Veronica Brady and her team at the University of Texas Health Science Center, Houston, sat down with 37 people diagnosed with HIV or AIDS to ask them what that felt like.
“The results were really eye-opening and sad,” says Brady, PhD, RN, from the Cizik School of Nursing with UTHealth, Houston.
Many of the people Dr. Brady and her team spoke with were diagnosed through routine or random testing. They ranged in age from 21 years to 65 and said they did not know how they had been infected and felt shocked, freaked out, scared, and in a state of disbelief.
Their conversations about being diagnosed with HIV, presented at the annual meeting of the Association of Nurses in AIDS Care in New Orleans, also described how symptoms of the disease or side effects from treatment can have a huge impact on the daily lives of those affected.
Jesse Milan Jr., president of AIDS United, an HIV advocacy organization based in Washington, D.C., says he recognizes all of these feelings from his own experience with HIV after being diagnosed more than 40 years ago.
“All of those have come up over the years,” he says. “They are all relevant and important at different times.”
For Mr. Milan, less was known about the virus at the time of his diagnosis, and he watched loved ones die. He lived to see the introduction of antiretroviral therapies and receive treatment when his partner and many of his friends did not.
Effective treatments
There is a marked difference between the reaction of people diagnosed with HIV years ago and those diagnosed more recently, Dr. Brady explains. Those diagnosed before much was known about the virus and before there were effective treatments were more frightened, she says, whereas people hearing the news recently are much less worried and understand that if they take their medication, they will be fine.
Still, Mr. Milan says when he talks to people diagnosed now, they seem to experience more shame and embarrassment than before. Because it is long known how to prevent HIV infection, they often worry what people will think if they disclose their status. “It makes things harder for people diagnosed today,” says Mr. Milan. “There is a different level of embarrassment tinged with, ‘Why was I so stupid?’ ”
Diagnosis can also be hard on health care professionals, says Dr. Brady. “You never want to tell anyone they’re sick with a chronic disease, especially younger people,” she adds. “You know you’re adding a burden to someone’s life.”
Symptoms and side effects of treatment also had an important impact on the people in this report, with most aspects of their lives affected, including work, relationships, mood, and daily activities.
Clinicians should be supportive and spend some time sitting with patients as they come to terms with the diagnosis and its implications. They should help them understand what to expect and talk about how – or whether – to talk about their status with family and friends. “You need to show you care about the person and that they are not alone,” Dr. Brady says.
And most of all, clinicians need to explain that patients can live a long and healthy life and go on to become whoever they want to be. “Twenty years ago, we wouldn’t have as hopeful a message as we do now,” she says.
Hope is the most important thing for doctors and nurses to communicate to their patients. “There are medications available, and it will be okay. You don’t have to die,” Mr. Milan says. “That’s the core message that everyone needs to hear, whether they were diagnosed 30 years ago or 30 minutes ago.”
A version of this article appeared on Medscape.com.