Are Doctors Ignoring The Invisible Impacts of HIV Stigma?

A recent study from the University of Washington published in the online medical journal AIDS and Behavior revealed that healthcare providers may not be honing in on what people living with HIV struggle with most.

Furthermore, they especially may be overlooking the detrimental effects of stigma, as reported by NAM AIDSmap.

Unlike previous research, this study recruited a more diverse group of individuals living with HIV. Led by Dr. Rob Fredericksen, the study involved a total of 206 people who had received care from one of five selected clinics in Birmingham, Ala.; San Diego, Calif.; San Francisco; Boston, Mass.; and Seattle, Wash.

Thirty percent of participants were cisgender women, 9 percent were transgender women, 11 percent were people under 30, 22 percent were over 55, 33 percent were Black, and 28 percent were Latinx. Twenty-five percent were poorly engaged in care, 29 percent had a detectable viral load, 30 percent had been diagnosed in the past five years. Ten percent lived in rural areas.

The participants were asked to rank the priority issues to be covered during a routine medical appointment. Those living with HIV consistently ranked things like stigma and a lack of social support as their biggest issues — unlike their healthcare providers, who mostly ranked substance use as a top issue.

The healthcare providers and people living with HIV were given a list of 25 possible issues to address in a typical clinical visit and then asked to rank their top eight priority issues. They were also asked to list their three least important issues.

People living with HIV ranked their top issues as such:

1. Medication adherence
2. HIV and treatment symptoms
3. Depression
4. Sexual risk behavior
5. HIV stigma
6. Pain
7. Physical function
8. Social support

The healthcare providers ranked the issues much differently:

1. Substance abuse
2. Depression
3. Medication adherence
4. Alcohol abuse
5. Tobacco use
6. Sexual risk behavior
7. HIV and treatment symptoms
8. Cognitive function

The folks living with HIV ranked the three lowest priorities as anger, shortness of breath, and tobacco use, while the clinicians ranked shortness of breath, positive affect, and spirituality/meaning of life as the least important.

The biggest disconnect between the groups was in regards to substance use, which the providers overwhelming put as highest priorities.

While a whopping 94 percent of the clinicians put substance abuse in their top eight, only 36 percent of people living with HIV included it. Most of the clinicians also put tobacco use in their top eight (71 percent), while only 15 percent included it (and this was the lowest overall ranked item for people living with HIV).

What the healthcare providers seem to be overlooking most of all were the social issues people living with HIV face. While 48 percent of patients included stigma in their top eight issues, only 18 percent of clinicians included it.

Those who were younger, Black or Latinx, or who were recently diagnosed were more likely to see stigma as a priority issue.

Though certainly substance use is a big issue for many people living with HIV, the clinicians often failed to see that stigma itself may be one of its biggest driving forces (as well as fuel for depression), and therefore needs to be addressed first.

As one participant put it, “If you don’t get over the stigma…none of this matters. The isolation is going to come in, right? You’re not going to even care about the symptoms or the treatments. You’re not going to take care of your medication, you’re going to start that risky behavior.”

“[HIV stigma] is all you think of,” stated another person living with HIV from the study. “It causes depression and then you want to use [drugs]. You’re going to socially isolate yourself, because you don’t want to deal with people like that.”

Some of those who’d been living with HIV for the longest discussed how their top issues had changed over the years: “Now, the reason why I have them in this order is because when I first found out about me being diagnosed, these first three [depression, HIV stigma, spirituality/ meaning of life] hit me hard. I was depressed. I didn’t want to be around…I didn’t know how to handle it at first.”

In conclusion, Fredericksen and his colleagues noted that “many patients felt it important that their health care address the at-times overwhelming context-based problems in their lives,” and suggest that strengthening the doctor-patient relationship will improve the likelihood of successfully addressing issue like stigma, depression, and substance use.