Table 2

Representative quotes from people living with HIV regarding the Internet

Quotes of people having positive experiences


HIV treatment information

"I look for health information on the Internet such as the evolution of medicines in other countries, side effects, types of medicines and the quality of them; try to keep up-to-date so then I can inform to other people." Male, 38 years

"I look for information on the Internet to receive some advice, to be prevented of side effects of medicines; how to detect some [HIV-related] diseases, which medicines they take to combat those diseases, types of prophylactic medicines. It's a lot of information." Male, 36 years

"When I wake up, I turn on my computer, it's the first thing I do. I read some magazines and journals related with HIV... I read all the headlines first. I wish I could read on the Internet 'the cure for HIV was just discovered.' I haven't read something like that yet in the headlines." Male, 36 years

"I like the forums because you can discuss/propose a topic. For example, I'd like to receive topics of recent updates of the disease/research about HIV. For example, to post something that happened to you and how to deal with." Male, 28 years

"I think I know quit a bit about the HIV, medicines, side effects, a lot of things. At the same time, I don't wanna miss anything" (smiles).... I even programmed alerts in Google, so I receive information of anything on what's going with HIV. I think it's important the technology because without it right now I could be like a blind fish, not knowing where to go, and following the advice of doctors. I think It's not enough; so for me it's important to be informed." Male, 36 years

HIV transmission risk reduction information

"After I was diagnosed with HIV, I looked for information on the Internet on lifestyles, on how to take care on my skin, on how to protect other people." Male, 43 years


Quotes of people having negative experiences


Overwhelming

"I get info through the Internet, it's the most important source of information for me. You can find good and important information but also there is a lot of silly information. Internet can inform you but also can confuse you, it could increase your worries.... I discuss what I found on the Internet with my physicians and my psychologist." Male, 36 years

"When I changed my antiretrovirals, I wanted to know the possible adverse effects of the new medicine (efavirenz). I found on the Internet that it produces nightmares, etc. After reading that, I started having nightmares. So then, I decided NOT to go to the Internet anymore to read about the updates, new adverse events, etc., because you get psycho." Male, 43 years

"I don't like the Internet because is kind of complicated. For example, in the chat, you can start chatting with one person and then other and other one; and that is what I don't like." Female, 28 years

Potential for misinformation

"Anyone can say whatever on the Internet and this is not always true." Male, 35 years

Waste of time/money

"I like forums on the Internet because I can read about experiences from others that I might shared with. Unfortunately the forum that I used [name of forum] didn't work very much for me. The first days that I was diagnosed with HIV I posted several questions on the Web, and I never got response. The most I hate is wasting my time, energy and even money, in being connected, and at the end, nobody responds." Male, 36 years


Curioso and Kurth BMC Medical Informatics and Decision Making 2007 7:24   doi:10.1186/1472-6947-7-24

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