HIV/AIDS stigma among health professionals in Puerto Rico: Implications and strategies for action

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

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. 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. 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).

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)

6. AIDS cases N=32,285

7. AIDS cases and gender

8. HIV cases N=7,156

14. Voices of PLWHA

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

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

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. “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. 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. Design Stage 1 Qualitative Interviews 40 Health Professionals 40 HP Students Areas: Medicine Nursing Psychology Social Work Stage 2 Quantitative questionnaire 421 HP Students Stage 3 Pilot Intervention Development and Implementation 50 HP Students

22. Participants • Stage 1: Qualitative Interviews (n=80) • Mean Age = 32 • Women = 56 • Worked with PLWHA = 39 • Family annual income between $20,001 and $30,000 = 39 • Knew at least one PLWHA = 60 • Had completed HIV/AIDS training = 41 • Stage 2: Quantitative Questionnaire (n=421) • Mean Age = 26 • Women = 319 • Worked with PLWHA = 103 • Family annual income between $20,001 and $30,000 = 168. • Knew at least one PLWHA = 171 • Had completed HIV/AIDS training = 164

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. “I want to take that woman and just strangle her. I also want to go to the traffic lights and strangle the others [that ask for money]. It enrages me because I know they had other opportunities and they did not take them. I also know that they probably recognized which opportunities those were. It enrages me. It enrages me”. [Medicine Student] “I prefer not to take care of him, but I did not refuse and I accept the task. Because I see it as a my responsibility, because it is a work duty and morally, because I know that somebody must take care of him. But I still feel very, very, very afraid, very afraid”. [Nurse]

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]

26. “Of course, this is a disease. This is a worldwide catastrophe. This is like a web, like a spider’s web that when you fall into it, you can’t get out. Nobody can fix this”. [Physician] I: “Let’s imagine that you are going to be operated on, and you find out the doctor is HIV positive. Would you like to be informed before the operation of his status?” P: “Yeessss. This is a disease we are all afraid of. This is like a monster that’s coming towards us”. [Psychology Student]

27. Types of stigmas for each profession

28. HIV/AIDS stigma dimensions

29. Intervention development

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. Sessions and addressed subjects

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. 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. Results from our pilot study These preliminary results need to be interpreted in light of some key components of the intervention: -Structural perspective towards infection -Skills for social interaction with clients -Monitoring of emotional reactions towards clients

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. 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.