A conversation about the connection between HIV and shame with Abigail Batchelder, M.P.H., Ph.D., clinical psychologist and associate professor at Boston University

HIV is a highly stigmatized disease due to its association with sexual orientation and drug use. For this reason, people recently diagnosed with HIV may experience significant shame. It's also known that shame is linked to negative health outcomes, including stress, avoidance of healthcare and poor coping, particularly among stigmatized groups. However, shame can be a difficult variable to measure because patients may be unaware of it, confuse it with other emotions like anxiety or be unwilling to disclose it.

To better understand how shame manifests following an HIV diagnosis, Abigail Batchelder, M.P.H., Ph.D., associate professor in the Departments of Psychiatry, General Internal Medicine, and Community Health Sciences at Boston University Chobanian & Avedisian School of Medicine, and her team analyzed video recordings of 319 people diagnosed with HIV within the prior three months. They measured shame in three ways: asking patients directly about their shame, analyzing the specific words patients used in transcripts of their narratives, and coding their body language, including whether they slumped their shoulders, narrowed their chest or tilted their head down.

Notably, the three measures did not consistently agree with one another, and each predicted different outcomes. This suggests that no single method captures shame fully. Batchelder recently spoke with Managed Healthcare Executive about the complexities of shame as an emotion and why healthcare professionals need multiple approaches to recognize and understand it.

The study, ‘Multi-modal measurement of shame in relation to perceived stress and avoidance coping in the context of recent HIV diagnosis,’ was published in the Journal of Health Psychology last month.

This interview has been edited for length and clarity.

MHE: What are some of the health implications of shame?

Batchelder: Shame has been associated with a lot of different things. It's involved in and has been associated with negative consequences associated with a range of mental health conditions, but also in the health psychology realm in which I work, it mostly has been associated with suboptimal engagement in care. If there is a lot of HIV stigma, maybe an individual would avoid going to an HIV appointment or even bringing out the bottle of medication.

MHE: In the study, you write that shame can be challenging to assess via a self-report. Why is that so?

Batchelder: Shame is an interesting emotion. It's what we call a ‘self-conscious’ emotion—it is an emotion about the way we perceive ourselves, perceiving ourselves to be flawed or unworthy and so it can lead to us not wanting to share it. There might be shame about wanting to share it and therefore endorse it in a self-report.

There are also some limitations for individuals to differentiate between guilt and shame, which is not always taught. Each of those things also requires someone to be willing to tell us how they're feeling, and if someone's ashamed about feeling shame, we might expect that some individuals would be reluctant to respond accurately.

MHE: You also write that among stigmatized groups, shame rather than stigma, may best predict health outcomes. What is the difference between stigma and shame?

Batchelder: Stigma is the manifestation of individuals in a society treating one group as less valuable than another. It's about a differential of perceived worth, and that has negative consequences on the individuals who have those identities or behaviors that are in the stigmatized group. That can be internalized, but it can also be anticipated, and then you feel the consequences of things like discrimination.

So, stigma is what's happening in society, usually perpetrated by the masses in general, or subsets of them. Shame is the emotional response to feeling bad about oneself that can be a consequence of stigma.

Some people have described shame as the most painful emotion because it's about the self and we're social creatures as humans, so it's understandable that that's a terrible, painful emotion.

MHE: What were the three ways that you assessed shame in this study?

Batchelder: We looked at three factors: the self-report, linguistic analysis and analysis of non-verbal posture.

The self-report included several widely used emotion measures that assess frequency and intensity of emotion. We also looked at other self-conscious emotions because some people aren't always great at telling the difference between shame, guilt or embarrassment.

We rigorously measured the postural movements. We had videos of the individuals who took part in the studies, and we had three coders who assessed the first 10 seconds of each video for the three movements (head down, chest caved and shoulders hunched) and the frequency and intensity of them.

The self-report was measured by the proportion of the words used in the narrative that were part of that dictionary.

MHE: What were the results of this study?

Batchelder: When we looked at each of the three measurements on their own, we found that we had a good model fit, but they didn't hang together in a second order, meaning that they might be measuring slightly different things.

We also looked at the relationship between each of those and stress and avoidance coping. Notably, we found that self-reported shame was associated with higher stress and both cognitive and behavioral escape avoidance, like drinking to avoid stress or fantasizing about what if circumstances were different.

Word choice was associated with less stress, which in some ways is not surprising. Those who talk about their shame might be more likely to feel less stressed, because maybe they're more in tune with some of their emotions and more comfortable.

Postural movements were also not significantly associated with stress. They were associated with distancing, which is different than avoidance coping. What that tells me is that coming into a clinical encounter, self-report might be helpful, but if someone's demonstrating some of the visual depictions of shame, we might want to check in on them, because they might be avoiding the topic or feeling overwhelmed.

MHE: What are ways that you can be more supportive for somebody who may be experiencing the shame?

Batchelder: By being fiercely compassionate, because many times when someone is coming to an encounter where they might feel shame, there might be anticipated stigma. Therefore, we can read what might be neutral cues from the other person as judgmental. If we can get in front of that and be explicitly compassionate, in words and body language, affirming what they're saying, I think we can create a safe space.

We don't know what it's like to walk in someone else's shoes, but we all know what it's like to feel shame, sadness, joy or whatever emotion it may be, and so that can be a point of connection.