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What Do We Know and Where Do We Go:

The State of the Fieldin Stigma–Reduction

Programming and Measurement

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What we know: Stigma is

Universal, Prevalent, Harmful Common at its core while contextually specific

– Causes– Forms– Consequences

Differentially experienced by women and men; key populations

Actionable & Measurable– Program models & practical tools available for

adaptation and scale-up– Validated & tested measures

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The process of stigma

Where we distinguish and label differences, associate negative attributes to perceived differences, separate “us” from “them”, leading to status loss and discrimination (Link & Phelan, 2001)

Discrimination is the unfair and unjust action toward an individual or group on the basis of real or perceived status or attributes (UNAIDS)

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Stigma impedes Prevention

– HIV testing and counseling– Disclosure– Risk reduction

Treatment, Care, and Support– Health-seeking behaviors– Linkage to ART care– Adherence

Health Systems– Access – Quality of care– Human capital

Photo: www.th.undp.org

Growing Recognition of the Need to Scale-up Action?

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Stigma ‘mentions’ vs recommended concrete actions in global guidance documents

WHO 2014 HIV Comprehensive Guidelines

WHO MSM &TG Pink Book

WHO FSW Pink Book

PEPFAR Guidance on PWID

PEPFAR Guidance on MSM

Global Fund PWID

Global Fund SOGI

0 10 20 30 40 50 60 70

Times substantive guidance offered

Times Stigma is mentioned

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HIV Prevention, diagnosis, treatment and care for key populations, WHO (2014)

Stigma-Reduction Programs

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Evidence on how to reduce stigma has grown significantly

Brown 2003 Stangl 20130

10

20

30

40

50

60

22

48

2

HIV-Stigma Reduction Interventions

Total Included studies Targeted FSW

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Learning across regions is also growing

Asia Africa North America, Western and Central

Europe

Latin America and the Carribean

Middle East and North Africa

1

5

16

18

21

5

32

Stigma-Reduction Programs, Geographic Distribution

Brown 2003 (n=22)

Stangl 2013 (n=48)

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Range of stigma-reduction interventions expanding

Information-Based

Skills Building Counselling / Support

Contact with PLHIV

Structural Biomedical

18

11

45

38

32

7

14

6

4

Types of Interventions

Brown 2003 (n=22)

Stangl 2013 (n=48)

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Number of intervention strategies implemented increased

Single Two Three Four0%

5%

10%

15%

20%

25%

30%

35%

40%

45%

50%

Stigma-reduction intervention strategies employed

Brown 2003 (n=22)Stangl 2013 (n=48)

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Stigma -reduction programs for key populations

From JHU review of pre-clinical stigma interventions for MSM and FSW (Christine McKenna)– Sixty pre-clinical stigma-reduction resources including

toolkits, manuals and research studies for FSW and MSM

– Few key population interventions in Sub Saharan Africa

– Few interventions appropriately evaluated with standardized indicators

– Most promising stigma mitigation interventions use multiple strategies and stakeholders

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Tools for stigma-reduction towards key populations exist

Key Principles for Stigma-Reduction Programs

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Address Immediately Actionable Drivers

Raise awarenessDiscuss and challenge the shame and blame

Address HIV transmission fears and misconceptions

Affected groups at the center of the response

Develop and strengthen networks Empower and strengthen capacity

Address self-stigma

Create partnerships between affected groups and opinion

leaders“Contact strategies”

Model desirable behaviorsRecognize and reward role models

Measuring Stigma

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HIV-stigma measurement Tools

– People Living with HIV Stigma Index– Measuring HIV stigma and discrimination among

health facility staff: Standardized brief questionnaire (www.healthpolicyproject.com)

– Revised DHS questions (forthcoming for new round) Stigma Indicators approved by the UNAIDS

Monitoring & Evaluation Reference Group– General population – Health care facilities

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Key population stigma measurement

Ongoing review of stigma measures for FSW and MSM by JHU (Alanna Fitzgerald-Husek)– Many MSM-relevant metrics; few (validated) stigma

scales specific for sex workers and transgender persons

– Stigma inconsistently measured (varied scales, question wording and intent, stigma types and domains assessed)

– Majority from North America

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Geographic distribution of stigma measures for FSW and MSM

North America South and Central America and the

Caribbean

Europe Asia Africa Australia and Pacific

0%

10%

20%

30%

40%

50%

60%

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Key population stigma measurement

JHU tested stigma measures for FSW and MSM in Burkina Faso and Togo:

– MSM – Experienced Stigma, Experienced Healthcare Stigma,, Perceived healthcare stigma, Stigma from family and friends

– FSW – Experienced Stigma, Experienced healthcare stigma, Perceived healthcare stigma, stigma from family and friends, and stigma from police.

Ongoing effort to include stigma-measures in new rounds of the IBBS

Moving Forward

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Areas for strengthening

Improved understanding of: – The relationship between stigma-reduction

interventions and health outcomes – How to integrate stigma-reduction into other

interventions– Intersecting stigmas– The relationship between stigma, laws and policies

Validated key population stigma measures Better documentation & sharing of programs and

tools Evaluation of stigma-reduction interventions

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Moving forward

We have the knowledge and tools to scale-up action by building on the solid foundation of global stigma-reduction work & the power of communities and partnership

A good place to start: Make stigma-reduction a routine part of health systems & HIV service delivery

Incorporate stigma indicators into quality assessments Integrate stigma-reduction into quality improvement

processes

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Acknowledgements

Co-organizers– Stefan Baral (JHSPH)– Cynthia Grossman (NIMH)

Co-author, Melissa Stockton (RTI) Alanna Fitzgerald-Husek, Ashley Grosso

and Christine Mckenna (JHUSPH team) Co-presenters All of you for being with us at this hour

after a long day!

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More Information

Laura Nyblade

Senior Technical Advisor, Stigma and Discrimination

202.728.1961

lnyblade@rti.org