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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