National survey reveals information habits of people living with HIV


From its beginning, CATIE has shared information with people living with HIV so that they can take better care of their health. In Fall 2015, we undertook a national online survey to better understand the information needs of people living with HIV today. The survey results may confirm what you already know about your clients’ information needs. Or perhaps they contain a surprise or two. Whatever the case, the results help guide all of us in how we can best serve our clients.

The info people need

We asked people what topics in HIV and HIV treatment were important to them. When we asked about HIV generally, priority topics chosen by respondents included:

  • How to stay healthy
  • HIV and aging
  • HIV’s effects on the body
  • Preventing HIV transmission

When we asked more specifically about HIV treatment, priority topics included:

  • What I need to know about HIV treatment
  • What I need to know about HIV treatment if I have other health conditions
  • How to deal with side effects

How people get their info

We also wanted to know how people accessed information about HIV and HIV treatment. The majority, 58%, preferred to access information both in print and online. The top three sources of information were: doctors/nurses (80%), the Internet (77%) and community organizations (41%).

We also asked about the format of materials. Respondents reported that online content, fact sheets and brochure/pamphlets were top priority formats for receiving information.

A bit about who responded

438 people with HIV responded to the online survey. Of them:

  • 76% were men, 22% women and 2% identified as trans;
  • 45% were diagnosed in the past 10 years, 27% were diagnosed 10-19 years ago, and 28% were diagnosed 20+ years ago;
  • 92% are currently on treatment.

More info

These are just highlights of the responses; the full report, Valued and Needed Information for People Living with HIV: 2015 survey results, is available for viewing. Perhaps this information will help you make decisions about programming for your clients. Perhaps you can use it in a grant application. CATIE would be especially interested to learn how these results compare with your own experience. Please contact me if you would care to share:


In his role within the Knowledge Exchange team at CATIE over the past 10 years, David McLay has helped people living with HIV or hepatitis C or at risk for one of the viruses by providing information so they can make decisions about their health.


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