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1
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