1. HIV-Related Stigma John B. Pryor, Ph.D. Illinois State University HIV/AIDS Anti-Stigma and Discrimination Forum Academy for Educational Development (AED) Washington, DC October 29, 2007

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

3. Four types of stigma Public Stigma – people’s social and psychological reactions to someone with a perceived stigma Public Stigma – people’s social and psychological reactions to someone with a perceived stigma Self-Stigma – how one reacts to the possession of a stigma Self-Stigma – how one reacts to the possession of a stigma Stigma-by-Association – social and psychological reactions to people somehow associated with a stigmatized person Stigma-by-Association – social and psychological reactions to people somehow associated with a stigmatized person Institutional Stigma – the legitimatization and perpetuation of a stigmatized status by society’s institutions and ideological systems Institutional Stigma – the legitimatization and perpetuation of a stigmatized status by society’s institutions and ideological systems

4. Public Stigma Social psychologists view negative reactions to a perceived stigma as a form of prejudice. Social psychologists view negative reactions to a perceived stigma as a form of prejudice. Prejudice is essentially a negative attitude toward people perceived to be members of an out-group. Prejudice is essentially a negative attitude toward people perceived to be members of an out-group. USTHEM

5. Tri-Part Conceptual Model of Public Stigma Cognitive Component Behavioral Component Affective Component

6. Cognitive components of reactions to perceived HIV-related stigma Stereotypes about PLWHA Stereotypes about PLWHA –Connections to sexual orientation & drug use Ideology of blame Ideology of blame –Belief that bad things happen to bad people Beliefs about prejudice Beliefs about prejudice –Are negative reactions to PLWHA seen as a form of prejudice? Conceptions about risk and transmission Conceptions about risk and transmission –Risks associated with casual contact CB A

7. Affective (emotional) components of reactions to perceived HIV- related stigma Can be positive (e.g., compassion) or negative (e.g., fear, disgust, anger, etc.) Can be positive (e.g., compassion) or negative (e.g., fear, disgust, anger, etc.) Can be either automatic (reflexive) or derived from conscious deliberation Can be either automatic (reflexive) or derived from conscious deliberation CB A

8. Behavioral components of reactions to perceived HIV-related stigma Avoidance (or approach) – a general behavioral tendency Avoidance (or approach) – a general behavioral tendency Harassment, ridicule, & ostracism Harassment, ridicule, & ostracism Discrimination Discrimination –Employment –Housing –Educational opportunities –Access to medical care –Insurance Pro-social behavior – social support Pro-social behavior – social support Support for public policies Support for public policies –Coercive policies –Anti-discrimination policies CB A

9. What is self- stigma?

10. Self-stigma – enacted (actual) or perceived (anticipated) social experiences Related to knowledge of public reactions to stigma – reflected appraisals of others Related to knowledge of public reactions to stigma – reflected appraisals of others Disclosure concerns Disclosure concerns Label avoidance Label avoidance –Avoiding HIV testing –Avoiding disclosure of HIV status –Avoiding treatment –Avoiding safer sex Withdrawal from situations where ill treatment might occur Withdrawal from situations where ill treatment might occur –Feelings of social isolation Internalization of negative label Internalization of negative label –Reduction of self-esteem & self-efficacy –Hopelessness and depression –Reduced immune functioning

11. Stigma-by-Association To some degree all of the public stigma reactions to PLWHA are also experienced by uninfected people who are somehow associated with PLWHA To some degree all of the public stigma reactions to PLWHA are also experienced by uninfected people who are somehow associated with PLWHA HIV-related stigma affects families – shame & disclosure concerns HIV-related stigma affects families – shame & disclosure concerns Stigma-by-Association contributes to burnout among care-givers and health care providers Stigma-by-Association contributes to burnout among care-givers and health care providers Concern about stigma-by-association contributes to social avoidance Concern about stigma-by-association contributes to social avoidance

12. Institutional 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

13. Institutional stigma Public stigma toward persons living with HIV/AIDS is related to the perceived connections of HIV/AIDS to other stigmas Policies of private and governmental institutions that have a negative impact people with these related stigmas also serve to legitimize and perpetuate HIV- related stigma

14. African Americans MSM IV Drug Users Stigmas related to HIV

15. African Americans MSM IV Drug Users Societal responses to related stigmas Sexual Prejudice Racism Criminalization of drug addiction

16. Related Institutional Stigma Sexual prejudice – state laws banning gay marriage Sexual prejudice – state laws banning gay marriage Institutional racism – 1 in 7 Black men between ages 25 & 29 are in prison Institutional racism – 1 in 7 Black men between ages 25 & 29 are in prison Criminalization of Drug Addiction - Federal ban on Criminalization of Drug Addiction - Federal ban on syringe exchange

17. First Question for Interventions: What types of HIV-related stigma are you trying to change? Public stigma? Public stigma? Self-stigma? Self-stigma? Stigma-by-Association? Stigma-by-Association? Institutional Stigma? Institutional Stigma?

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

19. WHY MEASURE STIGMA? Evaluate anti-stigma interventions Evaluate anti-stigma interventions Contribute to the knowledge base of identifying effective interventions Contribute to the knowledge base of identifying effective interventions Compare HIV stigma across contexts Compare HIV stigma across contexts Determine whether new trends in services and availability of treatment reduce stigma Determine whether new trends in services and availability of treatment reduce stigma Detect if a program is having unintended consequences Detect if a program is having unintended consequences Source: Nyblade & MacQuarrie (2006)

20. Models for Measuring Public Stigma Herek’s HIV/AIDS Stigma Survey Herek’s HIV/AIDS Stigma Survey Assessed with three national samples, comparison norms over time Assessed with three national samples, comparison norms over time Measures 1) Support for coercive policies, 2) Negative feelings about PLWHA, 3) Attributions of blame & responsibility, 4) Transmission beliefs, 5) Avoidance intentions, & 6) Feelings of discomfort with contact Measures 1) Support for coercive policies, 2) Negative feelings about PLWHA, 3) Attributions of blame & responsibility, 4) Transmission beliefs, 5) Avoidance intentions, & 6) Feelings of discomfort with contact Herek, G.M., Capitanio, J.P., & Widaman, K.F. (2002). HIV- related stigma and knowledge in the United States: Prevalence and trends, 1991-1999. American Journal of Public Health, 92 (3), 371-377. Herek, G.M., Capitanio, J.P., & Widaman, K.F. (2002). HIV- related stigma and knowledge in the United States: Prevalence and trends, 1991-1999. American Journal of Public Health, 92 (3), 371-377.HIV- related stigma and knowledge in the United States: Prevalence and trends, 1991-1999HIV- related stigma and knowledge in the United States: Prevalence and trends, 1991-1999

21. Models for Measuring Public Stigma USAID HIV Stigma Survey USAID HIV Stigma Survey Compiled for use in developing countries Compiled for use in developing countries Measures 1) Fear of casual contact, 2) Blame and value judgments, 3) Discrimination, 4) Disclosure Measures 1) Fear of casual contact, 2) Blame and value judgments, 3) Discrimination, 4) Disclosure Some items are also appropriate for self-stigma assessment Some items are also appropriate for self-stigma assessment Nyblade, L., & McQuarrie, K. (2006). Can we measure HIV/AIDS-related stigma and discrimination? Washington, DC: U.S. Agency for International Development. Nyblade, L., & McQuarrie, K. (2006). Can we measure HIV/AIDS-related stigma and discrimination? Washington, DC: U.S. Agency for International Development.

22. Measuring Self-Stigma The HIV Stigma Scale The HIV Stigma Scale Revised and improved version Revised and improved version Measures 1) Enacted stigma, 2) Disclosure concerns, 3) Negative self-image, & 4) Concern with public attitudes Measures 1) Enacted stigma, 2) Disclosure concerns, 3) Negative self-image, & 4) Concern with public attitudes Bunn, J. Y., Solomon, S. E., Miller, C., & Forehand, R. (2007). Measurement of stigma in people with HIV: A reexamination of the HIV stigma scale. AIDS Education and Prevention, 19, 198-208. Bunn, J. Y., Solomon, S. E., Miller, C., & Forehand, R. (2007). Measurement of stigma in people with HIV: A reexamination of the HIV stigma scale. AIDS Education and Prevention, 19, 198-208. Recent research indicates that minority status may importantly contribute to how self-stigma is experienced Recent research indicates that minority status may importantly contribute to how self-stigma is experienced Rao, D., Pryor, J.B., Gaddist, B.W., Mayer, R. (in press) Stigma, Secrecy, and Discrimination: Ethnic/Racial Differences in the Concerns of People Living with HIV/AIDS. AIDS and Behavior. Rao, D., Pryor, J.B., Gaddist, B.W., Mayer, R. (in press) Stigma, Secrecy, and Discrimination: Ethnic/Racial Differences in the Concerns of People Living with HIV/AIDS. AIDS and Behavior.

23. Measuring Stigma-by- Association Could parallel assessments of public stigma: cognitive, affective and behavioral reactions to people associated with PLWHA Could parallel assessments of public stigma: cognitive, affective and behavioral reactions to people associated with PLWHA Could parallel assessments of self- stigma Could parallel assessments of self- stigma

24. Measuring Institutional Stigma Bottom line is the existence and enforcement of stigmatizing laws and policies Bottom line is the existence and enforcement of stigmatizing laws and policies Measures of support for stigmatizing laws and policies are often included in public stigma assessments (e.g. Herek’s Surveys) Measures of support for stigmatizing laws and policies are often included in public stigma assessments (e.g. Herek’s Surveys)

25. Anti-Stigma Interventions Almost all interventions intended to reduce public stigma rely in part upon education/information strategies. Topics include: Almost all interventions intended to reduce public stigma rely in part upon education/information strategies. Topics include: –Factual description of the disease –Modes of transmission –Methods of risk reduction –Persuasive arguments about NOT blaming PLWHA –Pleas for greater tolerance

26. Anti-Stigma Interventions Efforts to reduce public stigma that include contact with a PLWHA often seem to work better than those that include education/information alone. Efforts to reduce public stigma that include contact with a PLWHA often seem to work better than those that include education/information alone. Systematic analyses of how contact reduces prejudice suggest that contact has an effect upon the affective component of public stigma. Systematic analyses of how contact reduces prejudice suggest that contact has an effect upon the affective component of public stigma. Contact that results in empathy, a positive affective response to a PLWHA may be most effective in reducing stigma. Contact that results in empathy, a positive affective response to a PLWHA may be most effective in reducing stigma.

27. Interventions focusing upon self-stigma Interventions of this sort often try to help PLWHAs psychologically cope with the emotional distress produced by self-stigma Interventions of this sort often try to help PLWHAs psychologically cope with the emotional distress produced by self-stigma Recent research found that a technique called emotional writing disclosure can help PLWHA cognitively reorganize their thoughts and emotions concerning HIV and reduce their sense of self-stigma. Recent research found that a technique called emotional writing disclosure can help PLWHA cognitively reorganize their thoughts and emotions concerning HIV and reduce their sense of self-stigma. Abel, R. (2007). Women with HIV and stigma, Family Community Health, 30, 104-114. Abel, R. (2007). Women with HIV and stigma, Family Community Health, 30, 104-114.

28. Summary Negative reactions to PLWHA represent a form of prejudice Negative reactions to PLWHA represent a form of prejudice There are four related, but distinct types of stigma: public stigma, self-stigma, stigma- by-association, & institutional stigma There are four related, but distinct types of stigma: public stigma, self-stigma, stigma- by-association, & institutional stigma Interventions should identify what types of stigma are targeted and measure stigma change in relevant domains Interventions should identify what types of stigma are targeted and measure stigma change in relevant domains