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Understanding and Addressing Stigma in Healthcare Settings Janet M. Turan, PhD MPH School of Public Health Center for AIDS Research (CFAR) University of Alabama at Birmingham AETC SHARE Project 1 Session Objectives At the end of the session, participants should be able to: Define types and dimensions of stigma. Explain how HIV-related and intersectional stigma experienced by clients can affect HIV prevention and treatment behaviors, as well as health outcomes. Identify the variety of interventions and tools that can be used in healthcare settings to reduce stigma. Describe the Finding Respect and Ending Stigma around HIV (FRESH) intervention methods and pilot results. Vision The United States will become a place where new HIV infections are rare, and when they do occur, every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identity, or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination. Stigma Definitions and Dimensions Attributes or behaviors that can cause individuals to lose social value an attribute that is "deeply discrediting" Reduces a person from being a whole and usual person to a "tainted, discounted one" What is Stigma? Health-related Stigma "a social process or related personal experience characterized by exclusion, rejection, blame, or devaluation that results from experience or reasonable anticipation of an adverse social judgment about a person or group identified with a particular health problem" (Weiss and Ramakrishna, Lancet, 2006) Examples of stigmatized health conditions/behaviors HIV Tuberculosis Obesity Mental illness Substance abuse disorders Smoking Sex work Dimensions/types of stigma Anticipated stigma (fears) Normative stigma (perceptions of community norms) Experienced or enacted stigma (discrimination) Internalized or self stigma EXPLAIN EACH IN SOME DETAIL. 8 HIV-Related Stigma and Discrimination Persist Globally and Locally * Photo courtesy of Dr. Bronwen Lichtenstein, UA Intersectional Stigma How Stigma Affects Health How can stigma affect health? Stigma adversely affects quality of life and physical and mental health of persons with stigmatized conditions Stigma and fears of stigma make people less likely to practice preventive behaviors and/or utilize needed health services Stigma can lead to discrimination and violence, with adverse consequences for health 12 A framework for the effects of stigma on health Stigma Psycho-social effects: Shame Blame Guilt Fear Denial Secrecy Silence Negative attitudes Behavioral Consequences: Lack of disclosure Delay in care Avoidance of services Not practicing prevention Not taking meds Discrimination Violence Effects on health: Poor mental health Mortality and morbidity Adverse health consequences of violence Transmission of infections *Adapted from Kumar et al., Culture, Health and Sexuality, 2009. DIRECT EFFECTS TOO! 13 What is known about the effects of HIV-Related Stigma? Qualitative and mainly cross-sectional studies have found that HIV-related stigma is associated with poor engagement in HIV care and ART adherence*, including: Lower acceptance of HIV testing Lower access to medical care Poorer ART adherence Lower utilization of HIV care *Katz et al., JIAS, 2013; Sweeney and Vanable, AIDS Behav, 2016. Disparities and HIV-Related Stigma Could differences in experiences and effects of stigma (including intersectional stigma) help explain disparities in HIV outcomes by gender, sexual orientation, and race/ethnicity? Women of color are at particularly high risk of acquiring HIV, and have worse health outcomes once infected compared to White women. HIV-infected women have lower ART adherence, lower retention, and higher mortality compared to men. Young black MSM have the highest rates of new HIV infections and worst outcomes in the US. Moderation and mediation effects. 15 A Conceptual Framework* *B. Turan et al., Framing Mechanisms Linking HIV-Related Stigma, Adherence to Treatment, and Health Outcomes, American Journal of Public Health, 2017. Experienced Stigma and Stress Experienced stigma may lead to chronic stress, which may affect physical health of PLWH (e.g., CD4 counts and viral load) Mechanism: stress-responsive biological systems (e.g., the hypothalamicpituitaryadrenal axis, sympathetic nervous system) HIV-Related and Intersectional Stigma in the US What do we know about HIV-related stigma in the United States and specifically in the South? 19 Less stigma? HIV stigma has declined over the past 20 years. That's good news, right? Not quite HIV has lost some of its power to instill fear, because it is no longer seen as a potential threat to everyone. However, stigma still serves as a barrier to HIV diagnosis, prevention, and access to care. HIV STIGMA IN THE US * Slide adapted from Dr. Bronwen Lichtenstein, UA Can it be overcome? Stigmatizing Attitudes at ProjectF.A.I.T.H. Churches in South Carolina (Lindley et al., Public Health Reports, 2010) 21 Silent Endurance and Profound Loneliness in the Rural South (Miles, et al., Qual Health Research, 2010) "They don't want [people with HIV] to come in their house . . . don't want to touch them . . . don't want to sit beside them. Hearing comments like that . . . I want to explain to them and tell them what's going on, but I don't. I just back down because I think that they're going to say the same thing about me". "They talk about you like a dog. People are just uncaring, insensitive . . . point their fingers and look down on PLWH [like] modern day leprosy." "They're stigmatized because of the fact that they got HIV . . . people look down . . . I guess they figure we're, how do you say it, degenerates." 22 Survey of Public Health and Primary Health Care Workers in the South* *Stringer et al., AIDS & Behavior, 2015. Qualitative Research onIntersectional Stigma In-depth interviews with 76 diverse women living with HIV in Alabama, Mississippi, George, and California * Rice et al., Social Science & Medicine, 2018 Intersecting stigmas experienced by diverse women living with HIV in the US Most commonly: Gender Race Poverty But also: Incarceration Age Body image "All my life I've always wondered what people discriminated against me for. Is it because I was Black? Is it because I was biracial? I never knew if people were discriminating against me because I was HIV-positive, because I was a woman. Honestly, I don't know what. I can't like really pinpoint. I just know that something. I guess it is like a gut feeling. Something just didn't feel right. Like somebody insulted me and like later I'm like what was that for?" PrEP Stigma as perceived by young Black MSM in the South* "I've heard the term Truvada whore. Like shaming people who take it. It's like in the gay community, it's like gay shaming. People think that guys who are on PrEP are overly promiscuous and all they want to do is have all this unprotected sex, these orgies and all this stuff.'' Okay. this is what it is. Other people are like, Okay, well, if you're doing PrEP, then what else are you doing? Are you just out here spreading it low, spreading it wide." * Elopre et al., AIDS Pt Care and STDs, 2018 Stigma in Healthcare Settings Why Addressing Stigma and Discrimination in Healthcare Settings is Important Persons affected by HIV may have frequent contact with healthcare providers Fears of stigma, discrimination, and lack of confidentiality in health facilities can discourage people from: accepting HIV testing / PrEP linking to HIV care after receiving an HIV-positive test result adhering to HIV visits and treatment, or to PrEP Getting other kinds of healthcare that they need Rebecca's story from the International Conference on Stigma* "Once they found out I had HIV, nobody wanted to do my C-section." Rebecca's surgerywas scheduled at 8 am. At 7 am she got the positiveresults of her HIV test. But then it was 9 am. And then 11 am. There was no one willing to operate on an HIV positive patient. "And now, every time I go to a hospital or a doctor, I get a panic attack. The feelings of being treated as untouchable come back." *http://www.whocanyoutell.org/2017-conference/ Stigma in HC Settings Fears and experiences of stigma in healthcare settings can both cause internalized stigma and erode trust in healthcare workers, resulting in detrimental effects for the mental and physical health of PLWH. Internalized HIV stigma is associated with lower antiretroviral therapy (ART) adherence. This association may be stronger for PLWH in racial/ethnic minority groups as compared to whites. Intersection of HIV Stigma and Substance Use Stigma for PLWH who use Drugs Quantitative findings* HIV stigma did not predict retention in care or ART adherence Anticipated drug use related stigma predicted less adherence to ART Anticipated drug use stigma remained a significant predictor of ART adherence when controlling for HIV-related stigma Qualitative findings HIV related stigma impacts medication adherence and retention in care through stigma avoidance strategies hiding medications avoiding being seen at the HIV clinic Drug use related stigma impacts the patient provider relationship Occurred inside and outside the specially care environments Limiting communication Provision of sub-optimal care * Stringer KL, et al., AIDS Pt Care & STDs, 2019 32 Key Principles for HIV Stigma-Reduction Interventions* Address immediately actionable drivers Raise awarenessDiscuss and challenge the shame and blame Address HIV transmission fears and misconceptions Affected groups at the center of the response Develop and strengthen networks Empower and strengthen capacity Address self-stigma Create partnerships between affected groups and opinion leaders Contact strategies Build empathyModel desirable behaviorsRecognize and reward role models *Nyblade L, Stangl A, Weiss E, et al. Combating HIV stigma in health care settings: What works? J Int AIDS Soc 2009;12:15. 33 Interventions that address HIV-related and intersectional stigma in HC settings Interventions that work with health workers Medical/nursing students, current service providers, all levels of staff in a facility In-person workshops, seminars, videos, tablets See Nyblade et al., BMC Medicine, 2019. Interventions that work with PLWH/community members AA women, Black MSM, Transgender groups, faith-based organizations Group-based and individual interventions See for example Bogart et al. in Cultur Divers Ethnic Minor Psychol, 2018 Interventions that work with both Multi-Country African Study (Uys et al. AIDS Pt Care STDS, 2009) FRESH adaptation for the US (Batey et al. AIDS Pt Care STDs, 2016) 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 HPP Stigma-Reduction Package Core Components Source: http://www.healthpoliccyproject.com/index.cfm?id=stigmapackage Training Package Based on field application in 9 countries Can be tailored for different health worker 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 36 Example Healthcare Setting Stigma-Reduction Intervention in the United States The FRESH Intervention (Finding Respect and Ending Stigma around HIV) An intervention to reduce HIV-related stigma and discrimination in healthcare settings Adapted from a Health Setting-Based Stigma Reduction Intervention in Five African Countries* Based on interpersonal contact theory and social cognitive theory Sharing information sharing the results of local data collection on HIV-related stigma and giving general information about the impact of stigma on persons living with HIV Increasing contact with the affected group bringing together a group of health workers and people living with HIV to plan stigma-reduction activities together Improving coping through empowerment engaging clients in an activity in which they can address stigma directly, not just accept or live with it *PI: Holzemer; Uys et al., 2009 Importance of Context The idea of bringing clients and providers together to address stigma in healthcare settings seemed transferable When adapting for Alabama, we realized the importance of taking into account the very different context in the US South Health system characteristics Client characteristics Social-cultural context of communities Socio-economic factors Intersectional stigma To Inform Intervention Adaptation Data initially collected and analyzed from: At-risk populations in AL 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 Online survey of public health and primary health care workers in AL and MS* Online surveys including validated stigma scales were completed by 651 health workers Focus groups with persons living with HIV in Birmingham** *Stringer et al., AIDS & Behavior, 2016. **Batey et al., AIDS Patient Care and STDs, 2016. FRESH Workshop Intervention for AL 10-15 health workers Doctors, nurses, receptionists, counselors, social workers, outreach workers, etc. 10-15 consumers (persons living with HIV) Jointly facilitated by one health worker (social worker) and one consumer (PLWH) 1.5 days (full day followed by half day 1-2 weeks later) In a neutral location (UAB School of Public Health) FRESH AL Workshop Agenda Understanding Stigma Local data on stigma and discrimination in AL Exercise: Roots and Leaves Intersecting Stigmas Exercise: Stigma stories Outcomes of Stigma HIV Knowledge Update (over lunch) Challenging and Coping with Stigma Exercise: Why is Stigma Hard to Change Stigma Reduction Strategies Intervention examples to reduce stigma Activity: Working together to come up with ideas for activities to reduce stigma in the healthcare setting in our community Main Modifications Made: including participants from across the city, not from specific health facilities neutral, non health facility location making the workshop shorter to accommodate busy schedules addition of a module on other intersecting stigmas and discrimination (e.g., racism, homophobia) targeting group projects to focus on ideas for reaching the larger population of health workers in the region FRESH AL pilot results* Satisfaction with the workshop experience was high 87% PLWH and 89% HW rated the workshop "excellent" Content analysis of open-ended items revealed that participants felt that the workshop: Was informative, interactive, well-organized, understandable, fun, and inclusive Addressed real and prevalent issues Although sample sizes were small, positive trends in pre-post test measures were observed: increased awareness of stigma in the health facility among HWs (p=.047) decreased uncertainty about HIV treatment among PLWH (p=.017) *Batey et al., AIDS Patient Care and STDs, 2016. FRESH Continues. CFAR Supplement funded to collect baseline data from clients and providers at 6 HIV clinics across Alabama and Tennessee, with plans to further adapt and test the intervention at more clinics across the US South NIH Fogarty supported R21 to adapt and pilot FRESH for the Dominican Republic with a focus on MSM and Transgender clients (R21TW011761) FRESH Acknowledgements Collaborating partners ADPH & JCDH Health Services Center Birmingham AIDS Outreach The Health Policy Project Chattanooga Cares (Chattanooga) Medical AIDS Outreach (Montgomery and Dothan) Thrive Alabama (Huntsville) Unity Wellness (Opelika) USA Family Specialty Clinic (Mobile) Whatley Health Services (Tuscaloosa) UNIBE, Dominican Republic Caribbean Vulnerable Communities Coalition Funders UAB CFAR, National CFAR AL PHTC UAB SOPH BOTE NIH Fogarty International Center Stigma experts Laura Nyblade Pamela Payne-Foster William Holzemer Bronwen Lichtenstein Nelson Varas-Diaz Research participants! FRESH Study Team at UAB D. Scott Batey Janet Turan Bulent Turan Kristine Hauenstein Samantha Whitfield Emma Sophia Kay Kaylee Crockett Henna Budhwani Murray Ladner Joshua Sewell Matt Fifolt Ruth DeRamus Lisa McCormick Mirjam-Colette Kempf Modupe Durojaiye Maz Mulla Jason Leger Kristi Stringer Cathy Simpson Melonie Walcott Katie Adams Frau Lieb Getting to Zero