HIV-Related Stigma

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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
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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."

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Four types of stigma

• Public Stigma peoples social and psychological
  reactions to someone with a perceived 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
• Institutional Stigma the legitimatization and
  perpetuation of a stigmatized status by societys
  institutions and ideological systems

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Public Stigma

• 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.

US
THEM
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Tri-Part Conceptual Model of Public Stigma
Cognitive Component
Behavioral Component
Affective Component
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Cognitive components of reactions to perceived
HIV-related stigma

• Stereotypes about PLWHA
• Connections to sexual orientation drug use
• Ideology of blame
• Belief that bad things happen to bad people
• Beliefs about prejudice
• Are negative reactions to PLWHA seen as a form of
  prejudice?
• Conceptions about risk and transmission
• Risks associated with casual contact

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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 either automatic (reflexive) or derived
  from conscious deliberation

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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 social support
• Support for public policies
• Coercive policies
• Anti-discrimination policies

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What is self- stigma?
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Self-stigma enacted (actual) or perceived
(anticipated) social experiences

• Related to knowledge of public reactions to
  stigma reflected appraisals of others
• Disclosure concerns
• Label avoidance
• Avoiding HIV testing
• Avoiding disclosure of HIV status
• Avoiding treatment
• Avoiding safer sex
• Withdrawal from situations where ill treatment
  might occur
• Feelings of social isolation
• Internalization of negative label
• Reduction of self-esteem self-efficacy
• Hopelessness and depression
• Reduced immune functioning

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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
• HIV-related stigma affects families shame
  disclosure concerns
• Stigma-by-Association contributes to burnout
  among care-givers and health care providers
• Concern about stigma-by-association contributes
  to social avoidance

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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
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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

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Stigmas related to HIV
African Americans
MSM
HIV
IV Drug Users
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Societal responses to related stigmas
Sexual Prejudice
Racism
African Americans
MSM
HIV
IV Drug Users
Criminalization of drug addiction
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Related Institutional Stigma

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

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

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

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Second question How do you know if your
intervention worked?
Measuring Stigma
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WHY MEASURE STIGMA?

• Evaluate anti-stigma interventions
• Contribute to the knowledge base of identifying
  effective interventions
• Compare HIV stigma across contexts
• Determine whether new trends in services and
  availability of treatment reduce stigma
• Detect if a program is having unintended
  consequences

Source Nyblade MacQuarrie (2006)
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Models for Measuring Public Stigma

• Hereks HIV/AIDS Stigma Survey
• 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
• 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.

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Models for Measuring Public Stigma

• USAID HIV Stigma Survey
• Compiled for use in developing countries
• Measures 1) Fear of casual contact, 2) Blame and
  value judgments, 3) Discrimination, 4) Disclosure
• 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.

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Measuring Self-Stigma

• The HIV Stigma Scale
• Revised and improved version
• 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.
• 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.

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Measuring Stigma-by-Association

• Could parallel assessments of public stigma
  cognitive, affective and behavioral reactions to
  people associated with PLWHA
• Could parallel assessments of self-stigma

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Measuring Institutional Stigma

• 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. Hereks Surveys)

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Anti-Stigma Interventions

• 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

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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.
• 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.

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

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Summary

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