Process and Lessons learned from a community-based international research on HIV disclosure Ludmila Verdes - ARAS Florin Lazar – University of Bucharest ROMANIA PARTAGES

Who we are? ARAS - Romanian Association against AIDS Romanian NGO active in HIV prevention and support for PLWHA (since 1992). Have branches in 10 counties: Arad, Bac ă u, Brașov, Cluj, Constanța, Dolj, Iași, Neamț, Timiș and Bucharest. 2 substitution treatment centers in Bucharest. Experience in KAP & Behavioral research on HIV– since University of Bucharest – Faculty of Sociology and Social Work (FSSW) Established in 1864 – UB FSSW – since 1990 (banned during communist regime) 1st place in National evaluation of HEI (2011) – UB/FSSW 2,700 students – FSSW Academic research Conducting research on hard-to- reach populations 2

What is PARTAGES? A community-based research project on HIV disclosure associated factors (fr: Partage = disclose, sharing) Implemented in 5 countries: Ecuador, Mali, Morocco, Democr. Republic of Congo and Romania ( ) 1500 participants (300 from every country) Goal: Use research findings to develop programs on PLWHA empowerment to make a decision on their status disclosure. At all levels, the research team was formed of a Researcher and a representative of a Community- based organization. 3

OUR TEAMS, in every country Community based organization Researcher 4 1 Research idea 2 Methodology 3 Instruments 4 Data collection 5 Data entry 6 Data analysis 7 Articles/Dissemination 8 Developing further actions

Our roles in PARTAGES project ARAS To coordinate the project at the local level in Romania. The respondents were clients of ARAS’s services in 3 cities (Bucharest, Constanta and Piatra Neamt). The trained field interviewers were professionals working with ARAS’s beneficiaries. Data analysis and project dissemination into actions. University of Bucharest Scientific coordination of research at national level Ethical Committee approval Training the field interviewers Supervising data collection and processing Data analysis and reporting Scientific dissemination 5

Previous research experience - ARAS Three kind of researchers: – I am an expert. Let me teach you.  Coming with already prepared questionnaires  Using our CBO mainly for interviewing the participants – I take your money and I don’t give you anything instead.  Our CBO created all research instruments (on our intuition)  Our employees were interviewing the participants  The researcher had the role to prepare the final report but... – I am the researcher  Our CBO created all research instruments and wrote the reports (by the principle I am the ball and I am the player/multi-task man) 6

Previous research experience with CBO – University of Bucharest, FSSW We only need you to write the report We only need you for your name (for the scientific validation of the research) We need you to do all research, we don’t know anything We have a research idea, but we don’t know how to document it, and we need your assistance We want to do a research and we need your support in data collection 7

Working together in PARTAGES Both, the researcher and the CBO agreed together on the research topic. We elaborated together the methodology and the questionnaire design. We discussed when something went wrong during data collection process. We discovered our first results together and we established the topics to be investigated in different articles We both work on the articles and dissemination of the project results. We are planning further actions - to develop programs that empower people to make a decision on their HIV disclosure 8

The added value of the community based research The research project is addressing the real needs of PLWHA and it is also scientifically relevant. The final questionnaire was well adapted to the community realities and was easily administered to respondents. The permanent communication between the CBO team and the researcher permitted to solve any difficulties very quickly and to guarantee the scientific rigor in the data collection. Priorities in the data analyses were determined by the scientific value of the results and by the real needs of CBOs. Community –based article writing (everyone came with it’s own knowledge and expertise). We have developed a trust relationship and we are ready to develop any future project together. 9

Lessons learned from PARTAGES ARAS We learned a lot about all the research process and Ethics on research. We trust in our results. We learned some new words like Impact Factor, Scientific Value etc. The multicultural partnership was a very reach and unique experience. We learned to be tolerant and to adapt to each one’s context. Today we feel professionals and still… we don’t imagine doing it further in a different way, than together. We still have so much to learn from each other. University of Bucharest We learned that an NGO needs more time to reflect, to decide and to implement, than we expected. We learned to be patient. Working together, we felt the meaning of the research targeted into actions. Discussing with professionals working with PLWHA gave us new insights on research. Transfer of knowledge from the research teams from developed countries to developing ones provided a pool of expertise in the national community-based research 10

We are proud of it! 11 Coalition Internationale Sida Visit our stand No. 4, Hall C Global Village