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 StudiesDecember 11, 2008
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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
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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.
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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).
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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)
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AIDS cases
15,650
8,046
344
5,250
560
2,000
4,000
6,000
8,000
10,000
12,000
14,000
16,000 IDU
Heterosexual
Unspecified
Homosexual
HemophiliaN=32,285
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AIDS cases and gender
12900
2750
33984648 5250
0 59 70
2000
4000
6000
8000
10000
12000
14000
IDU
Heterosexual
Homosexual
Hemophilia Males
Females
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HIV cases
2582
2144
1214
859
40
500
1000
1500
2000
2500
3000 IDU
Heterosexual
Unspecified
Homosexual
Hemophilia
N=7,156
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10
11
12
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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
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“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
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“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
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“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
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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
Health professionals
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Design
Stage 1
Qualitative Interviews
40 Health Professionals40 HP Students
Areas:MedicineNursing
PsychologySocial Work
Stage 2
Quantitative questionnaire
421 HP Students
Stage 3
Pilot InterventionDevelopment and
Implementation
50 HP Students
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Participants
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
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
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“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]
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“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]
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“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]
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“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]
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Types of stigmas for each profession
00.5
11.5
22.5
33.5
44.5
5
Medicine Nursing Psychology SocialWork
SexismHomophobiaDrug UseHIV/AIDS
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HIV/AIDS stigma dimensions
3
3
3.8
2.2
2.6
3.4
3
2.7
1 2 3 4 5
Fear of infection
Responsibility over infection
Obliged to reveal status
Vector of infection
Lack of productivity
Negative emotions
Closeness to death
Need to restrict rights
Intervention development
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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
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Sessions and addressed subjects
Sessions and their Relation to our Addressed Dimensions and Theoretical Framework
Intervention Session
Addressed Dimension Theoretical Framework SCT Factors Addressed
Session 1 -Responsibil ity for infection Origin (Jones, 1984)
Blemishes of character (Goffman, 1963) Tribal Stigmas (Goffman, 1963)
Cognitive Environmental
Session 2
-Emotions associated with HIV/AIDS -Behavioral interaction with patients
Disruptiveness (Jones, 1984) Course of the stigma (Jones, 1984)
Association with death (Jones, 1984) Aesthetic qualities (Jones, 1984)
Cognitive Environmental
Behavioral
Session 3
-Fear of infection -PLWHA as obliged to reveal
serostatus -Behavioral interaction with patients
Disruptiveness (Jones, 1984) Association with death (Jones, 1984)
Visibility (Jones, 1984) Body Abominations (Goffman, 1963)
Cognitive Environmental
Behavioral
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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.
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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
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Results from our pilot study
Pre and Post-test Scores for the Preliminary Impact Evaluation of the Intervention Pre-test Post-test P Overall HIV/AIDS stigma 2.82 2.17 .000 HIV/AIDS Stigma Factors
Fear of infection 2.68 2.03 .000 Responsibility for infection 2.05 1.62 .001 PLWHA as obliged to reveal serostatus 3.56 2.42 .000 Emotions associated with HIV/AIDS 2.97 2.63 .044
N=47
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
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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.
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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.
