Socially constructed exclusion: Understanding and mitigating the pervasive influences of HIV-related stigma John de Wit, Professor and Director Centre for Social Research in Health (formerly National Centre in HIV Social Research) The University of New South Wales Sydney, Australia

Acknowledgements  Dr Loren Brener, Senior Research Fellow, CSRH  Dr Sean Slavin, Adjunct Senior Research Fellow, CSRH  Mr Denton Callander, Research Assistant, CSRH  Ms Hannah Wilson, Research Assistant, CSRH  Dr Philippe Adam, Senior Research Fellow, CSRH

Background  HIV-related stigma and discrimination are formidable barriers to HIV responses, affecting prevention, diagnosis, treatment, care, support and impact mitigation

The Stigma Factor Wednesday, August 6, 2008

Background  HIV-related stigma and discrimination are formidable barriers to HIV responses, affecting prevention, diagnosis, treatment, care, support and impact mitigation  There is substantial and increasing evidence that the experience of stigma and discrimination has adverse effects on the health and wellbeing of people affected

Background  HIV-related stigma and discrimination are formidable barriers to HIV responses, affecting prevention, diagnosis, treatment, care, support and impact mitigation  There is substantial and increasing evidence that the experience of stigma and discrimination has adverse effects on the health and wellbeing of people affected  Strengthening responses to fight stigma and discrimination and mitigate its impact require a combination of critical analysis, sharing of experiences and robust research

Strengthening evidence base  Assessing HIV-related stigma and discrimination across countries, affected communities, and social settings  Development of measures to systematically examine and comparing the diversity of experiences and perspectives  Investigate factors that shape the experience, expression and impact of HIV-related stigma and discrimination  Develop, evaluate and implement interventions that address factors that influence stigma and discrimination

Stigma Audit  National Association of People with HIV Australia (NAPWHA)  Multi-method, community-owned, collaborative research  Including online survey of almost 700 PLHIV  To explore experiences of HIV stigma among PLHIV  To investigate factors contributing to experienced stigma  To assess the impact of stigma on health  To identify factors associated with and strategies to strengthen resilience

Findings from ongoing analyses  Moderate level of experienced stigma and discrimination as assessed with modified Berger et al. (2001) stigma scale; stigma is also experienced in relation to collecting and taking medication  Experienced stigma and discrimination is negatively associated with mental health, wellbeing and resilience; disclosure to specific social referents may moderate some experiences and impacts  PLHIV with visible symptoms report more stigma and worse outcomes; heterosexual PLHIV also feel more stigmatized but do not experience worse outcomes  Centrality of HIV to identity may compound negative experiences and impact, while these may be attenuated by attachment to an HIV positive community

Some key messages HIV-related stigma and discrimination is recognized as a critical barrier to effective HIV responses Collecting life saving antiretroviral drugs and taking them in social settings are experienced as sources of stigma Experienced stigma is shaped by a range of personal, social, structural and health service characteristics that offer points of entry for stigma interventions In addition to supporting and empowering individuals, undertaking information campaigns and advocating for structural change, interventions with health care workers and/or in health services continue to deserve attention.

Considerations for interventions  Who to focus on? Stigmatized – stigmatizer  Coping, empowerment – knowledge, structural change  What approaches do we know work? And why?  Little research, few studies of high quality  What interventions are being tested?  Dissemination of information, popular opinion leaders, community website  PLHIV telling stories about their lives; bringing together health care staff and PLHIV  Forming community-based organizations  Are processes influencing stigma being addressed?  Systematic intervention development