Principals, Approaches and Tools for Stigma-Reduction in Health Facilities Laura Nyblade, PhD Senior Technical Advisor, Stigma & Discrimination Health Policy Project and RTI

 Background  Why  Definitions & Conceptualization  Forms & 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 nature and 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 structures  Leads to social & economic exclusion  Fuels and can be used to justify violations of human rights, discriminatory policies & laws  Intensifies & sustains vulnerability  Impedes 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 isolation  Loss of relationships  Gossip & Verbal Abuse  Loss of livelihood  Loss of housing  Rejection by peers  Loss of reputation  Violence  Denial or sub-standard health care  Internalized stigma

Forms-Health Providers Stigma 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/facility  Senior provider pushed client to a junior provider  Junior provider pushed client to a senior provider Differential treatment  HIV test required before care was given  HIV test required before scheduling surgery  Using gloves for non- invasive exams  Extra precautions in sterilizing instruments Lack of consent  HIV testing without consent  Disclosing HIV status to family without client’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 differences  Associate 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., Cycle of Stigmatization Discrimination Marker Greater susceptibility and vulnerability to HIV & AIDS Stigma Loading

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 & Misconceptions  How it is and is not transmitted  In-depth information  Interactively: 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, and institutions

Stigma & Discrimination- Reduction program in Health Services Some examples

Building institutional Support for change in Vietnam (Horizons/ISDS/ICRW)  Relationship building with hospital authorities  Conducted & shared Baseline Research Results  Trained all cadres on:  Fear Driven Stigma: HIV transmission and universal precautions  Socially Driven Stigma (“blame & “shame”)  Tools Development: Checklist, toolkit  Participatory development of hospital policies  Improvements in structural environment  E.g. hand-washing facilities, sharps containers

Training  4 half-days  ½ day basic HIV knowledge  1 day on Universal Precautions  ½ day on social stigma co-facilitated by PLHIV  Naming stigma through pictures  What is the meaning of stigma  Naming stigma in hospitals  Forms, Causes, Consequences  How 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 policy  Access to services by PLHIV  HIV counseling and testing  Confidentiality  Universal Precautions  Training on HIV and AIDS  Dissemination 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’

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 –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

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 , beginning September 30, 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)