HIV Stigma Studies and Resources
Here are a selection of studies and resources, from around the world, on combating HIV stigma.
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Interventions to Reduce HIV/AIDS Stigma: What Have We Learned?
This is a study of all the studies before 2001 into fighting HIV stigma and tells us what works. It reviews 21 interventions that attempted to decrease HIV stigma both in the developed and developing countries, and 9 studies that aim to decrease stigma related to other conditions.
It gives some useful guidance but asks more questions than gives answers.
Interventions to Reduce HIV/AIDS Stigma: What Have We Learned?
Lisanne Brown, Lea Trujillo, Kate Macintyre, 2001
Outsider Status: Stigma and Discrimination Experienced by Gay Men and African People with HIV
This is the major study of the impact of stigma and discrimination on the two main communities living with HIV in the UK. Importantly it explains how stigma in general is the way society establishes and maintains a social pecking order. Taller versus shorter people, older children versus younger ones, there are hundreds of examples. HIV stigma can be very significantly reduced - most diseases are not subject to stigma.
A linked article was published in a journal - HIV-related stigma in England: experiences of gay men and heterosexual African migrants living with HIV Journal of Community & Applied Social Psychology, 2006, 16: 472-480. Unless you have access to an academic library, you will need to pay to read this. The report above tells you all you need to know.
There is some more recent evidence on HIV stigma among UK gay and bisexual men in the UK and English region reports 'Vital Statistics 2008.' [see sections 19 and 10 of the reports]. The results are hard to 'read' and we discuss our interpretation of the findings for NW England here.
Outsider Status: Stigma and Discrimination Experienced by Gay Men and African People with HIV
Sigma Research, 2004
Sexually charged: The Views of gay and bisexual men on Criminal Prosecutions for Sexual HIV Transmission
This is also by Sigma Research, starkly illustrates the depth and strength of HIV stigma among gay and bisexual men in the UK. Sigma Research, 2009
Sexually charged: the views of gay and bisexual men on criminal prosecutions for sexual HIV transmission,
HIV-related stigma and psychological distress: the harmful effects of specific stigma manifestations in various social settings, Stutterheim SE and others. AIDS 23: 2353-57, 2009. Payment required unless you have access to an academic library. You can however read NAM's account of the findings here. It is largely based on gay men's experience in the Netherlands. Our view is that the findings have limited relevance except for well-educated, working, white gay men who dominated this study.
The People Living with HIV Sigma Index is a global gathering of stigma evidence, from the people living with HIV who experience it, to help fight HIV stigma. It helps measure and track changing trends in HIV stigma and discrimination. It aims to challenge the things that perpetuate stigma - a key obstacle to HIV treatment, prevention, care and support. The UK is one of the leading contributors.
Give Stigma the Index Finger
The initial UK findings, based on reports by 867 people. Very reader-friendly and well illustrated with quotes and colourful presentation of the findings. It covers health (confidentiality and telling people), self (internalising stigma), support (although most people know where to go for support with stigma, few do so), high levels of ignorance about legal rights and protection, and making changes - living positively.
The report highlights the action for change priorities for the next few years.
Give Stigma the Index Finger
“It’s about what we ourselves are going to do about it and that the Government is interested in the results; that makes me feel I am being listened to.”
There’s now a presentation report called questionnaire, pointers and qualitative exploration that explains how to make full use of the available data collected in the UK Index. There is some more detailed analysis and they have produced a computer tool to crunch the numbers, find relevant comments and produce fully detailed evidence. The idea is to use these to inform and train organisations to help end HIV prejudice and discrimination. Starting on page 29 there are four presentations, to illustrate how people can make use of all the data in the UK index.
Nam Life is a book and website of information and personal experiences for people living with HIV in the UK. It has a whole section on living with and dealing with stigma and discrimination.
HIV Reality Check Training Manual
A training manual with accompanying CD, for health and social care professionals, on raising awareness and addressing the issues of HIV related stigma and discrimination in service provision.
Produced by the respected Centre for Sexual Health and HIV, Sheffield
Living Positive was a city-wide HIV awareness event in March 2010 using photographs created by people living with HIV in Manchester, to document their experiences. You can view the images online. Around 2,000 free booklets were distributed and 60 venues were involved in the exhibition in the city.
The association of stigma with self-reported access to medical care and antiretroviral therapy adherence in persons living with HIV/AIDS (pdf) Sayles JN and others. J Gen Intern Med (webpage edition), 2009.
HIV stigma is one of the major causes of people dropping out of HIV clinics, and of poor adherence, as we reported from our own research in NW England.
HIV stigma as one major cause of clinic drop-out is expanded on, in this article in HIV Treatment Update (HTU) : Lost to Care - the mystery of disappearing patients, by George House Trust's policy expert Chris Morley and the editor of HIV Treatment Update, Gus Cairns. This will be available free online by Spring 2010. People living with HIV can obtain it free now. It was published in HTU 191, November 2009.
Meta-analysis of health and demographic correlates of stigma towards people living with HIV. Logie C and others. AIDS Care 21: 742-53, 2009. If you don't have access to an academic library (there is a $45 fee to pay otherwise) you can read NAM's account of the findings here.
The aim was to establish the strength and direction of the association between HIV-related stigma and physical, mental and emotional health, and also to determine the associations between stigma and a number of demographic characteristics. They found that “high stigma levels were consistently and significantly associated with lack of social support, poor physical health, poor mental health, lower income and younger age.” They recommend that “effective interventions to challenge HIV-related stigma should operate on multiple levels and target several populations.”
Positive Speakers Programme George House Trust trains and supports people who are living with HIV in NW England to give talks in schools and other community settings, to counteract HIV stigma and discrimination.
You can read about it and the evaluation of this highly commended programme here, and also book speakers.
Understanding and Challenging HIV/AIDS Stigma was designed for southern Africa, but has useful lessons for all. Most HIV+ African migrants in the UK arrived undiagnosed and are no better informed than other people in their home countries. We need to understand those attitudes and level of knowledge to be effective in dealing with stigma among African people now living in the UK.
Understanding and Challenging HIV/AIDS Stigma, Catherine Campbell, Yugi Nair, Sibongile Maimane, Zweni Sibiya, South Africa, 2005
Stigma: Beliefs Determine Behaviour looks closely at the different ways our and society's beliefs shape behaviour around HIV. It argues that there is only one solution, if we hope to make any difference at the social level. We must challenge people's beliefs. When we can do this, we can then make a real impact on stigma, discrimination, gender inequity and a range of other social issues. What are the values we want to share? How do we want to live?
Stigma: Beliefs Determine Behavior, David R. Patient, Neil M. Orr
Stigma discourages people from taking HIV tests
People with stigmatising beliefs about HIV are less likely to take HIV tests, according to a report in Acquired Immune Deficiency Syndromes. Stigma must be addressed to improve HIV testing rates.
Stigma of Mental Illness & HIV: Causes & Strategies, Alistair Hustig, The Lancet Student, 2009, is an excellent article drawing lessons from the comparison of two stigmatised conditions. Contains useful references particularly :
Reducing HIV Stigma and Discrimination: a critical part of national AIDS programmes. 2007, Joint United Nations Programme on HIV/AIDS (or download from UNAIDS).
The paradox of public HIV disclosure. Paxton S. AIDS Care 2002; 14(4): pp. 559-567. ($45 payment required unless you have access to an academic library).
The aidsportal website has a useful large (over 300 items) section of resources on stigma and discrimination
This includes Combating HIV stigma in health care settings: what works? Laura Nyblade and others, Journal of the International AIDS Society, 2009
Organisation self assessment HIV stigma and discrimination checklist, Global Network of People Living with HIV/AIDS (GNP+) and the Asia Pacific Network of People Living with HIV/ AIDS (APN+)
The Code of Good Practice for Non-Governmental Organsiations (NGOs) Responding to HIV/AIDS (the ‘Code’) was created by a broad consortium of NGOs as a shared vision of good practice.
The Code sets out the principles and practices that evidence shows make successful community responses to HIV. It deals with the key parts of HIV programmes and the basic work principles that need to be followed. These principles are aspirational, setting out examples of good practice that NGOs can work towards over time. More information on the Code
HIV Stigma and Discrimination training - this unit takes about 3.5 hours study, working in a group. It is part of a course of 15 units, designed to take people from knowing nothing to being a HIV community health worker. Much of the material could be useful to educating UK volunteers, partners, family and carers of people living with HIV, although it was designed for community health workers in sub-Saharan Africa.
By the end of the stigma and discrimination unit, participants will be able to:
Empathize with people living with HIV/AIDS who are stigmatized and discriminated against.
Define and recognize stigma and discrimination.
Identify the causes of stigma and discrimination.
Describe the consequences of stigma and discrimination.
Recognize their own attitudes about people living with HIV/AIDS and how these attitudes affect their work.
List strategies you can use to decrease stigma and discrimination related to HIV/AIDS in their community.
HIV Australia published a Stigma and Discrimination issue in September 2009 (volume 7.3) 
Various HIV Stigma Resources - Audio, Flipcharts, Kits, Novelties, Pamphlets, Photographs, Posters, Training Materials, Videos
HIV communication materials from Core HIV Initiative, which claims to be the world's most comprehensive and rapidly growing collection of HIV health communication materials.
Emmy award-winning HIV Positive Voices documentary video
Examples of campaigns targetting gay and bisexual men, positive and negative
- Quebec, Canada campaign - stop serophobia (English and French versions) - includes YouTube videos - one for negative and one for positive men (French and English versions)
- a similar campaign from Ontariio, Canada HIV stigma
- Outlive poster anti-homophobia campaign from Canadian Rainbow Healthcare Coalition
All three are debated in the useful Canadian HIV and gay blog Ickaprick and Ironpussy
What if it were you? A number of fine awareness posters by young people in Madison, Wisconsin, USA.
Can we measure HIV stigma and discrimination? Laura Nyblade and Kerry MacQuarrie of the International Center for Research on Women. The focus is on HIV stigma in the developing world.
Canadian Plan of Action against HIV Stigma and Discrimination is an excellent resource. We think it outshines the UK's Department of Health Implementation Plan.
booklet
French - Une partie de la solution : Un plan pour le Canada afin de réduire le stigmate et la discrimination liés au VIH/sida
Full Plan
Understanding and Challenging HIV Stigma: Toolkit for Action 
This toolkit was designed for Non-Governmental Organisations, community groups and HIV educators, to raise awareness and promote actions to challenge HIV stigma and discrimination. Based on research in Ethiopia, Tanzania and Zambia, the toolkit contains more than 125 exercises.
It's available online as separate pages - helpful if you don't have broadband internet, because it is a very large pdf file
in full here [pdf 9.6Mb]
and here are additional exercises [pdf of 2.7Kb]
African HIV Policy Network Newsletter from the UK
Stigma and Discrimination issue - Oct 2006
Africans in the UK challenging HIV stigma - online film/video, DVD
No Blame, No Shame is a HIV health promotion film from the African Health Policy Network (AHPN). The film tackles the taboos and stigma surrounding HIV infection in UK’s African community. No Blame, No Shame features top comedian Gina Yashere, alongside HIV positive UK Africans, in a film made by Angus Malcolm in 2011.
People living with HIV speaking about stigma.
Watch, listen and read people in the UK's experience of dealing with HIV stigma and discrimination, at HealthTalkOnline
HIVStigma.com is a Ontario, Canada anti-stigma campaign site (also available in French) aimed at gay men. It has useful pages on what HIV stigma is, and how to stop it. There are some pages that don't apply in England - the law on disclosure and prosecutions is very different in Canada. It has some information for people who aren't gay men.
There are other websites on stigma and duiscrimination listed and described here that you may find useful.
HIV and Stigma booklet from NAM
An excellent booklet for people living with HIV. Quotes the words of many people in the UK about their stigma experiences, and in plain English explains stigma, punctures the myths behind it, and describes how we often internalise stigma (come to believe it is the truth - through no fault of our own).
It gives useful advice about how to deal with it. Family, friends, community, healthcare, work, services, media can be both sources of stigma, and sources of support in dealing with stigma. It also tells us how and who to complain to.
Tackling HIV Stigma and Discrimination - Department of Health Implementation Plan for England, 2007
HIV stigma and discrimination - a 2010 review of the UK situation by the HIV Policy Network, led by NAT, with stigma strategy ideas.
Websites with useful information and resources
NAT (National AIDS Trust) website has a section on Law, Stigma and Discrimination.
If you know of other useful resources for HIV stigma please tell us
image credit - Together in Positive Thinking poster
image credit - HIV positive T-shirt - World Bank