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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
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