Mitigating and Measuring Stigma in Health Facilities: The HPP Approach July 20, 2015 Laura Nyblade, PhD RTI, International

What We Know: Stigma is Universal, prevalent, harmful Actionable Growing evidence of the effect on key HIV outcomes Testing (Musheke et al., 2013) Adherence (Katz et al., 2013) Linkage entry to care (Govindasamy et al., 2012) Prevention of mother-to-child transmission (PMTCT) (Turan & Nyblade, 2013) Actionable Intervention models and practical tools available for adaptation and scale-up Measurable Validated and tested measures Globally approved indicators Musheke, M., Ntalasha, H., Gari, S., Mckenzie, O., Bond, V., Martin-Hilber, A., & Merten, S. (2013). A systematic review of qualitative findings on factors enabling and deterring uptake of HIV testing in Sub-Saharan Africa. BMC public health, 13(1), 220. Katz, I. T., Ryu, A. E., Onuegbu, A. G., Psaros, C., Weiser, S. D., Bangsberg, D. R., & Tsai, A. C. (2013). Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis. Journal of the International AIDS Society, 16(3Suppl 2). Govindasamy, D., Ford, N., & Kranzer, K. (2012). Risk factors, barriers and facilitators for linkage to antiretroviral therapy care: a systematic review. Aids,26(16), 2059-2067. Rangarajan, Suresh, et al. "Risk Factors for Delayed Entrance into Care after Diagnosis among Patients with Late-Stage HIV Disease in Southern Vietnam."PloS one 9.10 (2014): e108939. Bhowmik, A., et al. "Factors responsible for delayed enrollment for anti-retroviral treatment." Journal of Nepal Health Research Council (2013). Turan, J. M., & Nyblade, L. (2013). HIV-related stigma as a barrier to achievement of global PMTCT and maternal health goals: a review of the evidence. AIDS and Behavior, 17(7), 2528-2539.

Growing Recognition in Global Guidance Documents

Stigma is a Social Process That occurs in the context of power Distinguish and label differences Associate negative attributes to perceived differences Separation of “us” from “them” Status loss and discrimination (Link & Phelan, 2001) Discrimination is the end result: Unfair and unjust action toward an individual or group on the basis of: Real or perceived status or attributes a medical condition like HIV or AIDS socioeconomic status gender race sexual orientation or sexuality (UNAIDS) Source: Link, Bruce G., and Jo C. Phelan. 2001. "Conceptualizing Stigma." Annual Review of Sociology: 363-385

Terminology of stigma Enacted stigma (discrimination) Anticipated (fear of) stigma Perceived stigma Internalized (self) stigma Secondary (by association) stigma Compound (layered) stigma Gender Poverty/class/race/geography/migrant status Sexual orientation Behaviors

Stigma-reduction Interventions Evidence on how to reduce stigma has grown exponentially over the past decade (2003–2013) From 22 (Brown et al., 2003) to 48 studies (Stangl et al., 2013) included in review articles Regional breadth of existing stigma-reduction programs has expanded Stigma-reduction interventions are more likely to use a combination of approaches Information, skills building, counseling/support, contact, structural and biomedical 8 studies of 48 in Stangle’s review targeted healthcare providers

HIV Stigma Measurement With multiple populations General population Revised questions in the latest round of the DHS People Living with HIV Stigma Index Health facility Globally approved indicators Population Inclusion in the 2015 WHO Consolidated Strategic Information Guidelines for HIV in the Health Sector Being considered for inclusion in the PEPFAR SIMS

HPP’s Package for Stigma Reduction in Health Facilities An example of a total facility combination approach

Core Components Assess: Two tools and a user’s guide for implementation Train: Training menus and material for health workers Sustain: Facility assessments, action planning, examples for developing codes of conduct and facility policies

Assessment Tools HPP-led consortium of international stakeholders developed, field-tested, and refined a brief measurement tool Field-tested in six sites China, Dominica, Egypt, Kenya, Puerto Rico, St. Christopher & Nevis Two tools Comprehensive Brief: 21–24 questions Monitoring Tool: 7 questions Literature review using PubMed, other databases Review included published and grey literature, and pre-publication questionnaires Questions were drawn from ten peer-reviewed articles, three agency reports, and two unpublished questionnaires Content-development workshop 22 international stigma measurement and programmatic experts participated Experts reviewed, assessed, and prioritized a comprehensive list of stigma items Items were selected based on seven criteria Questionnaire: background section, stigma drivers, enacted stigma, a module on stigma toward pregnant women living with HIV

Five Domains of the Comprehensive Tool Infection control (fear of HIV transmission & avoidance behaviors) Opinions about PHLIV and KPs (willingness to treat) Health facility environment (observed and secondary stigma) Special Module: pregnant women living with HIV Health facility policies (supplies, training, policies)

A Collaborative Implementation and Funding Effort Overall Coordination Health Policy Project USAID; AID-OAA-A-10-00067 (includes PEPFAR) China UCLA NIMH; R01MH081778-04S1 Dominica University of the West Indies Egypt U.S. Naval Medical Research Unit Ford Foundation Kenya University of Alabama at Birmingham & KEMRI Puerto Rico University of Puerto Rico NIMH; 1R01MH080694 St. Christopher & Nevis the paper presents the results of a 2.5 year collaborative/collective  effort that wouldn’t have been possible without a truly joint effort of many people, institutions, funders etc etc.—and flash it up

Training Guide

Drawn from a Wide Range of Sources

Training Package Based on field application in 9 countries Can be tailored for different audiences and timeframes Includes 17 sample workshops and 1 refresher Sample S&D Training Programs Half-day workshop for health facility managers Three-day work shops for medical health workers Ten-week modular course for medical health workers Three-hour workshop for doctors on stigma toward key populations Basic recommendations Can be tailored for different audiences and timeframe

Administrator’s guide Includes three tools: Check list for a stigma-free facility environment Codes of conduct Action planning guide Codes of conduct: Continuous process throughout training or as a separate activity at the end of training Developed by staff themselves Negotiated with each other Commitment to standards of behavior Posters on facility walls Reminder to both clients and staff