Fieldnotes, Good Guys, and the Culture of HIV Care

As an anthropologist and health services researcher who is interested in patient-provider communication, I (GF) observe clinical encounters. I get to see the diverse ways conversations between patients and their providers unfold. In particular, I‘m interested in the “patient-centeredness” of conversations. Did the provider demonstrate empathy? Was the patient treated like a unique person? Did the patient and provider collaboratively develop a personalized care plan?

I’ve been struck by how different conversations can be, ranging from highly patient-centered and attuned to broader socio-cultural contexts to highly biomedical and focused almost exclusively on whether patients take their medications or follow other recommendations.  In the latter scenario, patients are not asked about their unique contexts. Thus, care plans are unlikely to match their lives, reducing the likelihood recommendations are followed.

In our recent work examining conversations between patients and their providers, we noticed variation across eight HIV clinics. The clinics fell into two types: “socio-culturally attuned” or “individually responsible.”  At socio-culturally attuned clinics, providers thought about patients’ contexts. We heard a provider talk with a patient with HIV about strategies to conceive, a potentially sensitive topic. Another provider asked about a patient’s gambling.  And still others were attuned to patients’ challenges getting to medical appointments because of unreliable transportation or unstable housing.

One provider asked a patient about taking his medications by saying, “I know you’re a good guy, so no problems with your meds?”

In contrast, at the individually responsible clinics, we observed providers effectively stop patients from talking about their health or their lives. These providers focused the conversations on whether patients took their medications. One provider asked a patient about taking his medications by saying, “I know you’re a good guy, so no problems with your meds?” This left the patient with only one answer. Good patients (and good people) take their medications. A provider at another clinic asked a patient if he was “behaving,” implying that good patients are like good children and do what they are told. They take their medication.

Notably, we saw consistency within each clinic, indicative of the clinic’s overall culture. In the clinics where we observed socio-culturally oriented appointments, we heard about patients’ housing, transportation and relationships, across our interview and observation data. At the clinics where we observed appointments focused on medication adherence and little or no conversation about patients’ lives, we found a broader culture in which providers perceived their patients as individually responsible for their health behaviors. In our interviews with these providers, we heard them describe patients who were perceived of as not taking their medications as “flakes” or “disasters.” These patients were seen as personally culpable and morally fallible. This perspective can prevent further conversations about how to plan care and diminishes the important role patients can and should play.

In the clinics where patients were seen as individually responsible for their health, providers’ judgmental approaches may be a defense mechanism to stave off uncomfortable conversations.

Most importantly, we found a relationship between the clinic culture and the composition of the care team. Clinics that included social workers and mental health providers—professions commonly attuned to patients’ non-biomedical needs—were more attuned to patients’ life contexts. In the clinics where providers functioned independently, with limited access to social workers or mental health providers, patients were perceived as either good or bad individuals based on their abilities to adhere to their medications.

In the clinics where patients were seen as individually responsible for their health, providers’ judgmental approaches may be a defense mechanism to stave off uncomfortable conversations. If you hear a patient has problems with housing, relationships, or substance use, but feel ill-equipped to address these challenges, having this conversation may simply raise a sense of inadequacy or powerlessness.

It would have been easy, as researchers, to document the judgmental language we heard and conclude that these were “bad” providers. However, our ethnographic approach allowed us to instead think about the culture of HIV care. Just as it is critical for providers to recognize and address challenges patients face in their daily lives, we need to think about providers in the context within which they work. If we want providers to have more patient-centered conversations with their patients, we need to provide them with resources to which they can refer patients when life challenges inevitably arise.

Feature image: Sarah, Point, used under CC BY 2.0