We’re “people living with HIV” not just “HIV-Positive”. It’s all in the wording.
The wording used by the media, doctors and scientists in connection with HIV has a strong impact on the stigmatisation of people living with HIV. Language focused on humans, not disease, can be one way to solve this problem, writes aidsmap, referring to a study by Dr. Kristen McPherson from the University of Oklahoma.
What does "human-oriented language" mean?
These are situations when in the wording a person is put first, not the disease or its other features. For example, not "drug users", but "people who use inject drugs", not "HIV-positive", but "people living with HIV". This may include the refusal to use abbreviations (LWH, LUIN, etc.) - but opinions vary on this.
Such deliberate choice of wording is also being used in other health and rights based movements.
"This means that we are more than our state of health or our actions - we are primarily human”
Research
Dr Kristen McPherson and her colleagues conducted a cross-study study of the use of person-oriented language in HIV-related publications. They analysed 237 studies, published in English, between 2017 and 2021.
During the analysis, the team found that the expressions "HIV-infected" and "AIDS-infected" were used in 57% of the articles, and "HIV patients" or "AIDS patients" - in 30%.
Dr. McPherson notes that the phrase "AIDS-infected" is considered illiterate from either a clinical or biological point of view - and the continued use of such expressions in scientific publications is "shocking”.
"Language evolves: we used to be ‘victims’ of the virus or ‘suffering’ with the virus, and now we’re people living with it. It’s important to recognise the way language can be triggering, especially for those who’ve lived during the earlier days of the epidemic.” McPherson believes.
What to do?
Dr. McPherson and her colleagues have presented a number of recommendations to tackle this problem.
- Researchers should consult UNAIDS and other organisations on wording issues and replace terms that are considered stigmatising.
- Journal editors can play a significant role in combating HIV-related stigmatisation, by raising stigmatising language when it is used, and both replacing it and educating the original author.
- Remember that sometimes it is clinically relevant and necessary to use terms sometimes considered stigmatising. That said researchers and clinicians should do their best to use the most appropriate language at the correct time.