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.
Incorrect information is available on the Internet.
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.
To a certain extent he dealt with HIV by becoming informed.
Keeping abreast of new HIV information helps her to cope. (Read by an actor.)
And normally information changes from time to time, and maybe there is certain information that you need… depending on your, maybe things like, how you adhere to your drugs. Drug resistance and things. And all the other research that is coming up.
So you need to keep abreast of what is happening. So as to cope with your own condition.
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.
Believes that basic sex education in schools is failing many young people.
There's an interesting guy I spoke to who basically said, 'Well, if the girl wants me to use a condom I know she was safe, right. But if she didn't want me to use a condom, then I'd put one on [laughter].' I mean using that weird logic, I was saying, 'What about pregnancy? Have you ever thought about that?' 'Well I withdraw,' and I was saying, 'Well you can still make them pregnant.' So basic information like that is not getting through' And you are not taught about gay sex in school.
He did not gain the knowledge and skills he needed to have safe sex.
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.'
Coming from a country where sex and HIV was not discussed meant that he misinterpreted advice...
I just have to say one thing. Every single person I met… I mean that… I was 24, 25 or 26. But every single gay man I was speak to, they thought I'm like 16, 17. I looked really young then. And they always give me lots of long lecture about HIV, AIDS. 'You have to be very careful.' So I know… I already worked out I had to be very careful. So based on that, sex things is just… I thought sex… HIV is… you only can catch from man to man, you know.
So that's another thing in my subconscious. So I always worry I can't have sex with a man. So even kissing, I was concerned. If I kissed… I thought I gonna catch something from people. It, it just… It's kind of a cocktail, I don't know, background, Catholic traditions, and from Asia. And then the, the scare… being paranoid about HIV AIDS.
Says that some Africans may believe that only thin and sickly looking people can have HIV while...
So I think that's the problem that we are facing there. So every person thinks that it won't catch me, it will catch another person because of the way the message is told. It's very, very difficult yeah. And in the end, the message is lost…
Because if, for example if I see two women and one is good looking and the other one is thin. You see I would take that the one who is thin to be HIV positive. So I'm looking at the outside. So I mean, so that's the reason why.
When somebody's healthy, they're considered to be fit and free from HIV. But if a person from…. they are just born thin and you know sickly, they're taken to be HIV positive. You could be going round and yet you have it. And you're passing it over and you don't know, just because you look healthy.
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).
Says that we need to be clearer in educating people about which body fluids can transmit HIV.
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.
Believes that other sexually transmitted infections can make HIV infection more likely.
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').
Initially he believed he could restrict his sex life because he was not aware of the full range...
Last reviewed May 2017.
Last updated May 2017.