Give Stigma the Index Finger project, running from 2011 to 2014 in Mozambique, Ethiopia, and Swaziland, aims to increase understanding of HIV stigma by empowering men and women living with HIV to take an active part in research and resulting advocacy on HIV stigma. There are various components to this project which include a stigma measurement tool, the Stigma Index (operating globally), an oral testimony component, and a media development component. The project has been led by the International Planned Parenthood Federation (IPPF). Partners include networks of HIV-positive people in each country, Panos Eastern Africa, Panos Southern Africa, and Oral Testimony Works (OTW). OTW has led the oral testimony component of the project to record in-depth oral testimonies of people's experience of and responses to HIV stigma, giving a more personal voice to the work of the Stigma Index in the three countries.
The Stigma Index
The Stigma Index is a tool to measure stigma and discrimination faced by people living with HIV. The results of the Stigma Index provide quantitative evidence of stigma and discrimination, and it is designed to allow stigma and discrimination to be compared over time. It follows the GIPA (Greater Involvement of People Living with HIV and AIDS) principle in that it is driven by people living with HIV (PLHIV) and their networks. In each country, a team of PLHIV is trained to use the Stigma Index questionnaire to interview large numbers of PLHIV about their experiences of HIV stigma.
In contrast to the data collection for the Stigma Index, oral testimony interviewing is open-ended, in-depth, and audio-recorded; it is intended to provide a different kind of evidence - detailed, individual, first-person accounts. In each of the three countries - Mozambique, Ethiopia, and Swaziland - at least 10 PLHIV (men and women) were selected to participate in a five-day oral testimony training workshop. Most of those participating had also worked as community researchers on the Stigma Index, and many were adherence counsellors. The workshops covered questioning skills, topics for interview, recording equipment, interview relationships, informed consent, and transcription.
As explained by OTW, "following each workshop the interviewers returned to their home areas, recorded and transcribed a further four interviews with people living with HIV. They generally interviewed people they had an existing relationship with through their support associations. Project coordinators supported the interviewers during this process and organised a review meeting halfway through the interview collection. Interviewers also came together at the end of the process to share their analysis of the testimonies and ideas for communication."
Panos Eastern Africa and Panos Southern Africa worked with national partners to set up training and fellowship programmes for national journalists to produce improved and increased print coverage on HIV stigma. The media work was informed by the experience and outcomes of the oral testimony work in each country, with some of the oral testimony interviewers participating in the media workshops. A total of 48 journalists attended workshops, and 30 feature articles were published in the final year of the project.
"21 stories 21 days"
In total, from all three countries, 140 women and men living with HIV shared their experiences, memories, and views with the assurance of maintaining anonymity. Thirty-one of these testimonies were translated into English and, from these, 21 were selected to form part of the "21 stories 21 days" initiative run by OTW. Every day from July 1 until the start of the International AIDS Conference on 21 July 2014, the project shared extracts from 21 oral testimonies. The extracts were shared on the OTW website and shared daily through their Twitter and Facebook pages.
Following this, the IPPF and OTW launched "Stigma is Still my Most Serious Challenge" at the International AIDS Conference 2014. In this publication, men and women "talk about HIV-related stigma and describe their courage, inspirations, suffering, resilience and determination to trigger change. Their stories demonstrate how stigma and discrimination can hinder access to vital support and care and the prevention, testing and treatment of HIV." Click here to download this publication.
At a national level, OTW and IPPF are supporting partners to communicate these testimonies to national audiences through radio and community dialogues.
OTW is a Community Interest Company set up in 2013 to build on the legacy of Panos London's two decades of oral testimony activities. As explained by OTW, "we support people to communicate their first-hand experiences of issues affecting their lives - for example poverty, HIV, displacement, environmental change and conflict. Our approach develops research and communication skills and demonstrates the value of listening to those most affected by development. The resulting in-depth, personal accounts can increase understanding of the complexity of development and provide the basis for powerful advocacy work." Find out more about Oral Testimony Works by clicking here.
International Planned Parenthood Federation (IPPF), Oral Testimony Works, Panos Eastern Africa, Panos Southern Africa, Panos Global AIDS Programme (GAP), and funded by Comic Relief.