Front page : Report : Introduction
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  Introduction
  Explanation of Study
  Report
  Acknowledgments
  Introduction
  What does it mean
  to have HIV here
  Why it’s so hard to tell
  you that I have HIV
  Reactions of Friends,
  Familly and Community
  Access to Healthcare
  Getting and Keeping a Job
  Support – Financial
  and Psyhosocial
  Living with HIV every Day:
  Diaries
  Recomendations
  and conclusion
  References
  Additional materials
  Audio materials
  Support services
  Blog
  Contacts
  Search

Introduction

The research team, led by Professor Tim Rhodes and Sarah Bernays from the London School of Hygiene & Tropical Medicine, has been conducting research in Serbia and in Montenegro with people living with HIV/AIDS (PLHIV) since 2005 and has produced two studies. The first was a baseline study conducted during 2005–2006 in which we interviewed 42 PLHIV and 18 service providers in Serbia and Montenegro. This was funded by the UK’s Department for Inter­national Development (DfID) and was part of the HIV Prevention for Vulnerable Populations Initiative (HPVPI), which was supported by UNDP. In the second study (2006–2007) we followed up 23 PLHIV from the original study with multiple interviews aiming to get a more in-depth understanding of their lives and to trace changes over time. The study was funded by the UK Economic and Social Research Council (ESRC). This study draws only on the data from the second study.

Other publications from this research: We have produced a UN report which focuses on the HIV treatment situation (Bernays et al 2007) from the baseline study and a report on the need for regular funding for HIV treatment monitor­ing tests (Bernays et al 2008) from the prospective study. These both have a direct policy focus.

Though Montenegro is now independent from Serbia, the study was designed before and undertaken during this period of separation and the booklet draws on data from participants from both Serbia and from Montenegro. The data we collected demonstrates that the settings and experiences of stigma and dis­crimination are very similar in both countries. Whilst this research is locally grounded we hope that this booklet has relevance throughout the region in characterising the social consequences of HIV.

What does qualitative research do?

This booklet  is based on qualitative research.

  • The principal focus of interest is people’s experiences and opinions.
  • The sample size in qualitative research is much smaller than in quantitative research, e.g. in a survey.
  • For the second study, from which all the data in this book let comes, we interviewed 23 participants (usually for an hour or so of informal conversation) and asked partici pants to keep written or tape recorded diaries. We inter viewed people three times over 12 months.
  • The results are not judged or presented in number format but in the words of the participants.

This second study aimed to capture more in-depth informa tion, sensitive to the nuances of realities and experiences. Whilst it does not purport to be generally applicable, we have encountered very similar stories amongst the participants and we can suggest with some confidence that it is likely the experience holds true beyond our sample. In presenting our research we will often use one case study or story to articulate an experience which is very similar to other people’s.

We are interested in people’s perspectives. So whilst some other PLHIV or service providers may disagree with their char acterisation of the situation, it is valuable to hear what these people living with HIV think and to try and understand why they might think about it this way.


What can this booklet do?

For most PLHIV being open and public about their status is not an option. The perceived necessity of keeping silent means that their voices are rarely heard. This research offers a rare forum in which PLHIV can speak safely and freely about their experiences without compromising their identities.

As Sanja explains:
‘It means the world to me that it’s anonymous… I just don’t know how I’d… live here [if I was open]. When I mentioned this [study] to a few other HIV positive they started at me: “You’re crazy!”. They won’t [talk]… But I appeal to all HIV people here, they all have the same problems as I do, only some of them won’t talk about it and I want to talk about it’.

This booklet aims to represent the views of those who have participated in this study, as much as possible through their own words. The data is taken entirely frominterviews with the participants andtheir study diariesbetweenmid2006 and late 2007. We hope that reading this booklet will help you understand the realities that PLHIV face everyday: the good and the difficult.


Who is the booklet for?

The booklet can be used by:

  • People living with HIV, particularly those who have been recently diagnosed.
  • Professionals working with people living with HIV/AIDS. It has been designed specifically to be used as an educational and training resource for healthcare professionals, social welfare personnel and teachers.
  • Advocacy and human rights groups doing advocacy and campaigning work in the HIV area.
  • Trainers and teachers involved in educating people on HIV.
  • Policy makers in incorporating the needs of PLHIV into protective legislation.
  • Researchers conducting and developing further research in this area.
  • Anyone who would like to learn more about the realities faced by those affected by HIV.
  • Anyone interested in and/or working in areas, outside HIV, similarly affected by discrimination on account of being different from the social ‘norm’.


Who is in the booklet?

This booklet is based on the experiences of 23 HIV positive individuals living in Serbia and Montenegro.

This is to introduce to a few of them

Hello! My name is Tanja and I’ve been living with HIV for 16 years now. Knowing I am ill has only made my will stronger over the years in fighting such a strong rival. I’ve leant to appreciate life, because it can be so fulfilled, good and exciting, especially because of the fact that it’s only ONE life! Let HIV/AIDS be one more reason for you to live your life to the fullest, for YOU ARE DIFFERENT IN SO MUCH AS YOU NOW KNOW THIS RECIPE FOR A BETTER (QUALITY) LIFE!

Hello! My name is Ana. For many years I wondered when there would be a service organised to meet all our needs. Treatment, social support, self-help, dentist or PLHIV association. I didn’t know how or when. Who would organise it? I knew there was need for it, but no one was seri­ously working on the issue.
I decided to change all that myself. I shared the idea with some other patients and friends. That’s how we started work. Today I can say with certainty that some things depend on ourselves. Working on problems you realise that it is because people don’t understand, don’t know... they make mistakes in treating PLHIV. Working in an organised way on prob­lems everything can be changed and improved in time. I feel secure, safe and confident again. There is no more keeping quiet and serious uncer­tainty. The demistification process is in progress. HIV is getting a face and prejudice is disappearing. I am especially encouraged and proud that the Denver Declaration was passed that sent a message from all PLHIV... We condemn attempts to label us as “victims,” which implies defeat, and we are only occasionally “patients” which implies passivity, helplessness and dependence upon the care of others. We are “people with AIDS.”

My name is Marina, and my age is not important. I’ve been living with HIV for almost half a century! There have been some difficult moments and different illnesses. Some of them affect everyone else too. In the beginning I expected death to come every day. It hasn’t happened yet, thank God! However, I have met people who gave me hope that life was worth living, I started HAART treatment and I’m still here! People who know about my status say that now you can’t tell by looking at me! I believe them and I’m grateful to them [for that]! Life is a special gift that shouldn’t be rejected so lightly!

My name is Mašan. I am 43 years old. I live and work in Belgrade, the most beautiful city in the world, where there are a lot of positive people! Each day I work on giving psychosocial support to people living with HIV ! :-) I used to be a professional model. Now I live alone and I have a large number of friends who love and understand me. Having this status in Serbia is not really a prestigious thing so... it’s nice be in love!!!

Hi, I’m Sandra. I am 30 years old and I live in Niš together with my unwedded husband. I have been HIV positive since September 2000. I used heroin, intravenously, since I was 17, and I tried heroin for the first time when I was 12. Since 2004 I have been on methadone. I am one of those patients who have never taken drugs afterwards and I’m proud of it. I am active in NGO Sunce, I am the president of the organ­siation and I consider my engagement the most important reason for my better quality life with HIV. I am quite different from other PLHIV (although it wasn’t my wish) because I appear publicly and speak open­ly about my positive HIV status, with the aim to get the public to realise the truth about PLHIV. All this sometimes means additional struggle with the environment, but this is the kind of struggle I gladly accept.