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 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 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 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 from 2 Horizons Intervention Studies HIV prevention and stigma reduction among truckers in Brazil Stigma reduction among healthcare workers in India 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 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 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 % Agree Truckers are to blame for spreading HIV/AIDS. AIDS is a punishment for bad behavior. I would feel comfortable traveling with someone who HIV/AIDS in my truck. If I had AIDS, I would be fired from my work. 26 28 58 63 35 33 46 57 80 100 Brazilian Non-Brazilian 0 20 40 60 Stigma index by HIV-related knowledge* 80 70 60 50 40 30 20 10 0 Knowledge Index 74 High knowledge Low knowledge 26 *p < 0.001 - Chi-square test Resulting intervention activities BCC campaign Outreach Clinic at the border STI treatment VCT 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 Horizons, SHARAN, Institute for Economic Growth, NACO Main partners: 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 21 item Stigma Index Domains of items Discomfort with casual contact E.g., Lack of willingness to share a meal Men who get AIDS get what they deserve. Patients who test positive have a right to decide if relatives are informed. Blame towards PLHA Lack of respect for PLHA rights Overall internal consistency reliability (alpha = .74) 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* Reported practices: HCW avoids going near PLHA patient 24.4 21.5 HCW tries not to touch PLHA patient 25.2 21.5 Yes No HCW shares status of PLHA patient with all hospital staff 22.3 15.3 0 5 10 15 20 25 30 Mean stigma score of all HCWs at baseline; all *p < .05 Change in stigma index (n = 884)* Percent of Health-care Workers who disagree with the following statements: Need for consent exaggerated HIV/AIDS spreads due to immoral behavior Men who get HIV get what they deserve Patients with HIV should be kept at a distance 41 68 28 57 58 63 43 57 Baseline Endline 0 20 40 60 80 *16 out of 21 items p < .05 Stigma index by type of HCW Low 80 70 60 50 40 30 20 10 0 Baseline (N=134) Endline (N=135) Baseline (N=375) Endline (N=375) Baseline (N=375) Endline (N=375) 6.1 1.5 0.7 0.3 1.3 49.3 49.3 44 38.1 35.6 26.1 15.7 8.5 67.7 63.7 55.7 60.5 Moderate High 75.7 DOCTORS NURSES WARD STAFF Highlights from 2 ICRW Intervention Studies Community-based HIV stigma reduction in Tanzania Stigma reduction in media in Vietnam Tanzania Community Intervention Objectives Evaluate the effects of Kimara Peers‘ intervention on stigma in the community Develop and test stigma indicators ICRW, Kimara Peers, Muhimbili University College of Health Sciences ICRW, Synergy Project, Tulane University USAID, Synergy Project, Horizons, FHI Partners 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) Fear-driven stigma Value-driven stigma Enacted stigma Disclosure 4 Domains Intervention Design Improved Kimara programs Capacity building of Kimara staff using antistigma 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 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 70 60 50 40 29.8 30 20 10 0 Stigma Observed by Health Providers Stigma Experienced by PLHA 59 56 Stigma Observed by Community Percent Gender Differences in Stigma Experienced Stigma in the Last Year (n=218) No longer visited/visited less Excluded from social gathering Abandoned/sent aw ay by family Abandoned by spouse Threatened w ith violence Isolated in the household Physically assaulted Gossiped about Teased, insulted, sw orn at Visitors increased to check out/voyeurism Lost respect/standing in the community Denied religious rites/services Lost customers or job Lost housing/could not rent Had property taken aw ay Given poorer quality health services Denied promotion or training Women Men 5% 10% 15% 20% 25% 30% 35% 40% 45% 0% 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 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) ICRW, Institute for Social Development Studies, USAID & CHANGE Project/AED Partners 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 stigmaaware media 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 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 Before Little about stigma reported by media After More stories about stigma Links with social evils: PLHA as drug users, sex workers, those who behave badly PLHA portrayed as sick, useless & hopeless Efforts to de-link HIV and social evils More positive stories about people living with HIV remaining and/or becoming active in the community Posters /stories used stigmatizing words Fewer fear-based messages/more and dark, threatening, fear-based positive images images Fear and avoidance propagated by media messages Stories of leaders working with/visiting PLHA; calls to support PLHA Concluding Thoughts Stigma can be addressed by interventions Different interventions for S&D, institutional or interpersonal Truckers, Hospitals, Community, Media Distinguish 4 domains to capture complexity Many entry points Stigma is measurable Different issues important for different populations E.g. Men versus women Future Directions for Horizons & ICRW Kimara Peers‘ evaluation & indicators testing—Tanzania ICRW, Horizons, FHI, USAID ICRW, Horizons, USAID Reducing stigma in healthcare settings—Vietnam Stigma in the context of ARVs—Tanzania and Botswana ICRW, Gates Foundation Horizons & FHI in Kenya, Horizons & MOH in Thailand Horizons, AMKENI Stigma and adherence to ARVs— Kenya and Thailand Stigma in the context of PMTCT— Kenya 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
"HIV Stigma and Discrimination"