At first, it seemed like just an odd interaction, an anecdote for the researchers to put in their field notes.
They were observing different ways of structuring care for people living with HIV, to ultimately see what model had the best outcomes. But in one interview, a doctor told them that people who ask for Pre-Exposure Prophylaxis (PrEP), which reduces the risk of contracting HIV, are “stupid.” He linked seeking PrEP with promiscuity and unprotected sex, and noted that another provider at the site outright refused to prescribe PrEP because it promoted sex.
“We were surprised, and we put it in our fieldnotes as ‘just an anecdote,’” says Gemmae Fix, an applied medical anthropologist and research assistant professor of health law, policy & management. “But as we began to go to other sites, we heard this real variation in how patients were talked about.” Eventually, Fix and her colleagues realized the different structures of care might have something to do with it.
The resulting study found HIV care providers who mainly worked alone were more likely to think about patients’ keeping up on their antiretroviral therapy (ART) and other care as a personal responsibility, and subsequently characterize patients as “good” and “behaving” or as “bad,” “flakey,” “stupid,” or even “sociopaths.” In contrast, providers who worked in multidisciplinary teams were more likely to describe patients in their life context, and consider larger factors such as housing instability and relationship violence. The study was published in Patient Education and Counseling, with Fix as the lead author and Barbara Bokhour, associate professor of health law, policy & management, as senior author.
As advances in ART have turned HIV from a death sentence to a chronic disease, the way that people living with HIV receive care has changed. Historically, HIV clinics have provided integrated, multidisciplinary care because of the complexity of patient management, HIV-related medical issues, and stigma. But as people living with HIV age, many now have aging-related conditions like diabetes and hypertension. Consequently, the structure of HIV care has been changing, with patients getting more care from a primary care physician.
The researchers visited eight geographically diverse hospitals between April 2016 and June 2017, spending two or three days interviewing HIV care providers and patients, observing interactions, and also observing how doctors, nurse practitioners, mental health providers, and social workers interacted with each other.
The researchers are still working on their analysis for their original study of which of the two models of care—or what combination of the two—has the best outcomes for patients. But in the meantime, Fix says, the difference in culture is striking. “If I personally was a patient with HIV or I had somebody in my family that was a patient with HIV, I would recommend trying to find a clinic that was more integrated,” she says.
At the same site where a doctor said patients seeking PrEP are stupid, Fix and her colleagues also noted that the then-head of the clinic was dismissive and condescending toward patients, dividing people into two categories: “good people” and “stupid people.” The lead clinician also passed judgment on patients, calling them “compliant” when they stayed on top of their ART and “disasters” or “bad people” when they did not. “’Disasters’ and ‘bad people’ were blamed for their non-compliance, which seemed to be associated with moral failure rather than circumstance, context, or quality of care,” the researchers wrote in their field notes.
Although the culture at that one site was particularly striking, the researchers observed that, at other sites where providers worked more independently, they still often viewed ART adherence and other care only in terms of the individual patient, devoid of the patient’s life context. “They have these quick adherence conversations, ‘You’re taking your medication, right?’” Fix says, “versus conversations where they’re asking about gambling, or asking about violence in relationships, or about housing. Those kinds of conversations are substantially different.”
In other words, the authors wrote, “patients were seen as embedded within their socio-cultural contexts” at sites where doctors, nurse practitioners, social workers, mental health providers, and others were all working together. “Patients were described as ‘fabulous,’ ‘fun,’ and ‘lovely,’ but struggling with housing, work or relationships,” the authors wrote.
This attention to context also led to more problem-solving at these sites, the authors wrote. At one site, the researchers observed a nurse practitioner calling a patient who had missed his appointment, and finding that the number was disconnected. “She comments that many patients can’t keep up with cellphone payments,” the authors wrote. Next, the nurse practitioner tried calling the patient’s sister, but could not reach her either. “I will probably call the [housing program] person he’s in touch with,” the nurse practitioner told the researchers, to get an updated phone number for the patient. She did not blame the patient for missing his appointment, the researchers wrote, and even put the onus on herself, saying that she should start checking phone numbers at each appointment to make sure they were up to date.
At another site, a doctor even corrected an interviewer: When the interviewer asked about a “fairly difficult patient” seen earlier, the researchers wrote, the doctor “actively avoided this judgmental language, and instead talked about ‘meeting people where they are.’”
The most striking finding, the authors wrote, was that these conceptualizations—individual moral responsibility versus context—were consistent among providers within sites.
In other words, Fix says, whether or not a provider views their patients in context has a lot to do with the provider’s own context. “I don’t want to do the same thing and use judgmental language in talking about these providers,” she says. At sites where providers are not equipped to address issues like housing or transportation, she said, it would make sense for them not to ask.
“My job as a researcher and an anthropologist is to come in and think critically about what they’re doing,” she says. “What makes this not just an anecdote is critically examining it, and then systematically looking across the data. I really want to understand the culture in which they’re operating, and then let’s use that to inform policy, and really help them.”
Read more about the study in an article co-authored by Gemmae Fixe and Barbara Bokhour for Public Health Post here.