Word choice is very important in research. That’s the key finding from a new article co-authored by Angel Algarin, assistant professor at Edson College of Nursing and Health Innovation, and published in health communication.
“Researchers in any field should be aware of the language they use to describe the people they study so they don’t inadvertently reinforce the use of stigmatizing language,” Algarin said.
For the article, Algarin and his co-authors performed a content analysis of HIV-related stigmatizing language published in the scholarly literature from 2010 to 2020.
They found 26,476 peer-reviewed articles that used variations on the stigmatizing term “HIV/AIDS-infected.” More than a third of these items came from the USA. And the journal that used the most stigmatizing language was one that focused on general science and medicine.
“The use of stigmatizing language in science is of concern because the words we use are read by healthcare professionals, policymakers and journalists, who in turn use the same language when discussing issues related to HIV because they trust us who are experts,” Algarin said.
The consequences of using terms that stigmatize whole 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 the journals AIDS and Behavior and AIDS Patient Care and STDs, he found that people living with HIV who experienced higher levels of stigma had poorer mental health and HIV care outcomes.
Elijah Palles has experienced first-hand stigmatizing language in peer-to-peer conversations and in healthcare. Shortly after being diagnosed with HIV, he said he encountered a case manager who was “shocked” that someone “like him” with a job, a car and a house could be living with HIV.
“I felt stupid because I have the means and I know better, but I racked my brains for a while because I thought she was right, I’m not the typical person who would catch something like that, and then I had to say, ‘No, I’ ‘I’m just like any other person who gets infected with it. So that interaction contributed to my own internalized stigma for a while,” Palles said.
As a member of the Valleywise Health Voices of Hope Speakers Bureau and the Maricopa County Department of Public Health, you’ll be pleasantly surprised! Ambassador Palles regularly shares his story to raise awareness of the resources available, combat misinformation, and reduce HIV-related stigma. He recently spoke to Edson College students at a county presentation on public health.
He says Algarin’s work on the subject is important and much needed.
“You’re the focus of the discussion and when you use a term like ‘HIV infected’ it’s very stigmatizing because you’re saying someone is infected and that goes back to the idea of clean vs dirty. said Palles.
The purpose of Algarin’s article was not to confront anyone, but rather to highlight the impact of the researchers’ work on the real world, and specifically how the words they use affect people.
“I understand that people involved in research may not use stigmatizing language on purpose, but we should see this as an opportunity to do better,” Algarin said.
In fact, Edson College Associate Dean of Research Initiatives Support and Engagement David Coon says there’s always room for improvement. And one of the most important ways to avoid harmful terminology is to engage with the community and population you’re researching.
“At ASU and Edson College, we take our commitment to social inclusion seriously. It is therefore imperative that we listen to the voices of the communities we work with and, at every step, do our best in terms of the language we use to communicate “Them and about them. In doing so, we respect their choices about how they want to identify themselves and be represented in research,” said Coon.
Addressing the issue has resulted in some positive changes. According to the article, the use of stigmatizing language specific to HIV/AIDS began to decline after the United Nations Joint Program on HIV/AIDS published an update to the HIV terminology guidelines.
Algarin says that in addition to referencing appropriate terms in phrasebooks, researchers can take three specific actions to reduce stigma in scholarly literature:
- Make sure you use the correct terms in the manuscripts you write.
- Suggest using non-stigmatizing terms when working as a peer reviewer.
- If you are an editor, implement a non-stigmatizing terminology policy in the guides for authors.
“Implementing these practices can show the communities we work with that we are not just listening, but actively making changes to respect preferred, non-stigmatizing terminology. I hope these changes bring us one step closer to ending the problem.” “Maintaining the stigma in science,” Algarin said.