Training workshop for people living with HIV in the UK

We would like to invite people living with HIV from the UK to apply to participate in a training workshop on The People Living with HIV Stigma Index in May 2009. At this workshop, participants will be trained in how to interview and be part of the research team in the rollout of the index in the UK. The People Living with HIV Stigma Index is a research and advocacy initiative that will measure and detect changing trends in relation to stigma and discrimination experienced by people living with HIV. It is led by and for people living with HIV, and the UK will be one of the first countries in the world to rollout the index in 2009

The workshops will be co-facilitated by the project coordination team, which includes representatives of the national [Terrence Higgins Trust (THT), African HIV Policy Network (AHPN), Positively Women (PW), and other organisations working with HIV in the UK] and the following international organisations [International Community of Women Living with HIV (ICW), International Planned Parenthood Federation (IPPF), Global Network of People Living with HIV (GNP+) and the Joint United Nations Programme for HIV and AIDS (UNAIDS)].

Travel costs (train or airfare) for the training will be covered by IPPF, and where necessary so will accommodation for participants from outside London. Lunch, tea and coffee will be provided. The training will take place at the IPPF offices, 4 Newhams Row London SE1 3UZ, for 3 days, 8-11 May 2009. There may be one additional training later in the year-please indicate if you would be interested in attending a later training if you are not available in May.

At the end of the training, participants will have the possibility to continue as paid researchers in The People Living with HIV Stigma Index between May and August 2009.

Selection Criteria

The representatives must fulfil the following criteria:
1) Be openly living with HIV
2) Resident in the UK for a minimum of 12 months.
3) Be a client/volunteer/staff member/trustee from an organisation with a long standing commitment to working with HIV.
4) Have existing training/people and/or interview skills.
5) Agree with the aims of The People Living with HIV Stigma Index.
6) Be committed to taking the Index forward and have time during May-July to conduct the interviews (upon successful completion of training). 
 The national and international partners will provide technical support, where required.
 To apply, please send:
1)      250-500 words explaining why you would like to participate in this programme, your interest and/or previous research experience, and your vision for working with the index in the UK
2)      Your CV
3)      A professional reference from someone who can speak to your ability to meet the selection criteria or an endorsement from the head of your network / organisation stating their support for your involvement in this process, now and in the future. 

Interested applicants should respond by email, with a letter of interest, their CV and reference by Friday 3 April 2009, to Alastair Hudson (, Lucy Stackpool-Moore ( and John Vivian (

We look forward to hearing from you and working with you on this important initiative.

Background Information

Understanding Stigma

HIV related stigma and discrimination are widely recognized as barriers to accessing HIV prevention, treatment and care services. Without concerted action the goal of universal access will be impossible to achieve. 

Much of what we know about the stigma attached to HIV, and resulting discrimination, is anecdotal or fragmented. Existing surveys of community and healthcare provider attitudes mean much more is known about their influence. However, the only true test of whether stigma and discrimination is being reduced is to measure the opinions of people living with HIV themselves. Determining whether HIV related stigma is attributable to HIV status or because of associated factors (e.g. sex work; injecting drug use; sexual orientation; poverty) or a combination of these elements is a key determinant of revised programmatic interventions. To date, an in-depth and rigorous understanding of the personal experiences of PLHIV remains largely elusive.

The People Living with HIV Stigma Index - utilizing participatory and operational research methodologies - will fill this gap in our global understanding. The experiences of people living with HIV can then be triangulated with the two existing survey approaches to allow a comprehensive picture of stigma and discrimination to emerge. This can be used for informing policy and programme change and addressing the subtlety of HIV related stigma.

The Aims of The People Living with HIV Stigma Index

Process and Product

The People Living with HIV Stigma Index provides a tool that will measure and detect changing trends in relation to stigma and discrimination experienced by people living with HIV in the UK. The rigorous quantitative and qualitative research outlined in the proposal will inform better policies, more effective programs and be an empowering experience for the people living with HIV involved in the process. It will generate a wide range of knowledge and best practices that the IPPF, and other partners including UNAIDS, will collect and disseminate at the national and international level. The main aims are:

1) Increasing advocacy and building the evidence base: The Index will increase the understanding of how stigma and discrimination is experienced by people living with HIV. The evidence gained will then shape future programmatic interventions and policy change.

2) Operationalising the Greater Involvement of People Living with HIV: The Index is a tool to be used by, as well as for, PLHIV. The Index supports the GIPA (Greater Involvement of People living with HIV and AIDS) Principle through being driven by people living with HIV and their networks. By acting on this principle the Index will simultaneously empower the individuals and communities most affected by the epidemic.

Specifically, the expected results of the index include:

1)       Evidence to improve policies and ensure that policies are grounded in the realities of living with HIV in the UK. The findings from the index will be used to promote the human rights of people living with HIV and advocate for policy change on key issues including the criminalization of HIV transmission

2)       Improved programs influenced by the perspectives of people living with HIV to better meet the needs of people living with HIV and increased access to, and uptake of, services

3)       Models of best practice for the greater involvement of people living with HIV (GIPA) by putting people living with HIV at the centre of the process and ensuring that it remains by, and for, people living with HIV throughout all stages of implementation

 A comprehensive monitoring and evaluation framework will be developed for all three key areas, which will be implemented by the project manager at IPPF with guidance from the international steering group. Indicators will be developed to measure change over time for each area.

 Objectives of UK project

Funding secured from the MAC AIDS Foundation will enable the first rollout of the People Living with HIV Stigma Index in the UK in 2009. This will contribute towards the objectives of the international project - to detect the changing trends in HIV and AIDS related stigma across various countries - and the data from the UK will be included in comprehensive and comparable analysis of stigma and discrimination.

This project will have the following four key outputs:

1.        Strengthening the research capacity of people living with HIV in the UK which will include awareness raising, training, and fostering national partnerships to manage and analyze the index findings as well as training in quantitative and qualitative research methods and communicating the results with a wide range of audiences in the UK (policy makers and politicians, peers in other networks and individual people living with HIV, health service providers and community based organizations) 

2.        Development of reporting, data capture and analysis systems in the UK and linking with the international project: Systems and structures are established at IPPF and GNP+ to enable the efficient management of data/results when the Index is rolled out in countries. This will include adapting the IPPF Electronic and Information Management System (EIMS) to collect and analyze data; recruiting and training a project manager and providing management support to the PLHIV networks; linking with national universities to advise on data analysis and reporting the findings of the research.

3.        Increased donor advocacy and resource mobilization:  Evidence and results from the implementation of the index in the UK will strengthen efforts to mobilize additional resources for further rollout in other countries in 2009 and beyond, and for follow up research activities in the UK. This will also increase awareness of the PLHIV Stigma Index within all national level stakeholders and networks within the HIV and AIDS and sexual and reproductive health arena.

4.        Better informed public debate and human rights campaign, based on evidence. Drawing on the research findings as well as the key partnerships involved the campaign would use innovative communication approaches to engage policy and law makers and support advocacy efforts to promote human rights. One key issue in the UK is about the impact of criminalization of HIV transmission and how it reinforces stigma and discrimination relating to HIV. The campaign will also be designed to raise awareness amongst key populations, notably People Living with HIV, to become better informed about their legal rights and responsibilities

More information is available at