Arlene K Bincsik, RN, MS, CCRC, ACRN, Director, HIV Program, Christiana Care Health Services Inc

1. Understanding and Addressing Stigma to Increase Access, Engagement, and Retention in HIV Care and Treatment • Arlene K Bincsik, RN, MS, CCRC, ACRN, Director, HIV Program, Christiana Care Health Services Inc • Valerie A Earnshaw, PhD, Human Development & Family Sciences, University of Delaware

2. Disclosures Arlene Bincsik-No Disclosures Valerie Earnshaw Grant/research support from: National Institutes of Health (K01DA042881) This continuing education activity is managed and accredited by AffinityCE/Professional Education Services Group in cooperation with HRSA and LRG. PESG, HRSA, LRG and all accrediting organization do not support or endorse any product or service mentioned in this activity. PESG, HRSA, and LRG staff as well as planners and reviewers have no relevant financial or nonfinancial interest to disclose. Commercial Support was not received for this activity.

3. Learning Objectives At the conclusion of this activity, the participant will be able to: Define HIV stigma, and summarize ways in which HIV stigma typically undermines access, engagement, and retention in HIV care and treatment Describe research methods that can be applied to understand consumers’ experiences of HIV stigma Identify strategies to address consumers’ experiences of HIV stigma and to increase access, engagement, and retention in HIV care and treatment Formulate plans for collaborative partnerships to understand and address HIV stigma

4. HIV Stigma: Conceptual Overview • Arlene Bincsik, RN, MS, CCRC, ACRN Christiana Care • Valerie Earnshaw, PhD, University of Delaware

5. Stigma Social devaluation and discrediting associated with a mark or characteristic1 1Goffman, 1963; 2Crocker, Major, & Steele, 1998; 3Link & Phelan, 2001

6. Stigma Social devaluation and discrediting associated with a mark or characteristic1 • Physical illnesses: HIV/AIDS, tuberculosis, epilepsy • Mental illnesses: schizophrenia, bipolar disorder • Social norm violations: homosexuality, sex work, drug use • Socio-demographic characteristics: racial/ethnic background, gender identity, socioeconomic status 1Goffman, 1963; 2Crocker, Major, & Steele, 1998; 3Link & Phelan, 2001

7. Stigma Social devaluation and discrediting associated with a mark or characteristic1 Stigma results from a social process2,3 • Marks constructed as indicators of tarnished character • Used to justify discrimination toward and power loss of people with mark 1Goffman, 1963; 2Crocker, Major, & Steele, 1998; 3Link & Phelan, 2001

8. HIV Stigma Framework Mechanisms: -Internalized -Enacted -Anticipated Outcomes: -TX Adherence -Mental, Physical Health Living with HIV HIV Stigma Mechanisms: -Prejudice -Stereotypes -Discrimination Outcomes: -Social Distancing -HIV Testing -Policy Support Not living with HIV Earnshaw & Chaudoir (2009). AIDS & Behavior.

9. Individual Level Mechanisms: Target Internalized Stigma • Endorsement of negative beliefs/feelings, applying those the self • i.e., self-stigma Enacted Stigma • Experiences of stigma from others in present or past • i.e., perceived discrimination, experienced stigma • e.g., lost job or housing, treated poorly or with disrespect Anticipated Stigma • Expectations of stigma from others in future • e.g., worry or concern about losing job or housing, being treated poorly or with disrespect in future

10. Hypotheses HIV Stigma Mechanisms Health and Well-Being Internalized HIV Stigma Affective Behavioral Anticipated HIV Stigma Enacted HIV Stigma Physical Earnshaw, Smith, Chaudoir, Amico, & Copenhaver (2013). AIDS & Behavior.

11. Methods Participants • 95 PLWH in the Bronx, NYC • Age: M = 49.34, SD = 9.45 years • Primarily Latino(a) (55.8%) and/or Black (48.4%) Procedure • Interviewer-delivered survey • Stigma mechanisms • Affective well-being, adherence, chronic illness co-morbidity • Medical charts • CD4, medical care visits

12. Results HIV Stigma Mechanisms Health and Well-Being Internalized HIV Stigma Affective • More helplessness (β = 0.45, p < 0.01) • Less acceptance of HIV (β = -0.35, p < 0.01) • Fewer perceived benefits of HIV (β = -.31, p < 0.01) Anticipated HIV Stigma Enacted HIV Stigma

13. Results HIV Stigma Mechanisms Health and Well-Being Internalized HIV Stigma Behavioral Anticipated HIV Stigma • Longer medical care gaps (β = 0.20, p < 0.01) • Medication non-adherence (OR = 1.73, p < 0.10) Enacted HIV Stigma

14. Results HIV Stigma Mechanisms Health and Well-Being Internalized HIV Stigma Anticipated HIV Stigma Enacted HIV Stigma Physical • Chronic illness comorbidity (OR = 4.25, p < 0.05)

15. Results HIV Stigma Mechanisms Health and Well-Being Internalized HIV Stigma Anticipated HIV Stigma Enacted HIV Stigma Physical • CD4 count lower than 200 (OR = 4.43, p < 0.05)

16. Discussion HIV Stigma Mechanisms Health and Well-Being Internalized HIV Stigma Affective Behavioral Anticipated HIV Stigma Enacted HIV Stigma Physical

17. Evaluating HIV Stigma in DE

18. Rest of NCC 27% Wilmington 39% 66% Living HIV/AIDS Jan 1981 – Dec 2016 n = 3,381 13% 21% HIV/AIDS in DELAWARE

19. Risk Categories by County of Residence

20. National - 2014 Delaware - 2016 Delaware’s living AIDS cases through 2016 by race are % Among AIDS 29% White 62% Black 7% Hispanic 2% other races The distribution of living AIDS cases by race nationally is % Among AIDS 31% White 42% Black 22% Hispanic 6% other races National VS. DelawareLiving AIDS Cases by Race

21. CHRISTIANA CARE HEALTH SYSTEM INC

22. CHRISTIANA CARE HEATLH SYSTEM INC

23. OUR MISSION STATEMENT

24. THE HIV COMMUNITY PROGRAM

25. HIV Program Clinical Services HIV Medical Evaluation and Treatment Internal Medicine Evaluation and Treatment Hepatitis C Treatment PEP and PrEP OB/GYN Adolescent/Young Adult Specialty Clinic Mental Health Evaluation and Treatment Office Based Opioid Treatment Pharmacist Medication Adherence ADAP/ 340 B Prime Vendor Medical Social Work Comprehensive referrals to subspecialists

26. Community Program Demographics N=1,717 in 2017

27. VIRAL LOAD SUPPRESSION

28. Qualitative Study: Goals Characterize barriers to HIV care and experiences of HIV stigma in Delaware Compare barriers to HIV care and experiences of HIV stigma based on: • Geographic location: Wilmington, Smyrna, Georgetown • Role: patient, provider • Patient language: English, Spanish

29. Methods Procedures Individual interviews: PLWH and providers Up to 1 hour Example questions: • PLWH: How much has the stigma of HIV been a problem for you? In other words, do you feel that people treat you differently or mistreat you because they know that you have HIV? • Providers: Is stigma or discrimination a problem for your patients? In other words, do people treat your patients differently or mistreat them because they know that they’re living with HIV? IRB approval from UDelaware and Christiana

30. Methods All Participants (n=56): Location: 24 Wilmington, 13 Smyrna, 19 Georgetown Role: 42 PLWH, 14 provider Gender: 33 men, 23 women PLWH Only (n=42): Average time LWH: 10.7 years Race/Ethnicity: 7 White, 16 Black, 13 Latino(a), 5 Other Language: 30 English, 12 Spanish Sexual Orientation: 20 LGBTQ, 18 heterosexual, 4 other

31. Codebook Individual Factors • Emotions • Medication + TX Experiences • Health Belief System • Internalized Stigma • Motivation • Substance Use Recommendations Interpersonal Factors • Disclosure + Concealment • Enacted + Anticipated Stigma • Relationships with HIV Providers • Social Support Structural Factors • Community Stigma + Knowledge • Competing Priorities • Experiences with Care outside CC • Transportation + Location

32. Codebook Individual Factors • Emotions • Medication + TX Experiences • Health Belief System • Internalized Stigma • Motivation • Substance Use Recommendations Interpersonal Factors • Disclosure + Concealment • Enacted + Anticipated Stigma • Relationships with HIV Providers • Social Support Structural Factors • Community Stigma + Knowledge • Competing Priorities • Experiences with Care outside CC • Transportation + Location

33. Results: Internalized Stigma “I saw her a couple months ago in the hospital and it was all about stigma… She was catastrophizing the virus… It’s almost like she was allowing that stigma to control her life.” (Provider, Wilmington) “When I was first diagnosed, I actually hated myself because of so much I went through… but like I’ve said, I’ve learned to love myself and do what I need to do for myself.” (PLWH, Smyrna) “I went through a ‘dirty’ phase when I was diagnosed. Just like ’I’m the filthiest human being alive, my blood is shit and what good am I’?” (PLWH, Georgetown) “If you have some kind of self-imposed guilt that you’ve gotten yourself diagnosed with HIV somehow, like, you see yourself as marked…. That effects your ability to properly take care of yourself I think. And I think we see people struggle with it here and it’s because they can’t come to terms with their diagnosis.” (Provider, Georgetown)

34. Results: Disclosure + Concealment “I don’t care who they be, they can be friends, acquaintances, whoever, I just, I just come straight out and tell them cuz half of them have it… Nah, I was more worried about dying (laughs). I ain’tcare about if people knew, I was worried about dying.” (PLWH, Wilmington) “The Haitian community, they don’t divulge… for fear of being shunned from the group… we have six or seven Haitian patients… all of them had said they didn’t state what their diagnosis was because it was not something that their culture accepts readily, and that there would be further, they call it problems for them if it were known.” (Provider, Smyrna) “We do have some people travel great distances… They choose to come here so that they’re not identified at a clinic near their residence… So in that case they would travel to ours’ just to avoid being seen.” (Provider, Smyrna) “I just haven’t really been proactive about finding (resources)… I haven’t put myself out there to do that because again, people might find out. I’m still on that. I’m still on that train where I don’t want people to know. Because it’s not any of their business, you know? And the community is small down here. Everybody knows everybody down here.” (PLWH, Georgetown)

35. Results: Enacted + Anticipated Stigma “People tend to shy away from you, you know what I mean. They’ll start treating you differently… Isolate me, ya know. No conversation… ’Hi and bye’ and keep moving. I don’t think they would sit with you at the same lunch table or something like that.” (PLWH, Wilmington) “There may be fears of violence and we hear that a lot from the women… They’re really afraid that if they ask their partner to use a condom or if they tell their partner straight out that they’re HIV positive that it’s not just going to be rejection as in ‘well, I don’t want to be in a relationship,’ but that there’s actually going to be physical violence.” (Provider, Wilmington”

36. Results: Enacted + Anticipated Stigma “Our population… it’s a higher LGBT population. It’s a higher lower socioeconomic status population and I feel like for both of those reasons there’s stigma. And you add HIV on top of that there’s an additional stigma… As I mentioned before even providers not feeling comfortable treating them in terms of primary care even if their HIV is under control… We have great things for HIV care but patients now a days are not dying from HIV. They’re dying of heart failure, of diabetes, of depression, of MI’s , cancer and they – a lot of them just don’t have a good PCP to go to…I think stigma is playing a role.” (Provider, Smyrna) “I’m definitely worried that people will judge me… I’m worried about discrimination and employment… Especially in my industry, there’s always a way to get somebody out, indirectly or you know.” (PLWH, Georgetown)

37. Results: Community Stigma + Knowledge “He comes from a rural area of his country where you don’t even know what HIV is. He said before him coming to this country they didn’t know anything about HIV. So he thinks there could be a possibility of mistreatment or stigma from the Hispanic community.” (Spanish-speakingPLWH, Wilmington) “They still feel like they can get it from touching you or kissing you or from a toilet seat or you know… I’d say about 90% of people are probably stuck in that mindset, and then the other 10% are the people that go to the walks and do everything that understand it.” (PLWH, Smyrna) “It’s more of a stigma when I deal with straight America… When I talk to the gay population they’re a little more understanding and they get that it doesn’t define you and that it’s not a death sentence… But when I deal with the straight population it’s just like they’re a little bit more uninformed.” (PLWH, Georgetown) “I think in today’s world, it’s still very taboo, still very stigmatized, but I think now certain populations or especially our gay men are way more open about it.” (Provider, Georgetown)

38. Discussion Experiences of HIV stigma in Delaware Variations in HIV stigma by: • Geographic location: Wilmington, Smyrna, Georgetown • Role: patient, provider • Patient language: English, Spanish

39. Research Methods to Evaluate HIV Stigma

40. Qualitative Methods Data collection Individual interviews Focus groups: in person or online Open-ended written responses

41. Qualitative Methods Example questions for PLWHA Internalized stigma: How do you feel about living with HIV? Have these feelings changed since you were diagnosed? Disclosure: Who knows that you’re living with HIV? Why do you tell some people that you’re living with HIV? Do you worry that people who don’t know that you have HIV might find out? If so, what makes you worried? Stigma: How much has the stigma of HIV been a problem for you? In other words, do you feel that people treat you differently or mistreat you because they know that you have HIV? Stigma Impact: Have any of these experiences with other people affected whether you come in for treatment or take your medication?

42. Qualitative Methods Example questions for providers: Disclosure: Do your patients typically tell other people that they are living with HIV? Why or why not? Stigma: Is stigma or discrimination a problem for your patients? In other words, do people treat your patients differently or mistreat them because they know that they’re living with HIV? Stigma Impact: Do you think that these experiences might affect whether patients access care or take their mediation? How so?

43. Quantitative Methods The People Living with HIV Stigma Index Created by PLWH, for PLWH, implemented by PLWH Conducted worldwide Measures experiences of internalized stigma, enacted stigma from friends/family, institutional stigma (e.g., workplace, housing, healthcare discrimination) See user guide for instructions on using in your community: www.stigmaindex.com

44. Quantitative Methods CDC Medical Monitoring Project: Wright Stigma Scale 10 items, transformed to 100 point scale Measures: • Personalized stigma (i.e., enacted stigma) • Disclosure concerns • Negative self-image (i.e., internalized stigma) • Perceived public attitudes Findings • Median score: 38% (0 = no stigma, 100 = high stigma) Wright, Naar-King, Lam, Templin, & Frey (2007; www.cdc.gov/hiv/statistics/systems/mmp/index.html)

45. Quantitative Methods

46. Intervention Strategies to Address HIV Stigma

47. PLWH: Enhancing Resilience Resilience1,2 • Capacity to overcome serious threats to development and health Resilience Resources • Strength-based • Sometimes modifiable  Potentially appropriate for intervention 1Teti et al., 2012; 2Ungar, 2008

48. PLWH: Spiritual Peace What is it? • Sense of peace and meaning from spiritual beliefs What were the findings? • PLWH who experienced stigma (internalized, enacted, anticipated) but reported greater spiritual peace had less depressive symptoms What should we do? • Encourage meaning and connectedness with others • Emphasize self-worth Chaudoir, Norton, Earnshaw, Moneyham, Mugavero, & Hiers (2012). AIDS & Behavior

49. PLWH: Instrumental Social Support What is it? • Material support, behavioral assistance from others • Ex: Driving to doctor’s appointment What were the findings? • PLWH who anticipated stigma and had more instrumental social support did not experience stress, poor health What should we do? • Ask for instrumental social support • Provide instrumental social support Earnshaw, Lang, Lippitt, Jin & Chaudoir(2015). AIDS & Behavior.

50. PLWH: Perceived Community Support What is it? • Access to accepting/supportive services and organizations • Ex: look around! What were the findings? • PLWH who anticipated stigma and perceived more community support did not experience stress, poor health What should we do? • Seek supportive organizations • Participate in supportive organizations/communities Earnshaw, Lang, Lippitt, Jin & Chaudoir(2015). AIDS & Behavior.