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Stigma and Discrimination. An Overview of these key structural barriers to the global HIV response. Growing Global Consensus.
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Stigma and Discrimination An Overview of these key structural barriers to the global HIV response
Growing Global Consensus “Everyone in the AIDS response is looking for the game changer that will radically improve our impact. Most of the focus has been on biomedical breakthroughs, like a vaccine, a cure, an effective microbicide, using treatment as prevention. We do need all of these. But the true game changer is reducing stigma.” - Paul DeLay, Deputy Executive Director of UNAIDS, at South Asia Regional Knowledge Forum: Reducing Barriers to Effective HIV Prevention, New Delhi, India, 16 March 2010
What is Stigma? • “An attribute that is deeply discrediting [and that reduces the bearer] …from a whole and usual person to a tainted, discounted one.” • “Disqualification from full social acceptance” • “By definition, of course, we believe the person with a stigma is not quite human. On this assumption, we exercise varieties of discrimination, through which we effectively, if often unthinkingly, reduce his life chances” (Goffman, 1963)
Dynamic Social Process with 4 Steps • Harmful phenomenon experienced by vulnerable groups • Distinguish & label differences • Associate negative attributes to perceived differences • Separation of ‘us’ from ‘them’ • Status loss & discrimination • (Link and Phelan 2001) • Enabled by underlying social, political and economic powers • Elements may vary by degree
Societal Phenomenon • Broader context (social, cultural, political & economic forces) • Form of social control • Turns “difference” into inequity (gender, age, sexual orientation, class, race or ethnicity) • Devaluation to create superiority • Social exclusion of individuals or groups • (Parker & Aggelton 2002)
Discrimination • Unfair and unjust treatment of an individual based on the: • real or perceived status or attribute (e.g. medical condition) • belonging, or being perceived to belong, to a particular group (UNAIDS)
Differentially experienced by men and women Violence, abandonment & property loss Social Networks *Information from ICRW/USAID’s Working Report Measuring HIV Stigma: Results of a Field Test in Tanzania (2005)
Stigma & Medical Conditions • Disease stigma is greatest when: • Not well understood • Perceived as contagious (physical, social) and a threat • Associated with perceived ‘deviant’ behavior • Viewed as the responsibility of the individual • Condition is severe, degenerative, or disfiguring • Undesirable and unaesthetic death ( Alonzo and Reynolds, 1995; Cogan and Herek 1998; De Bruyn 1999)
Terminology of Stigma • Enacted stigma (discrimination) • Felt (perceived) stigma • Internalized (self) stigma • Secondary stigma • Layered (intersecting) stigma
Forms of Stigma • Physical and social isolation • Gossip & Verbal Abuse • Loss of livelihood • Loss of housing • Denial or sub-standard health care • Rejection by peers • Loss of reputation • Violence
Consequences • Testing • Disclosure • Prevention • Risk Recognition • Care and support • Health Care • Access: Treatment Seeking & Adherence • Delivery/Quality of Care • Human capacity/staff
Why HIV Stigma & Discrimination? • Fueling spread of HIV • Barrier to effective HIV prevention, care, treatment, mitigation programs • 26% to 53% of vertical transmissions may be attributed to stigma (Nyblade, L., C. Watts et al. 2010) • Reduces quality of life and life chances • Causes pain and suffering • Gap between stated need for stigma-reduction and action & resources
If you invest in stigma reduction… …the ripple effect will impact all HIV and AIDS programs and services, reaching more people in a single community Coverage across community served Stigma reduction intervention • Provision of health care • Palliative care • Family support • Community support • PMTCT • VCT • Disclosure • Risk Behaviors • Timely uptake • Adherence Prevention Treatment Care & Support