Word choice matters — a lot — when it comes to research. That’s the main takeaway from a new article co-authored by Edson College of Nursing and Health Innovation Assistant Professor Angel Algarin and published in Health Communication.
“Researchers in any field should be cognizant of the language they’re using to describe the people they study so they don’t inadvertently add to the use of stigmatizing language,” said Algarin.
For the article, Algarin and his co-authors performed a content analysis of HIV-related stigmatizing language published in scientific literature from 2010 to 2020.
They found 26,476 peer-reviewed articles that used variations of the stigmatizing term “HIV/AIDS-infected.” More than a third of these articles came from the United States. And the journal that used the stigmatizing language the most was one that focused on general science and medicine.
“The use of stigmatizing language in science is concerning as the words we use are read by health care professionals, policymakers and journalists, who in turn, use this same language when discussing topics surrounding HIV because they trust that we are the experts,” Algarin said.
The consequences of using terms that stigmatize entire groups of people are well documented. As a social epidemiologist and interventionist, Algarin’s previous work has focused on the impact of stigma on people living with HIV.
In his 2020 articles published in AIDS and Behavior and AIDS patient care and STDs, he found that people living with HIV who experienced higher levels of stigma experienced poorer mental health and HIV care outcomes.
Elijah Palles has experienced stigmatizing language firsthand in peer-to-peer conversations and in health care settings. Shortly after he was diagnosed with HIV he said he encountered a case manager who was “shocked” that someone “like him” with a job and a car and a house could be living with HIV.
“I felt stupid because I do have resources and I do know better but I beat myself up for a while thinking she’s right, I’m not the typical person who would contract this, and then I had to say, well no, I’m just like every other person who contracts this. So that interaction fed into my own internalized stigma for a while,” Palles said.
As a Valleywise Health Voices of Hope Speakers Bureau member and Maricopa County Department of Public Health Positively You! Ambassador, Palles regularly shares his story to help raise awareness about resources available, combat misinformation and reduce HIV-related stigma. Recently, he spoke with students at Edson College as part of a public health presentation by the county.
He says Algarin’s work on this issue is important and much needed.
“They are in the driver’s seat of the conversation, and if you’re using a term like “HIV infected,” that is very stigmatizing because you’re saying someone is infected and that goes back to this idea of clean vs. dirty,” Palles said.
The point of Algarin’s article wasn’t to call anyone out, but instead, to highlight the real-world impact of researchers’ work and more specifically how the words they use affect people.
“I understand that people engaged in research may not intentionally be using stigmatizing language, but we should see this as an opportunity to do better,” said Algarin.
Indeed, Edson College Associate Dean of Research Initiatives Support and Engagement, David Coon, says there is always room for improvement. And one of the key ways to avoid harmful terminology is to connect with the community and population you research.
“At ASU and Edson College, we take our commitment to social embeddedness seriously. So it’s imperative that we listen to the voices of the communities we work with and do our best at every step in terms of the language we use in how we communicate with them and about them. In doing so we respect their choices about how they self-identify and want to be represented in research,” Coon said.
Raising the issue has resulted in some positive changes. According to the article, the use of stigmatizing language specific to HIV/AIDS started to decrease after the Joint United Nations Programme on HIV/AIDS released an update to HIV terminology guidelines.
In addition to referencing language guides on appropriate terms to use, Algarin says there are three specific actions researchers can take to reduce the stigma in scientific literature:
- Ensure the use of appropriate terms in the manuscripts you’re writing.
- Suggest the use of non-stigmatizing terms when serving as a peer reviewer.
- If you are an editor, implement a non-stigmatizing terminology policy in the instructions for authors.
“Implementing these practices can show the communities that we work with that we are not only listening, but we are actively making changes to respect preferred, non-stigmatizing terminology. It is my hope that making these changes bring us one step closer to ending the perpetuation of stigma in science,” Algarin said.