Ekstrand_HIVAIDS Stigma 25

8/17/2019 Ekstrand_HIVAIDS Stigma 25

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The Role of AIDS Stigma in Global Health

Maria L Ekstrand, PhDCenter for AIDS Prevention Studies

University of California, San Francisco

St John's Research Center

Bengaluru, India


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What is Stigma?

Historically, stigma has had two components:

1)

It's a mark of an enduring condition or attribute

2) The condition is negatively valued by society

As a consequence, those with the condition become discredited and disadvantaged.

Goffman, 1963, Herek, 2002


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Types of stigma & discriminationFelt Stigma - perception of societal norms re. the

stigmatized condition

Enacted Stigma – Overt acts of stigma, i.e.

Discrimination, usually driven by:

Instrumental stigma - fear of casual transmission

Symbolic stigma - pre-existing prejudice toward

those groups who have been hardest hit

Internalized stigma – felt stigma internalized

Vicarious stigma- hearing/observing s&d of others

Stigma fears – based on anticipated discrimination


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Why is AIDS so highly stigmatized?

Stigma is more intense when the condition is:

1) Perceived as lethal and incurable

2) Perceived to be the responsibility of the bearer


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AIDS stigma not limited to PLHIV

"Courtesy stigma":

Refers to shared stigma by anyone associated

with the condition, even if uninfected.

Has been reported by family members, care-

givers, AIDS healthcare workers and anyone

else associated with PLHIVs, even if not

infected themselves.


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Consequences of AIDS-related

stigma and discrimination

It causes human suffering due to:

!

Loss of employment

!

Loss of housing

!

Rejection by family!

Ostracized by community

!

Denied schooling

! Denied marriage

!

Restrictions on movement -> Quarantine !

Physical and verbal abuse and threats

and

!

Interferes with AIDS prevention and treatment services


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Health Consequences of AIDS Stigma

"

Prevention - afraid to access prevention services and be

identified as member of "at risk" group.

- afraid to disclose positive serostatus to sex partner

"

Treatment - afraid to disclose status to health care staff and

not wanting to be seen at "AIDS clinic"

"

Research - not wanting to identify as member of

stigmatized group. Concerns of loss of confidentiality

"

Care - unwilling to provide care for sick family member.Unwilling to go into AIDS treatment field

" Mental health consequences for PLHIVs: High rates of

depression and suicide.


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Stigma and HIV in India Research Program

1) Formative work and development of theoretical framework

2) The relationship between HIV stigma and mental/physical health

3) HIV stigma and discrimination among the uninfected public

4) HIV stigma and discrimination among health care providers

5) Reducing stigma among South Indian nursing students

6) Reducing AIDS stigma among Health Providers in India


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HIV-related stigma:

Adapting a theoretical framework for use in India


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Methods

# Study 1: Formative qualitative study:

– Qualitative interviews conducted with 16 PLHIV to

explore their stigma experiences and coping strategies

– Additional interviews with family members (n= 16)

and health care providers (n=12)

– Standard stigma scales modified based on these results

# Study 2: Quantitative study:

– 229 PLHIV interviewed

– Examined levels and correlates of stigma


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Study 1. Stigma coping strategies:

(from qualitative interviews, n=16)

1) Stating or implying that they had a different disease,

such as TB

2) “Don’t ask, don’t tell”

3) Lying outright about their HIV status

4) Seeking treatment at a hospital far away from home

5) Refusing to explain written medical documents to illiterate

family members.


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Study 1. The role of stigma in HIV status

disclosure: (from qualitative interviews, n=16)

Participants were typically unwilling to disclose

their HIV infection, as illustrated by the quote below:

“My wife knows that I had gone to the hospital

and taken treatment. I told her not to tell anyone

as it is a humiliation for us.”


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Study 1. The role of stigma in adherence:(from qualitative interviews n=16)

Harmful effects of stigma coping strategies:

•

Complaints re. lack of privacy, did not want to take their medicationin front of others. Hiding pills and pill taking --> missed doses

•

Patients did not want to fill their prescriptions at the local pharmacy, because of lack of confidentiality and the risk of stigma anddiscrimination. Lying about or hiding pharmacy visit --> delays

• Patients who reported forgetting taking their pills were afraid of

using any memory strategies that might be obvious to others in theirenvironments. Not using those strategies$ missed doses

• Perceptions of stigma$ Lack of disclosure$ use of avoidantcoping strategies$ reduced adherence/ delays in prescription refills.


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Key stigma domain measures developed(Study 1. Quantitative piece n=229)

#

“Felt stigma” - perceived community norms#

“Internalized stigma” – the degree to which felt

stigma has been internalized

#

“Enacted stigma – overt acts of discrimination#

“Vicarious stigma” –overt acts of discrimination

known to have happened to others

#

“Symbolic stigma” - the use of AIDS as a vehiclefor expressing hostility toward already

stigmatized groups


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Study 1. Enacted stigma eventsn=229

# 15% People look at me differently

# 13% Mistreated by healthcare worker

#

11% Told not to share food or utensils#

10% Blamed by family

# 8% Asked not to touch/care for a child

#

6% Family members avoided me# 5% Refused medical care


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Heard/Vicarious Stigman=229

# 69% People looked at them differently

# 62% Family refused to provide care

# 57% Forced out by family

#

57% Avoided by their relatives

# 53% Ostracized by their village

# 43% Asked not to touch/care for child

#

42% Blamed by family

# 42% People won’t touch their dead bodies

# 36% Told not to share food or utensils


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Stigma Theoretical Framework, India


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Summary, Study 1. PLHIV Stigma

#

Prevalence of enacted stigma relatively low#

Prevalence of vicarious/heard stigma high

# Disclosure prevalence low

#

Frequent use of disclosure avoidance strategies# Enacted and vicarious stigma --> felt stigma

# Felt and internalized stigma --> less disclosure

#

Enacted & internalized stigma, as well as disclosure

avoidance --> depression and isolation


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Stigma is associated with delay of care-seeking

among PLHIV


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Samanatha Study Methods

# Structured interviews with 961 PLHIV living in

Mumbai and Bangalore

# Assessed:

–

Felt Stigma

– Internalized stigma

– Enacted stigma

–

Vicarious stigma

– Psychological distress

– Health care seeking behaviors


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Stigma and delay of Healthcare-seeking

! #$% &''()*&+(, -%./%%, '+01& &,2 2%3&4%2 )&5% *' 1%2*&.%2

-4 &6(*2*,0 2*')3('75% (8 9:; '.&.7' &,2 2%


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Samanatha Study:

AIDS stigma in the general population


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Stigma attitudes and intent to discriminate:General Population (n=1,000 in BLR and MUM)


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Factors associated with AIDS stigma &

discrimination in the general population:

The role of instrumental and symbolic stigma

(Ekstrand et al. 2011)

I Q li i d i i d


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In summary: Qualitative and quantitative data on

AIDS stigma among PLHIV and the public show:

"

Stigma levels and intent to discriminate are high in thegeneral healthcare seeking population

"

Among PLHIV, fear of stigma is associated with lack of

HIV status disclosure,

" internalization of stigma attitudes is associated with

depression,

" the use of avoidant coping strategies is related to

depression and lowered quality of life." Internalized stigma and avoidant coping are associated with

delays in health care seeking

S th St d


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Samanatha Study:

AIDS Stigma Among Health Workers


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Reported HCW stigma and intent to discriminate


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Factors associated AIDS stigma in health workers

Bivariate

Correlationr

Multivariate

linear regression !

Transmission misconceptions .40 *** .32 ***

Instrumental stigma, work .30 *** .19 ***

Negative feelings toward PLHA .25 *** .15 **

Blame .23 *** .13 *

Freq. professional contact PLHA -.21 *** -.18 ***

Transmission knowledge -.19 ** .00

Symbolic stigma .16 ** .08

Income -.14 * -.05Knows PLHA personally -.11 † -.06

Age -.11 † -.03† p


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• High levels of stigma attitudes in all three groups

• Majority report that they would either refuse totreat or would take unnecessary precautions

•

Driving factors appear to include:

* blame

* symbolic stigma (negative attitudes towards

PLHA and the groups most associated with HIV)* instrumental stigma (fear of infection& casual transmission misconceptions)

Conclusions: Health care provider stigma


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Reducing stigma among health care providers in India


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DriSti: A Tablet-administered HIV stigma reduction

intervention for Indian health care providers


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DriSti =Drive against Stigma Drishti= Insight/Vision in Sanskrit


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(https://app.box.com/files/0/f/1647368134/Dristi_Intervention)

2-session tablet administered intervention:

Session 1:

Stigma basics

Stigma in healthcare settings (virtual walk-through + videos)

Intersecting stigmas

Session 2:

Transmission routes and misconceptionsHow does fear influence our behaviors?

The importance of universal precautions

Session 3: In person, skills-building group session

Co-facilitated by study staff and PLHIV


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Virtual Walkthrough


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Virtual walk-through locations

$> $> @


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https://youtu.be/0fh8q3sG2Fg

Stigma situations

$>


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Session 3. Skills building group session,

co-facilitated by study staff and PLHIV

I. INTRODUCTION, ICEBREAKER & REVIEW OF MATERIAL: (max 20min)

a) Recap of key messages of Sessions 1 & 2

b) Any queries related to the tablet-administered sessions?

c) Facilitator explains the point of Session 3

II. PLHIV STORIES: (max 15 min)

a) PLHIV shares story about living with HIV and experiences with stigma in health

care settings.

b) How would you feel, how could this have been handled better?

III. GROUP – ROLE PLAY: (max 40 min) demonstrate stigma and include both discriminating and non-discriminating behaviors

IV. CONCLUSION

Opportunity for Qs, writing notes with feedback

Documents

Ekstrand_HIVAIDS Stigma 25