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Vulnerability Assessment of People Living with HIV (PLHIV) in Lithuania

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Vulnerability assessment of people living with HIV (PLHIV) in Lithuania FINAL Report Vulnerability assessment of people living with HIV (PLHIV) in Lithuania 2 Vilnius, September, 2009 The views expressed in this publication are those of the authors and do not necessarily represent the views of UNDP Copyright © 2009 United Nations Development Programme All rights reserved. Vulnerability assessment of people living with HIV (PLHIV) in Lithuania 3 Authors and acknowledgements . .4 Glossary of acronyms and definitions. 5 Background. 6 TABLE OF Executive summary . .8 CHAPTER 1: . 16 CONTENTS VULNERABILITY ASSESSMENT OF PLWHA IN LITHUANIA . 16 Overview of the HIV/AIDS epidemic in Lithuania . 17 Risk factors for HIV infection in Lithuania. 19 The quality of data on PLHIV in Lithuania . 20 Portrait of PLHIV and other people attitude towards PLWHIV in Lithuania. 21 Lithuanian Policy Response to HIV in Lithuania . 22 Legislation addressing the fight against HIV in Lithuania. 23 Summary of the Desk Review. 26 CHAPTER 2: . 27 RESEARCH METHODOLOGY . 27 Research objectives. 28 Research design. 29 Research ethics . 29 Research sample . 31 CHAPTER 3: . 37 RESEARCH METHODS. 37 First Stage of the Qualitative Study – Individual In-Depth Interviews. 38 Second Stage of the Qualitative Study – Focus Groups. 40 CHAPTER 4: . 43 RESEARCH FINDINGS AND THEIR DISCUSSION . 43 FIRST RESEARCH stage – IN-DEPTH interviews . 44 The individual situation of PLWHIV: common personal understanding, perceptions and experiences. 44 Individual experience of PLWHIV in the Educational Sector. 61 The personal experience of PLWHIV in the Labour market . 67 Personal experience of PLWHIV in Health Care Sector. 71 PLWHIV individual experience by interacting with Non Governmental Organizations (NGOs) . 78 SECOND STAGE OF THE QUALITATIVE RESEARCH – FOCUS GROUPS. 85 Perception and Attitudes of Specialists Working in the Educational Sector about HIV and HIV-Positive Persons . 85 Attitudes and perceptions of the representatives of the educational services sector regarding the situation of PLHIV . 94 Perception and Attitudes of the Representatives of the Labour Market (Employers) and the Non-Governmental Sector about HIV and PLHIV . .106 Attitudes and perceptions of the representatives of the labour market and the non-governmental sector regarding the situation of PLHIV . 111 CHAPTER 5: . .114 RECOMMENDATIONS . .114 CHAPTER 6: . .120 APPENDICES . .120 Appendix 1 . Guide for individual interviews with PLWHA . .121 Appendix 2 . Guide for focus group with representatives institutions . .125 Appendix 3 . Tables . .132 Appendix 4 . Bibliography . .134 Vulnerability assessment of people living with HIV (PLHIV) in Lithuania 4 Authors and acknowledgements Project Team Assoc. prof., Dr. Romualdas Gurevičius, Institute of Hygiene, Head of the Department of Epidemiology and Biostatistics, Project Manager Prof., Dr. Vilma Žydžiūnaitė, Mykolas Romeris University, Faculty of Social Policy, Department of Education Activities, Qualitative Research Researcher and Expert; Svetlana Kulšis, Manager of the Demetra Association of HIV Affected Women and their Intimates, a non-governmental organization; Jurgis Andriuška, Head of the Positive Life Association, a non-governmental orga- nization; Lijana Vainoriūtė, Institute of Hygiene, Department of Epidemiology and Biostatis- tics, Junior Research Fellow, Project Coordinator; Vaiva Gerasimavičiūtė, Institute of Hygiene, Department of Epidemiology and Biostatistics, Junior Research Fellow. Authors of the Report Assoc. Prof., Dr. Romualdas Gurevičius, Institute of Hygiene, Head of the Department of Epidemiology and Biostatistics, Project Manager Prof., Dr. Vilma Žydžiūnaitė, Mykolas Romeris University, Faculty of Social Policy, Department of Education Activities, Qualitative Research Researcher and Expert; Lijana Vainoriūtė, Institute of Hygiene, Department of Epidemiology and Biostatis- tics, Junior Research Fellow, Project Coordinator Acknowledgements The projects organizers are sincerely greatful to all participants of the in-depth interviews and focus groups for their heartfelt cooperation and opinions that were expressed in sharing their thoughts and experiences concerning the research theme. We also would like to thank the NGO organizations, which helped to choose the participants and provided financial aid and other support in implementing this project, including the Lithuanian AIDS Center, HIV-affected women and the Demetra Association, an association of their loved ones, and the Positive Life Association. We would like to thank the survey initiators (UNDP in Lithuania) and consultants from the Bratislava Regional Centre, and Professor Vilma Žydžiūnaitė (of the Depar- tment of Education Activities within the Faculty of Social Policy of Mykolas Romeris University) for their great contribution in analysing the data received from the quality research as well as for the methodological consultations. Vulnerability assessment of people living with HIV (PLHIV) in Lithuania 5 Glossary of acronyms and definitions1 HIV Human Immunodeficiency Virus AIDS Acquired Immunodeficiency Syndrome PLWHA People Living with HIV/AIDS MSM Men who have Sex with Men CSW Commercial Sex Worker IDU Injecting Drug User STI Sexually Transmitted Infections ART Anti-Retroviral Treatment LAC Lithuanian AIDS Centre EMCDDA European Monitoring Centre for Drugs and Drug Addiction CRIS The Country Response Information System UNAIDS Joint United Nations Programme on HIV/AIDS UNDP United Nations Development Programme WHO World Health Organization NGO Non-governmental Organization STIGMA refers to all unfavourable attitudes and beliefs directed toward people living with HIV (PLHIV) or those perceived to be infected, as well as significant others and loved ones, close associates, social groups and communities. Discrimination Discrimination consists of actions or omissions that are de- rived from stigma and directed towards those individuals who are stigmatized2. 1 Adapted from UNAIDS, UNICEF, AIDS info (http://aidsinfo .nih .gov/Glossary) and GMHC (http://www .gmhc .org/ health/glossary2 .html) 2 Adapted from: http://data .unaids .org/publications/irc-pub06/JC999-HumRightsViol_en .pdf Vulnerability assessment of people living with HIV (PLHIV) in Lithuania 6 Background This report describes findings from the research initiative sponsored by the UNDP Regional Centre for Europe and the Commonwealth of Independent States (CIS) that aims to identify barriers to the full social integration of people living with HIV (PLHIV). This study focuses primarily on access to healthcare, education and employment. This research began as a pilot study in Estonia and in the Kaliningrad region of the Russian Federation, which were selected because they have the highest HIV infec- tion rates in the region. The second stage of the study was simultaneously conducted in Georgia, Russia, Turkey, Uzbekistan and Ukraine. This report contains study findings from Lithuania. The goal of this study was to assess the ways that PLHIV and service providers view PLHIV’s access to medical services, education and employment in Lithuania. Study objectives: • To provide insight into the experiences of social vulnerability among PLHIV and identify barriers to the social integration of PLHIV. • To assess the attitudes and practices of institutional representatives (from the health, educational and labour market sectors) working with PLHIV. • To establish policy recommendations and implications for advocacy that will support the national government in eliminating discrimination and promoting the full integration of PLHIV, particularly regarding access to healthcare, education and employment. To achieve the objectives of this study include the following steps: 1. Desk Review The “desk review” was an intensive literature search, review, and a summary of all relevant documents concerning Ukraine’s current HIV policies and the provision of services and programs to protect the well-being of PLHIV. This includes, for example, epidemiological estimates of HIV prevalence and incidence rates, key policy or public health documents, and local initiatives to promote the well-being and human rights of PLHIV. 2. Community mapping The purpose of community mapping was to obtain a geographic awareness of the physical communities and environmental spaces that PLHIV and populations at higher risk inhabit or frequent, learn about size, density, visibility and accessi- bility of the target populations, and develop a sampling plan based on first-hand knowledge of the community. 3. Narratives of PLHIV from in-depth interviews The purpose of the individual interviews was to obtain first-person accounts from PLHIV about their experiences of discrimination, stigma, and vulnerability in society. Analysing these first-person narratives allowed for a deeper understanding of the ways by which PLHIV are excluded from full participation in society, and these ac- counts were used to create a broad taxonomy of indicators of vulnerability among PLHIV. Vulnerability assessment of people living with HIV (PLHIV) in Lithuania 7 4. Focus groups with institutional representatives. The purpose of conducting focus groups was to obtain narrative accounts from rep- resentative members of “mirror” organizations that work with PLHIV (government officials, healthcare providers, employers, colleagues at work, teachers, parents, schoolmates, NGOs, the police, and others). These narratives assessed representa- tives’ attitudes towards and relationships with PLHIV, as well as
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