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

Transcription

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

2 When conditions are sufficient, something will arise. 2

3 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 3

4 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 4

5 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) 5

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7 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 7

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9 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) 9

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11 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 11

12 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 12

13 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?? 13

14 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),

15 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 15

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17 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 17

18 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 18

19 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),

20 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 20

21 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? 21

22 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. 22

23 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. 23

24 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 24

25 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 25

26 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? 26

27 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 27

28 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 28

29 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 29

30 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 30 Being concerned that others in my life will think of or treat me differently because I work with PLHA

31 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 31

32 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. 32 is bringing trouble on himself or herself.

33 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. 33

34 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. 34

35 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. 35

36 Scale Subscale SD SEM.97* * Associate Transmit Censure * Gay IDU MSP Outgroup Discriminate: Transmit Censure Global Label: Stereotype: N of items Reliability (α) 42

37 Scale Acceptance Action Subscale Global Global N of items Reliability (α) SD SEM 20.98* Label Stereotype Outgroup Discriminate

38 Confirmatory Factor Analyses: Initial and Respecified Scale χ2/df CFI TLI RMSEA SRMR Respecified* Second order Respecified** Second order Initial Respecified** Model Awareness Initial Acceptance Initial Action *permitting 9 error covariances, **permitting 6 error covariances, ***permitting 38 error covariances

39 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 39

40 Dr. Neil Abell (850)