Transcript Stigma and the HIV Continuum of Care

Stigma and the HIV Continuum of Care
J. Dennis Fortenberry MD MS
J. Dennis Fortenberry MD MS
Indiana University School of Medicine
I have no conflicts of interest relevant to this presentation.
No medications or treatment will be discussed in this presentation.
Background
• Continuum of care as a lifespan chronic illness model
– Definition of wellness in context during chronic disease
– Trajectories of wellness / illness balance
– Transmission potential separates HIV from other chronic
conditions
• Stigma influences HIV health at multiple points over
the lifespan
– Disclosure to others
– Responsibility for transmission prevention
– Responsibility to be a “good” HIV patient
Stages of Continuum of Care in HIV testing & treatment
75%
67%
50%
24%
Gardner et al. Clin Infect Dis. 2011; 52 (6): 793-800.
Philbin et al, AIDS & Behavior, in press
Linkage to Care and Engagement in Care
overall and by site
Site
Eligible Referrals [%]
Linked to Care (%)
Engaged in Care (%)
Linked & Engaged, %
Overall
1679 [100]
1172 (69.8)
1043 (89.0)
62.1
A
65 (3.9)
34 (52.3)
26 (76.5)
40.0
B
160 (9.5)
95 (59.4)
67 (70.5)
41.9
C
70 [4.2]
51 (72.9)
47 (92.2)
67.1
D
105 (6.3)
61 (58.1)
59 (96.7)
56.2
E
147 (8.8)
95 (64.6)
84 (88.4)
57.1
F
105 (6.3)
70 (66.7)
61 (87.1)
58.1
G
103 [6.1]
63 (61.2)
61 (96.8)
59.2
H
60 (3.6)
44 (73.3)
36 (81.8)
60.0
I
90 (5.4)
60 (66.7)
55 (91.7)
61.2
J
102 [6.1]
83 (81.4)
70 (84.3)
68.6
K
169 (10.1)
126 (74.6)
118 (93.7)
69.9
L
288 (17.2)
208 (72.2)
202 (97.1)
70.1
M
124 (7.4)
102 (82.3)
90 (88.2)
72.6
N
82 (4.9)
73 (89.0)
60 (82.2)
73.2
O
9 [0.5]
7 (77.8)
7 (100.0)
77.8
Why does stigma matter in the HIV
continuum of care?
• Prevention
• Testing
• Linkage to care
• Retention in care
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Macro-level – Public Health and Health Care Infrastructure
Systems
Public Health System
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Care Delivery Networks
Prevention
Networks
Prevention
Services
Services
No Transmission
Risk
Care Milestones
Timeline
Targets
Years
Health Care System
Testing
Networks
Adult Care
Networks
Youth Care Networks
Micro-level – Providers/Clients/Clinics
LTC services
Testing services
Months to Years
Risk behaviors
Prevention behaviors
PrEP
(Vaccines)
HIV test
Transition services
Reduced
Transmission
Risk
Less Transmission Risk
Least Transmission Risk
Reduced Transmission
Risk?
Linkage to Care
LTC
Engagement in Care
EIC
Retention in Care
RIC
Adult Care
Greatest Transmission
Risk
Infection
Case management and retention services
Days
HIV test
Results
Months
Appointment
Adherence
Secondary Prevention
Adherence
Years
Undetectable Viral Load
ART
Initiation &
Adherence
Lifelong
Adult
Health Care
What is stigma?
• Internalized HIV stigma
– endorsing negative feelings and beliefs associated with HIV
and applying them to the self
• Anticipated HIV stigma
– expectations of discrimination, stereotyping, and/or
prejudice from others in the future due to one’s HIV
• Enacted HIV stigma
– experiences of discrimination, stereotyping, or prejudice
from others in the past or present due to one’s HIV
Earnshaw et al. AIDS Behav (2013)
Different stigma mechanisms have different
health outcomes
Affective
Helplessness
Acceptance
Perceived Benefits
Internalized HIV Stigma
Behavioral
Adherence to ART
Adherence to medical visits
Anticipated HIV Stigma
Physical
CD4 / Viral load
Chronic illness function
Enacted HIV Stigma
Earnshaw et al. AIDS Behav (2013)
Psychosocial model of stigma activation
Structural
relationships
Social power
Cultural power
Legal power
Public health
power
Marginalization
Stigma processes
Labeling
Enacted Stigma
Status Loss
Anticipated
Stigma
Stereotyping
Isolation
Internalized
Stigma
Stigma outcomes
Structural Discrimination
Self Discrimination
Individual Discrimination
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Macro-level – Public Health and Health Care Infrastructure
Systems
Public Health System
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Care Delivery Networks
Prevention
Networks
Prevention
Services
Services
No Transmission
Risk
Care Milestones
Timeline
Targets
Years
Health Care System
Testing
Networks
Adult Care
Networks
Youth Care Networks
Internalized
Micro-level – Providers/Clients/Clinics
Stigma
LTC services
Testing services
Months to Years
Risk behaviors
Prevention behaviors
PrEP
(Vaccines)
HIV test
Transition services
Reduced
Transmission
Risk
Less Transmission Risk
Least Transmission Risk
Reduced Transmission
Risk?
Linkage to Care
LTC
Engagement in Care
EIC
Retention in Care
RIC
Adult Care
Greatest Transmission
Risk
Infection
Case management and retention services
Days
HIV test
Results
Months
Appointment
Adherence
Secondary Prevention
Adherence
Disclosure
Years
Undetectable Viral Load
ART
Initiation &
Adherence
Lifelong
Adult
Health Care
Internalized stigma and HIV testing
• Fear of results
• Lack of perceived risk
• Reluctance to disclose
Nelson et al. J Urban Health, 2010
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Macro-level – Public Health and Health Care Infrastructure
Systems
Public Health System
Internalized
Stigma
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Care Delivery Networks
Prevention
Networks
Prevention
Services
Services
No Transmission
Risk
Care Milestones
Timeline
Targets
Years
Health Care System
Testing
Networks
Adult Care
Networks
Youth Care Networks
Micro-level – Providers/Clients/Clinics
LTC services
Testing services
Months to Years
Risk behaviors
Prevention behaviors
PrEP
(Vaccines)
HIV test
Transition services
Reduced
Transmission
Risk
Less Transmission Risk
Least Transmission Risk
Reduced Transmission
Risk?
Linkage to Care
LTC
Engagement in Care
EIC
Retention in Care
RIC
Adult Care
Greatest Transmission
Risk
Infection
Case management and retention services
Days
HIV test
Results
Months
Appointment
Adherence
Secondary Prevention
Adherence
Disclosure
Years
Undetectable Viral Load
ART
Initiation &
Adherence
Lifelong
Adult
Health Care
Institutional and Structural Discrimination in HIV
Testing
•
Social geography of test sites
– Government complex
– Site associated with HIV/STD
•
Space (physical and virtual)
– Hidden / difficult access of test site
– Difficult information access
•
Organizational behavior
– Inflexible testing schedules
– Risk assessment by phone
•
Staff behavior
– Silence or apathy about testing concerns
– Breach of confidentiality
– Judgments about risk
Meyerson et al AIDS Patient Care STDS (2014)
Institutional and Structural Discrimination, by
stage of testing experience
Institutional
Structural
First Encounter
Social Geography
Physical / Virtual Space
Organizational Behavior
Staff Behavior
Entry / Reception
Staff Behavior
Social Geography
Organizational Behavior
Staff Behavior
Staff Behavior
Staff Behavior
Testing Experiences
HIV Continuum of Care, Stigma, and Microaggressions
Translation of daily experience into stigma
• Microaggressions – verbal, behavioral or structural
expression of hostility, derogation or negative attitudes
– Microassaults – explicit derogation through name calling,
avoidance, or overt discrimination
– Microinsults – brief and apparently inconsequential
demeaning of identity or behavior
– Microinvalidations – unintentional exclusions, negations, or
nullification based on identity or behavior
Nadal (2013) That’s So Gay: Microaggressions and the
Lesbian, Gay, Bisexual, and Transgender Community
7 ways microagressions affect stigma in the HIV
care continuum
• Assumption that sexual identity explains HIV
testing, treatment and prevention behaviors
• Avoidance of issues related to sexual identity
• Over-identification with sexual minority clients
• Interactions based on stereotyped assumptions
• Expressions of heteronormative bias
• Assumption of need for counseling
• Assumption of risk innate to sexual identity
Nadal (2013) That’s So Gay: Microaggressions and the
Lesbian, Gay, Bisexual, and Transgender Community
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Macro-level – Public Health and Health Care Infrastructure
Systems
Public Health System
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Care Delivery Networks
Prevention
Networks
Prevention
Services
Services
No Transmission
Risk
Care Milestones
Timeline
Targets
Years
Health Care System
Testing
Networks
Internalized
Micro-level – Providers/Clients/Clinics
Stigma
LTC services
Testing services
Months to Years
Risk behaviors
Prevention behaviors
PrEP
(Vaccines)
HIV test
Case management and retention services
Transition services
Reduced
Transmission
Risk
Less Transmission Risk
Least Transmission Risk
Reduced Transmission
Risk?
Linkage to Care
LTC
Engagement in Care
EIC
Retention in Care
RIC
Adult Care
Greatest Transmission
Risk
Infection
Adult Care
Networks
Youth Care Networks
Days
HIV test
Results
Months
Appointment
Adherence
Secondary Prevention
Adherence
Disclosure
Years
Undetectable Viral Load
ART
Initiation &
Adherence
Lifelong
Adult
Health Care
HIV Linkage to Care
Stigma management and complex practice
Linkage Providers
Community
Membership
Linkage Systems
Formal Relationships
of Testing and LTC
Providers
Developmental &
Cultural Competence
Information Systems
Tracking
Linkage Practices
Integration of
Diagnosis and LTC
Crisis Management
Suicidality
Social Support
Housing
Patient Orientation
Transition
Continuity
Case Management
Stigma Management
Barriers
Education
Communication with
other professionals
Written & verbal
Partner Notification
Services
Motivation
Readiness for Care
Fortenberry et al., J Adolesc Health 2012
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Macro-level – Public Health and Health Care Infrastructure
Systems
Public Health System
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Care Delivery Networks
Prevention
Networks
Prevention
Services
Services
No Transmission
Risk
Care Milestones
Timeline
Targets
Years
Health Care System
Testing
Networks
Internalized
Micro-level – Providers/Clients/Clinics
Stigma
LTC services
Case management and retention services
Testing services
Months to Years
Risk behaviors
Prevention behaviors
PrEP
(Vaccines)
HIV test
Transition services
Reduced
Transmission
Risk
Less Transmission Risk
Least Transmission Risk
Reduced Transmission
Risk?
Linkage to Care
LTC
Engagement in Care
EIC
Retention in Care
RIC
Adult Care
Greatest Transmission
Risk
Infection
Adult Care
Networks
Youth Care Networks
Days
HIV test
Results
Months
Appointment
Adherence
Secondary Prevention
Adherence
Disclosure
Years
Undetectable Viral Load
ART
Initiation &
Adherence
Lifelong
Adult
Health Care
Changes in internalized stigma as a function of
ART
Tsai et al. AIDS Behav (2013)
Mixed effects model for Clinic/Provider
Predictors of Engagement in Care
Estimate
Odds Ratio (95% CI)
Ref
-
Data Sharing / No direct patient contact
-2.64 (0.002)
0.07 (0.05, 0.09)
No data sharing / Direct patient contact
-0.78 (0.12)
0.46 (0.36, 0.58)
Higher
Ref
-
Lower
-0.9 (0.15)
0.41 (0.30, 0.55)
Data Sharing / Outreach worker function
Data Sharing / Direct patient contact
Outreach worker effectiveness
Philben et al. AIDS Care (in press)
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Macro-level – Public Health and Health Care Infrastructure
Systems
Public Health System
Internalized
Stigma
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Care Delivery Networks
Prevention
Networks
Prevention
Services
Services
No Transmission
Risk
Care Milestones
Timeline
Targets
Years
Health Care System
Testing
Networks
Adult Care
Networks
Youth Care Networks
Micro-level – Providers/Clients/Clinics
LTC services
Testing services
Months to Years
Risk behaviors
Prevention behaviors
PrEP
(Vaccines)
HIV test
Transition services
Reduced
Transmission
Risk
Less Transmission Risk
Least Transmission Risk
Reduced Transmission
Risk?
Linkage to Care
LTC
Engagement in Care
EIC
Retention in Care
RIC
Adult Care
Greatest Transmission
Risk
Infection
Case management and retention services
Days
HIV test
Results
Months
Appointment
Adherence
Secondary Prevention
Adherence
Disclosure
Years
Undetectable Viral Load
ART
Initiation &
Adherence
Lifelong
Adult
Health Care
Community Mobilization and Structural Change
Intervention
Core Risk Factors
Intermediate Outcomes
Ultimate Outcomes
Structural Changes
Mental health services
Substance use
treatment
Integrated HIV/STI SVC
Youth-appropriate
social venues
Youth-friendly
prevention
Reduced
HIV
Incidence
LTC Structural
Changes
Simplified eligibility
Patient navigator
Integrated treatment
services
Structural stigma
Improved
LTC, EIC
and RIC
Community Coalitions
- Coalition with common vision/mission
- Focus on population and geographic area at risk
- Root cause analysis and strategic planning
- Engagement of diverse community members
- Documentation and tracking progress
- Technical assistance and capacity building
- Maintaining coalition health and function
Community
Mobilization
Intervention
LTC
Committee
&
engagement
of LHD
HIV Acquisition – risk networks
Number of sex partners
High-risk vs low-risk partners
Partner concurrency
Internalized Stigma
HIV Transmission – Linkage to care
Stigma
Disclosure
Eligibility
Access
LTC Focus
- Subcommittee focused on barriers to LTC/EIC/RIC
- LHD strategically engaged in focus on youth LTC
- Toolkit and training materials
Willard et al. J Prevention Intervention in the Community, 2012
Care
Milestone
Structural
Material
Level
Resources
Micro
Costs of
HIV Test
testing
Completion
Meso
Costs of
(TC)
testing
Macro
HIV testing
financing
Micro
Short TC/TRR
HIV Test
interval
Results
Meso
Co-location of
Receipt (TRR)
TRR/LTC
Macro
Linkage to
Care (LTC)
Micro
Meso
Macro
Engagement
in Care (EIC)
Micro
Meso
Macro
Retention in
Care (RIC)
Micro
Technology
PrEP
Opt-out
testing
Home testing
systems
Alternative
results delivery
Information
technology
Information
systems
Housing
Information
sharing
Rapid approval Policy for rapid
for services
test
confirmation
Eligibility
Early ART
criteria
Housing
Adherence
security
support
Social Marketing
Transportation Distance
medicine
Eligibility
criteria
Effective
treatments
Disenrollment or
loss of benefits
Meso
Macro
Micro
Transition
from Youth
Meso
to Adult Care
Macro
Informal Social
Influence
Partner support
Formal Social
Control
Partner
Notification
Mandated
testing
Settings
Hours of operation
Health fairs
Standards for testing
facilities
Friend/family
involvement
Disclosure to
others
Stigma
Stigma
Mandated
reporting
Standards for
HIV testing
Crisis
management
Public Health
Authority
Standards for
ART initiation
Disclosure to
others
Adherence
support
Disenrollment or
Loss of benefits
Eligibility
criteria
Disclosure to
others
Integration of
LTC/testing
Patient navigators
Location of services
Networks of
testing/ care
services
Housing
Mental health
services
Maintenance of
social support
Youth-friendly
services
Social support
groups
Relationships w/
providers/staff
Schooling
Employment
Interference in
activities
Reproductive health
services
Transition service
Transition - skilled
providers
Standards for
transition care
Antidiscrimination
Policies/laws
Treatment of
side-effects
Transfer of
information
Continuity of
benefits
Social
Connectedness
Social support for
testing
Community
testing coalitions
Disclosure to
others
Adherence
support
Confidentiality
Partner health
care benefits
Stigma and the HIV Continuum of Care
Summary
• Multiple effects of stigma across the HIV
continuum of care
• Likely ongoing effects through the life span
• Evidence of efficacy at multiple intervention
levels
• Nobody said this was going to be easy