Where to find information about HIV

People learnt about HIV from television, leaflets, newsletters, books, attending support groups, the Internet, academic publications and talking to health professionals and friends. Clinics often provide a wealth of written information, including booklets and magazines such as Positive Nation. The quality of information about HIV varies greatly, and so people said you need to weigh it up carefully.

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When it comes to information, people have very different needs. Of those we interviewed people generally wanted some information, but they also wanted to avoid information overload: 'I'm not sure that showering me with heaps of information would be necessarily productive.' Sometimes the danger with too much information is that you can get distracted from looking after yourself: 'I sort of hid behind information,' said one man. However, gaining extensive information about HIV really helped some people.

People said that there were limits to our knowledge about HIV so our understanding about some things seemed shaky. For instance, why is it that some people survive with HIV without medication and without getting sick?

The success of modern anti-HIV drugs means that people do not need to be as well informed about treatments as in the 1980s and early 1990s when many felt that information could mean the difference between life and death. Treatment information is very complex and constantly growing, and only a few people we talked to tried to keep up-to-date with it.

Keeping up with information about safe sex mattered to a number of people. Anal and vaginal sex without condoms is still the most common way that people get HIV. Only a small proportion of people get HIV through oral sex as the risks are much lower. But sexual activity is not the only way people can be infected by HIV. Other ways people can be infected are; injecting drugs or receiving medical care with unsterilised equipment, women can pass HIV on to their unborn baby’s during pregnancy, labour or delivery, tattoos and piercing and blood transfusions and blood products (although this has dramatically reduced since blood screening was introduced in the 1980’s).

Some of the gay men we interviewed believed that people should all now know about how HIV is caught, since safe sex information has been around for two decades. However, sex education in schools can be patchy and young people can still miss out on safe sex information. The number of older people (over 50) who are newly diagnosed with HIV is increasing which may be because they are also less knowledgeable about HIV and less likely to sexually protect themselves. Some people said that there had not been a high profile general education campaign like the frightening 'iceberg and tombstone' since the 80s and so another public education campaign was long overdue. One man said he was 7 years old at the time of the tombstone ad and so he missed out.

Gay men visiting or migrating to the UK from other countries where sex is not discussed openly may also lack information, or may have received misinformation about how HIV can be contracted. Additionally, people don't just absorb information like a sponge' they adapt it to their own way of thinking. This means people can get things wrong. One man believed 'because I was a good boy, a good guy… because I was so religious, I couldn't get HIV.'

Differences in professional opinion and knowledge means that messages about safe sex can seem contradictory. And safe sex, like any activity in life, is not completely without risk. So people need to decide for themselves about the level of risk they are willing to take. For instance, some people used condoms for oral sex because they were not willing to take the small risk of transmission. One man used a number of condoms at once for vaginal sex (although this is not recommended).

it is possible to pick up other (perhaps drug-resistant) strains of HIV if you already had HIV and had unprotected sex with other people who were also HIV positive (known as 'superinfection'), but this is very unlikely if both partners have an undetectable viral load. Others said there were other serious STIs that you could pick up through unprotected sex, some of which could make it easier to pass on HIV to uninfected people.

Finally, there is sometimes a gap between our knowledge of safe sex and what we do in sex: 'there's much more to sex than just knowing things.' One man who became infected with HIV through unprotected anal sex said, 'I could have written a book on what was known about HIV, I was the good gay, I knew all about HIV.' (See 'How people became infected', 'Casual sex' and 'Sex in relationships').

Last reviewed May 2017.

Last updated May 2017.


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