehow associated with a stigmatized personassociated with a stigmatized person

Institutional StigmaInstitutional Stigma – the – the legitimatization and perpetuation of a legitimatization and perpetuation of a stigmatized status by society’s institutions stigmatized status by society’s institutions and ideological systemsand ideological systems

Public StigmaPublic Stigma

Social psychologists view Social psychologists view negative reactions to a perceived negative reactions to a perceived stigma as a form of stigma as a form of prejudice.prejudice.

Prejudice Prejudice is essentially a negative is essentially a negative attitudeattitude toward people perceived toward people perceived to be members of an out-group.to be members of an out-group.

US THEM

Tri-Part Conceptual Model of Public Tri-Part Conceptual Model of Public StigmaStigma

CognitiveComponent

BehavioralComponent

AffectiveComponent

Cognitive components of Cognitive components of reactions to perceived HIV-reactions to perceived HIV-related stigmarelated stigma

Stereotypes about PLWHAStereotypes about PLWHA– Connections to sexual orientation & drug useConnections to sexual orientation & drug use

Ideology of blameIdeology of blame– Belief that bad things happen to bad peopleBelief that bad things happen to bad people

Beliefs about prejudiceBeliefs about prejudice– Are negative reactions to PLWHA seen as a form of prejudice?Are negative reactions to PLWHA seen as a form of prejudice?

Conceptions about risk and Conceptions about risk and transmissiontransmission– Risks associated with casual contactRisks associated with casual contact C B

A

Affective (emotional) Affective (emotional) components of reactions to components of reactions to perceived HIV-related stigmaperceived HIV-related stigma

Can be positive (e.g., Can be positive (e.g., compassion) or negative (e.g., compassion) or negative (e.g., fear, disgust, anger, etc.)fear, disgust, anger, etc.)

Can be either automatic Can be either automatic (reflexive) or derived from (reflexive) or derived from conscious deliberationconscious deliberation

C B

A

Behavioral components of Behavioral components of reactions to perceived HIV-reactions to perceived HIV-related stigmarelated stigma

Avoidance (or approach) – Avoidance (or approach) – a general behavioral a general behavioral tendencytendency

Harassment, ridicule, & ostracismHarassment, ridicule, & ostracism Discrimination Discrimination

– EmploymentEmployment– HousingHousing– Educational opportunitiesEducational opportunities– Access to medical careAccess to medical care– Insurance Insurance

Pro-social behavior – social supportPro-social behavior – social support Support for public policiesSupport for public policies

– Coercive policiesCoercive policies– Anti-discrimination policiesAnti-discrimination policies C B

A

What is What is self- self- stigma?stigma?

Self-stigma Self-stigma –– enacted (actual) enacted (actual) or perceived (anticipated) social or perceived (anticipated) social experiencesexperiences

Related to knowledge of public Related to knowledge of public reactions to stigma reactions to stigma – – reflected appraisalsreflected appraisals of othersof others

Disclosure concernsDisclosure concerns Label avoidanceLabel avoidance

– Avoiding HIV testingAvoiding HIV testing– Avoiding disclosure of HIV statusAvoiding disclosure of HIV status– Avoiding treatment Avoiding treatment – Avoiding safer sexAvoiding safer sex

Withdrawal from situations where ill Withdrawal from situations where ill treatment might occurtreatment might occur– Feelings of social isolationFeelings of social isolation

Internalization of negative labelInternalization of negative label– Reduction of self-esteem & self-efficacyReduction of self-esteem & self-efficacy– Hopelessness and depressionHopelessness and depression– Reduced immune functioningReduced immune functioning

Stigma-by-AssociationStigma-by-Association To some degree all of the public stigma To some degree all of the public stigma

reactions to PLWHA are also experienced reactions to PLWHA are also experienced by uninfected people who are somehow by uninfected people who are somehow associated with PLWHAassociated with PLWHA

HIV-related stigma affects HIV-related stigma affects familiesfamilies – – shame & disclosure concernsshame & disclosure concerns

Stigma-by-Association contributes to Stigma-by-Association contributes to burnout among burnout among care-givers and health care-givers and health care providerscare providers

Concern about stigma-by-association Concern about stigma-by-association contributes to social avoidancecontributes to social avoidance

Institutional stigmaInstitutional stigma

Examples of stigmatizing government laws and policies•The U.S. government bans individuals with HIV from entering the United States as tourists, workers or immigrants• The U.S. Foreign Service refuses to hire applicants with HIV.• Sexual activity by people with HIV may subject them to criminal penalties in many states, even when the sexual activity is consensual, the activity involves little or no risk of transmission, there is no intention to transmit the virus and the activity does not result in HIV transmission.Source: Lambda Legal Report , 2007

Institutional stigmaInstitutional stigma

• Public stigma toward persons living with HIV/AIDS is related to the perceived connections of HIV/AIDS to otherstigmas• Policies of private and governmental institutions that have a negative impactpeople with these related stigmas alsoserve to legitimize and perpetuate HIV-related stigma

AfricanAmerican

s

MSM

IV DrugUsers

Stigmas related to HIV

AfricanAmerican

s

MSM

IV DrugUsers

Societal responses to related stigmas

SexualPrejudice

Racism

Criminalizationof drug

addiction

Related Institutional Related Institutional StigmaStigma

Sexual prejudice – state laws Sexual prejudice – state laws banning gay marriagebanning gay marriage

Institutional racism – 1 in 7 Black Institutional racism – 1 in 7 Black men between ages 25 & 29 are in men between ages 25 & 29 are in prisonprison

Criminalization of Drug Addiction - Criminalization of Drug Addiction - Federal ban on Federal ban on syringe exchange

First Question for First Question for Interventions: What Interventions: What types of HIV-related types of HIV-related stigma are you trying to stigma are you trying to change?change?

Public stigma?Public stigma? Self-stigma?Self-stigma? Stigma-by-Association?Stigma-by-Association? Institutional Stigma?Institutional Stigma?

Second question:How do you know if your intervention worked?

WHY MEASURE WHY MEASURE STIGMA?STIGMA? Evaluate anti-stigma interventionsEvaluate anti-stigma interventions Contribute to the knowledge base of Contribute to the knowledge base of

identifying effective interventionsidentifying effective interventions Compare HIV stigma across contextsCompare HIV stigma across contexts Determine whether new trends in Determine whether new trends in

services and availability of treatment services and availability of treatment reduce stigmareduce stigma

Detect if a program is having Detect if a program is having unintended consequencesunintended consequences

Source: Nyblade & MacQuarrie (2006)

Models for Measuring Models for Measuring Public StigmaPublic Stigma Herek’s HIV/AIDS Stigma SurveyHerek’s HIV/AIDS Stigma Survey Assessed with three national samples, Assessed with three national samples,

comparison norms over timecomparison norms over time Measures 1) Support for coercive policies, 2) Measures 1) Support for coercive policies, 2)

Negative feelings about PLWHA, 3) Negative feelings about PLWHA, 3) Attributions of blame & responsibility, 4) Attributions of blame & responsibility, 4) Transmission beliefs, 5) Avoidance Transmission beliefs, 5) Avoidance intentions, & 6) Feelings of discomfort with intentions, & 6) Feelings of discomfort with contactcontact

Herek, G.M., Capitanio, J.P., & Widaman, K.F. (2002). Herek, G.M., Capitanio, J.P., & Widaman, K.F. (2002). HIV-related stigma and knowledge in the United StatesHIV-related stigma and knowledge in the United States: Prevalence and trends, 1991-1999: Prevalence and trends, 1991-1999. . American Journal of Public Health, 92American Journal of Public Health, 92 (3), 371-377. (3), 371-377.

Models for Measuring Models for Measuring Public StigmaPublic Stigma USAID HIV Stigma SurveyUSAID HIV Stigma Survey Compiled for use in developing countriesCompiled for use in developing countries Measures 1) Fear of casual contact, 2) Blame Measures 1) Fear of casual contact, 2) Blame

and value judgments, 3) Discrimination, 4) and value judgments, 3) Discrimination, 4) DisclosureDisclosure

Some items are also appropriate for self-Some items are also appropriate for self-stigma assessmentstigma assessment

Nyblade, L., & McQuarrie, K. (2006). Nyblade, L., & McQuarrie, K. (2006). Can we measure Can we measure HIV/AIDS-related stigma and discrimination?HIV/AIDS-related stigma and discrimination? Washington, DC: U.S. Agency for International Washington, DC: U.S. Agency for International Development.Development.

Measuring Self-StigmaMeasuring Self-Stigma The HIV Stigma ScaleThe HIV Stigma Scale Revised and improved versionRevised and improved version Measures 1) Enacted stigma, 2) Disclosure Measures 1) Enacted stigma, 2) Disclosure

concerns, 3) Negative self-image, & 4) Concern concerns, 3) Negative self-image, & 4) Concern with public attitudeswith public attitudes

Bunn, J. Y., Solomon, S. E., Miller, C., & Forehand, R. (2007). Bunn, J. Y., Solomon, S. E., Miller, C., & Forehand, R. (2007). Measurement of stigma in people with HIV: A reexamination Measurement of stigma in people with HIV: A reexamination of the HIV stigma scale. of the HIV stigma scale. AIDS Education and Prevention, 19AIDS Education and Prevention, 19, , 198-208.198-208.

Recent research indicates that minority status may Recent research indicates that minority status may importantly contribute to how self-stigma is experiencedimportantly contribute to how self-stigma is experienced

Rao, D., Pryor, J.B., Gaddist, B.W., Mayer, R. (in press) Stigma, Rao, D., Pryor, J.B., Gaddist, B.W., Mayer, R. (in press) Stigma, Secrecy, and Discrimination: Ethnic/Racial Differences in the Secrecy, and Discrimination: Ethnic/Racial Differences in the Concerns of People Living with HIV/AIDS. Concerns of People Living with HIV/AIDS. AIDS and BehaviorAIDS and Behavior..

Measuring Stigma-by-Measuring Stigma-by-AssociationAssociation Could parallel assessments of Could parallel assessments of

public stigma: cognitive, affective public stigma: cognitive, affective and behavioral reactions to and behavioral reactions to people associated with PLWHApeople associated with PLWHA

Could parallel assessments of Could parallel assessments of self-stigmaself-stigma

Measuring Measuring Institutional StigmaInstitutional Stigma Bottom line is the existence and Bottom line is the existence and

enforcement of stigmatizing laws enforcement of stigmatizing laws and policiesand policies

Measures of support for Measures of support for stigmatizing laws and policies are stigmatizing laws and policies are often included in public stigma often included in public stigma assessments (e.g. Herek’s assessments (e.g. Herek’s Surveys)Surveys)

Anti-Stigma Anti-Stigma InterventionsInterventions

Almost all interventions intended to Almost all interventions intended to reduce public stigma rely in part upon reduce public stigma rely in part upon education/information strategies. education/information strategies. Topics include:Topics include:– Factual description of the diseaseFactual description of the disease– Modes of transmissionModes of transmission– Methods of risk reductionMethods of risk reduction– Persuasive arguments about NOT blaming Persuasive arguments about NOT blaming

PLWHAPLWHA– Pleas for greater tolerancePleas for greater tolerance

Anti-Stigma Anti-Stigma InterventionsInterventions Efforts to reduce public stigma that Efforts to reduce public stigma that

include include contactcontact with a PLWHA often seem with a PLWHA often seem to work better than those that include to work better than those that include education/information alone.education/information alone.

Systematic analyses of how contact Systematic analyses of how contact reduces prejudice suggest that contact reduces prejudice suggest that contact has an effect upon the has an effect upon the affective affective componentcomponent of public stigma. of public stigma.

Contact that results in Contact that results in empathyempathy, a positive , a positive affective response to a PLWHA may be affective response to a PLWHA may be most effective in reducing stigma.most effective in reducing stigma.

Interventions focusing Interventions focusing upon self-stigmaupon self-stigma Interventions of this sort often try to Interventions of this sort often try to

help PLWHAs psychologically cope with help PLWHAs psychologically cope with the emotional distress produced by self-the emotional distress produced by self-stigmastigma

Recent research found that a technique Recent research found that a technique called called emotional writing disclosureemotional writing disclosure can can help PLWHA cognitively reorganize their help PLWHA cognitively reorganize their thoughts and emotions concerning HIV thoughts and emotions concerning HIV and reduce their sense of self-stigma.and reduce their sense of self-stigma.

Abel, R. (2007). Women with HIV and stigma, Abel, R. (2007). Women with HIV and stigma, Family Family Community Health, 30Community Health, 30, 104-114., 104-114.

SummarySummary

Negative reactions to PLWHA represent Negative reactions to PLWHA represent a form of prejudicea form of prejudice

There are four related, but distinct There are four related, but distinct types of stigma: public stigma, self-types of stigma: public stigma, self-stigma, stigma-by-association, & stigma, stigma-by-association, & institutional stigmainstitutional stigma

Interventions should identify what types Interventions should identify what types of stigma are targeted and measure of stigma are targeted and measure stigma change in relevant domainsstigma change in relevant domains