HIV-positive adults with compassionate caregivers begin and continue treatment longer
Rutgers researchers find that patients who perceive their primary care providers as lacking empathy and unwilling to include them in decision-making may abandon treatment or not seek treatment at all
According to a Rutgers study, adults living with HIV are more likely to continue life-saving treatment if their primary health care providers show respect, unconditional empathy without judgment and demonstrate their ability to engage with patients in decision-making to achieve their goals.
The systematic review is included in the Joanna Briggs Institute's database of systematic reviews and implementation reports.
The results showed that the complexity of the disease, the treatment regime and the overall health care system often overwhelms the patient and that fear of stigma often prevents them from starting or continuing treatment. The researchers found that patients need help to understand their illness and care needs by using understandable language to translate complex information, to let them know what to expect and to reinforce the fact that HIV is now a chronic treatable, but complex disease.
"Today, HIV is considered a chronic and treatable disease. However, this study revealed that many patients still consider it a death sentence," said lead author Andrea Norberg, executive director of the François-Xavier Bagnoud Centre at the Rutgers School of Nursing, which provides care for people with HIV, infectious diseases and immunological disorders. "We know that people who are knowledgeable about HIV, engaged in care and taking antiretroviral drugs remain relatively healthy. Our challenge is to reach people who have been diagnosed with HIV and are not being retained or engaged in continuing care. In the United States, this represents about 49% of the 1.1 million people diagnosed."
The researchers included 41 studies published between 1997 and 2017. The sample included adults living with HIV and their health care providers. All HIV-positive adults were between 18 and 65 years of age and represented diverse races and ethnicities, sexual orientations and gender identities. Health care providers included physicians, nurse practitioners, physician assistants, pharmacists, social workers and others. The included studies had 1,597 participants.
They found that many patients experience stigma and a lack of compassion, often based on primary care providers' ignorance about HIV and the risks of transmission. The resulting miscommunication between providers and patients means that many patients do not seek treatment or remain on antiretroviral therapy or do not adhere to treatment.
Patients reported feeling "burned" by providers who often thought they were not taking medication. Mr. Norberg suggested that caregivers would be more successful in obtaining information from patients by allowing them to be honest, learn about their health goals and tell them how other patients have managed their treatment.
Conversely, the researchers found that patients were more likely to adhere to HIV treatment when their primary care providers showed empathy, genuine listening, trust, consideration for the whole person and participation in decision-making. However, many patients reported that health care providers considered care only as "prescribing antiretroviral therapy drugs".
"Health care providers should use a common language, not medical jargon, to educate patients about HIV, medications and how they can lead healthy lives," Norberg said. "They should teach them in detail about the disease, medications and side effects, and the meaning of the tests."
The researchers noted that providers who help patients navigate the health care system, provide a single window of services and provide links to psychological support, health insurance, medications, transportation and other services can help their patients stay involved in care.
Primary health care providers can enroll in professional training to improve their knowledge of HIV, use motivational interviewing techniques and seek opportunities for experiential learning, observation and practice by working directly with HIV patients, Norberg said.
