Neil Abell, PhD, LCSW Grand Rounds FSU College of Medicine February 3, 2011

Neil Abell, PhD, LCSW
Grand Rounds
FSU College of Medicine
February 3, 2011
When conditions are sufficient,
something will arise.
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“Those people who were marginalized, stigmatized and discriminated against before HIV/AIDS arrived – have later become, over time, those at highest risk of HIV infection.”
Jonathan Mann, UNAIDS
Continuing an “us vs. them” distinction
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 Pushing people away
 From services & care
 From positive connections with others
 Emphasizing the need for advocacy
 Providing a “voice to the voiceless”
 Lobbying for access and social capital
 Recognizing tendencies to deny or blame
 Perpetuating assumptions about cause and responsibility
 Overlooking the consequences
 Mistrust and suspicion in service delivery
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 Medical
 Case Management / Service Coordination
 Quality of life
“The health delivery system lacks tolerance for clients who are not persistent, focused, knowledgeable, assertive, self‐
assured, or ‘traditional’ “ (Fullilove, et. al, 2002, p. 10)
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 Stigma
 A “process of devaluation”
 Instrumental / Symbolic
 Felt / Enacted
 Often stems from underlying associations with sex and drug use
 Discrimination
 Unfair and unjust treatment of an individual based on real or perceived status
Adapted from UNAIDS Fact Sheet (12/03) as cited in Ogden, J, & Nyblade, L. (2005). Common at its core:HIV‐related stigma across contexts (accessed from http://www.icrw.org/docs/2005_report_stigma_synthesis.pdf)
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 Distinguishing and labeling “outgroups”
 Associating outgroups with negative stereotypes
 Separating “us” from “them”
 Passively and actively reducing status of outgroups, through:
 Thoughts (Prejudicial attitudes)
 Words & Deeds (Discriminatory behavior)
(Source: Link & Phelan, 2001)
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 Only those who:
 Are socially positioned as “deserving”
 Live in societies sufficiently developed & structured to:
 Educate re: HIV
 Acquire necessary RX’s
 Distribute fairly, efficiently, & consistently to those in greatest need
 Monitor consistently for adherence & resistance
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 Societies look for reasons to justify
 Decisions re: limited entitlement & distribution
 Marginalization of the undeserving (“them”)
 Results?
 Appearance of reduced demand for goods & services
 prevention, testing, treatment & care
 Institutionalized stigma
 Crippling most efforts to address an epidemic
 Potential “lifeboat” phenomena
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 Fears of disclosure and resulting isolation
 Being “a burden” to family
 Avoiding rejection
 Risks of losing jobs, friends, and community
 Negotiating basic survival needs
 Food, clothing, shelter
 Illness management
 Adherence
 Hospitalizations
 ?? What do “the AIDS people” want??
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Threatened
Identity (Self)
Appraisal
(Other)
Emotion
Action
Tendencies
Instrumental
Contagious
Fear
Active avoidance
“grudging” help
Moral
Violates values
(i.e. MSM)
Disgust
Neglect or active
discrimination
Virtuous
Morally weak
(i.e. IDU)
Contempt
Neglect or active
discrimination
Could have
avoided illness
Anger
Active
discrimination
Healthy Person
Symbolic
Careful re:
danger
Adapted from Devine, P.G., Plant, E.A., & Harrison , K.. (1999) The problem of “us” and “them” and AIDS stigma, American Behavioral Scientist, 42(7), 1212‐1228. 14
 At risk persons avoid learning their status
 Increasing “unknowns” in epi data
 Continuing spread of HIV among the unaware
 Affected families cope less effectively
 Suffering personally & denying care to loved ones
 Public minimizes the significance of HIV/AIDS  “blaming the victim”
 PLHA refuse to seek or are denied medical treatment
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 Providers may separate HIV+ patients from others & treat them differently
 Governments may:
 quarantine, require mandatory testing, fail to protect housing or jobs, or reveal HIV status
 Some religious groups may cast out PLHA
 Some families may shun, scorn, or even kill family members with HIV/AIDS
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 Differential Treatment in Health Care Settings
 Excessive & unnecessary precautions
 Shuffling between providers to avoid HIV+ care
 Denial of health services
 Including Antenatal Care
 Provision of substandard treatment
 Use of separate medical tools for PLHA
 Segregating PLHA from other patients
Adapted from Ogden, J, & Nyblade, L. (2005). Common at its core: HIV‐related stigma across contexts (accessed 5/19/05 from http://www.icrw.org/docs/2005_report_stigma_synthesis.pdf)
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Action
Acceptance
Awareness
Looking Deeply
Listening Well
Rutledge & Abell (2005) Awareness, Acceptance, and Action: An Emerging Framework for
Understanding AIDS Stigmatizing Attitudes among Community Leaders in Barbados, AIDS Patient
Care and STDS, 19(3), 186-199.
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Mindfulness Encourages:

Looking Deeply

Listening Well
Enhances ability to understand
Action
Acceptance
Awareness
Looking
Deeply
Listening
Well
the roots of difficult issues
Noticing the true nature of our experience
How things really are
What we actually think or feel
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 Imagine meeting a PLHA or someone at risk for HIV
 What do you see/hear/feel?
 What are your responses?
 Fear of infection?
 Fear of association?
 Judgments or condemnation?
 Empathy or compassion?
 What are the consequences of your reactions?
 How might they affect  your willingness or ability to help?
 the way the person in need experiences you?
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Action
 Notice what the other person is communicating to you:
Acceptance
Awareness
 Through speech content, tone, emotional expression, & body language
 Mindfulness references “emptiness” as preparation for listening well
 Learning to “make space” for the true expression of another
 Releasing our personal prejudices or assumptions, and
 Encountering the other “as they actually are.”
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 Tolerance?
 Sympathy?
 Empathy?
 Interbeing: fully realizing that “we” are “they”
 Recognizing the common ground in Providers’ and PLHA’s life experiences and aspirations
 Needs, Hopes, & Dreams
When conditions are sufficient,
something will arise.
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 Noticing how our behaviors influence the service environment  Recognizing that what effects one effects everyone
 Cascading downward pressures of relative deprivation
 Cultivation of enlightened self interest
 Answering “what’s in it for me?”
 Helping associates do the same
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Action
 Someone Else’s Problem
 People “like me” don’t have to worry
Acceptance
Awareness
Looking Listening
Deeply
Well
 “Others” stigmatize; not me
 It’s “Someone Else’s Job”
 Who’s?
 Coming to terms with
 How we contribute to the problem
 How we can participate in the solution
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Action
 Recognizing the causes & Acceptance
Awareness
consequences of our experience
 What are the origins of our thoughts & feelings?
 Personal, Familial, Social, & Cultural
 Why do they arise?
 What perpetuates or diminishes them?
 How do they effect our capacity to engage
appropriately & usefully with others?
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 Continuing stigma and denial
 On many levels:
 Personal
 Political
 Economic
 Social
 Noticing how we benefit from keeping others at a “safe distance”
 On purpose
 By accident
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 Aspects of HIV that promote reacting
 Judgments about sexuality

Fear of contamination or death

Keeping a distance from “the gutter”
 Steps toward responding

Looking deeply at how things are

Refusing to practice denial

Action
Acceptance
Awareness
Looking Listening
Deeply
Well
Engaging intentionally to improve individual and community attitudes & behaviors towards PLHA
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 Considering who we are to the patient
 Providers of information, counseling, treatment & support
 Referral source for & interpreter of health care & social services
 Recognizing the difference our understanding & acceptance can make




Touching
Responding to basic needs
Respecting confidentiality
Addressing patient & family with dignity & respect
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HAPSI Proposed Scale Structure: Awareness
Subscale
Label:
Definition
Using names for PLHA when thinking or talking about them, and doing so differently when:
Associate
Transmit
Censure
Stereotype:
Gay
IDU
MSP
Outgroup
Discriminate:
Associate
Transmit
Censure
Knowing or suspecting a patient or client has HIV
Being concerned about getting HIV from a patient or client
Being concerned that others in my life will think of or treat me differently because I work with PLHA
Judging PLHA based on personal characteristics or qualities, and doing so differently when:
Knowing or suspecting a PLHA is also gay
Knowing or suspecting a PLHA is also an injection drug user
Knowing or suspecting a PLHA also has many sex partners
Reinforcing differences between ourselves and PLHA
Responding to PLHA based on their personal characteristics or qualities, and doing so differently when:
Knowing or suspecting a patient or client has HIV
Being concerned about getting HIV from a patient or client
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Being concerned that others in my life will think of or treat me differently because I work with PLHA
Subscale
Acceptance:
Definition
Fully acknowledging the potential impact, intended or not, of our thoughts about and interactions with PLHA
Label
How people may harm PLHA if they: use names for them when thinking or talking about them
Stereotype
Judge them based on personal characteristics or qualities
Outgroup
Reinforce differences between themselves and PLHA
Discriminate Respond differently to them based on their personal characteristics or qualities
Action:
Intentionally expressing constructive and compassionate behavior towards PLHA
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Sample HAPSI Awareness Content:
Prompts and Items for Label and Stereotype
Label:
Associate
Transmit
Censure
Stereotype:
Gay
IDU
MSP
If I know or suspect a patient or client has HIV, I am more likely to:
think of them in scornful terms.
think of them as a “junkie,” “whore,” or “pervert.”
If I am concerned that I might get HIV from a patient or client, I am more likely to:
think of them in language I wouldn’t want others to hear me say.
think of them as contagious to justify avoiding them.
If I am concerned that others in my life will think of or treat me differently because I work with PLHA, I am more likely to:
call them names behind their back that I wouldn’t say to their face.
think they are “low lifes.”
If I know or suspect a PLHA is also gay, I am more likely to think he or she:
is immoral.
got HIV through bad behavior.
If I know or suspect a PLHA is also an injection drug user (IDU), I am more likely to think he or she:
is a thief.
will say anything to get what he or she wants. If I know or suspect a PLHA has many sex partners, I am more likely to think he or she:
is desperate.
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is bringing trouble on himself or herself.
Outgroup:
If I know or suspect a PLHA is gay, an injection drug user, or has many sex partners, I am more likely to:
make sure others know I think their behavior is unacceptable.
keep quiet when others say hurtful or mean things about PLHA.
Discriminate:
Associate
Transmit
Censure
If I know or suspect that a patient or client has HIV, I am more likely to:
keep them waiting in the lobby.
ignore their phone calls or voice mails.
If I am concerned that I might get HIV from a patient or client, I am more likely to:
make my interactions with them as brief as possible.
let volunteers or family members provide care that I should provide.
If I am concerned that others in my life will think of or treat me differently because I work with PLHA, I am more likely to:
put them down for the way they live.
blame them for bringing problems on themselves.
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Sample HAPSI Acceptance Content: Prompts and Items
Label:
If I think of or use unpleasant names (e.g., queer, junkie, hooker, etc.) to describe my patients
or clients, I am more likely to:
•think of them as a “case” rather than as a unique human being.
•oversimplify their experiences or problems.
Stereotype:
If I let my opinions about PLHAs being injection drug users, gay, or promiscuous shape how I think or feel about them, I am more likely to:
•give up on being creative, and just try to get through the day at work.
•feel that people like them are not worth the trouble.
Outgroup
If I try to make sure others will see I am not like my PLHA patients or clients, I am more likely to:
tell degrading jokes about them.
•make sure others know I do not approve of the way PLHA live.
Discriminate:
If I treat my clients or patients differently because I think or know they have HIV, I am more likely to:
•overlook practices at work that may make PLHA feel put down or disrespected.
•rush through things rather than take the time to understand their feelings.
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Sample HAPSI Action Content: Prompts and Items If I always try to act in ways that meet PLHA’s needs rather than reacting to negative feelings I have about their behaviors, I am more likely to:
• stop negative talk about PLHA when I hear it.
• work to maximize services and referrals for each individual PLHA.
• educate my colleagues about appropriate care for PLHA.
• push my supervisor to address problems with confidentiality.
• speak publicly about my work.
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Scale
Subscale
N of items
Reliability (α)
SD SEM
42
.97*
.92
.16
12
.94*
.81
.20
Associate
4
.88
1.00
.35
Transmit
4
.84
1.08
.43
Censure
4
.85
.62
.24
19
.96*
1.23
.24
Gay
4
.87
1.32
.47
IDU
8
.93
1.43
.38
MSP
7
.92
1.49
.42
Outgroup
5
.69
1.15
.64
Discriminate:
6
.80
.79
.35
Transmit
3
.70
1.11
.61
Censure
3
.76
.74
.36
Global
Label:
Stereotype:
Scale
Acceptance
Action
Subscale
N of items
Reliability (α)
SD
SEM
20
.98*
1.43
.19
Label
4
.95
2.03
.45
Stereotype
6
.92
1.72
.49
Outgroup
4
.90
1.50
.47
Discriminate
6
.94
1.69
.42
19
.96
1.12
.23
Global
Global
Confirmatory Factor Analyses: Initial and Respecified
Scale
χ2/df
CFI
TLI
RMSEA
SRMR
Respecified*
2.42
2.24
.95
.96
.95
.96
.084
.076
.087
.072
Second‐order
2.27
.96
.96
.079
.080
2.04
.98
.98
.081
.052
Respecified**
1.70
.99
.98
.063
.047
Second‐order
1.68
.99
.99
.062
.047
Initial
5.80
.93
.92
.180
.068
Respecified**
2.67
.98
.97
.092
.046
Model
Awareness Initial
Acceptance Initial
Action
*permitting 9 error covariances, **permitting 6 error covariances, ***permitting 38 error covariances
 Replicate HAPSI validation
 Awareness Outgroup subscale warrants further investigation
 Clinical sample of medical and social service providers
 Examine AAAM principles among health care and social service providers in interactions with PLHA
 Employ multi‐modal measurement strategies
 Self‐report, biophysical (HRV), behavioral
 Refine and evaluate provider stigma interventions
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Dr. Neil Abell
[email protected]
(850) 644‐9753
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