Combating the stigma of HIV

The challenge
HIV is more prevalent in the UK than many of us think. Figures released in November by the Health Protection Agency show that of the estimated 86,500 people in Britain who have HIV, a quarter are not aware of their condition. Furthermore, over half of people diagnosed in 2009 were diagnosed late, meaning their treatment could only begin after the time when it would have been most effective. Experts are now calling for routine tests for the HIV virus to be carried out in casualty wards and doctors’ surgeries as too many cases are going undiagnosed.

Across England there are 37 health trust regions with high levels of HIV, 26 of which are in London. NHS London and the London Sexual Health Programme asked us to help with a campaign to improve the sexual health of Londoners and raise awareness of the importance of HIV testing. Thanks to NHS London’s work, late diagnosis of HIV has fallen from 35% to 28% over two years, but it remains a problem and they needed to find more ways
to address this.

The brief
Our brief from the London Sexual Health Programme was to engage with healthcare professionals and sexually active Londoners to develop a campaign that would address the stigma and lack of awareness associated with HIV and encourage more Londoners to get tested.

The approach
Using our online community, eVillage, we looked into the reasons people delay HIV testing, or do not get tested at all. A two-phase strategy was deployed, the first part involving HIV specialists, specialist nurses and GPs involved in sexual health, the second involving a cross-section of Londoners.

The online community approach encouraged co-creation and helped ensure healthcare professionals took part. It also allowed us to explore underlying issues relating to HIV testing, enabling us to develop new ideas and look at things from a variety of angles.

The use of online video diaries added a personal dimension. This involved members of the community posting self-shot video footage of themselves explaining the reasoning behind responses to questions or creative ideas. This helped bring the respondents to life for one another and increased willingness to participate in the community over longer periods.

eVillagers were also asked to rate advert concepts for impact, resonance with the target population and likelihood of raising the number of people going for HIV tests. Concepts were adapted to reflect this feedback then shown to them again. Qualitative projective techniques such as word association were also used to measure their responses.

Through discussions in the first phase of the research, the health professionals identified a need to avoid fear or scare tactics, focus on healthy living and how, if treated, those with HIV can carry on with normal life.

In the second phase, all 60 participants were aged between 21 and 50, sexually active (with two or more previous partners), unmarried, from a range of socio-economic groups and not suffering from HIV. They fell into three categories. Twelve were homosexual or bisexual, allowing us to explore awareness and understanding in the gay communities. Twenty were of black African descent, half of whom were born in Africa – a community considered as being at significant risk of HIV. The rest of the group were made up of heterosexuals from a range of ethnic backgrounds, reflecting the remainder of the general public.

In phase one, the health professionals identified what they thought were the challenges to people coming forward for HIV testing: stigma, denial and fear. We then set up 15 activities for phase two, asking participants to perform a range of tasks including commenting privately, discussing as a group and submitting ideas, word and image associations. We showed them a number of adverts and images associated with HIV and asked them to talk about how they affected them and why.

We asked participants to dedicate around an hour a week to the tasks and encouraged dialogue in the discussion tasks. The online approach meant that they were able to discuss sensitive issues more openly rather than worrying about being politically correct.

The findings
All eVillagers showed good awareness of HIV and the availability of testing.

But we found that the public still see HIV as a ‘gay man’s disease’, so that many people think they can just ignore it. So much has been done to target high risk groups that many who are not gay see HIV as something that could never happen to them. Among homosexual men, regular testing was more common thanks to a good understanding of the risks.

There was a strong feeling among the eVillagers that there is still a stigma attached to HIV, particularly in the black African community, which was preventing them coming forward for HIV testing.

Increasing numbers of white heterosexual people were delaying HIV testing because it was not something that they thought applied to them.

Across all the categories we studied, participants expressed a range of reasons for delaying HIV testing, including being in a long-term monogamous relationship, always using protection, and the fear of test results being accessible to third parties.

The outcome
Hong Tan, a director at the London Sexual Health Programme, said: “The research shows that, while people are aware of the availability of testing, the stigma associated to the condition along with the belief that they are not at risk is stopping many from taking steps to check their sexual health.”

A poster ad campaign resulting from the research is to be introduced, initially in areas of south London. It aims to reflect the diversity of people who can be HIV-positive and will address stigma, fear and denial, showing that people can live healthy lives with HIV. Ads will appear in doctors’ surgeries, sexual health clinics, family planning clinics and hospital waiting areas. Clubs, pubs, youth and community centres will also be targeted, with posters including details telling people where they can go for an HIV test. The campaign may also be launched online, initially through a Facebook group.

We were pleased that we were able to adapt the online community approach, often associated with the world of consumer marketing, to research this sensitive issue.

The biggest surprise for us was the willingness of eVillagers to engage with the process for an extended period. The community took on a life of its own with a willingness to challenge and engage with one another and the moderators running the project. The main advantage of this extended contact from a research perspective was that participants became more and more willing to reveal thoughts and feelings that were often held quite close to the chest, revealing a depth and breadth of material that was not common in the types of work we more often undertake.

What next?
As public health issues and ‘nudge’ marketing move to the centre of the public policy stage, we are seeing more and more opportunities to apply this way of undertaking research to a wide array of health issues. For researchers, the future of the online community approach looks promising.