HIV/AIDS related Stigma: HIV/AIDS related Stigma Understanding it, measuring it, and testing the impact of programmatic responses Julie Pulerwitz, ScD Kerry MacQuarrie Horizons/PATH ICRW Mini University, October 14, 2005


Conceptualizing stigma : Conceptualizing stigma Difficult, since complex and may seem amorphous Stigma is a social process, not just an individual one Reasons for stigma vary: fear of contagion and death prejudice against already stigmatized groups (compounded stigma) social norms about “bad” behaviors


Measuring stigma : Measuring stigma Indictors for felt stigma & enacted stigma (i.e. discrimination) differ Different measures for varied settings needed health facility, community-based, workplace Common problems with validity “Not willing to touch PLHA” due to fear of transmission or pariah status?


S & D interagency working group : S & D interagency working group Since 2002, various institutions meeting to discuss stigma and discrimination, especially measurement Steering committee: ICRW, Horizons, POLICY, MEASURE, USAID Recommendations in USAID ‘Expanded Guide’ Field-testing of indicators Coordination of findings


Highlights from2 Horizons Intervention Studies: Highlights from 2 Horizons Intervention Studies HIV prevention and stigma reduction among truckers in Brazil Stigma reduction among healthcare workers in India


Truckers in Brazil: Truckers in Brazil Main objectives: Assess how HIV-related stigma is manifest for truckers crossing the southern Brazilian borders OR to reduce stigma and increase HIV/STI prevention and treatment among truckers Main partners: Horizons Program & Population Council/Brazil, USAID, Brazilian Ministry of Health, GoodYear Tires


Study design: Study design Cross-sectional design Truckers recruited at two customs stations in tri-country borders in Brazil Systematic sample – invitations on entry 1,775 truckers completed baseline interview Intervention implemented 2003 – 4; thousands of truckers reached Post-intervention data collection ongoing


Final stigma measure: Final stigma measure 17 item Stigma Index Four domains Discomfort with casual contact Blame towards PLHA Fear of stigma from others Willingness to assist PLHA Overall internal consistency reliability (alpha = .77)


Selected stigma index items: Selected stigma index items


Stigma index by HIV-related knowledge*: Stigma index by HIV-related knowledge* *p < 0.001 - Chi-square test Percent with high stigma


Resulting intervention activities : Resulting intervention activities BCC campaign Outreach Clinic at the border STI treatment VCT


Hospitals in India: Hospitals in India Main objectives: Explore extent of HIV-related stigma and discrimination among physicians, nurses, and ward staff Develop and test the impact of S & D reduction activities in the hospital setting Main partners: Horizons, SHARAN, Institute for Economic Growth, NACO


Study design: Study design Formative HCWs (35), PLHA and caregivers (24) Baseline and Post-intervention measures Survey (884 HCWs both pre and post) Observations of staff practices Interviews with PLHA and key informants Intervention in 3 New Delhi hospitals


Final stigma measure: Final stigma measure 21 item Stigma Index Domains of items Discomfort with casual contact E.g., Lack of willingness to share a meal Blame towards PLHA Men who get AIDS get what they deserve. Lack of respect for PLHA rights Patients who test positive have a right to decide if relatives are informed. Overall internal consistency reliability (alpha = .74)


Intervention activities: Intervention activities Development and implementation of: Hospital-specific activity plans Self-assessment checklist for medical institutions to become “PLHA-friendly” IEC materials on infection control and PEP Interactive training manual for sensitizing HCWs on HIV/AIDS issues


Discriminatory practices and stigma scores*: Discriminatory practices and stigma scores* Mean stigma score of all HCWs at baseline; all *p < .05 Reported practices:


Change in stigma index (n = 884)*: Change in stigma index (n = 884)* Percent of Health-care Workers who disagree with the following statements: *16 out of 21 items p < .05


Stigma index by type of HCW: Stigma index by type of HCW DOCTORS NURSES WARD STAFF Percent


Highlights from2 ICRW Intervention Studies: Highlights from 2 ICRW Intervention Studies Community-based HIV stigma reduction in Tanzania Stigma reduction in media in Vietnam


Tanzania Community Intervention: Tanzania Community Intervention Objectives Evaluate the effects of Kimara Peers’ intervention on stigma in the community Develop and test stigma indicators Partners ICRW, Kimara Peers, Muhimbili University College of Health Sciences ICRW, Synergy Project, Tulane University USAID, Synergy Project, Horizons, FHI


Study Design: Study Design Pre/post survey with 2 rounds of qualitative data collection Baseline survey with 3 Populations Community (n=978) Health providers (n=100) PLHA (n=218) 4 Domains Fear-driven stigma Value-driven stigma Enacted stigma Disclosure


Intervention Design: Intervention Design Improved Kimara programs Capacity building of Kimara staff using anti-stigma toolkit Action planning for adjustments to services Group counseling for PLHA on self-stigma & combating stigma Community action plans with Balozi leaders


Anti-Stigma Toolkit: Anti-Stigma Toolkit Based on earlier qualitative research (AED/Change) 125 exercises address causes & forms Value- & fear-driven stigma Interpersonal & institutional stigma Designed for use by CBOs, PLHA groups, community leaders Results in an Action Plan


Levels of Stigma: Levels of Stigma


Gender Differences in Stigma: Gender Differences in Stigma


Indications of Effectiveness: Indications of Effectiveness Kimara staff sought for sympathy and advice— ‘People are saying that this is a more effective therapy than going to hospital’. Balozi leaders—‘Educating others on S&D is no longer a problem to me. This is because of the training I received on S&D.’ More clients for Kimara VCT and Group Counseling More community members who can identify stigma Decreases in name calling, gossip of “patient’s” wellbeing, and obstacles to credit schemes & employment benefits


Challenging HIV Stigma in Vietnam’s Media: Challenging HIV Stigma in Vietnam’s Media Main Objectives Phase 1: Assess the causes, manifestations, & consequences of HIV stigma in Vietnam (2002-2004) Phase 2: Intervene to change the approach to IEC, news, and information about HIV/AIDS through the media (2004-2005) Partners ICRW, Institute for Social Development Studies, USAID & CHANGE Project/AED


Key Research Findings: Key Research Findings HIV/AIDS tied to “social evils” Media central to how PLHA are perceived & stigma constructed in Vietnam Central Commission on Ideology & Culture keen to foster more stigma-aware media


Intervention Design: Intervention Design Adaptation of the anti-stigma toolkit to Vietnam ‘Color of Love’ Art Exhibition of two artists living with HIV Sensitization & strategy development workshops with: National Commission of Ideology & Culture Provincial Commissions of Ideology & Culture VTV editors, journalists, & others in TV and newspaper programming


Intervention Outcomes: Intervention Outcomes Toolkit adapted with segments on injection drug use & “social evils” National CIC & media leaders exhibited shift in perspectives 67 provincial CIC staff found training important and useful >10 new TV program segments developed and aired, numerous newspaper articles appearing Factsheets & IEC posters developed


Media Assessment: Media Assessment


Concluding Thoughts: Concluding Thoughts Stigma can be addressed by interventions Different interventions for S&D, institutional or interpersonal Many entry points Truckers, Hospitals, Community, Media Stigma is measurable Distinguish 4 domains to capture complexity Different issues important for different populations E.g. Men versus women


Future Directions for Horizons & ICRW: Future Directions for Horizons & ICRW Kimara Peers’ evaluation & indicators testing—Tanzania ICRW, Horizons, FHI, USAID Reducing stigma in healthcare settings—Vietnam ICRW, Horizons, USAID Stigma in the context of ARVs—Tanzania and Botswana ICRW, Gates Foundation Stigma and adherence to ARVs— Kenya and Thailand Horizons & FHI in Kenya, Horizons & MOH in Thailand Stigma in the context of PMTCT— Kenya Horizons, AMKENI


Resources on S&D: Resources on S&D Horizons conceptual S & D framework, intervention directions Horizons review of 21 interventions explicitly attempting to decrease AIDS stigma ICRW/AED anti-stigma toolkit ICRW et al recommendations for measuring HIV stigma