How do you communicate HIV risk information?

“What is the risk of HIV transmission through condomless anal sex if I am the receptive partner?” “How low is the risk if my viral load is undetectable?” “What’s the risk if my partner was in the acute phase of HIV infection when we had sex?”

Questions about HIV risk aren’t easy to answer and—with all the recent advancements in our understanding of HIV transmission and prevention—things aren’t getting any easier!

“High risk” and “low risk”

The most common approach to communicating HIV risk information is the use of words to describe categories of risk, such as “high risk” and “low risk.”

A commonly used resource that uses this approach is the Canadian AIDS Society’s HIV Transmission: Guidelines for Assessing Risk. These guidelines were first published in 1998 and have gone through several revisions since, with the latest released in 2005. While still useful for answering some questions about HIV transmission, the risk model in these guidelines has yet to integrate some of the newer information on HIV, such as viral load, post-exposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP).*

Experts in some parts of Canada have used the same approach to communicate risk information on some of these newer topics. An example is the 2014 consensus statement on viral load and risk of HIV transmission, which was developed by a group of experts convened by the Institut national de santé publique du Québec. This statement provides guidance on how to communicate the risk of HIV transmission when the viral load in the blood is undetectable.

Some Canadian community-based organizations have also used the risk-category approach to create client-based resources, such as the Health Initiative for Men’s “Know your risk” website, and the “Sexposer” mobile phone app developed by the Portail VIH/sida du Québec and AIDS Community Care Montreal.

Different interpretations of risk

While the use of risk categories is undoubtedly the most common approach, is it the most effective? Do risk categories resonate with how people make safer sex decisions and actually promote more informed decision-making? Research has yet to answer these questions, but they are important for people working in HIV to think about.

A major limitation to using words to describe risk is that they can be interpreted subjectively: “high risk” may mean one thing to person A, and a completely different thing to person B. This can make it difficult to create a common understanding of HIV risk from client to client. It can also create a disconnect between a service provider’s intended meaning and a client’s actual interpretation.

Subjective understandings are influenced by a wide range of factors, such as a person’s relationship with HIV and risk in general. For those who are more risk-averse or have HIV-related anxiety, any level of risk may be considered “high,” no matter how “low” you say it is. For some, “high” may mean that the risk of HIV transmission is 100 per cent, which we know is never the case. Others may have engaged in a “high-risk” activity several times and not become infected, thereby lowering their perception of what “high” means to them. These are just a few examples of how interpretations of HIV risk can vary.

Possible solutions

What can be done to bridge this disconnect and provide more meaningful guidance to clients? One solution is to be very explicit and define the words you use. If you say a certain activity is “high risk,” be sure to define the criteria used to determine if an activity belongs to this category.

Another potential solution is to use numbers, which is what clients often want (here is a summary of what we know about the risks from an exposure to HIV). While these numbers can be useful, it is important that they be packaged with additional information to ensure they aren’t misinterpreted. As was succinctly pointed out to me in an interview with a service provider, “numbers can be a great tool to help people conceptualize risk but can also be very confusing…. I always contextualize it and ensure that people understand how these numbers were calculated and what they mean. When I do this, many clients realize that numbers are not really the answer they are looking for.”

A tailored approach

It’s clear that risk communication needs to explore a client’s perception of HIV risk. A colleague of mine uses an interesting strategy. Instead of saying the risk is “high” or “low” based on available guidance (a top-down approach), my colleague asks clients to define their own level of risk based on what they do sexually. With this bottom-up approach, there is no wrong answer. A client may only engage in oral sex and describe their risk as “high,” which is fine as long as the client understands that there are activities which are much higher risk than what they define as “high,” and other activities that are lower risk.

This approach takes into account a client’s perception of HIV risk, and also provides an opportunity to explore reasons for these perceptions and correct any misconceptions. Discussions of HIV risk may be more meaningful, and misinterpretations less common, if a client is allowed to work from their own understanding and perception of risk.

Of course, a limitation to this approach—and much HIV risk communication work—is that it requires a tailored approach. This is not always possible, as many interactions with clients are not in-person or one-one-one, but via campaigns, websites, and print resources. For these types of interactions, messages on HIV risk need to be broadly applicable to a wide range of individuals. Herein lies a major challenge of effective HIV risk communication.

Moving forward, it will be important to explore how new technologies, such as interactive websites and mobile phone apps, can be used to create a tailored approach to HIV risk communication. Such tailored approaches need to explore risk perceptions, in addition to other contextual factors that can affect HIV risk (e.g. relationship dynamics, types of sex partners, and mental health and substance use).

* In 2014, the Canadian AIDS Society published a document titled HIV transmission: Factors that affect biological risk with comprehensive information on viral load, PEP, PrEP and other biological factors. However, it did not include an updated risk model.

James Wilton has worked for over five years as the Biomedical Science of HIV Prevention Coordinator at CATIE, where his work focuses on the implications of new biomedical research for HIV prevention. James is currently completing his master’s degree of public health in epidemiology at the University of Toronto and previously completed an undergraduate degree in microbiology and immunology at the University of British Columbia.