HIV/AIDS-Related Stigma in Asia & the Pacific

Hawaii AIDS Education & Training Center

June 2009

What do you think?

1. Wow

2. Yes

3. Yuck

4. No

5. OMG

What do you think?

1. Wow

2. Yes

3. Yuck

4. No

5. OMG

What do you think?

1. Wow

2. Yes

3. Yuck

4. No

5. OMG

What do you think?

1. Wow

2. Yes

3. Yuck

4. No

5. OMG

What do you think?

1. Wow

2. Yes

3. Yuck

4. No

5. OMG

What do you think?

1. Wow

2. Yes

3. Yuck

4. No

5. OMG

Would you have your hair cut by a homosexual person?

1. Yes

2. No

3. I don’t know

Would you refuse service in a restaurant by a homosexual

person?

1. Yes

2. No

3. I don’t know

Does a feminine acting male make you feel uncomfortable?

1. Yes

2. No

3. I don’t know.

Do you have laws against discrimination?

1. Yes

2. No

3. I don’t know.

Do the antidiscrimination laws cover:

1. Race

2. Gender

3. Religion

4. Sexual Orientation

5. All of the above

6. Some of the above

7. I don’t know

Does your hospital have a policy of confidentiality of medical

information?

1. Yes

2. No

3. I don’t know

Would you put an HIV/AIDS patient in an isolation room?

1. Yes

2. No

3. I don’t know

Definitions

• Stereotype

• Shame

• Stigma

• Discrimination

Stereotype

• A list of oversimplified, exaggerated, or demeaning assumptions relating to a group

• Another group of people come to agree with these assumptions regardless of the facts

• Individuals are then prejudged by these erroneous beliefs

Stereotypes of Gay Men

• All gay men are effeminate.

• All gay men listen to show tunes

• All gay men have a lisp

Stereotypes of Lesbians

• All lesbians fall into 1 of 3 groups, – butch, – femme – or lipstick lesbians.

• All lesbians work in construction, the military, law enforcement, or truck driving.

• All feminists are lesbians and hate men

Shame

• Those experiencing it may feel worthless and that there is no redemption

• Shame is delivered by others via judgments ("expose" others’ beliefs or behaviors)

• "To shame“ means to assign shame to another

• Literally saying "Shame!" or "Shame on you!"

Stigma

• Severe social disapproval of minority beliefs or behaviors

• Stigma often leads to marginalization

Stigma Come In Three Forms

First, external deformations, such as:

• scars,

• leprosy,

• physical disability

Stigma Come In Three Forms

Second, differences in personal traits, such as:

•mental illness,

•Drug/alcohol addiction,

•and criminal backgrounds

Are stigmatized in this way.

Stigma Come In Three Forms

Thirdly, “social stigmas" are traits, imagined or real, of

• ethnic groups,

• nationalities,

• or religions

That are considered a deviation from what is perceived the mainstream of society

Basis of Stigma

Stigma is typically based on

• Stereotypes,

• Ignorance,

• Irrational or unfounded fears,

• Or a lack of information pertaining to a particular person or group

Discrimination

• Unfair treatment of a person or group on the basis of prejudice; for example,

• You cannot marry a white person because you are black.

• You cannot join the Boy Scouts because you are gay.

• You cannot be admitted to a nursing home because you have HIV.

HIV/AIDS-Related Stigma

• Definition & Identification of Stigma

• Measuring the Extent of Stigma

• Assessing the Impact of Stigma on the Effectiveness of HIV Prevention & Treatment Programs

• Reducing Stigma

HIV/AIDS-Related Stigma Definition

• Prejudice and discrimination directed at people living with HIV/AIDS (PLWHA)

• It can result in PLWHA being– rejected from their community, – shunned, – neglected– discriminated against – or even physically hurt.

Measuring Stigma

• There are currently no standard measures of individual as well as institutional stigma.

• Questionnaires, reviews of existing policies and laws are some ways of measuring stigma.

• Measuring access to treatment and counseling for HIV patients are markers for HIV related discrimination and therefore stigma.

Measuring Stigma

• Questions on stigma against an individual:– If a member of your family became sick with

AIDS, would you be willing to care for them at home?

– If a food seller you knew had HIV, would you buy food from them?

– If a member of your family had HIV, would you want it to be kept a secret?

Measuring Stigma

• Questions of the Stigmatized Individual:– Are you afraid to take an HIV test because

you fear isolation or rejection?– Do you have trouble disclosing your HIV

status to your family?

Measuring Stigma

• Questions on stigma as a institution or society:– Does your hospital place HIV patients in a

special part of the hospital?– Do healthcare workers refuse to take care of

an HIV patient?

Impact of Stigma on HIV Programs

• Prevents patients from taking the HIV Test

• Decreases resources for treatment programs

• Decreases access to treatment programs

Reducing Stigma

• First recognizing that it exist.

• Baseline Measurement.

• Implement Programs to reduce it with focus on:– Individual– Institution (Society and Culture)– HIV Patients Ability to Cope with it

Reducing Stigma

• The presence of national HIV education campaigns especially focusing on how one acquires HIV and promotion of HIV testing can be measures of a countries efforts to reduce stigma

Reducing Stigma

• HIV Education especially on how HIV is transmitted.

• Increase access to treatment

• Change or Add laws regarding confidentiality and discrimination.

• Improve standard of living, status of women, availability of drug rehabilitation.

Reducing Stigma

• HIV Patients ability to cope with it– Improve access to HIV Testing, make HIV

testing a part of routine care– Treatment and Care to improve the ability to

lead a productive life as well as to improve appearance

– Empowerment: Support Groups– Aggressively treat Anxiety & Depression

Acknowledgements

• Mahajan, A.P., et al, AIDS 2008, 22 (suppl): 567-579, “Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward.”

• UNAIDS, “Developing Indicators for Measuring Stigma and Discrimination and the Impact of Programmes to Reduce it: Summary of Projects and Research to Date.”

• Genberg, B.L., et al, AIDS Behav., (2008) 12:772-780, “Assessing HIV/AIDS Stigma and Discrimination in Developing Countries.”

Panelist

• Raymond Alejo, RN: Patient Perspective

• Dr. Elizabeth Keller: Caregiver Perspective

• Dr. Cho Cho Thien: Healthcare Provider Perspective

• Eleanor Sos, RN: Community Perspective

From The Patient’s Point of View

• Stigma is a Powerful Feeling

• May lead to irrational behaviors

• Huge barrier to care

• Individualize approach to addressing stigma

From the Caregiver’s Point of View

• “Guilt by Association”

• They live in the community and share in the stigma.

• Barrier to care.

• Lossed opportunity to share in a loved ones final journey

From the Healthcare Provider’s Point of View

• HCP are people too!

• Reaction is more from fear

• Increase knowledge and education about disease process

• Address risk to themselves

• HCP need to recognize their own biases

From the Community’s Point of View

• Education is the key

• Use of prominent community leaders (e.g. CPG members), organizations (e.g. churches)

• Local “Poster Person PWA”

• Incorporation into community life (World AIDS Day Activity, Health Fairs)

Mahalo

Questions?