1. Presentation for The National Quality Center November 19 th, 2015 Stigma Assessment Tools PART 1: LAURA NYBLADE Tool development & field testing PART 2: JANET TURAN Application in the US---deep South

2. www.rti.org RTI International is a registered trademark and a trade name of Research Triangle Institute. Development, field-testing and finalization of a standardized tool for measuring stigma among health facility staff service Laura Nyblade, PhD November, 2015

3. 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 – Health facility  Inclusion in the 2015 WHO Consolidated Strategic Information Guidelines for HIV in the Health Sector

4. Tools and Resources for Health Services HPP’s Package for Stigma Reduction in Health Facilities: A Total Facility Combination Approach http://www.healthpolicyproject.com/index.cfm?id=stigmapackage

5. 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

6. Assessment Tools

7. A Collaborative Implementation and Funding Effort Overall Coordination Health Policy Project USAID; AID-OAA-A-10- 00067 (includes PEPFAR) ChinaUCLANIMH; R01MH081778-04S1 DominicaUniversity of the West Indies USAID; AID-OAA-A-10-00067 (includes PEPFAR) Egypt U.S. Naval Medical Research Unit Ford Foundation Kenya University of Alabama at Birmingham & KEMRI USAID; AID-OAA-A-10-00067 (includes PEPFAR) Puerto RicoUniversity of Puerto RicoNIMH; 1R01MH080694 St. Christopher & Nevis University of the West Indies USAID; AID-OAA-A-10-00067 (includes PEPFAR)

8. Assessment Tools  HPP-led consortium of international stakeholders developed, field-tested, and refined a brief measurement tool  Two tools – Comprehensive Brief: 21–24 questions – Monitoring Tool: 7 questions  Available in 6 languages – Arabic, Chinese, English, French, Spanish, Swahili

9. Questionnaire development  Item pool across key stigma domains – 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pre-publication questionnaires – Questions were drawn from ten peer-reviewed articles, three agency reports, and two unpublished questionnaires  Content-development workshop – 22 international stigma measurement and programmatic experts participated – Experts reviewed, assessed, and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

10. Field-testing  Field tested in: – China, Dominica, Egypt, Kenya, Puerto Rico, St. Christopher & Nevis  Been adapted for use in: – Antigua & Barbuda, Barbados, Thailand, South Africa, US (Alabama), Zambia  Facilities sampled included: – Government regional and district hospitals, health centers, dispensaries, private providers in a sub-sample of sites  Both clinical and non-clinical staff – N ranged from 300 – 350

11. Data Analysis  Cross-site analysis – 2.5 day workshop with principal investigators  Assessed field implementation experience  Assessed item performance  Psychometric properties and contextual issues  Reduced items  Attitudinal scale  Cronbach’s alpha ≥ 0.70  Worry of HIV infection items  All staff types can answer at least one item  A range of items based on procedure invasiveness  Principle component analysis to reduce items  Observed stigma, secondary stigma, health facility policies/work environment

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

13. Questions by Domains Infection Control  Level of worry of infection when conducting certain activities – Touching clothing to drawing blood Opinions about people living with HIV and key populations – Attitudes – Willingness to care Health facility environment – Existence and enforcement of policies that protect patients – Supplies, training, and policies to support facility staff to provide non- stigmatizing care and protect themselves from infection Enacted stigma  Observation of discriminatory care – unwilling to care for a patient living with HIV  Use of unnecessary “protective” measures with patients living with HIV – Avoid physical contact, Double gloves  Secondary stigma – People talking badly about you – Friends & family avoiding you – Colleagues avoiding you

14. Globally Approved Health Facility Indicators  Indicators submitted for MERG review – Approved in May 2015 – Available in The Indicator Registry – Observed Enacted Stigma Indicator now featured in WHO 2015 Consolidated strategic information guidelines for HIV in the health sector http://www.indicatorregistry.orghttp://www.indicatorregistry.org (Indicators 1079-1085) http://www.who.int/hiv/pub/guidelines/strategic-information-guidelines/en/http://www.who.int/hiv/pub/guidelines/strategic-information-guidelines/en/ (pg. 56-57) 1. Institutional Policies 2. Fear of HIV Infection 3. Attitudes and Opinions 4. Observed Enacted Stigma 5. Unnecessary Precautions and Measures 6. Staff Needs and Support

15. The FRESH Study Assessing and Addressing stigma in healthcare settings in the US Deep South JANET M. TURAN, PHD, MPH UAB SCHOOL OF PUBLIC HEALTH, UAB CENTER FOR AIDS RESEARCH (CFAR) HIV CROSS-PART CARE CONTINUUM COLLABORATIVE (H4C) WEBINAR AUGUST 18, 2015

16. The FRESH Study (Finding Respect and Ending Stigma around HIV) Aim 1: Increasing our knowledge about levels and effects of HIV-related stigma in the South ◦ At-risk populations ◦ Health care providers ◦ Persons living with HIV Aim 2: Adapting and piloting an intervention originally developed in Africa in order to reduce stigma and discrimination in healthcare settings in the US South

17. Data from at-risk populations in Alabama Questions on fears of stigma and values/attitudes added to baseline data collection for 3 HIV prevention projects implemented by the Health Services Center in NE Alabama: ◦ Project Vortex: young adult females (19-24 years) and their partners at local colleges and universities (especially persons of color) ◦ Project Real: the re-entry population, those coming back to their community after being incarcerated ◦ Project Revolution: young adult females (19-24 years) and their partners in a community setting (especially persons of color)

18. Anticipated Stigma Some Preliminary Results (n=141)

19. Online Survey of Public Health and Primary Health Care Providers (n=703 ) Use of a HC provider survey tool on stigma in healthcare settings developed by an international expert group* Participation of different provider groups in Alabama and Mississippi: ◦ County-level health departments ◦ Community health centers (FQHCs) ◦ Other primary care providers Online survey launch in January 2013 *http://www.healthpolicyproject.com/index.cfm?ID=publications& get=pubID&pubID=49

20. Attitudes and Values Do you strongly agree, agree, disagree or strongly disagree with the following statements?

21. Groups Often Affected by Stigma I would prefer not to provide services to:

22. Shame Providers were asked about shame related to HIV infection for others, for their family, and for themselves

23. Focus groups with clients (n=18 PLHIV) “Once the young lady realized that I was HIV through my chart and stuff, her whole attitude changed. In the beginning she was friendly and nice and everything. When she realized that I was HIV, it looked like a shade came down in a sense.” “It was a weekend and I had a bad case of flu or something similar … and of course X was not open and there weren’t any doctors that I know of open, and there’s one of those X healthcare places open a couple of blocks from where I live and I went there. It was obvious they didn’t even wanna talk to me, much less, the minute they asked me if I was HIV- positive and I said yes, they were through with me. At one point he said ‘we’re not trained to deal with HIV” and I said ‘I’m not here to be treated for HIV, I’m here to be treated for some kind of infection, like flu or something, so what does that have to do with anything?’ – and that’s when he got really nasty”

24. Questionnaire Data from HIV Clinic Clients Preliminary Results (n=199) In the past 12 months, how often have you experienced the following at a health facility? (because you are living with HIV) Experienced at All (rarely to most of the time) HWs unwilling to care for you15% HWs provided poorer quality of care to you15% HWs talked badly about people living with HIV25% HWs confronted someone who was mistreating a patient living with HIV 37% HWs disclosed your HIV status to others w/out permission14% HWs used extra infection control precautions when caring for you42% HWs provided extra care or support to you66% HWs sent you to another facility because they didn’t want to treat you there 10%

25. The FRESH Stigma Reduction Intervention for Health Workers and PLHIV (based on Uys et al., 2009) Sharing information ◦ Sharing the results of local data collection on HIV-related stigma and giving general information about the impact of stigma on PLHIV Increasing contact with the affected group ◦ Bringing together a group of health workers and PLHIV to plan stigma-reduction activities together Improving coping through empowerment ◦ Engaging PLHIV in an activity in which they can address stigma directly, not just accept or live with it

26. FRESH Workshop Intervention ~10 health workers ◦ Nurses, social workers, receptionists, disease intervention specialists, etc. from different clinics in the city/state ~10 community participants (persons living with HIV) Facilitated by one health worker (social worker) and one consumer (PLHIV) 1.5 days In a neutral location (UAB School of Public Health)

27. FRESH Workshop Topics* Understanding Stigma Intersecting Stigmas Outcomes of Stigma HIV Knowledge Update Coping with Stigma Why is Stigma Hard to Change Stigma reduction strategies Designing a tool to reach PH and PHC workers *More information and workshop materials available at: http://alphtc.org/fres hhttp://alphtc.org/fres h

28. Initial FRESH Workshops in Birmingham May and September 2014 Workshop #1: 13 participants (7 HWs, 6 consumers, some overlap) Workshop #2: 23 participants (11 HWs, 12 consumers, some overlap) Health worker participants from local department of health, state department of health, AIDS service organizations, university clinics, etc. High satisfaction with the workshop experience by the participants

29. National Quality Center Workshop Activities

30. Preliminary Results* Feasible to recruit and engage both HWs and consumers (persons living with HIV) 87% of consumers and 89% of HWs rated the workshop experiences as “excellent” Pre-Post Comparisons: ◦ For consumers: scores on negative self image, disclosure concerns and enacted stigma tended to be lower post-test than pre-test (concern with public attitudes higher though) ◦ For providers: empathy scores tended to be higher post-test than pre-test *Batey et al., manuscript in preparation

31. National Quality Center Acknowledgements Research participants! Collaborating partners ADPH & JCDH Health Services Center Birmingham AIDS Outreach The Health Policy Project Funders UAB CFAR AL PHTC UAB SOPH BOTE Stigma experts Laura Nyblade William Holzemer Bronwen Lichtenstein FRESH Study Team at UAB Lisa McCormick Bulent Turan Mirjam-Colette Kempf Modupe Durojaiye Maz Mulla Jason Leger Kristi Stringer Cathy Simpson Ruth DeRamus D. Scott Batey Melonie Walcott Samantha Whitfield

32. Getting to Zero

33. NQC Gratefully Acknowledges Janet M. Turan, PhD, MPH Professor Department of Health Care Organization and Policy Maternal and Child Health Concentration School of Public Health University of Alabama at Birmingham Janet M Turan Co-Director, Behavioral and Community Sciences Core UAB Center for AIDS Research (CFAR) Laura Nyblade, PhD. Senior Technical Advisor, Stigma and Discrimination HP+ and Global Health Division, RTI International 701 13 th St, NW, Suite 750 Washington, DC, 20005 Email: lnyblade@rti.orglnyblade@rti.org

34. Additional Resources  The Health Policy Project http://www.healthpolicyproject.com/index.cfm?id=stigmapackage  Alabama – Mississippi Public Health Training Center http://alphtc.org/fresh  To access the recording of the webinar, go to: https://meetny.webex.com/meetny/lsr.php?RCID=5edd57975ecd477fada59d777eae4bac