Fear Less Live More: dealing with HIV stigma and discrimination online

HIV Australia | Vol. 10 No. 1 | June 2012

Simon Donohoe and Ben Tart discuss an interactive campaign that aims to address HIV-related stigma that exists in both online and offline environments.

It’s no surprise that HIV-related stigma and discrimination remain major barriers to dealing effectively with the HIV epidemic in Australia and around the world. The impact of stigma is not only felt by individuals living with HIV but also has direct consequences on Australia’s public health response to the epidemic by undermining prevention, care and treatment efforts.

HIV stigma can deter people at risk of acquiring HIV from being tested, and deter HIV-positive people from accessing appropriate treatment and care. Stigma and discrimination also remains the main obstacle preventing people living with HIV from disclosing their status to friends and family, employers and work colleagues, health care providers and insurance companies; not to mention prospective sexual and/or romantic partners.

The issue of HIV-related stigma and discrimination has not been directly addressed through any social marketing campaigns in Australia for over a decade and – possibly more importantly – there has been a distinct lack of hard-evidence showing how, and to what extent, HIV-related stigma and discrimination is enacted and experienced within Australian gay communities.

The little research that does exist, such as the Barometer Survey conducted by AFAO and the National Centre in HIV Social Research (NCHSR) in 2009, indicates that HIV-related stigma is most commonly experienced by gay men in sexual and romantic settings.

Furthermore, social marketing campaigns that have occurred in the past have targeted the mainstream Australian community about their prejudicial attitudes towards people living with HIV and AIDS; however, until the release of the AFAO–NAPWA Fear Less Live More campaign on World AIDS Day 2011 (1 December) there had not yet been a national campaign that speaks directly to gay men and other men who have sex with men about prejudices that exist around sexual and romantic relationships within our gay communities.

Fear Less Live More campaign elements

In recognition of the complexity of the task in addressing HIV stigma and discrimination, AFAO and its member organisations have developed and released a multi-pronged campaign titled Fear Less Live More.

The over-arching aim of the campaign is to encourage gay men to communicate more openly about HIV in the context of sex and relationships. The campaign uses a mix of print and online strategies to focus on five areas: communicating about HIV status; choosing casual sex partners; acknowledging concerns about HIV; negotiating serodiscordant relationships; and overcoming fear of rejection.

Fear Less Live More is being distributed nationally by AFAO and its membership; campaign materials include a website, posters, web banners, a short animation video, print ads, postcards and t-shirts.

At the heart of the campaign are a suite of five posters combining text and hand-drawn illustrations designed by award-winning artist Jim Tsinganos. These posters were developed out of the campaign research and were designed to encourage men to think about and debate the themes raised by the campaign materials.

To facilitate interaction and discussion around the campaign themes, a Facebook page and a website (www.fearlesslivemore.org.au) were created, providing additional information about the campaign’s focus areas.

The website allows users to take part in conversations with each other on the site, as well as encouraging people to join the Facebook page and continue discussions there. The audience is able to engage with the campaign in a variety of ways, including joining, ‘liking’, providing comments and sharing stories in an effort to harness and help shape a community standard of non-discriminatory behaviour.

A short animation video, entitled ‘Ever found yourself in a closet?’, supports this goal by making a link between HIV-related stigma and experiences of homophobia. The video also helps drive traffic to the website and Facebook page.

The Facebook page itself includes two sub-pages, each designed to encourage engagement and interaction. The first page relates directly to the content of the video animation, while the second encourages people who are – or have been – in a serodiscordant relationship to share there story by posting a message (or video/photograph) demonstrating the existence and strength of such relationships.

Site statistics show that, to date, over 1,000 unique users have interacted directly with campaign messages though Facebook or the Fear Less Live More website. Comments are monitored by AFAO staff, however the moderation style aims to take a ‘hands-off approach’ as much as possible to allow online community the space to debate issues themselves and operate as a ‘self-correcting’ community.

This approach has proved very successful, and has allowed a range of comments about people’s experiences and interpretations of campaign messages – both positive and negative – to coexist. While comments about the campaign are not universally positive, numerous people have left appreciative messages supporting the campaign. To date, AFAO staff have not needed to intervene or remove comments.

Campaign development

During the development of the campaign, an initial series of focus groups found a broad range of factors influencing the ways HIV stigma and discrimination was enacted and experienced.

The research also found that these instances appeared to be on the increase – especially in both potential and realised sexual and romantic relationships. It seems there are less reasons for gay men to come together as a coherent community.

These reasons include greater social acceptance of diverse sexualities and related legal reforms which have allowed many gay men to mix more freely in mainstream society (including in social venues). This, as well as the improved health and wellbeing of positive people in general, has led to HIV-negative men having less conscious interaction with HIV-positive people (not to mention mainstream, heterosexual community members).

The sharing of online spaces

Changes to the way gay men relate to one another in physical spaces have occurred alongside the evolution of online social spaces.

It is well known that online forums have become a main way in which many gay men meet. The anonymity offered by online interaction can result in individuals feeling freer to voice opinions in ways they may not do in face-to-face situations – this includes discriminating against someone on the basis of specific characteristics such as their HIV status.

The ease of screening potential sexual partners online based on HIV status (‘serosorting’) is often as simple as looking for a checked box in a person’s profile. It is quite likely that this online phenomenon has also contributed to serosorting becoming a more common and ‘acceptable’ practice in physical situations.

One of the key things we learnt about how HIV-positive and HIV-negative men interact in shared online spaces was that profile descriptors commonly used on gay men’s chat sites were interpreted in a variety of ways.

For example, there did not appear to be a consistent interpretation across age range or HIV status about what is meant by ‘wanting bareback only’, or what is meant when someone’s profile reads ‘Always’, ‘Never’, or ‘Needs discussion’ in relation to using condoms.

This could strongly perpetuate discrimination because learning that someone is HIV-positive after interpreting their online profile as implying that they were HIV-negative could reinforce an individual’s negative perceptions of HIV-positive people in general.

How HIV-status affected campaign engagement

The development process for Fear Less Live More highlighted that social marketing alone will not achieve the required shifts in attitudes among HIV-negative (and status unknown) gay men. This has been reinforced through an initial analysis of the online engagement of the campaign, particularly through the campaign’s Facebook page.

Most comments and posts placed on the Facebook page were from HIV-positive men. We found that HIV-negative gay men were less likely to visibly engage with the online component of the campaign and, in particular, were less likely to participate in Facebook threads by posting and/or ‘liking’ comments.

The Facebook component of the campaign seemed most successful in being able to:

Provide encouragement and support for HIV-positive gay men around HIV stigma and discrimination, and
Reinforce and strengthen existing resilience of HIV-positive gay men around stigma and discrimination.

Outcomes and recommendations

The online component of Fear Less Live More, particularly the Facebook page, may have overreached in its ambition by ‘trying to do all things for all people’. While there was a strong engagement by HIV-positive men, the Facebook page appeared to lack in active engagement by HIV-negative men. However, it is much harder to quantify the number of ‘passive readers’ that may have engaged with campaign messages.

Overcoming fears

Overcoming fears of HIV-positive partners is a step-by-step process for many HIV-negative men. The first step for many HIV-negative men is to start talking about HIV; for it to be a topic of discussion in general, rather than something that is not discussed except by HIV prevention campaigns.

The next step in HIV-negative men in overcoming their fears is in knowing HIV-positive men socially. Personally knowing someone with HIV acts to ‘humanise’ the condition and begin the educative process on other sides to HIV and people living with HIV (PLHIV), rather than only the need to prevent transmission.

Additionally, knowledge that serodiscordant relationships are able to occur and do exist is important. The inclusion of serodiscordant couples within the focus groups identified a number of key lessons that could be used in future work of AIDS Councils and PLHIV organisations.

The most important of these was that knowledge of a serodiscordant couple is one of the key educative experiences for young men to overcome some negative assumptions they have towards HIV.

The final step in overcoming fears of having HIV-positive sexual partners was for HIV-negative men to educate themselves on all of the risks associated with sex.

Campaign materials therefore, need to be programmatically supported through concurrent group-work interventions, community outreach, individual counselling and other community initiatives.

These additional supporting activities will need to be regularly rolled out through AIDS Councils and PLHIV organisations over the coming years.

Online social/sexual networking spaces that allow the opportunity for HIV-positive men to share thoughts and experiences may however, assist in equipping positive men with the skills and resilience to better withstand and combat stigma and discrimination.

Join the conversation by visiting www.fearlesslivemore.org.au or find us on Facebook.

Ben Tart is Health Promotion Officer at AFAO. Simon Donohoe is Manager of the AFAO–NAPWA Education Team at AFAO.