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What are gay men’s experiences of being diagnosed with an acute or recent HIV infection?

Background

People with newly-acquired HIV experience very high viral loads in the first two months after infection, and are more infectious during this period called acute HIV infection (AHI).

We set out to learn about gay men’s experiences of being diagnosed with an acute or recent HIV infection. Participants were asked to talk about when they learned they were HIV positive, including the impact of being diagnosed during the period of acute HIV infection.

Our study took place during a time when a new test for detecting AHI was introduced in Vancouver, British Columbia.

Methods

A sample of 25 men with an acute (13) or recent (12) HIV diagnosis agreed to take part in the study. Participants were interviewed up to four times over the course of approximately one year. In the first interview, men provided in-depth information about why they tested for HIV and how they learned they were HIV positive.

Interview questions were developed in consultation with our community partners, Positive Living BC and Health Initiative for Men.

This research was carried out as part of a larger program of research with the Canadian Institutes for Health Research (CIHR) team in the Study of Acute HIV Infection in Gay Men.

Summary of Evidence

Experiences of HIV Testing and Diagnosis

For the men in this sample, the most common reasons for the HIV test leading to their diagnosis included:

  • 48% tested after  a recent sexual encounter perceived to be risky (e.g., having condomless anal sex with a partner whose HIV status they didn’t know; the condom broke or came off);
  • 40% tested because of symptoms of seroconversion illness (a flu-like illness commonly associated with very recently acquired HIV infection);
  • 32% tested as part of routine screening.

About half of the men interviewed said that they were not expecting to receive a positive HIV diagnosis.

Most participants said that they were told of their test result in a clinic setting. A number reported being told over the phone while they were at work, at home alone, with a partner, or with family. Many men indicated that receiving a phone call from a clinic or their physician’s office, or simply seeing the clinic name come up on their caller ID, was enough to let them know they were HIV positive.

Overall, participants noted feeling extremely well supported by the professionals who gave them their test results.

Making Sense of an Acute HIV Diagnosis

The 13 participants with AHI reflected on how they felt when they were told they were in the acute phase of HIV infection. Men discussed five key areas related to their diagnosis:

  1. Initial provider and patient uncertainty about what test results meant. The new testing technology created varying degrees of uncertainty for providers regarding the initial interpretation of HIV test results.
  2. Uncertainty about the meaning of acute infection. Participants were told about their acute status at different points in their care, and if told at diagnosis, often noted they were not able to fully absorb the information at the time.
  3. Relationship to starting treatment. Being in the acute phase of infection was described as a major motivating factor for participants who started antiretroviral treatment shortly after diagnosis.
  4. Relationship to having sex. Nearly all participants described an initial period of  refraining from sex after their HIV diagnosis, although the length of time varied. Many men explained that providers initiated conversations about reducing sexual activity during the acute phase. Most participants reduced sexual activity themselves as a result of having high viral loads and being concerned about passing HIV to their partners.
  5. Relationship to identity formation as an HIV-positive man. For most participants, their acute diagnosis had very little impact on the ways in which they reported viewing themselves as HIV-positive men.

Implications for practice

Early HIV diagnosis provides clinical opportunities for:

  • Very early identification of a patient’s HIV status,
  • Interventions such as prevention counseling,
  • Notification and testing of recent sexual partners, and
  • Connection to antiretroviral treatment programs that can lower viral loads and infectiousness.

Our findings also point to the need for additional provider education related to HIV tests used for detecting acute HIV infection.

Men’s experiences raise questions about the circumstances under which someone should be told of their HIV status over the phone, recognizing that informing someone of their AHI result quickly is important to minimize the chance of transmission during this highly infectious period.

The public health goal of reducing the onward transmission of HIV, and complementary goals of providing psychosocial support and connection to care, are important factors to consider whan delivering a positive test result for AHI.

For more information

  • For further information about these findings please see the full article: Grace, D., Steinberg, M., Kwag, M., Chown, S., Doupe, G., Trussler, T., Rekart, M. and Gilbert, M. (2015). Diagnostic Technologies in Practice: Gay Men’s Narratives of Acute or Recent HIV Infection Diagnosis. Qualitative Health Research, 25(2): 205-217. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4272701/
  • For more information on AHI, and tests capable of detecting HIV earlier, pleace see the fact sheet.

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