RTI International RTI International is a trade name of Research Triangle Institute. What Do We Know and Where Do We Go: The State of the Field in Stigma–Reduction Programming and Measurement

RTI International 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

RTI International 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)

RTI International 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:

Growing Recognition of the Need to Scale-up Action ?

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

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

Stigma-Reduction Programs

RTI International Evidence on how to reduce stigma has grown significantly

RTI International Learning across regions is also growing

RTI International Range of stigma-reduction interventions expanding

RTI International Number of intervention strategies implemented increased

RTI International 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

RTI International Tools for stigma-reduction towards key populations exist

Key Principles for Stigma- Reduction Programs

RTI International Address Immediately Actionable Drivers Raise awareness Discuss 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 behaviors Recognize and reward role models

Measuring Stigma

RTI International HIV-stigma measurement  Tools – People Living with HIV Stigma Index – Measuring HIV stigma and discrimination among health facility staff: Standardized brief questionnaire ( – Revised DHS questions (forthcoming for new round)  Stigma Indicators approved by the UNAIDS Monitoring & Evaluation Reference Group – General population – Health care facilities

RTI International 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

RTI International Geographic distribution of stigma measures for FSW and MSM

RTI International 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

RTI International 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

RTI International 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

RTI International 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!

RTI International More Information Laura Nyblade Senior Technical Advisor, Stigma and Discrimination