AVVAIS, RBC/IHDPC, RRP +, UNAIDS

1. HIV Stigma Index 2009Rwanda AVVAIS, RBC/IHDPC, RRP +, UNAIDS SAHARA CONFERENCE Port-Elisabeth, South Africa November 28 to December 2, 2011

2. Presentation Outline • Introduction: Why focusing on stigma and Discrimination? • Objectives of the study • Methods • Key findings

3. Introduction: Why focusing on stigma & discrimination? • Stigma & discrimination are a health and human rights issue • Stigma & Discrimination constitute a barrier to AIDS response • Limit universal access to: • Prevention services, counseling & testing • Treatment (seek services outside own community out of fear) • Care and support (postponing or rejecting care)

4. Why focusing on S & D (cont’d…) • Stigma & Discrimination affect more women and girls, MARPs in general and vulnerable people e.g. sex workers, widows, prisoners and TB patients

5. Situation of stigma & discrimination issues in Rwanda • The Government of Rwanda has classified PLHA as a priority group for prevention, care, treatment, and support (NSP, 2009-2012). • 46% males & 51% females had accepting attitudes towards stigma & discrimination (DHS, 2005)

6. Objectives of the study To collect info on Stigma & Discrimination (S&D) against members of the Network of PLHA that will help to understand & reduce S&D in the country. Specifically: • To document the various experiences of PLHA • To provide an evidence base for advocacy, policy change and programme interventions to address S&D related to HIV.

7. Methods • Used Stigma Index questionnaire (quantitative & Qualitative) Selection Criteria: • Members of PLHA Network aged 18 years & older, • Association with at least 50 members and with 2+ years old; member of the Network • Sample size: • There were about 1,500 associations of PLHA with +/-1000 members of the Rwanda Network of PLHA • 38 Associations in total were surveyed • Random selection of 2 districts per Province

8. Methods (Cont’d…) • Estimated sample size: 1640 individuals • Purposively included all HIV+ males into sample since women formed 90% of members • Interviewed up to 1560 PLHIV individuals located in 10 districts across Rwanda • Self-reporting was the most applied approach during interviews

9. Ethics • Study approved by RBC/IHDPC & NISR Ethics Committees • Used information sheet and informed consent forms in Kinyarwanda before starting an interview • Emphasized respondent rights to freely participate in and withdraw from study • Protected identify of respondents • Interviewed participants of 18 years and older

10. Key findings outline • Demographic characteristics of PLHA • Experience of HIV-related stigma and discrimination (12 months preceding the survey) • Experience of Testing, Disclosure, Treatment and having children (12 months preceding the survey)

11. Current relationship status

12. Duration of living with HIV • Sixty-four (64%) reported to have lived with HIV within five years preceding the survey.

13. Perceived experience with HIV related stigma and discrimination • HIV was perceived as the main reason (69%) for discrimination in terms of exclusion from family activities, being gossiped about and physical harassment • Of those who experienced exclusion, 65% respondents reported exclusion from religious and family activities; • 72% of females and 70% males respectively reported exclusion from family activities and being gossiped about

14. Access to social services during 12 months preceding the study • 39% thought they lost jobs because of their HIV+ status • 66% felt obliged to stop working due to poor health

15. Internal stigma and fears • Women: Anticipation of fear of being gossiped, verbally insulted, harassed and/or threatened was higher (44%) for females than males (38%), • Men: More men (47%) than females (41%) feared that someone would not want to be sexually intimate with them because of HIV infection.

16. Internal stigma and fears (cont’d…) • 45% of respondents in total reported they felt ashamed because of their HIV+ status • The main forms of internal stigma were feelings of guilt (27%), self-blame (25%) and low self esteem (22%)

17. Rights, Laws And Policies • About 50% of respondents were aware of the Declaration of Commitment on HIV to protect rights of PLHIV • 10% thought to have been denied health insurance due to their HIV+ status

18. Effecting change • 80% said they supported other PLHA emotionally and physically • There was low knowledge (25%) of organizations that help care for PLHIV, except the network of PLHIV • about ¼ of respondents reported they had influence in policy and programmes locally & wider

19. Testing and diagnosis • 22% tested for HIV because of pregnancy • Only 4% tested to prepare for marriage/sexual relationship. • Of those who tested, 79% made a decision to test on their own and had both pre and post HIV test counselling.

20. Disclosure & Confidentiality • 88% of men disclosed to partners while 84% of females to their children. • 60% of respondents reported “felt” pressure to disclose their HIV status from other individuals not living with HIV • ¾ reported they felt confident medical records are kept confidential

21. Treatment • 75%had access to ARVs and treatment for opportunistic infections. • 75% discussed with a health care professional subject of HIV-related treatment options in the 12 months preceding the survey

22. Self-reported health status associated with economic and quality of health care • 75%had access to ARVs and treatment for opportunistic infections. • 75% discussed with a health care professional subject of HIV-related treatment options in 12 months preceding the survey

23. Self-reported health status associated with economic status and quality of health care

24. Experience of having children • 88% of respondents said they had children • 77% said were advised not to have children. • Over 50% of female respondents had received ARV for PMTCT.

25. Conclusion The Stigma & Discrimination findings suggest unmet needs in terms of interventions towards empowering PLWA and increased HIV prevention, care and treatment

26. END THANK YOU