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HIV, stigma and discrimination: developing the evidence base

Duration: October 2003 - September 2004

HIV infection is substantially stigmatised and people with HIV are consistently discriminated against. HIV-related stigma is linked to stigma based on sexuality, ethnicity, migration status, drug use, gender etc. There is growing consensus that addressing HIV stigma and discrimination is important in meeting the needs of people with diagnosed HIV infection.

This study involved 150 people with diagnosed HIV infection from three different demographic groups: gay and bisexual men, heterosexual African women and heterosexual African men. These three groups collectively account for the majority of people living with diagnosed HIV in the UK (although the experiences of other groups also need to be explored).

Participants were recruited online through advertising on community and commercial websites, through posters and business cards distributed in HIV and community settings and through snowballing. Fieldwork consisted of twenty guided discussion groups lasting between one and two hours. All groups were tape recorded, annotated and transcribed for analysis. Initial groups were comprised of people from one sample (eg. a group of gay and bisexual men, or a group of heterosexual African women). Later groups were mixed between samples. This allowed us to contrast experiences within and between different groups. All participants were paid £20 per group attendance and thirty chose to take part in more than one group. Groups were held in London, Brighton and Manchester.

A range of materials were used to encourage discussion (including newspaper articles, HIV health promotion materials and prompt cards). Topics for discussion were wide-ranging and included disclosure, access to health care, family and social networks, cultural and sub-cultural attitudes to HIV, financial and physical security, employment, migration and sexual relationships.

Individuals and groups varied both in their ability to respond effectively to stigma and discrimination and in the forms their responses took. This variation was due to differences in their capacity to exercise power in a range of areas. The presence or absence of factors such as legal immigration status, paid employment, and social acceptance influenced this capacity. Therefore, the extent of an individual’s or group’s social power profoundly influenced their experience of HIV related stigma.

In view of the importance of social difference, individuals varied in the extent to which they believed that solidarity and support among people with HIV was feasible and the capacity of such solidarity to counteract the negative effects of HIV-related stigma. Thus, the political ideals of AIDS service organisations and activist groups were often brought into question. Moreover, differences and antagonisms emerged between and within the groups taking part in the study.

This study describes stigma related to HIV as a social process which maintains and increases power inequalities between individuals and groups. These processes mutually reinforce and are dependent on other forms of discrimination: specifically, racism, xenophobia, sexism and homophobia. Combatting stigma depends on social empowerment and reform.

The report closes with a series of recommendations for government, HIV organisations, and civil society. These should inform an integrated response to HIV-related stigma.

The final report was called Outsider status: stigma and discrimination experienced by gay men and African people with HIV.

Results were also written up in two Journal articles called HIV-related stigma in England: experiences of gay men and heterosexual African migrants living with HIV (Journal of Community & Applied Social Psychology 2006) and Criminal prosecutions for HIV transmission: people living with HIV respond (International Journal of STD & AIDS 2006).

Key contact: Catherine Dodds

This research was funded by National AIDS Trust