Measuring stigma
Wim H. van Brakel, Carlijn Voorend, Carin Rensen
KIT Leprosy Unit
Netherlands Leprosy Relief
VU Athena Institute
Content
Conceptual frameworks
Review process
Measurement quality standards
Review results
Recent examples of stigma
measurement research.
Types of stigma
People who are stigmatised
Anticipated Internalised
stigma
stigma
(perceived) (self-stigma)
Experienced stigma
(discrimination)
Model modified from Mitchell Weiss, STI, Basel
Types of stigma
People who are stigmatised
Stigmatisers
(e.g. community, health workers)
Anticipated Internalised
stigma
stigma
(perceived) (self-stigma)
Experienced stigma
(discrimination)
Enacted
stigma
(discrimination)
Fear
(of the
disease)
Symbolic
stigma
(associations)
Perceived
stigma
(attitudes)
Participation restrictions
Social exclusion
Poor quality of life
Model modified from Mitchell Weiss, STI, Basel
Methods to assess stigma
Quantitative
Qualitative
Questionnaires
Single indicators
Scales
Observation
In-depth interviews
Focus group discussions
Media content analysis
Policy and legislation audits
Combination is preferred
Measurement model
Condition
Community
Affected person
Impact
Perceived
stigma
Perceived
stigma
Self-efficacy
Enacted
stigma
Experienced
stigma
Participation
Internalised
stigma
Self-esteem
Leprosy
Well-being
Rensen et al., 2010
Measurement properties
Reliability
Validity
Internal
consistency
Reliability
Content
validity
Test-retest
Inter-rater
Intra-rater
Face
validity
Measuremen
t
error
Criterio
n
validity
Construct validity
Structural
validity
Hypothesis
testing
Crosscultural
validity
Responsiveness
Responsivenes
s
Interpretabili
ty
Mokkink et al., 2010, COSMIN
Review process
Conducting systematic reviews
Classifying according to type of stigma
Grading of properties
Leprosy, mental health, HIV/AIDS*, other conditions
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.
Examples of criteria for properties
Construct validity
Reliability
Factor analysis done; sample size 7x no. of items
Hypotheses:
Positive or negative correlations (0.40-0.60)
Statistically significant differences between groups
expected
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 review
Leprosy
Mental health
10 instruments recommended
HIV/AIDS
4 instruments recommended
6 instruments recommended
Other conditions
8 instruments recommended.
Recent examples of stigma
measurement research
Conceptual approach
Perceived stigma
Enacted stigma
Discrimination questionnaire
Internalised stigma
Persons affected EMIC affected
Community members Jacoby scale and EMIC community
ISMI
Impact of stigma
Participation scale
General self-efficacy scale
EMIC stigma scale (community)
Perceived stigma in the community
(5 districts in Indonesia, n=959)
If someone had leprosy
in your community, would
Possibly
Yes
Refuse to buy food
Difficulty finding work
Problem for relative to get married
Problems in marriage
Problems to get married
Family concerned about disclosure
Cause problems for family
Think less of family
20
40
60
80
100
% saying 'Possibly' or 'Yes'
EMIC stigma scale (affected)
Differences in EMIC score between people
in CBR and non-CBR areas
CBR area
Non-CBR area
Median EMIC score
20
18
16
14
12
10
8
6
4
2
0
Visible signs of leprosy (n=412)
No visible signs (n=394)
Enacted stigma in leprosy
Not able to marry
Miscellaneous discrimination
Not admitted in school
Separated / divorced
Refused employment
Promotion afffected
Forced to leave job
Employment restricted
Refused admission in mosque
Refused admission in restaurant
5 districts in Indonesia
n=1,330
Refused public transport
Forced to leave school
Banned from elections
Refused medical care
0
10
12
14
% saying 'yes'
Internalised stigma
Correlation EMIC vs ISMI
4.5
4
3.5
ISMI score
3
2.5
R = 0.70
2
1.5
1
0.5
0
0
10
20
30
40
50
60
EMIC affected score
Participation
10
Profile of participation restrictions
(n=1,650; Morang District, Nepal)
Are you able to as
your peers do?
Small
Medium
Large problem
Find work
Work as hard
Contribute economically
Visits outside
Take part in festivals
Casual activities
Socially active
Visit people in the community
Comfortable meeting new people
0
20
40
60
80
100
percentage with restrictions
Objectives for the Measurement
Group
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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Acknowledgements
Generous support from Netherlands
Leprosy Relief
Kind contributions from Brendan
Maughan-Brown, Laura Nyblade and
Leana Uys regarding HIV-related
stigma measurement
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