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 WalesSydney, 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