Transcript The other epidemic: HIV/AIDS Stigma and discrimination

Health Consequences of
AIDS-related Stigma
Maria L Ekstrand, PhD
Center for AIDS Prevention Studies
University of California, San Francisco
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.
Stigma, prejudice & discrimination
Related but not synonymous:
Prejudice: An attitude. An individual
evaluation or judgment of a group
Discrimination: A behavior. Refers to
treatment of individuals based on their
membership in a group.
Types of stigma
Felt Stigma - perception of societal normsre.
the stigmatized condition
Enacted Stigma - overt acts of stigma and
discrimination
Note: Even a few dramatic and public
enactments of stigma can drastically
increase the perception of felt stigma.
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
What drives AIDS stigma?
Research both in the US and abroad
suggests that it's fueled by two sub-types:
1) Instrumental stigma
- fear of casual transmission
2) Symbolic stigma
pre-existing prejudice toward those groups
who have been hardest hit by disease
Different intervention implications!
AIDS stigma not limited to PWAs
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 PWAs, even if
not infected themselves.
Personal stories from India
"I was in Tamil Nadu, was married off there. My
husband died two years ago and when I went
back to my village, there were huge protests.
They threw me out. I took refuge here along
with my daughter,"
"If a bride tests HIV positive, she will be dubbed
an AIDS patient and she will never get
married. Secondly, her virginity will always be
suspected and she will become a social
outcast"
Personal stories from India
"Media has made HIV look so frightening that we are scared. I
understand that it's not contagious, but neighbors had put a lot of
pressure. So I asked her to leave." (Landlord who evicted PWA)
An entire village became the target of stigma after one of its bus
drivers tested positive for HIV, resulting in villagers being unable
to find employment, being dismissed from nearby colleges, and
having difficulty arranging marriages. (ndtv.com)
A pt was taken to the ER with a severe breathing problem. While
in the midst of emergency treatment, the doctors discovered that
he was HIV positive. They screamed and jumped away from him,
discontinuing treatment. The patient died within an hour. (Delhi)
Consequences of AIDS-related
stigma and discrimination
It causes human suffering due to:
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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
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
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Treatment - afraid to disclose status to health care
staff and not wanting to be seen at "AIDS clinic"
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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 PWAs: High rates of
depression and suicide.
Prerana study
Examining adherence to HIV medications in
Bangalore, India:
• Patients reported that perceptions of stigma and fear
of discrimination prevented them both from purchasing
and taking their medication.
• Many complained of lack of privacy and did not want
to take their medication in front of others.
• Patients did not want to fill their prescriptions at the
local pharmacy, because of lack of confidentiality and
the risk of stigma and discrimination.
Prerana
Participants were typically unwilling to disclose their HIV
infection. “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”.
Stigma avoidance strategies included:
1) stating or implying that they had a different disease,
such as TB; 2) adopting a “don’t ask, don’t tell” stance;
3) lying outright about their HIV status; 4) seeking
treatment at a hospital far away from home; and 5)
refusing to explain written medical documents to
illiterate family members.
Prerana
Method: 299 HIV infected patients on
ART recruited from hospital clinic.
2/3 men and 1/3 women
Interviewed at baseline, six-month followup, and twelve-month follow-up visits
about their experiences with medication
and living with HIV
Prerana study
5 culturally specific measures developed:
1. heard stigma (stories about discrimination),
2. felt stigma (perceptions of the prevalence of
HIV stigma in one’s community),
3. internalized stigma (personal endorsement of
HIV stigmatizing beliefs),
4. enacted stigma (personal stigma
experiences), and
5. avoidant coping (strategies to avoid disclosing
one’s HIV serostatus to cope with stigma).
Prerana results
 Our stigma measures are moderately to
strongly correlated with one another.
 Stigma is related to suboptimal adherence
 In addition, being depressed was associated
with higher scores on:
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Felt stigma
Internalized stigma
Enacted stigma
Avoidant coping
The data from our qualitative and quantitative
work on AIDS stigma in South India show that:
 fear of stigma is associated with lack of HIV
status disclosure,
 the manifestation of AIDS stigma varies by
gender,
 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 lower ART adherence rates
So what can we do to reduce
AIDS-related stigma?
Stigma interventions
Few interventions to date
No rigorous evaluations conducted
Research suggests possible directions,
but setting-specific formative work needed
to ensure that local issues are addressed.
Reducing AIDS stigma
Targeting at multiple levels
Policy: Law and policy reforms needed globally
to prohibit discrimination of PWAs and to protect
those who are most vulnerable (e.g. sex
workers, MSM, women, substance users, ethnic
and racial minorities).
Social: Community-based programs, including
media (as appropriate in each setting). Work
through local NGOs
Institutional: Military, schools, prisons, hospitals,
and religious institutions and leaders.
Reducing AIDS stigma
Families - provide support and education in whatever
venue that is possible
Mobilize and support positive people and encourage
their involvement in activities and advocacy
Couples - in whatever setting that couples can be
reached, including testing and counseling
Individuals - during healthcare visits, testing and
counseling and other appropriate venues
Recruit Opinion Leaders - educate and involve them
Reducing stigma
Content of messages
Content needs to be tailored, based on:
– Cultural context and norms
– Prevalent health beliefs
– Local laws
– Setting-specific stigma dynamics
Specific infection fears
Pre-existing prejudices toward marginalized groups
Multiple stigmas?
Look for strengths as well as for challenges in
each cultural setting