Principals, Approaches and Tools

for Stigma-Reduction in

Health Facilities

Laura Nyblade, PhDSenior Technical Advisor, Stigma &

DiscriminationHealth Policy Project and RTI

BackgroundWhyDefinitions & ConceptualizationForms & consequences

Overview of general stigma-reduction program strategies

Examples of how they have been applied in health care settings

Tools & Resources

Presentation “Guide”

“…. If we do not appreciate the natureand impact of stigma,

none of our interventions can begin

to be successful.”– Edward Cameron,

Constitutional Court Justice in South Africa

Powerful social process that:Turns “difference” into inequity & disadvantage

Maintains/upholds inequitable structuresLeads to social & economic exclusion Fuels and can be used to justify violations of human rights, discriminatory policies & laws

Intensifies & sustains vulnerabilityImpedes access to health & other services

Why?

Stigma impedes programmatic efforts

Prevention Testing Disclosure Risk Recognition Treatment

Treatment Access Timely uptake Adherence Delivery/Quality of Care Human Capital

Health care providers receiving care

Secondary S&D

Forms-Impact on People’s Lives

Physical and social isolationLoss of relationshipsGossip & Verbal AbuseLoss of livelihoodLoss of housingRejection by peersLoss of reputationViolenceDenial or sub-standard health careInternalized stigma

Forms-Health ProvidersStigma Indicators Working Group, Tanzania, 2005

Neglect Had to wait longer Not having bed pans

changed Receiving less care/attention

Denied care Denied treatment Referral to another

provider/faci l i ty Senior provider pushed cl ient to a

junior provider Junior provider pushed cl ient to a

senior providerDifferential treatment HIV test required before

care was given HIV test required before

scheduling surgery Using gloves for non-

invasive exams Extra precautions in

steri l izing instruments

Lack of consent HIV testing without consent Disclosing HIV status to

family without cl ient’s consent

Verbal stigma • Gossip about a client’s HIV

status• Scolding or blaming a client

“…I overheard two nurses talking about me…. that I am HIV positive. After having the baby, they put me in a separate room, no one came to look after me. …When I went home, family members refused to let me stay there. I had to rent my own room and stay alone with my baby and no one from the family came to see me. ….As soon as our customers learned that we are HIV positive, they stopped coming and our business collapsed.”

Shared in an ISDS/ICRW stigma-reduction workshop, 2002

Definitions and Conceptualization

“An attribute that is deeply discrediting [and that reduces the bearer] …from a whole and usual person to a tainted, discounted one.”

By regarding “others” negatively, an individual or group confirms their own “normalcy” and legitimizes their devaluation of the “other.”

“Disqualification from full social acceptance”

Stigma-Goffman, 1963

Social Process (Link & Phelan, 2001)

Distinguish & label differencesAssociate negative attributes to perceived differences

Separation of ‘us’ from ‘them’Status loss & discrimination

Unfair and unjust treatment of an individual based on the basis of the:real or perceived status or attribute (e.g. medical condition)

belonging, or being perceived to belong, to a particular group (UNAIDS)

Discrimination

Adapted from Sartorius, N., 2006.

Cycle of Stigmatization

Discrimination

Marker

Greater susceptibility and vulnerability to HIV & AIDS

Stigma

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What works to reduce HIV Stigma and Discrimination

Put stigmatized groups at the core

Target a range of groups; Create alliances & form new partnerships for influence and expanded reach Foster interaction between groups experiencing stigma

& those perpetrating it. “Contact strategies”

Model desirable behavior, hold up & reward role models

Employ a combination of approaches, while targeting a range of groups

Address immediately actionable drivers

Successful programs

Foster understanding and motivation for stigma reduction by creating:–Recognition of stigma –The benefits of reducing it–Safe space to reflect and gain skills for change

Create Understanding: Close the Intention-Action Gap

Address HIV Transmission Fears & MisconceptionsHow it is and is not transmittedIn-depth informationInteractively: Allow for • “Yes I know that, but why…?”

Listen, learn & respond to specific fears related to daily living & work context

Discuss and Challenge the ‘Taboo’ Provide safe spaces to discuss,

reflect, understand and question:– The values and beliefs that underlie

stigma and discrimination Where they come from What they do

– Address the multiple intersecting & associated stigmas of HIV

– Sex workers, men who have sex with men, drug users

Individual

• Address attitudes and behaviors

Immediately Actionable Causes• Lack of awareness

• Fear of casual contact• Linking HIV with socially “improper” behavior

Environmental

• Meet needs for information,training, and supplies

Structural

• Policies, laws, andinstitutions

Stigma & Discrimination-

Reduction program in Health Services

Some examples

Building institutional Support for change in Vietnam (Horizons/ISDS/ICRW)

Relationship building with hospital authoritiesConducted & shared Baseline Research ResultsTrained all cadres on:

Fear Driven Stigma: HIV transmission and universal precautions

Socially Driven Stigma (“blame & “shame”)Tools Development: Checklist, toolkitParticipatory development of hospital policiesImprovements in structural environment

E.g. hand-washing facilities, sharps containers

Training

4 half-days½ day basic HIV knowledge1 day on Universal Precautions½ day on social stigma co-facilitated by PLHIVNaming stigma through picturesWhat is the meaning of stigmaNaming stigma in hospitals

Forms, Causes, ConsequencesHow it feels to be stigmatized

Each trained group developed their own policy & presented it in plenary to hospital

Steering committee took all comments & combined for final hospital policyAccess to services by PLHIVHIV counseling and testingConfidentialityUniversal PrecautionsTraining on HIV and AIDSDissemination of policy

Posters of policy posted throughout hospitals

Joint development of “Safe and Friendly” hospital policies

Hospitals showed improvements

Significant declines in the labeling of patients’ files and beds with their HIV status.

Better hospital-wide implementation of universal precautions.

Significantly improved mean scores on fear-based and value-based stigma indices among HWs.

Building institutional Support for change

Partnering with hospitals as partners not critics

Participatory approaches; evidence of need/problem

Involving all categories of hospital staff

Inclusion of people living with HIV as co-facilitators

Development of practical tools

Creating partnerships &

reducing distance between health

care providers and stigmatized clients

Reducing Stigma & Discrimination Towards Sex Workers

Ashodaya-Samithi, Mysore, India

• Trained Peer Patient advocates placed in Public Hospitals

• Sex workers found easier to access services

• Opportunity for increased contact and understanding

Swathi Mahila Sangha & partners, Bangalore, India

• Ensuring Dignity and Rights among Sex Workers in Bangalore

• Rose Campaign– Hold up & ‘reward’

positive behavior– Opened space for

dialogue

Resources

General Tools• Challenging & Addressing

Stigma towards– People living with HIV– Men who have sex with men– Sex workers– Drug users

• Guidance Documents

Health Care Specific

• Safe & Friendly Health Facility Trainers Guide (ISDS/ICRW/Horizons tools, Vietnam)

• Reducing Stigma and Discrimination Related to HIV and AIDS: Training for Health Care Workers (Engender Health)

• Reducing HIV Stigma & Gender Based Violence: Toolkit for Health Care Providers in India (ICRW/BPWT/Levi Strauss Foundation)

• Global Stigma-Reduction toolkit for health care settings (Draft)

Stigma Action Network‘Working for a World Free of

HIV-related Stigma’

www.stigmaactionnetwork.org

SAN Mission & Goals

‘To reduce HIV-related stigma and discrimination through a dynamic network that will catalyze action and commitment locally, regionally and globally through knowledge sharing, dialogue and partnerships’

1. Bring together diverse stakeholders to share experiences, best practices, knowledge, tools, and research around HIV-related stigma and discrimination.

2. Facilitate innovative solutions and expand the reach of best and promising practices to reduce HIV-related stigma and discrimination.

3. Promote research across disciplines to expand the evidence base for HIV-related stigma and discrimination reduction efforts

How can you participate?

• Join the network:– Go to www.stigmaactionnetwork.org– Click on the ‘Join Us’ link in the top right-hand corner

and register– Log-in to the site and create your member profile and

organization profile• Share materials & resources for posting on web site

– Upload documents, weblinks and events via the CONTRIBUTE box

– Post to the SAN blog – Participate in the discussion forum

• Participate in our upcoming e-survey– Share your ideas about how best to expand the website– Forthcoming in August, 2011

Hue Now• Public & media

figure- a national inspiration– Time magazine

Asia hero, 2004• Hoa Phuong(Flamboyant Flower)

“Being involved in various activities of ISDS I felt great relief… I no longer wanted to hide my positive status. The disclosure helped me to overcome self-stigma and it was a magic medicine that made me confident and strong.”

Time Asia

www.healthpolicyproject.com

Thank You!

The Health Policy Project is a five-year cooperative agreement funded by the U.S. Agency for International Development (USAID) under Cooperative Agreement No. AID-OAA-A-10-00067, beginning September 30, 2010. It is implemented by Futures Group, the Centre for Development and Population Activities (CEDPA), Futures Institute, Partners in Population and Development Africa Regional Office (PPD ARO), Population Reference Bureau (PRB), Research Triangle Institute (RTI) International, and the White Ribbon Alliance for Safe Motherhood (WRA)