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Leprosy Stigma

• Why deal with stigma?

• What to do?

• Stigma perspectives

• Temporal shifts in analytical focus

(3 different frameworks)

• Research suggestions

• Available tools

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Why deal with stigma?

…on the individual:

• Psychological stress

• Depression and other psychiatric morbidity

• Fear

• Marital and relationship problems

• Other social participation restrictions (job/edu)

…on public health programmes:

• Delay in diagnosis and treatment (meaning a.o. continuing risk of disease transmission, increased deformities)

• Concealment (leads to poorer treatment adherence or default from treatment)

Wim Brakel’s examples of negative effects (2004)

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What to do?Positive impact is needed!

To make a difference for the patients

The right interventionsThat make the desired impact

Qualitative researchTo investigate the nature of stigma

Better assessmentof stigma

Tools to evaluate interventions against stigma

New approachesRethinking the interventions

“Qualitative in-depth narrative accounts are required to develop queries, scales and instruments at the outset, so that they may ensure the validity of large quantitative assessments of the magnitude of stigma, and the distribution of particular features, the overall impact and determinants of stigma”

Weiss, 2004:

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Stigma perspectives

Four categories of approaches to assessment of health-related stigma (Brakel, 2004):

1. Experience of actual discrimination on the part of the affected.

2. Internalized (perceived/felt) stigma [self-

stigma].

3. [Perceived/felt as a category in itself].

4. Attitudes/ practices towards the people

affected.

5. Stigmatizing practices on the structural level.

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Temporal shifts in analytical focus Taxonomies for assessment

[Sources of leprosy stigma](Heijnders, 2002)

[Determinantsof health-related stigma](int. research workshop, Netherlands,

2004)

[Impact of stigma](Weiss, 2004)

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Suggestionsfor further research

• by various researchers in the field :– Analytical research on the independent associations or interaction

between various beliefs and stigmatizing attitudes (Wong, 2004).– More knowledge on the relative importance of the various cognitive

dimensions or mediating factors influencing stigma in leprosy (Wong, 2004).

– Does stigma vary according to the personality and status of the person with leprosy? (Arole, 2002)

– What is the nature of stigma for children? (Arole, 2002 & Bainson, 1998)

– The relationship between knowledge and behavior deserves more attention (van der Meij et al., 2004).

– Less has been written about cultural differences in the manifestations of stigma, that is, how adverse social judgments are made and experienced (Weiss, 2004).

– More work is needed to distinguish ‘internalized’ stigma from ‘felt/ perceived’ stigma (int. research workshop, Netherlands, 2004).

– The attitudes of individuals, their experiences and current situation were found to be a significant element of how they cope with any stigma they face (Try, 2006).

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• Various questionnairesFamily stigma questionnaire (Corrigan et al., 2004)

• P-scale• Dehabilitation scale (Anandaraj, 1995)

• Psoriasis Stigma Questionnaire (Ginsberg & Link, 1993)

• HIV Stigma Scale (Berger et al., 2001)• AIDS Attitude Scale (Froman et al., 1992)• KAP study (Critique by Hyland)

Available tools

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Last notes

• Job and stigma• Childhood and stigma• Life events most affected by stigma?• The relative importance of self-stigmatization (as opposed to felt

or enacted)• The mechanisms (e.g. triggers) of internalized stigma• Making sense of stigma (the affected justifying his

stigmatization)• When does the stigma “begin” in the course of disease?• The first encounter with the “official” diagnosis (this point in the

course of the stigma might be of huge psychological importance. What’s being done presently to facilitate the “right” beginning?)