The Role of AIDS Stigma in Global Health

Maria L Ekstrand, PhD

Center for AIDS Prevention Studies
University of California, San Francisco
St John's Research Center
Bengaluru, India

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

Types of stigma & discrimination

Felt 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

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

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, caregivers, AIDS healthcare workers and anyone
else associated with PLHIVs, even if not
infected themselves.

Consequences of AIDS-related
stigma and discrimination
It causes human suffering due to:
Loss of employment
v Loss of housing
v Rejection by family
v Ostracized by community
v Denied schooling
v Denied marriage
v Restrictions on movement -> Quarantine
v Physical and verbal abuse and threats
and
v Interferes with AIDS prevention and treatment services
v

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.

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

HIV-related stigma:
Adapting a theoretical framework for use in India

Methods
l

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

Study 1. Stigma coping strategies:

(from qualitative interviews, n=16)

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

such as TB
2) Dont ask, dont 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.

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.

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 medication
in 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 and
discrimination. 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 their
environments. Not using those strategies missed doses

Perceptions of stigma Lack of disclosure use of avoidant

coping strategies reduced adherence/ delays in prescription refills.

Key stigma domain measures developed

(Study 1. Quantitative piece n=229)

l Felt

stigma - perceived community norms

l Internalized stigma the degree to which felt
stigma has been internalized
l Enacted stigma overt acts of discrimination
l Vicarious stigma overt acts of discrimination
known to have happened to others
l Symbolic stigma - the use of AIDS as a vehicle
for expressing hostility toward already
stigmatized groups

Study 1. Enacted stigma events

n=229
l 15%
l 13%
l 11%
l 10%
l
l
l

8%
6%
5%

People look at me differently

Mistreated by healthcare worker
Told not to share food or utensils
Blamed by family
Asked not to touch/care for a child
Family members avoided me
Refused medical care

Heard/Vicarious Stigma
n=229
69%
l 62%
l 57%
l 57%
l 53%
l 43%
l 42%
l 42%
l 36%
l

People looked at them differently

Family refused to provide care
Forced out by family
Avoided by their relatives
Ostracized by their village
Asked not to touch/care for child
Blamed by family
People wont touch their dead bodies
Told not to share food or utensils

Stigma Theoretical Framework, India

Summary, Study 1. PLHIV Stigma

l Prevalence

of enacted stigma relatively low

l Prevalence of vicarious/heard stigma high
l Disclosure prevalence low
l Frequent use of disclosure avoidance strategies
l Enacted and vicarious stigma --> felt stigma
l Felt and internalized stigma --> less disclosure
l Enacted & internalized stigma, as well as disclosure
avoidance --> depression and isolation

Stigma is associated with delay of care-seeking

among PLHIV

Samanatha Study Methods

l

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

Stigma and delay of Healthcare-seeking

Enacted and
internalized
stigma

Avoidance of
HIV status
disclosure
Depression

Delay of
Healthcareseeking

* The associa+on between s+gma and delayed care is mediated

by avoiding disclosure of HIV status and depression.

Samanatha Study:
AIDS stigma in the general population

Stigma attitudes and intent to discriminate:

General Population (n=1,000 in BLR and MUM)

Factors associated with AIDS stigma &

discrimination in the general population:
The role of instrumental and symbolic stigma

(Ekstrand et al. 2011)

In summary: Qualitative and quantitative data on

AIDS stigma among PLHIV and the public show:
Stigma

levels and intent to discriminate are high in the

general 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

Samanatha Study:
AIDS Stigma Among Health Workers

Reported HCW stigma and intent to discriminate

Factors associated AIDS stigma in health workers

Transmission misconceptions
Instrumental stigma, work
Negative feelings toward PLHA
Blame
Freq. professional contact PLHA
Transmission knowledge
Symbolic stigma
Income
Knows PLHA personally
Age

p<.10; * p<.05; ** p<.01; *** p=.001

All models also control for site
R-square = .32

Bivariate
Correlation
r
.40 ***
.30 ***
.25 ***
.23 ***
-.21 ***
-.19 **
.16 **
-.14 *
-.11
-.11

Multivariate
linear regression

.32 ***
.19 ***
.15 **
.13 *
-.18 ***
.00
.08
-.05
-.06
-.03

Conclusions: Health care provider stigma

High levels of stigma attitudes in all three groups
Majority report that they would either refuse to
treat 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)

Reducing stigma among health care providers in India

DriSti: A Tablet-administered HIV stigma reduction

intervention for Indian health care providers

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

2-session tablet administered intervention:

Session 1:
Stigma basics
Stigma in healthcare settings (virtual walk-through + videos)
Intersecting stigmas
Session 2:
Transmission routes and misconceptions
How does fear influence our behaviors?
The importance of universal precautions
(https://app.box.com/files/0/f/1647368134/Dristi_Intervention)
Session 3: In person, skills-building group session
Co-facilitated by study staff and PLHIV

Virtual Walkthrough

Virtual walk-through locations

h>
h>ps:/

Stigma situations
https://youtu.be/0fh8q3sG2Fg
h>ps://youtu.be/r1gqAEwHhiw

PLHIV videos
h>ps://youtu.be/8CEODSvMrS4

h>ps://youtu.be/AoaODp4EEv0

Session 3. Skills building group session,

co-facilitated by study staff and PLHIV
I. INTRODUCTION, ICEBREAKER & REVIEW OF MATERIAL: (max 20
min)
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