People with HIV who think their primary care doctor lacks sympathy or is unwilling to include them in making decisions are at greater risk of quitting treatment—or not starting it at all—a new study shows.
The findings show that the complexity of the illness, treatment regimen, and overall healthcare system frequently overwhelm patients and fear of stigma often prevents them from beginning or continuing treatment.
Patients need help in understanding their illness and care needs using understandable language to translate complex information, that lets them know what to expect and reinforces the fact that HIV is now a treatable, yet complex, chronic illness, researchers say.
“Today, HIV is considered a chronic, treatable condition. However, this study found that many patients continue to view it as a death sentence,” says lead author Andrea Norberg, executive director of the François-Xavier Bagnoud Center at Rutgers School of Nursing, which provides care for people with HIV, infectious diseases, and immunologic disorders.
“We know that people who are knowledgeable about HIV, who are engaged in care and taking antiretroviral therapy medications remain relatively healthy. Our challenge is to reach those people diagnosed with HIV and who are not retained or engaged in ongoing care. In the United States, this is approximately 49 percent of the 1.1 million people diagnosed.”
‘True listening’
The researchers included 41 studies published between 1997 to 2017. The sample populations included adults with HIV and their healthcare providers. All adults with HIV were between the ages of 18 and 65, represented diverse races and ethnicities, sexual orientations, and gender identities. Healthcare providers included physicians, nurse practitioners, physician assistants, pharmacists, social workers, and others. The included studies had 1,597 participants.
“Providers should use common language, not medical jargon…”
Researchers found that many patients experience stigma and a lack of compassion, often grounded in primary care providers’ ignorance about HIV and transmission risks. The resulting poor communication between providers and patients results in many patients’ failure to seek or remain in care and adhere to antiretroviral therapy medications.
Patients reported feeling that providers “grilled” them, and often assumed they weren’t taking medications. Providers would have more success in getting information from patients if they allowed them to be honest, inquiring about their health goals and telling them how other patients have managed treatment, Norberg says.
Conversely, the researchers found that patients were more inclined to adhere to HIV treatment when their primary care providers showed empathy, true listening, trust, consideration of the whole person, and involvement in decision making.
Skip the jargon in HIV treatment
However, many patients reported that healthcare providers viewed care only as “prescribing antiretroviral therapy medicine.”
“Providers should use common language, not medical jargon, to educate patients about HIV, medications, and how they can live a healthy life,” Norberg says. “They should thoroughly teach them about the disease, the medications and side effects, and the meaning of the tests.”
Providers who help patients navigate the health system, offer one-stop location of services, and provide connections to psychological support, health insurance, medicine, transportation, and other services, can help their patients stay engaged in care, the researchers say.
Primary healthcare providers can enroll in professional education to improve their knowledge about HIV, use of motivational interviewing skills and seek opportunities for experiential learning, observation and hands-on practice working directly with patients with HIV, Norberg says.
The systematic review appears in the Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports.
Source: Rutgers University
