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

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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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