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What Do We Know and Where Do We Go :. T he State of the Field in Stigma–Reduction Programming and Measurement. What we k now : Stigma is. Universal, Prevalent, Harmful Common at its core while contextually specific Causes Forms Consequences
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What Do We Know and Where Do We Go: The State of the Field in Stigma–Reduction Programming and Measurement
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
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)
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
Stigma ‘mentions’ vs recommended concrete actions in global guidance documents
HIV Prevention, diagnosis, treatment and care for key populations, WHO (2014)
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
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
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
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
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
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
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!
More Information Laura Nyblade Senior Technical Advisor, Stigma and Discrimination 202.728.1961 lnyblade@rti.org