HIV, Stigma and Me

1. HIV, Stigma and Me November 8, 2012 For Audio: Dial-in#: 866.394.2346 Participant Code: 397 154 6368#

2. Welcome & Overview- 5 mins The Stigma of HIV/AIDS – 30 mins Panel Discussion on Stigma, 20 mins Wrap-up & Evaluation, 5 mins Agenda Michael Hager in+care Campaign Manager National Quality Center New York, NY michael@nationalqualitycenter.org Conversation opportunities throughout webinar

3. Welcome & Overview • This Partners in+care webinar is offered as part of the in+care Campaign. • The in+care Campaign is a national effort to improve retention in HIV care. • Webinars are one of many Partners in+care activities designed to engage people living with HIV/AIDS and their allies in the in+care Campaign. For more information: www.incarecampaign.org

4. This is a “public event.” If you have confidentiality concerns: Your names appear on-line in the list of webinar registrants -consider just listening to the audio or to viewing the webinar at a later time, after it is posted at www.incarecampaign.org All webinars are recorded - do not use identifying information when asking questions Participation Guidelines For Audio: Dial-in#: 866.394.2346 Participant Code: 397 154 6368#

5. Actively participate and write your questions into the chat area during the presentation; we will also have a “pop up” question exercise, and will pause for conversation during the webinar Do not put us on hold Mute your line if you are not speaking (press *6, to unmute your line press #6) The slides and recording of this and other Partners in+care webinars are available for playback and group presentations at www.incarecampaign.org – “Resources” tab Participation Guidelines For Audio: Dial-in#: 866.394.2346 Participant Code: 397 154 6368#

6. Learning Objectives At the end of this webinar you will know: • What is stigma • Characteristics of different types of stigma • Examples of how stigma affects Persons Living with HIV • How to combat stigma-related barriers in HIV care

7. How great a factor is stigma in HIV care? Pop-up Question Has stigma ever kept you from accessing your clinical HIV services? Yes No I am not HIV+ Visit www.incarecampaign.org

8. HIV Stigma and Me - Our Goal Pop-up Question Do you think that we can overcome stigma even if we can’t eliminate it? Yes No I don’t know Visitwww.incarecampaign.org

9. The Stigma of HIV/AIDS • What is stigma? A theoretical analysis of four manifestations of stigma • Applying this theory to HIV-related stigma: • Public Stigma • Self-Stigma • Stigma by Association • Structural Stigma • Common elements of effective interventions – what works? John B. Pryor, PhD Distinguished Professor of Psychology Illinois State University Normal, IL pryor@ilstu.edu

10. What is Stigma? • The term stigma can be traced to the Ancient Greekswho used tattoos, scars, or brands to mark slaves, deserters, or criminals as people of reproach and disgrace. • Goffman (1963)described stigma as a sign or mark designating the bearer as spoiled, flawed, or compromised—someone less than fully human. • More recently, Dovidio, Major, & Crocker (2000) defined stigma as "a social construction that involves at least two fundamental components: (1) the recognition of difference based on some distinguishing characteristic, or 'mark'; and (2)a consequent devaluation of the person” (p. 3).

11. Three Social Psychological Functions of Stigma (Phelan, Link, & Dovidio, 2008) • To keep people down– stigmas help to legitimize and perpetuate social inequities (i.e., provide justification for the exploitation and dominance of lower status groups) • To make people conform - stigmas help to enforce social norms by serving as a punishment to those who choose non-conformity • To keep people away – stigmas trigger avoidance responses to a broad class of deviant human characteristics that potentially signal risk of infection

12. Four Manifestations of Stigma(Pryor & Reeder, 2011) Public stigma– people’s social and psychological reactions to someone with a perceived stigma 2) Self-stigma– how one reacts to the possession of a stigma 3) Stigma by association– social and psychological reactions to people who are somehow associated with a stigmatized person or how people react to being associated with a stigmatized person 4) Structural stigma– the legitimatization and perpetuation of a stigmatized status by society’s institutions and ideological systems

13. A Dynamic Model of the Four Manifestations of Stigma Structural Stigma Public Stigma Stigma by Association Self- Stigma

14. Applying the Stigma Model to HIV

15. Public Stigma • Social psychologists view negative reactions to a perceived stigma as a form of prejudice. • Prejudice is essentially a negative attitudetoward people perceived to be members of an out-group. • Stigmatized out-groups often have less social power than in-groups. THEM US

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

17. Cognitive Components of Reactions to Perceived HIV-Related Stigma Stereotypes about PLWHA • Connections to sexual orientation and drug use Beliefs about blame • Belief that bad things happen to bad people Conceptions of risk and transmission • Risks associated with casual contact Beliefs about prejudice • Are negative reactions to PLWHA seen as a form of prejudice?

18. Affective (emotional) components of reactions to perceived HIV-related Stigma • Affective reactions can be positive (e.g., compassion, empathy) or negative (e.g., fear, disgust, anger, etc.) • Affective reactions can be automatic (spontaneous or reflexive) or derived from conscious deliberation

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

20. What is self- stigma?

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

22. Stigma by Association Goffman called this courtesy stigma • 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 • Stigma-by-Association contributes to burnout among care-givers and health care providers • Being associated with a PLWHA may contribute to psychological distress • Concern about stigma by association contributes to social avoidance

23. Structural Stigma • Examples of stigmatizing government laws and policies in the U.S. • Until recently the U.S. government banned individuals with HIV from entering the United States as tourists, workers or immigrants • The U.S. Foreign Service still refuses to hire applicants with HIV. • The Transportation Security Administration has refused to hire applicants who are HIV+. • 34 states and 2 U.S. territories have criminal statutes based on perceived exposure to HIV, and prosecutions for alleged exposure to HIV have occurred in at least 39 states.

24. Structural Stigma • Examples of stigmatizing government laws and policies in the U.S. • Public stigma toward persons living with HIV/AIDS is related to the perceived connections of HIV/AIDS to other stigmas (e.g., homosexuality) • 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

25. Stigmas Related to HIV in the US African Americans MSM HIV IV Drug Users

26. Societal Responses to Related Stigmas in the US Sexual Prejudice Racism African Americans MSM HIV IV Drug Users Criminalization of drug addiction

27. Related Structural Stigmain the United States • Sexual prejudice – state laws in the US banning gay marriage, Federal Defense of Marriage Act • Institutional racism – 1 in 7 US Black men between ages 25 & 29 are in prison • Criminalization of Drug Addiction– Although the Federal funding ban on syringe exchange was rescinded recently, syringe exchange remains illegal in 15 states

28. Is it possible?

29. Some Common Sense steps in Conducting a Stigma Reduction Intervention • Identify the manifestations you want to target • Specify how you will measure stigma reduction • Identify some effective components of past interventions • Taylor intervention components to your audience • Evaluate your intervention’s outcomes and be prepared to adjust your ongoing plan

30. Components of Effective Interventions • Education – just the facts…“HIV 101”…still important in 2012 (for all manifestations) • Counseling – one-on-one & support groups, helping people cope with HIV as a disease and as a stigma (self-stigma & stigma-by-association) • Coping Skills Acquisition – master imagery and group desensitization are two techniques for acquiring coping skills (public stigma) • Contact with PLWHA – one-on-one, with a public speaker, or through media (public stigma)

31. Take Home Messages of Today’s Talk • Stigma is a multi-dimensional concept. Public stigma, self-stigma, stigma by association, and structural stigma represent different, but inter-related manifestations of stigma. • While public stigma is theorized to be pivotal to the other manifestations of stigma more research is needed that examines the inter-relationships empirically. • Stigma reduction interventions should identify specific manifestions of stigma for potential change and include evaluation measures that are appropriate

32. Stigma and Retention in Care Panel Discussion - Introduction John B. Pryor, PhD Distinguished Professor of Psychology Illinois State University Normal, IL pryor@ilstu.edu Kathleen Clanon, MD Medical Director Health Program of Alameda County Long time HIV Specialist Physician Oakland, CA kclanon@jba-cht.com Adam Thompson Peer Consultant National Quality Center PLWH Charlottesville, VA AdamTThompson@gmail.com

33. Speaking from Experience: Stigma in HIV/AIDS Care What is one way we can reduce the impact of HIV-related stigma in ourselves, and our clinics and communities? Let us know your experiences in the chat room!

34. Speaking from Experience: Stigma in HIV/AIDS Care What change is needed to ensure that HIV-related stigma does not keep persons from accessing clinical care? Let us know your experiences in the chat room!

35. Working in a Stigmatizing World Pop-up Question How likely are you to reevaluate the way you combat stigma in your life and clinic? More likely than before I watched this program No more or less likely than before I watched this program Less likely than before I watched this program Visit www.incarecampaign.org

36. Partners in+care Resources Visit Web / Open the Toolkit www.incarecampaign.org - “Partners” tab Sign up for Partners in+care Networkwww.incarecampaign.org – “Partners” tab Join Facebook Send email to incare@NationalQualityCenter.org – “Facebook” in subject line Campaign Headquarters:National Quality Center (NQC)90 Church Street, 13th floor New York, NY 10007Phone 212-417-4730