stigma and the hiv continuum of care j. dennis fortenberry md ms

Stigma and the HIV Continuum of Care

J. Dennis Fortenberry MD MS

J. Dennis Fortenberry MD MSIndiana 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

24%

Gardner et al. Clin Infect Dis. 2011; 52 (6): 793-800.

75%

50%

67%

Linkage to Care and Engagement in Careoverall and by site

Site Eligible Referrals [%] Linked to Care (%) Engaged in Care (%) Linked & Engaged, %

Overall 1679 [100] 1172 (69.8) 1043 (89.0) 62.1A 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

Philbin et al, AIDS & Behavior, in press

Why does stigma matter in the HIV continuum of care?

• Prevention

• Testing

• Linkage to care

• Retention in care

No Transmission Risk

Infection

Risk behaviorsPrevention behaviorsPrEP(Vaccines)

HIV test Results

Reduced Trans-

mission Risk

Less Transmission Risk Least Transmission Risk

Linkage to CareLTC

PreventionServices Testing services

Engagement in CareEIC

Retention in CareRIC

Reduced Transmission Risk?

Adult Care

LTC services Case management and retention services Transition services

Greatest Transmission Risk

AppointmentAdherence

ARTInitiation &Adherence

Secondary PreventionAdherence

AdultHealth Care

Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment

Prevention Networks

Testing Networks Youth Care Networks Adult Care

Networks

Years Months to Years Days Months Years Lifelong

Care Milestones

Timeline

Targets

Services

Public Health System Health Care System

Systems

Care Delivery Networks

Macro-level – Public Health and Health Care Infrastructure

Meso-level – Testing, Referral, Treatment and Community Mobilization Networks

Micro-level – Providers/Clients/Clinics

HIV test Undetectable Viral Load

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

Internalized HIV Stigma

Anticipated HIV Stigma

Enacted HIV Stigma

AffectiveHelplessnessAcceptancePerceived Benefits

BehavioralAdherence to ARTAdherence to medical visits

PhysicalCD4 / Viral loadChronic illness function

Earnshaw et al. AIDS Behav (2013)

Psychosocial model of stigma activation

Labeling

Status Loss

Stereotyping

Isolation

Enacted Stigma

Anticipated Stigma

Internalized Stigma

Structural Discrimination

Self Discrimination

Individual Discrimination

Social power

Cultural power

Legal power

Public health power

Structural relationships Marginalization Stigma processes Stigma outcomes


Infection


HIV test Results

Reduced Trans-

mission Risk


Linkage to CareLTC





Adult Care





Secondary PreventionAdherenceDisclosure

AdultHealth Care


Prevention Networks


Networks


Care Milestones

Timeline

Targets

Services


Systems






Internalized Stigma

Internalized stigma and HIV testing

• Fear of results

• Lack of perceived risk

• Reluctance to disclose

Nelson et al. J Urban Health, 2010


Infection


HIV test Results

Reduced Trans-

mission Risk


Linkage to CareLTC





Adult Care






AdultHealth Care


Prevention Networks


Networks


Care Milestones

Timeline

Targets

Services


Systems






Internalized Stigma

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 EncounterSocial GeographyPhysical / Virtual SpaceOrganizational BehaviorStaff Behavior

Entry / Reception

Staff Behavior

Social GeographyOrganizational BehaviorStaff Behavior

Testing ExperiencesStaff Behavior Staff Behavior

HIV Continuum of Care, Stigma, and MicroaggressionsTranslation 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


Infection


HIV test Results

Reduced Trans-

mission Risk


Linkage to CareLTC





Adult Care






AdultHealth Care


Prevention Networks


Networks


Care Milestones

Timeline

Targets

Services


Systems






Internalized Stigma

HIV Linkage to CareStigma management and complex practice

Community Membership

Formal Relationships of Testing and LTC

Providers

Integration of Diagnosis and LTC

Crisis Management

Suicidality

Social Support

Housing

Patient Orientation

Stigma Management

EducationWritten & verbal

Motivation

Readiness for Care

Case Management

Barriers

Communication with other professionals

Partner NotificationServices

Developmental & Cultural

CompetenceInformation Systems

TrackingTransitionContinuity

Linkage Practices

Linkage SystemsLinkage Providers

Fortenberry et al., J Adolesc Health 2012


Infection


HIV test Results

Reduced Trans-

mission Risk


Linkage to CareLTC





Adult Care






AdultHealth Care


Prevention Networks


Networks


Care Milestones

Timeline

Targets

Services


Systems






Internalized Stigma

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)

Data Sharing / Outreach worker function

Data Sharing / Direct patient contact

Data Sharing / No direct patient contact

No data sharing / Direct patient contact

Ref

-2.64 (0.002)

-0.78 (0.12)

-

0.07 (0.05, 0.09)

0.46 (0.36, 0.58)

Outreach worker effectiveness

Higher

Lower

Ref

-0.9 (0.15)

-

0.41 (0.30, 0.55)

Philben et al. AIDS Care (in press)


Infection


HIV test Results

Reduced Trans-

mission Risk


Linkage to CareLTC





Adult Care






AdultHealth Care


Prevention Networks


Networks


Care Milestones

Timeline

Targets

Services


Systems






Internalized Stigma

Community Mobilization and Structural Change

- 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

- Subcommittee focused on barriers to LTC/EIC/RIC- LHD strategically engaged in focus on youth LTC- Toolkit and training materials

Community Mobilization Intervention

LTC Committee

& engagement

of LHD

Structural ChangesMental health services

Substance use treatment

Integrated HIV/STI SVCYouth-appropriate

social venuesYouth-friendly

prevention

LTC Structural ChangesSimplified eligibility

Patient navigator Integrated treatment

servicesStructural stigma

Improved LTC, EIC and RIC

Reduced HIV

Incidence

Intermediate Outcomes Ultimate OutcomesIntervention Core Risk Factors

HIV Acquisition – risk networksNumber of sex partners

High-risk vs low-risk partnersPartner concurrencyInternalized Stigma

HIV Transmission – Linkage to care Stigma

DisclosureEligibility

Access

Community Coalitions

LTC Focus

Willard et al. J Prevention Intervention in the Community, 2012

Care Milestone

StructuralLevel

Material Resources

Technology Informal Social Influence

Formal Social Control

Social Connectedness

Settings

HIV Test Completion (TC)

Micro Costs of testing

PrEP Partner support Partner Notification

Social support for testing

Hours of operation

Meso Costs of testing

Opt-out testing

Social Marketing Mandated testing

Community testing coalitions

Health fairs

Macro HIV testing financing

Home testing systems

Standards for testing facilities

HIV Test Results Receipt (TRR)

Micro Short TC/TRR interval

Alternative results delivery

Friend/family involvement

Disclosure to others

Meso Co-location of TRR/LTC

Information technology

Mandated reporting

Integration of LTC/testing

Macro Information systems

Standards for HIV testing

Linkage to Care (LTC)

Micro Housing

Information sharing


Crisis management

Patient navigators Location of services

Meso Rapid approval for services

Policy for rapid test confirmation

Stigma Public Health Authority

Networks of testing/ care services

Mental health services

Macro Eligibility criteria

Early ART Stigma Standards for ART initiation

Housing

Engagement in Care (EIC)

Micro Housing security

Adherence support


Maintenance of social support

Youth-friendly services

Meso Transportation Distance medicine

Disenrollment or loss of benefits

Adherence support

Social support groups


Retention in Care (RIC)

Micro Effective treatments

Relationships w/ providers/staff

Interference in activities

Meso Disenrollment or Loss of benefits

SchoolingEmployment

Reproductive health services


Anti-discriminationPolicies/laws

Transition from Youth to Adult Care

Micro Treatment of side-effects

Meso Transfer of information

Adherence support

Transition service Transition - skilled providers

Macro Continuity of benefits


Confidentiality Partner health care benefits

Standards for transition care

Stigma and the HIV Continuum of CareSummary

• 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

stigma and the hiv continuum of care j. dennis fortenberry md ms

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