Contributor: The Importance of People-First Language in the HIV Community

Milena Murray, PharmD, MSc, BCIDP, AAHIVP

Milena Murray, PharmD, MSc, BCIDP, AAHIVP, is an associate professor of pharmacy practice at Midwestern University Chicago College of Pharmacy and an HIV/ID clinical pharmacist at the Northwestern ID Center.

People-first language should be a cultural norm, with patients’ best interests always coming first, and we must encourage everyone to become change agents, according to Milena Murray, PharmD, MSc, BCIDP, AAHIVP, Midwestern University College of Pharmacy.

Language matters. Language shapes how we think about people, and communication shapes the patient care experience. As such, it also can potentially affect patient outcomes.1 People-first language (PFL) avoids stigmatization and discrimination of people with a medical diagnosis, illness, disability, or socioeconomic disadvantage.2 It decreases the emphasis placed on the diagnosis and increases the focus on the individual.1 Not using PFL in a health care setting may cause a barrier to care.1 The use of stigmatizing non-PFL suggests individual blame, focusing on the diagnosis and not the person as a whole.3

PFL in People Living With HIV

PFL can be traced back to 1974 to a self-advocacy conference in the United States.1 The use of PFL in people living with HIV, however, was first noted in The Denver Principles written by the Advisory Committee of People with AIDS.4 These principles offered recommendations for health care professionals, all people, and people with AIDS. They also put forth the Rights of People with AIDS. This advisory committee strongly discouraged using the term victim and noted that people are only occasionally patients. The term patient implies a state of illness that can be stigmatizing. If a person is not referred to in a clinical context, they are not a patient.5 The overall theme of The Denver Principles is support. The use of supportive PFL in the context of people living with HIV is imperative.

There are many examples of language that puts people first. The most important is the use of “people living with HIV” rather than “HIV infected” or “HIV positive.”6 It is good practice to avoid using the word infection and use more neutral terms such as acquire or transmit. Use the phrase “comprehensive prevention of vertical transmission” in place of “mother-to-child transmission.” When referring to the HIV epidemic, use “end the epidemic” rather than “eliminating HIV.” The language surrounding a diagnosis of HIV must also be appropriate. A person receives an HIV diagnosis; they do not catch HIV. HIV should not be referred to as a “devastating and deadly disease.”7

Other terminology related to HIV also should be appropriate. For example, the use of body fluids should be more precise. Use the exact term for a type of body fluid, such as blood, semen, or vaginal fluid.5 There are only certain body fluids that may transmit HIV. In addition, AIDS itself is not a condition; it is a syndrome. The use of HIV or AIDS therefore should be used appropriately based upon the state of the person.5 As noted in The Denver Principles, victim, sufferer, contaminated, or sick should not be used.5 Use the phrase “people living with HIV” instead.

In addition, the term unprotected sex implies a judgment.8 The term condomless sex or the phrase “sex without the use of prevention tools” should be used. When referring to causes of death, the preferred wording is “died from complications related to HIV” or “died of an AIDS-related illness.”8 This appropriate use of language helps to send the message that opportunistic infections are the acute cause of death. Serodifferent may describe a couple comprising 1 person with HIV and 1 person without HIV rather than serodiscordant.

Other Use of Appropriate Language

Terminology related to sex/gender should also be appropriate.8 Sex is a biological category based on reproductive characteristics and is usually assigned at birth, whereas gender is a composite of socially constructed roles, behaviors, and attributes that society deems appropriate for members of a given sex. Gender identity should not be assumed, and a person's preferred pronouns should be used. Not all sexual partners are romantically involved, and referring to them as a couple may not be appropriate.

Similarly, a specific family dynamic should not be assumed between a parent and child. Children may be raised by biological mothers and/or fathers, adoptive parents, or other caregivers.8 Race may refer to racial and national origin or sociocultural groups. The terminology surrounding race and ethnicity should align with the preferred language for each group/population.8

In addition to terminology, body language and images should convey an appropriate message.8 Pictures should show people living with HIV in a vibrant, instead of graphic, manner, and photographs related to substance use should not use syringes, because these may be triggering.

People-First vs Identity-First Language

It is essential to note people-first vs identity-first language.1 For example, the Deaf community embraces identity-first language, viewing deafness as a medical condition, not a disability. Community members have a hearing impairment, but that does not carry a negative connotation. It is important to note that these preferences come from individuals within the community, not from society. Some communities may also reject the use of PFL,2 so it is crucial to look up preferred terms for a specific community and rely on resources assembled by those within that community.8

PFL should be a cultural norm. The examples provided in this article are only a small fraction of the available resources surrounding PFL. We must encourage everyone to use available resources to become change agents, to shift the culture toward PFL, and to use appropriate language in research, writing, and patient documentation.

In keeping with medical tradition, the patient’s best interests should come first, and so should the language we use.

References

1. Crocker AF, Smith SN. Person-first language: are we practicing what we preach? J Multidiscip Healthc. 2019;12:125-129. doi:10.2147/JMDH.S140067

2. Balogun JA. Communicating research outcomes sensitively through consistent use of people-first language. Afr J Reprod Health. 2019;23(2):9-17. doi:10.29063/ajrh2019/v23i2.1

3. Bajaj SS, Stanford FC. Dignity and respect: people-first language with regard to obesity. Obes Surg. 2021;31(6):2791-2792. doi:10.1007/s11695-021-05304-1

4. Denver Principles. Statement from the Advisory Committee of People with HIV/AIDS. National Library of Medicine. 1983. Accessed May 27, 2021. http://www.nlm.nih.gov/survivingandthriving/education/documents/OB2216-DenverPrinciples.pdf

5. A Guide to Talking about HIV. CDC. Accessed May 27, 2021. https://www.cdc.gov/stophivtogether/library/stop-hiv-stigma/fact-sheets/cdc-lsht-stigma-factsheet-language-guide.pdf

6. Dilmitis S, Edwards O, Hull B, et al. Language, identity and HIV: why do we keep talking about the responsible and responsive use of language? language matters. J Int AIDS Soc. Published online July 11, 2012.. doi:10.7448/Ias.15.4.17990

7. Lynn VA. Language and HIV communication. HIV AIDS (Auckl). 2017;9:183-185. doi:10.2147/HIV.S148193

8. NIAID HIV Language Guide. HIV Prevention Trials Network. February 2021. Accessed May 27, 2021. https://www.hptn.org/sites/default/files/inline-files/NIAID%20HIV%20Language%20Guide%20-%20March%202020.pdf