New research shows that doctors lob plenty of directives at minority HIV patients, insisting that they take their medications. But they don't spend additional time talking about why doses get missed in the first place.
It has been well established that minority HIV patients have poorer outcomes and less access to care, according to Kyle Murphy, of the Washington, D.C.-based National Minority AIDS Council (NMAC). The new findings raise further concern about a well-known communication failure, he told Healthline.
Michael Barton Laws, a medical sociologist at the Brown University School of Public Health, analyzed 404 recorded visits between patients and providers. Blacks made up more than half of the 435 patients in the study, followed by whites, and then Latinos.
The study, published Jan. 25 in the journal
Nagging Doesn't Work
Laws suspects that rapid-fire directives are something all patients experience when seeing their doctors, regardless of race or background. But he said research shows that ordering people to do something again and again doesn't work. Instead, behavioral counseling may be a better approach.
“If you confront somebody and say, 'You're screwing up; you've got to do different,' the reaction is to push back, say, 'You're a jerk, screw you,'” he told Healthline. “You're not helping the person figure out their own motivations and their own conflicts and problems and how to solve them.”
Laws told the story of one doctor who asked his patient why she didn't take her required dose of medication. “She told him she had to get the girls ready for church on a Sunday morning. He told her to put a smiley face on her pillow the night before to remind herself.”
He called the patient's response “ridiculous, and obviously an excuse.” As for the doctor? “Wouldn't it make more sense to say, 'OK, how can we help you with that?'”
Distrusting the System
Murphy said he also believes that behavioral counseling can be effective. The NMAC is already working with government organizations, such as the U.S. Department of Health and Human Services and the Centers for Disease Control, to bridge the communication gap between doctors and patients.
In New York City, Mount Sinai Hospital treats thousands of minority patients with HIV, many of them immigrants from Latin America.
“They truly believe this condition is something created by the government," Lugo said. "A lot of my gay male Hispanic patients say, 'This is a disease that was created to get rid of gays.'”
She said they come from countries in which they get treated by the Red Cross and then sent on their way. “To engage in the system the way we do where there's a doctor for continuity and follow-up is something new to the patient," Lugo said. "If you can't establish a relationship right off and engage them in care, they're lost.”
Stigma and Identity
Laws believes that all medical encounters are cross-cultural to a degree. “There's a different universe that doctors and patients live in,” he said.
He said people define their illness based on psychological and sociological factors, which run the gamut across cultures. For example, telling someone to take a protease inhibitor so a virus won't replicate may not be a call to action for someone who doesn't understand the science.
“Some people say they don't want to take [their medications] because it reminds them of a mistake, or they don't want people seeing them take them,” Laws said. “When a person is diagnosed with a chronic disease like HIV or cancer, it's really a challenge to their identity.”
And the stigma associated with HIV can worsen the trauma.
Communication Is Increasingly Vital
Laws is concluding a study on the effects of behavioral counseling for HIV patients. The visits he recorded for his study occurred at four HIV specialty clinics in large U.S. cities. Of the 45 providers who participated in the study, all were white except for two black women, one Latino, and 11 Asians.
Laws admits that one limitation of the study is its lack of minority providers. But it's also a reality in HIV care. He suspects that the scarcity may be even more pronounced outside of urban areas.
Communication problems with HIV patients regarding medication adherence will likely be magnified as the shift toward primary care continues.
People with HIV now live well into old age, and many develop other health problems, such as diabetes and high cholesterol. As a result, some patients now see doctors who do not necessarily specialize in HIV.
Murphy said this underscores the need for effective communication with minority patients about their HIV medications. With more things to talk about in a short doctor visit, the time to discuss HIV shrinks.
Laws said more money needs to be funneled into research to better understand the patients being treated. “It doesn't matter how good the pills are if the right decisions aren't made about who to prescribe them to, or if the people don't take them,” he said.