The People Living With HIV Stigma Index documents how people have experienced - and been able to challenge and overcome - stigma and discrimination relating to HIV over a 12 month period. 

It is the first robust attempt to establish a baseline for documenting the stigma and discrimination experienced and overcome by people living with HIV in the UK.

867 individuals took part in the The People Living With HIV Stigma Index research, which championed a community research model, and involved people giving responses to an in-depth questionnaire conducted by trained community researchers.

Interviews were carried out in more than 40 locations around the country, from Aberdeen to Portsmouth, including Wales, Northern Ireland, Scotland, Manchester and London.

www.stigmaindex.org

Background: 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. 

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 are being reduced is to measure the opinions of PLHIV themselves.

Determining whether HIV related stigma is attributable to HIV status or because of associated behavior (e.g. sexual orientation; sex work; injecting drug use) or a combination of these factors is a key determinant of revised programmatic interventions.

The 'People Living with HIV Stigma Index' - using participatory and operational research methodologies - will fill this gap in our global understanding.

The experiences of people living with HIV (PLHIV) can then be compared with the 2 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.  

Increasing advocacy and building the evidence base

The index will increase the understanding of how stigma and discrimination are experienced by PLHIV. The evidence gained will then shape future programmatic interventions and change policy.

Policy and programme managers have long recognised that action is needed to address stigma and discrimination.

The information gained from the index will provide evidence for the success, or otherwise, of current programmes and highlight neglected areas requiring future action.

Consequently, the index will be a powerful advocacy tool which will support the collective goal of governments, non-governmental organizations and activists alike to reduce the stigma and discrimination linked to HIV.

Involving PLHIV

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 PLHIV and their networks.

Based on this principle the index will empower the individuals and communities most affected by the epidemic.
 
As the index moves from concept to implementation it will be adopted by a variety of different PLHIV groups.

Its design and construction will allow it to be used independently. Groups can then use it to understand experiences of stigma and discrimination in their locality.

The use of the index over time, in conjunction with surveys, will be key to increasing our collective understanding and detecting changes and trends.

The benefits of the index for those conducting it go further than collecting much-needed evidence. The process of empowering PLHIV, their networks and communities is crucial – a critical ingredient of ensuring that the GIPA principle is used.

The index will therefore be both a catalyst for and foster change in the communities in which it is used. 

Primary partners: collaborative action

The index is a result of a partnership between:

• IPPF
• UNAIDS
• ICW (the International Community of Women living with HIV) 
• GNP+ (the Global Network of People living with HIV)

Since 2004 these partners have led a broad consultation process and the final comprehensive tools build on existing work by numerous organizations and specialists in index design.

(The index questionnaire and user’s guide have been tested and piloted by PLHIV networks in India, Kenya, Lesotho, South Africa and Trinidad and Tobago).