HIV Treatment Needs Engaged Providers

Adult patients with HIV who have compassionate care providers stay in treatment longer, according to new findings

The systematic review appears in the Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports. The review of qualitative peer-reviewed journals from 1997 to 2017 aimed to examine the experience and perceived impact of healthcare delivery on healthcare engagement for people living with HIV receiving primary healthcare in the United States.

Of the 1.1 million people reported to be living with HIV in the U.S. approximately 49% do not stay engaged in care and treatment, according to CDC.

“It is important to figure out why. Specifically, we wanted to better understand the experiences of HIV-infected adults and their healthcare providers with healthcare structures, practices, processes, that impact self-care and support the patient through the processes of HIV testing, linkage to care, ongoing lifetime engagement in care, and subsequent HIV viral load suppression,” says 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.

“The relationship between patients and healthcare providers is critical. It needs to be motivating, accepting, holistic, and the actual visit needs to be more than a prescription for antiretroviral medications,” Norberg says.

Norberg suggests that encouraging providers to listen to patients to understand their health goals and share how other patients manage their HIV and take medications is a step in the right direction “Don’t grill them constantly or give the impression that you don’t believe what they are telling you,” she says.

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Also, not using medical jargon with patients is important, according to Norberg. “Patients need thorough education about the condition, medications, side effects, need for laboratory monitoring, and the meaning of these tests,” she says.

Many patients like receiving all of their care in one convenient location, as well, according to Norberg. “Although this sounds like common sense, the facility needs to be welcoming and accepting of diverse races and ethnicities, sexual orientations, and gender identities,” she says.

“Confidentiality is extremely important. No one wants their personal health information to be overheard by others in the waiting room. Posting signage that reinforces the confidentiality policy can be reassuring.” 

According to the review, some patients perceived that providers were only concerned with medication adherence and not how HIV impacted their whole-life experience. “Many referred to this as ‘grilling’ about medication adherence which inhibited disclosure and damaged the relationship,” Norberg says. “Providers who used a low-key approach and let the patient know that they could be honest got more accurate data.

“We need to remember that for patients the healthcare system is confusing and complex. Whatever we can do to make it easier to navigate is important. Many clinics offer navigation support by nurses, social workers, community health workers and peers with HIV-most patients found these ‘wraparound services to be very helpful. “ 

It was surprising to Norberg that many patients continue to view HIV as a death sentence in the U.S. “It remains critical that this misconception be reframed to HIV is a treatable chronic condition,” she says. “Patients fear the diagnosis-and in many situations-delay or don’t seek care because of this tremendous fear.” 

“There is a need for the healthcare team to bolster competencies in motivational interviewing through experiential learning, observation, and hands-on practice,” Norberg says. “We need to make this a priority in health professions schools and with professionals in practice. Patients express the need for the healthcare team to be ‘with them’ and to demonstrate respect, unconditional empathy, and acceptance. Judgment, directive approaches, and perceived constant ‘grilling’ aren’t effective patient-centered strategies and don’t lead to patients being partners in decision making.”