Stigma and
Participatory
Methods
Presented by:
Gillian Hansen
Christy Hudson
Kingsley Oriuwa
Michael Ong
Agenda
• Introduction
• Small group discussion
• Activity - We are all in the same boat
• Activity - Our experience
• Activity - Problem tree
• Mini-lecture: Defining Stigma
• Break
• Discussion - Stigma Conceptually
• Mini Lecture - Evidence & Methods
• Activity - Start/Stop Drama
• Closing Remarks
What are some stigmatized health
conditions you see in your
community?
Activity: Small Group Discussion
In small groups, please discuss the
following based on class readings:
1) How would you define stigma?
2) How is stigma different than
discrimination?
3) How is stigma being played out in
your community?
Stigma in History
The history of contagious diseases
has been one of mistrust,
avoidance measures, and
exclusion, intertwined with a
history of compassion and
solidarity.
Stories of Black Death in Europe
In August of 1349, the Jewish communities of Mainz and Cologne were exterminated
Source: Wikipedia
Tuberculosis
In India, it is not uncommon
for a man to leave his wife if
she develops TB, and if she
is not already married the
stigma attached to TB may
prevent a woman from
finding a husband.
People with TB often suffer from discrimination and
stigma, rejection and social isolation.
Not too long ago,
when the bird flu
situation broke
out, even the
birds were
stigmatized.
The leper colonies of Molokai
9
http://www.youtube.com/watch?v=EbdWsNJm83U
Obstetric Fistula
“In the case of the girls with an obstetric fistula, the
baby is usually stillborn and…together with the fact
that her odor is offensive.…[soon] her incontinence
becomes confused with venereal disease, and the
affected family feels a deep sense of shame. The
consequences are devastating: the girl is initially kept
hidden; subsequently, she finds it difficult to maintain
decent standards of personal hygiene because water
for washing is generally scarce; divorce becomes
inevitable and destitution follows, the girl being forced
to beg for her livelihood”
Harrison (1983). Obstetric fistula: One social calamity too many.
British Journal of Obstetrics and Gynecology, 90, 385-386.
Source:
http://www.icrw.org/docs/2005_report_stigma_synthesis.pdf
Read what a 65 years old Vietnamese
man has to say:
The government should not let PLHA
wandering the community and in the
society. They should be split off. I say
this not because I hate them, but
because I am thinking of the
protection of the community.
Father of PLHA, Vietnam
Source: http://www.icrw.org/docs/2005_report_stigma_synthesis.pdf p. 22
Stigma and why we care
"Stigma remains the single most important barrier to
public action. It is a main reason why too many
people are afraid to see a doctor to determine
whether they have the disease, or to seek treatment
if so. It helps make AIDS the silent killer, because
people fear the social disgrace of speaking about it,
or taking easily available precautions. Stigma is a
chief reason why the AIDS epidemic continues to
devastate societies around the world."
UN Secretary-General Ban Ki Moon
Activity: We are all in the same boat.
14
Activity: Our Experience
Think about a time in your life when you isolated or rejected other
people because they were different OR you felt isolated or
rejected because you were somehow different.
What happened?
How did you feel?
What was your attitude?
How did you behave?
Problem Tree
16
Stigma Defined
•
•
•
•
•
Felt or Perceived
Enacted
Individual vs
communal
Structural
Complex
Source: http://www.avert.org/aids-asia.htm
Stigma Defined
Stigma may be defined as negative attitudes
and prejudice toward a person that results in
avoidance of social interaction. Moreover,
negative attitude and beliefs towards this
group create prejudice which leads to
negative actions and discrimination.
The Causes of Stigma
•
•
•
•
•
Fear of illness
Fear of contagion
Fear of death
Fear of the unknown
Negative media portrayal
The Consequences of Stigma
•
•
•
Psychological
Physiological
Behavioral
21
http://www.wakeuppune.org/site/uploads/images/new_stigma_chakra_trans.gif
5 Minute Break
Empirical Evidence: Photo Voice

Used with 21 learners (12 female/9
male) in 8th and 9th grade in South
Africa

Method included exploring
perceptions about HIV, taking
photographs,exhibition and reflection,
and performance
24
Photo Voice - Results
Awareness of HIV related stigma
"People hate this man because they
don't want him in the community.
They think that if they let this person
live in the community that he will
spread this disease...so they tell him
to leave"
25
Photo Voice - Results
Acceptance of one's agency and
impact of one's actions
"I took this picture to motivate people. The
parents of this young learner past away last
year. He lives in a small kraal site and he is
sick with AIDS. His community not support
him."
Empirical Evidence: Faith Based Organizations
•
•
•
•
2 day participatory workshop in
Arusha,Tanzania
Representatives from 15 area
Lutheran churches, 8 women
and 7 men
Representatives had taken
part in a previous participatory
workshop
Use of focus group discussions
to reflect on success of
HIV/AIDS outreach in
communities and analysis of
factors that contribute to
spread and control of HIV
Faith Based Organizations: Results
•
•
•
•
•
Lack of definition for
stigma
Obstacles within the
church
Leadership was breaking
down stigma in
congregations
Stigma affects the whole
family
Many world languages
don't have a word for
stigma
Empirical Evidence: Leprosy in India
•
Experimental design using 3 nonrandomly selected
villages in Madhya Pradesh, India
•
269 people from high and low castes assigned to 3
groups: diffusion (91),participation (89) and control (89)
•
Diffusion: basic leprosy education over 3 days
•
Participation:create dialogue between health care
workers,participants and patients over 3 days. Included
observation of HOT 3 times a day.
•
Control: subjects interviewed over 2 day skin disease
camp
Leprosy in India: Results
•
Participatory group was more effective at lowering
perceived risk and increasing knowledge of cause.
•
Diffusion group also had lowered perception of risk,
but lower behavioral change than participatory
group.
"Strategies that address local cultural
ideologies,engage community, patients and health
workers in triadic dialogue and incorporate action
components have greater potential of reducing
stigma."
Empirical Evidence: What Works?
•
Meta-analysis of 22 studies that attempted to reduce
stigma around HIV
•
3 common themes in studies: increased tolerance for
PLHA, increased willingness to treat PLHA among
health care workers, improved coping strategies for
those living with virus
•
All studies were experimental, 10 out of 22 used
random assignment, 2-6 months was minimum followup
Empirical Evidence: Meta-analysis Results
•
Majority of results were
positive
•
Changing knowledge is
easier than changing
behavior and attitude
•
Information alone is
insufficient to change
attitudes
•
Contact with PLHA most
successful intervention
What Works?: Results
o
o
Nottingham, England (1993)
173 treatment,164 control
o
Goal: To evaluate effectiveness of AIDS education
program for young adults
o
Results: Experimental group improved knowledge
but no change in behavior, intentions or attitudes
towards PLHA. For example, 25% felt that people
with AIDS should be quarantined and a third
thought that those with HIV had only themselves to
blame.
What Works?: Results
•
Nigeria (1999)
•
223 treatment, 217 control
•
Goal: To improve knowledge, attitudes and behavior
among secondary students
•
Results: 79% of intervention group (versus 14% of
control) said they would be willing to touch and care
for someone with AIDS
What Works?: Results
•
South Africa, (1994)
•
231 treatment, 336 control
•
Goal: To assess impact of pilot program aimed at
behaviors for accepting HIV positive students
•
Results: Acceptance for HIV positive student from
17% to 41% (treatment) versus 10% to 11%
(control). Fear of infection, AIDS is a disgrace or
“bad” disease were the most commonly reported
reasons for rejection of a PLHA.
What Works?: Results
•
Tanzania, (1994)
•
814 primary school students
•
Goal: to test effectiveness of educational program that
included student led role-plays
•
Results: Attitudes towards PLHA improved from 6.4 to
8.8 in intervention group versus 6.9 to 6.5 in control
group
Methods: Participatory Video
Malawi Support Group (10 minutes)
http://www.youtube.com/watch?v=3sFeR5KlA3I
South African Youth Story (4 minutes)
http://www.youtube.com/watch?v=XUVtpozb9qI
Fistula Survivor (3 minutes)
http://www.youtube.com/watch?v=Jz82cHfjnng&NR=1
Activity: Start/Stop Drama
Take Home Messages
-Stigma not easily defined or measured
-Causes and consequences vary depending on culture, community and
disease
-Agenda oriented research
-Not enough research, but preliminary results are positive
-Research questions focus on intended behavior, not actual behavior
-Questions about the fidelity of the methods
-Participatory methods offer hope for both addressing and measuring stigma
related outcomes
Closing Activity
Take your original note card from the
board.
Write down one take away thought,
lesson or reflection.
We will read back to the class your
thoughts on the day as we close.
If you would like to keep your thought
private, feel free to do so.