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Hearing from People Living with HIV: Global lessons from the PLHIV Stigma Index. Laurel Sprague The Global Network of People Living with HIV, North America (GNP+NA) Wayne State University, Detroit, MI, USA. Why Ask People Living with HIV?. Human dignity Reliability
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Hearing from People Living with HIV: Global lessons from the PLHIV Stigma Index Laurel Sprague The Global Network of People Living with HIV, North America (GNP+NA) Wayne State University, Detroit, MI, USA
Why Ask People Living with HIV? • Human dignity • Reliability • Appropriate for high and low prevalence settings • Salience • Replicable • Identification of emerging trends • Empowerment
Introducing the PLHIV Stigma Index Joint initiative of: International Community of Women Living with HIV (ICW) International Planned Parenthood Federation (IPPF) Joint Programme on HIV/AIDS (UNAIDS) Global Network of People Living with HIV (GNP+) Measures PLHIV experiences with stigma, discrimination, and human rights violations Participative research based in GIPA principle and human rights
Selection of Participants • Purposive sampling • Focus • 3% of the number of people living with HIV in a country or sub-country region • Inclusion of key populations • Goal • Data that is broadly indicative of the range of experiences of PLHIV in an area
What does the index look like? Factors of stigma and discrimination the questionnaire addresses: Experience of stigma & discrimination from others Access to work, education, and heath services Internal stigma and fears Rights, laws and policies Effecting change Testing & diagnosis Disclosure & confidentiality Treatment Having children & reproductive and sexual health care Self-assessment of effects of stigma & discrimination
Social Stigma in the UK In the last 12 months: 63% have been the subject of gossip For 77% of these, this was in part or all because of HIV status 22% have been physically harassed For 54% of these, this was in part or all because of HIV status
Family Exclusion in China Excluded from family life/activities: 5% of sample Response to HIV infection was supportive or very supportive 69% of spouses/partners 62% of other adult family members 80% of children However, what percent disclosed to close family members? Only 50 to 61%
Discrimination by Health Care Workers Denial of health services because of HIV status in the last 12 months
Internalized Stigma “I avoided going to a local clinic / hospital when I needed to” (last 12 months)
Effecting Change in Kenya In the last 12 months, have you confronted, challenged or educated someone who was stigmatizing you? Are you a member of a PLHIV network? p=0.000
Human Rights Violations in the Philippines 23% reported at least 1 human right abuse in the last 12 months Of these, 17% tried to get legal redress Main reasons for not attempting redress: Intimidated or scared Insufficient financial resources No or little confidence of success
Impact of the Index • Swaziland • Development of a National Framework to Address Stigma and Discrimination in Swaziland (currently in its final stages) • Implementation of an 'expert client' program in health facilities and communities • On-going human rights monitoring program in health facilities • Fiji • Strengthened counselling services • Ensured inclusion of clauses on stigma and discrimination and confidentiality in the HIV decree of 2010 • Estonia • Scale up voluntary counselling and testing (VCT) programs that ensured confidentiality • Initiative against workplace discrimination