Health Consequences of AIDSrelated Stigma

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• Health Consequences of AIDS-related Stigma

Maria L Ekstrand, PhD Center for AIDS Prevention
Studies University of California, San Francisco
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What is Stigma?

• Historically, stigma has had two components
• It's a mark of an enduring condition or attribute
• The condition is negatively valued by society
• As a consequence, those with the condition
  become discredited and disadvantaged.

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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.

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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.

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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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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!

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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.

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• 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"

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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)
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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 -gt 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 PWAs High rates
  of depression and suicide.

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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.

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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
  dont ask, dont 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.

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Prerana

• Method 299 HIV infected patients on ART
  recruited from hospital clinic.
• 2/3 men and 1/3 women
• Interviewed at baseline, six-month follow-up,
  and twelve-month follow-up visits about their
  experiences with medication and living with HIV

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Prerana study

• 5 culturally specific measures developed
• heard stigma (stories about discrimination),
• felt stigma (perceptions of the prevalence of HIV
  stigma in ones community),
• internalized stigma (personal endorsement of HIV
  stigmatizing beliefs),
• enacted stigma (personal stigma experiences), and
  
• avoidant coping (strategies to avoid disclosing
  ones HIV serostatus to cope with stigma).

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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
• Felt stigma
• Internalized stigma
• Enacted stigma
• Avoidant coping

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• 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

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So what can we do to reduce AIDS-related stigma?
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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.

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Reducing AIDS stigmaTargeting 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.

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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

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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