HIV

1. HIV/AIDS stigma among health professionals in Puerto Rico:  Implications and strategies for action Nelson Varas Díaz, Ph.D. University of Puerto Rico Graduate School of Social Work HIV Center for Clinical and Behavioral Studies December 11, 2008 - My concern over how discourses related to health and illness have used stigmatization for the construction of, not only a devalued subject, but a dangerous individual. -I will use data from quantitative surveys, qualitative surveys, media campaigns and policy efforts. -Based on a study funded by the National Institute of Drug Abuse.- My concern over how discourses related to health and illness have used stigmatization for the construction of, not only a devalued subject, but a dangerous individual. -I will use data from quantitative surveys, qualitative surveys, media campaigns and policy efforts. -Based on a study funded by the National Institute of Drug Abuse.

2. 2 Understanding stigma Erving Goffman (1963): Defines stigma as a discreditable attribute that serves to devalue a person or group. Establishes types of stigma due to source Tribal stigmas Blemishes of individual character Body abominations Edward Jones et al. (1995): Established the dimensions of stigma that worsen its consequences. Ability to be concealed Course Origin Death Disruptiveness

3. 3 Understanding stigma Bruce Link and Jo Phelan (2001): Expose the complexities of defining stigma and see it as a convergence of multiple components within a power dynamic. Labeling, stereotyping, status loss, discrimination, etc. Gregory Herek and Eric Glunt (1988): Contribute to the definition of AIDS-related stigma. Inclusion of caretakers. Richard Parker and Peter Aggleton (2002): Inclusion of power as a central concept within HIV/AIDS stigma. Social structure as a key component. Urgent need for intervention development.

4. 4 Stigma and health professionals The social meaning of health highlights their importance (Turner, 2001; Varas-Díaz, et al., 2005). Power dynamics have to be integrated into the analysis (Link & Phelan, 2001; Parker & Aggleton, 2002). Context of this dynamic: Privatization of the health system under the “Reforma”. Implementation of a “new public health” perspective (Petersen & Lupton, 2000). -Research has shown that more important than the illness itself, are the meanings that surround it. Becoming sick in our context is a sign of failure. Even of religious failure. -Goffman has been extended by works using the concept of Foucault’s biopower. - Link to the body. (Body abominations, tribal stigmas, blemishes of character) -New public health: Having controlled major infectious diseases, now individual behavior is focused for what are considered “lifestyle” problems. It sometimes lacks a clear understanding of the context that limit individual choices. Ex… Dengue fever…-Research has shown that more important than the illness itself, are the meanings that surround it. Becoming sick in our context is a sign of failure. Even of religious failure. -Goffman has been extended by works using the concept of Foucault’s biopower. - Link to the body. (Body abominations, tribal stigmas, blemishes of character) -New public health: Having controlled major infectious diseases, now individual behavior is focused for what are considered “lifestyle” problems. It sometimes lacks a clear understanding of the context that limit individual choices. Ex… Dengue fever…

5. 5 An epidemic in context PR has more than 30,000 reported AIDS cases (PR Department of Health, 2008). Political relation with the US (Fernández, 1996; Varas-Díaz & Serrano-García, 2003). Determines prevention efforts. Highest % of children under poverty line. Highest % of the population under poverty line (Nastad, 2008) -There is a severe case of underreporting. It is estimated that 2% of the population might be infected. -Agencies sometimes exclude us because US / Latin American divide.-There is a severe case of underreporting. It is estimated that 2% of the population might be infected. -Agencies sometimes exclude us because US / Latin American divide.

6. 6 AIDS cases

7. 7 AIDS cases and gender

8. 8 HIV cases

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14. Voices of PLWHA

15. 15 Design N=30 Puerto Ricans LWHA Means of exposure Unclean needle sharing Unprotected heterosexual relations Unprotected homosexual relations Qualitative semi-structured interviews

16. 16 “Yes, it happened to me once. I went to a dentist in Canóvanas (town) and after they sat me in the chair and the technician started to ask for my data, she asked me if I had any conditions. I told her that I was HIV positive and she refused to see me. She went and spoke to the dentist and told me ‘we can’t see you’”. HET - This was our first interview.- This was our first interview.

17. 17 “Since I became HIV positive I don’t like visiting doctors or hospitals. I would like to not have to come here. I don’t like people talking to me about the subject. I segregate myself. Do you know why? To forget that I am HIV positive. I’d rather go to the pharmacy to buy anything and take it. At least I know what my ailment is and what to buy. I go to the pharmacy and buy it. I don’t come here for a prescription or to an emergency room”. HET

18. 18 “Yes, as I said before, when I was hospitalized I felt rejected by nurses. Not by doctors because they come, see you and leave. The nurses that are tending to you right there, you generally see the rejection, the fear, the lack of treatment and attention”. HOM “They show it (behaving) like robots. Like people who are robots. They put your IV and that’s it. It’s not because they want to help a person, it is an automatic thing that they have to do and they do it”. FIDU

19. 19 In summary Problems with access to services Avoidance of services and emergency room visits Self-medication Power dynamics in the medical encounter Lack of communication Different interpretations of what is stigma

20. Health professionals

21. 21 Design -Talk about NIDA reaction…-Talk about NIDA reaction…

22. 22 Participants

23. 23 “You have to manage things in life as they are. You don’t treat a dog with rabies as a tamed one, they are two different things. The same things happen with these life and death cases. That’s why I chose not to work in emergency rooms anymore. I don’t want to have more risks to my health. If one person infects another with AIDS that is murder, be it intentional or not”. [Physician] “Well… I’m about to become a psychologist so I can’t react like a compulsive person, so I would try to talk to the surgeon and tell him to be very careful and not cut himself. It would really have an impact on me… to acquire the virus especially in a situation like that. So, I think that I would talk to the surgeon or I’d rather not go through the operation”. [Psychology Student]

24. 24 -Context of people in traffic lights and poverty. -Issues of importance: religious duty and emotions.-Context of people in traffic lights and poverty. -Issues of importance: religious duty and emotions.

25. 25 “You have HIV and the State understands that these women are going to bring sick kids into the world, sterilize them… sterilize them, sincerely. If they don’t want to get sterilized because they know that the kids they bring to this world are going to have people who will take responsibility for them, well… let them have them! (…) Now, if there’s no one responsible to take her place, well honestly, the State should sterilize them”. [Social Worker] -This is why policy efforts based on the “dangerous subject” are in fact problematic… they are supported by health professionals.-This is why policy efforts based on the “dangerous subject” are in fact problematic… they are supported by health professionals.

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27. 27 Types of stigmas for each profession -Drug use is the highest… this is important in a n IVU driven epidemic. Still, homophobia is the best predictor still. -Health professionals in the biological spectrum are more stigmatizing.-Drug use is the highest… this is important in a n IVU driven epidemic. Still, homophobia is the best predictor still. -Health professionals in the biological spectrum are more stigmatizing.

28. 28 HIV/AIDS stigma dimensions

29. Intervention development

30. 30 Intervention development Background: R21 funded by NIDA through the Stigma and Global Health RFA R01 funded by NIMH 12 hour workshop Three 4-hour sessions Ongoing implementation with medical students Three major medical schools in Puerto Rico have collaborated. University of Puerto Rico’s School of Medicine San Juan Bautista School of Medicine Ponce School of Medicine

31. 31 Sessions and addressed subjects

32. 32 Testing our intervention Randomized Clinical Trial Intervention: HIV/AIDS Stigma reduction workshops. Control: Existing HIV training in Puerto Rico (focus: epidemiology, means if infection) Participants Total n = 500 Current recruitment: 130 Implementation Small groups of 20 participants Participative exercises Carried out at their sites, times of preference, etc.

33. 33 Evaluation component Quantitative Evaluation Pre-test Post-test after the intervention Post-test at 6 months Post-test at 12 months Internet use for follow-up at 6 and 12 months Measures - Developed for NIDA funded R21 HIV/AIDS Stigma Questionnaire HIV/AIDS Information Skills: Patient interaction and stigma identification Social desirability

34. 34 Results from our pilot study

35. 35 Lessons Professionals in practice were less receptive towards participating in workshops addressing the social aspects of HIV/AIDS. Partnership with medical schools has been crucial for this effort. Medical students are trained from an individual responsibility perspective. Context (cultural values) needs to be addressed in their interventions.

36. 36 Lessons Health professionals are a “power group”. Early intervention is key for stigma reduction. Religious beliefs are an important variable as evidenced by our preliminary studies and intervention experience. Dissemination of scientifically tested interventions is important among this sector of the population.