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Measuring stigmaMeasuring stigma
Wim H. van Brakel, Carlijn Voorend, Carin Rensen
KIT Leprosy Unit
Netherlands Leprosy Relief
VU Athena Institute
ContentContent
� Conceptual frameworks
� Review process
� Measurement quality standards
� Review results
� Recent examples of stigma measurement research.
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Types of stigmaTypes of stigma
People who are stigmatised
Experien-
ced stigma
(discrimi-
nation)
Internalised
stigma
(self-stigma)
Anticipated
stigma
(perceived)
Model modified from Mitchell Weiss, STI, Basel
Types of stigmaTypes of stigma
Fear
(of the
disease)
Stigmatisers
(e.g. community, health workers)
People who are stigmatised
Experien-
ced stigma
(discrimi-
nation)
Perceived
stigma
(attitudes)
Symbolic
stigma
(associa-
tions)
Enacted
stigma
(discrimi-
nation)
Internalised
stigma
(self-stigma)
Anticipated
stigma
(perceived)
Participation restrictionsSocial exclusion
Poor quality of life
Participation restrictionsSocial exclusion
Poor quality of life
Model modified from Mitchell Weiss, STI, Basel
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Methods to assess stigmaMethods to assess stigma
� Quantitative� Questionnaires
� Single indicators
� Scales
� Qualitative� Observation
� In-depth interviews
� Focus group discussions
� Media content analysis
� Policy and legislation audits
� Combination is preferred
Internalised stigma
Leprosy
Perceived stigma
Enacted stigma
Perceived stigma
Experienced stigma
Self-efficacy
Participation
Self-esteem
Well-being
Condition Community Affected person Impact
Measurement modelMeasurement model
Rensen et al., 2010
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ValidityContentvalidity
Facevalidity
Reliability
Internalconsistency
Measurement
error
ReliabilityTest-retestInter-raterIntra-rater
Criterion
validity
Responsiveness
Responsiveness
Interpretability
Construct validity
Structural validity
Hypothesistesting
Cross-cultural validity
Mokkink et al., 2010, COSMIN
Measurement properties
Review processReview process
� Conducting systematic reviews� Leprosy, mental health, HIV/AIDS*, other conditions
� Classifying according to type of stigma� Grading of properties
� 8 properties: content validity, internal consistency, construct validity, reliability, agreement (measurement error), responsiveness, floor/ceiling effects, interpretability
� Rating: positive, indeterminate, negative, no information available
� Ranking of instruments� Recommending highest ranking instruments.
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Examples of criteria for propertiesExamples of criteria for properties
� Construct validity� Factor analysis done; sample size ≥ 7x no. of items� Hypotheses:
� Positive or negative correlations (0.40-0.60)� Statistically significant differences between groups expected
� Reliability � Internal consistency (alpha) 0.70-0.95� Test-retest reproducibility >0.70 (ICC or weighted kappa)
� No major floor or ceiling effects (<15%)� Interpretability
� Means + SDs for at least 4 sub-groups provided.
Results reviewResults review
� Leprosy� 4 instruments recommended
� Mental health� 10 instruments recommended
� HIV/AIDS� 6 instruments recommended
� Other conditions� 8 instruments recommended.
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Recent examples of stigma Recent examples of stigma
measurement researchmeasurement research
Conceptual approachConceptual approach
� Perceived stigma� Persons affected – EMIC affected
� Community members – Jacoby scale and EMIC community
� Enacted stigma� Discrimination questionnaire
� Internalised stigma� ISMI
� Impact of stigma� Participation scale
� General self-efficacy scale
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EMIC stigma scale (community)EMIC stigma scale (community)
Perceived stigma in the community Perceived stigma in the community (5 districts in Indonesia, n=959)(5 districts in Indonesia, n=959)
0 20 40 60 80 100
Think less of family
Cause problems for family
Family concerned about disclosure
Problems to get married
Problems in marriage
Problem for relative to get married
Difficulty finding work
Refuse to buy food
% saying 'Possibly' or 'Yes'
Possibly Yes
If someone had leprosy in your community, would …
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EMIC stigma scale (affected)EMIC stigma scale (affected)
Differences in EMIC score between people Differences in EMIC score between people
in CBR and nonin CBR and non--CBR areas CBR areas
0
2
4
6
8
10
12
14
16
18
20
Visible signs of leprosy (n=412) No visible signs (n=394)
Me
dia
n E
MIC
sc
ore
CBR area Non-CBR area
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0 2 4 6 8 10 12 14
Refused medical care
Banned from elections
Forced to leave school
Refused public transport
Refused admission in restaurant
Refused admission in mosque
Employment restricted
Forced to leave job
Promotion afffected
Refused employment
Separated / divorced
Not admitted in school
Miscellaneous discrimination
Not able to marry
% saying 'yes'
Enacted stigma in leprosy Enacted stigma in leprosy
5 districts in Indonesian=1,330
Internalised stigmaInternalised stigma
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Correlation EMIC Correlation EMIC vsvs ISMIISMI
0
0.5
1
1.5
2
2.5
3
3.5
4
4.5
0 10 20 30 40 50 60
EMIC affected score
ISM
I sco
re
R = 0.70
ParticipationParticipation
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Profile of participation restrictions Profile of participation restrictions (n=1,650; Morang District, Nepal)(n=1,650; Morang District, Nepal)
0 20 40 60 80 100
Comfortable meeting new people
Visit people in the community
Socially active
Casual activities
Take part in festivals
Visits outside
Contribute economically
Work as hard
Find work
percentage with restrictions
Small Medium Large problemAre you able to … as your peers do?
Objectives for the Measurement Objectives for the Measurement
GroupGroup
� Selected best ranking instrument for each type of stigma
� Recommend instruments for guidelines
� Recommend instruments to be tested for generic use
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AcknowledgementsAcknowledgements
� Generous support from Netherlands Leprosy Relief
� Kind contributions from Brendan Maughan-Brown, Laura Nyblade and Leana Uys regarding HIV-related stigma measurement