The Resonance Project

What we heard from gay men and their service providers about: Information Sources 

What we heard from gay men and their service providers about:

Gay men highlighted the difficulty they have in identifying reliable sources of information, especially in a context where this information is voluminous, complex, and often contradictory. For some, this led to distrust. For others, it led to a refusal to pay attention to new information, relying instead on what they already know.

One of the key challenges for service providers was trying to correct misinformation or partial information that men glean from news snippets.

Inconsistent information in the public domain

Many gay men described the information presented to them as excessive, inaccessible, and/or inconsistent. Many gay men were particularly sceptical and critical of media coverage of HIV prevention research, which they considered to be inaccurate, dishonest, sensationalist and contradictory. As a result, some gay men felt that they might as well just wait for the confusion around new biomedical prevention options to pass, rather than take a risk and then discover the risk was greater (or less) than they had understood. In some cases, gay men actively avoided any new information related to HIV prevention.

There are so many mixed messages. I mean one day there’s a pill that prevents HIV and then the next headline says that it failed… they say that with coffee as well; one day caffeine is great for you and it extends your life and then the next day if you’re drinking two cups a day it’s shortening your life and it’s going to give you heart disease. Pos, 50+, VAN1

They’ll come out with all these clinical trials and CATIE comes out with so much information on HIV, you can’t read it all. You really can’t. But then the next newsletter sort of contradicts everything that was in the previous one or the one before that. You know? As far as media goes, they are the worst to read for scientific information. they manipulate it. they twist it. they throw their own curve to it. Neg, 50+, TO4

Conspiracy of big pharma

Several participants expressed considerable distrust of the pharmaceutical industry and of the medical-research establishment. They provided examples of contradictory information and breach of public trust (e.g., tainted blood supply, toxicity of early antiretroviral drugs) and made reference to conspiracy theories linked to profit motives of the pharmaceutical industry. Service providers described observing this distrust among gay men. Additionally, when service provides tried to correct misinformation with some clients, they were sometimes perceived as being part of the conspiracy.

Obviously everything in this world is money driven, period. So you’d be delusional to think that these guys are doing this stuff out of the goodness of their heart. I equate it to iPhones. There’s a new iPhone every three months. There’s a new drug every six months. Pos, 35-49, TO3

I find a lot in the media, they’ll advertise a drug. If you’ve taken this drug in the last two years, you get to sue their ass now. So really you don’t know what you’re taking. You don’t know what this stuff is going to do to you in 10 years. Neg, 35-49, TO4

Withheld information

Some gay men expressed frustration at the lack of evolution in HIV prevention messages, with its persistent emphasis on condom use. They acknowledged that messages around condom use are simpler, but perceived that some information about risk reduction strategies other than condoms was being withheld from them, considered taboo, or forbidden by public health.

I’m sure that public health educators are tearing their hair out because this complicates messages. It’s better when it’s more simple and if you can instil fear in people and tell them ‘don’t have condomless sex, it’s death’. Neg, <35, VAN4

There has been information about it going around for a few years now and at first I was sceptical and wondering ‘Is that a lie? You can’t find anything written about it almost anywhere else. Is this information boycotted? Is it censored? ’ It came from Switzerland. They were saying that ‘for people who have an undetectable viral load and take their meds regularly, the risk of transmission is almost nil. ’ Well, this information was well kept. We were wondering how can we even know if it’s true? No one is passing it on. Where is this coming from? Is this reliable?  Neg, 35-49, MTL4

Finding trusted sources and correcting misinformation

Despite the scepticism expressed by many gay men, some of them identified trusted sources, which were typically healthcare professionals or people working in the HIV field.

It would take a nurse or doctor to tell me you don’t actually need to worry; you’re at super, super super low risk. My friends had told me that. But it took a nurse and doctor to tell me that before I actually realized that: ‘oh OK I was at super low risk and I’m fine.’ Neg, <35, VAN1

Service providers had the impression that gay men approached them to confirm information that they had gleaned from elsewhere (news snippets, awareness campaigns, social media posts), and to reassure them about their understanding of that information. Some service providers explained that they found it challenging to help gay men correct and make sense of these brief and often sensationalized snippets.

Sometimes all they catch is just headlines or just a comment that a friend posts and that’s enough for him to know what the article is about. I find that many guys are just being educated by one sentence or one word sentence and that’s how misinformation becomes. SP, <35, CBO, TO

They’re merging their basic knowledge with whatever the media just said, which is usually sensationalized ridiculously so… That’s when you get the complicated questions because it’s a mixture of like misinformation on the basic sense and then trying to match it with what they’re hearing. Sometimes I’m like, I need to have an hour conversation with you. SP, VAN

Synthesizing a personal strategy

Even when facing a vast and complex array of information  sources and opinions, many gay men described making their own autonomous decisions after reviewing information that they could understand and that they deemed credible. Some of the men noted that they had a prevention strategy that worked for them to reduce anxiety and to rationalize their personal balance of risk avoidance, pleasure seeking and intimacy in a way that incorporated the information they trusted.

When you read ‘the US FDA approves HIV prevention pill’ I’m like how could I have been in such a news bubble that I didn’t read something about this? I’m now intrigued and I want to take time and be like well let’s find out when this happened, what happened with this. But in the meantime – condoms. By default it’s what’s worked for me so far. Hopefully it’ll always keep working. Neg, <35, VAN4

Patten S, LeBlanc MA, Jackson E, Adam B (2016). The Resonance Project Community Report: Emerging biomedical discourses on HIV among gay men and their service providers.

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