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. Author manuscript; available in PMC: 2026 Mar 27.
Published in final edited form as: Drugs (Abingdon Engl). 2023 Sep 29;31(6):669–677. doi: 10.1080/09687637.2023.2262097

Language preferences and impact of labels on the lived experience of people who use heroin

Miriam Boeri 1, Aukje K Lamonica 2, Clifton Chow 3, Thor Whalen 4
PMCID: PMC13021249  NIHMSID: NIHMS2117161  PMID: 41907056

Abstract

Background

Non-judgmental language to refer to people who use drugs is replacing terms that can be stigmatizing. A study by Pivovarova and Stein (2019) found people in treatment for heroin use preferred person-first terms. Aim one of our study is to add to knowledge of term preferences among people in the US who use heroin by replicating the Pivovarova and Stein study with a sample of people who use heroin but are not in treatment. Aim two is to extend findings with insights from qualitative analysis.

Methods

Our mixed method study replicated survey questions on what labels are preferred. Qualitative questions probed the meaning of terms and impact of changing language. We recruited 206 participants between November 2019 and May 2021. We compare results of the treatment sample with not-in-treatment sample.

Results

Both similarities and differences were found in the quantitative analysis. The qualitative analysis revealed that only a third of our sample indicated that changes in language were helpful, while another third indicated that changing the terms did not result in changing attitudes towards people who use drugs.

Conclusion

While stigmatizing language should be avoided, language is constantly evolving and subject to political trends. More emphasis is needed on changing attitudes toward people who use drugs.

Keywords: stigma, language preferences, lived experience, heroin, mixed methods, labels, attitudes, replication studies

Introduction

A relatively new focus in addiction recovery treatment and research is changing the language used to refer to people who use drugs (Alexandrescu & Spicer, 2023; Zgierska et al., 2021). Terms such as “addict” and “drug user” are replaced with less pejorative words and person-centered language, such as “people who use drugs” or “people with drug disorder” (Ashford et al., 2019; Saitz, 2016; Scholten et al., 2017). Organizations composed of people who use drugs support the use of non-stigmatizing language and provide guidelines of evolving language for drug use (International Network of People who Use Drugs (INPUD) & Asian Network of People who use Drugs (ANPUD), 2020).

The conceptualization of stigma as a socially constructed attribute that discredits a person in the eyes of others is linked to contemporary constructions of stereotypes, prejudicial attitudes, and discriminatory behaviors (Benoit et al., 2010; Goffman, 1959; McKenna, 2013; Pachankis, 2007; Palamar et al., 2013). For many years, scholarly literature frequently used terms they learned from the people they were studying to describe various addictive behaviors associated with drug use, such as “addict” and “junkie”. (Acker, 2002; Anglin et al., 1993; Ball, 1967; Boeri, 2017; Bourgois & Schonberg, 2009; Burroughs, 1953; Lindesmith, 1940; Nurco et al., 1975; Pierce, 1999; Preble & Casey, 1969; Shavelson, 2002; Singer, 2005; Stephens, 1991; Tiger, 2012). These terms are now seen as stigmatizing, although some argue that the notion of stigma has lost clarity and can seem patronizing when shielding individuals from it (Alexandrescu & Spicer, 2023).

The goal of replacing stigmatizing language with person-first language (Kelly & Westerhof, 2010; Palamar et al., 2013; White, 2002; 2007) has been adopted by medical professionals, treatment providers, academics, and collectives of individuals with lived experience (Ashford et al., 2019; Boston Medical Center, 2020; Carroll, 2019; INPUD & ANPUD, 2020; International Society of Addiction Journal Editors, 2015; Zgierska et al., 2021). Yet recent studies show that merely changing language does not always correlate with changes in attitudes or behaviors (Klusaritz et al., 2023; McCurry et al., 2023; Muncan et al., 2022; Schiff et al., 2022). Pickard (2021) proposes that person-first language is merely a first step in transformation and “although words matter, they are not all that matters” (p. 753).

Stigmatizing language was already entrenched in public discourse and pervasive among communities of people who actively use drugs (Radley et al., 2017; Strulik, 2021). Some research shows that among people who use drugs, those who seem to control their use are viewed in less negative terms than those whose use appears uncontrolled; the latter group is often referred to by people who use drugs as “addicts,” “dopefiends,” or “junkies” (Boeri, 2004; Bourgois & Schonberg, 2009; Lancaster et al., 2015). People in recovery may attempt to navigate the stigma of these terms by distancing themselves from individuals who they consider “thieving junkie scumbags,” while others may avoid treatment itself, which is associated with the most stigmatized drug-using stereotypes (Copes et al., 2016; Nettleton et al., 2012; Radcliffe & Stevens, 2008).

A study on terms preferred among new patients enrolled in a managed opioid withdrawal program found that while 70% of participants used the term “addict” when referring to themselves, most preferred person-first language when referred to by others (Pivovarova & Stein, 2019). Our study is a replication of the Pivovarova and Stein quantitative study with a sample drawn from people who use opioids but are not in treatment. We extend the study with a qualitative component to increase understanding of what people who use drugs say about terms used in addiction jargon and the meaning of these terms based on lived experience.

Pivovarova and Stein (2019) cited literature showing that the public, as well as health professionals, treatment providers, and policy stakeholders, can unintentionally stigmatize individuals who use drugs via the use of stigmatizing terms, which negatively affects treatment-seeking behaviors (Ashford, Brown, & Curtis, 2018; Botticelli, 2016; Kelly, Dow, & Westerhoff, 2010). The authors presented their own survey findings on the use of stigmatizing language from a sample of treatment individuals who used heroin within the past 30 days, identified in the study as individuals in early-recovery. Their study participants were recruited from one treatment facility in Massachusetts. Largely absent from research on stigmatizing terms have been the perspectives of people who are actively using heroin and not in treatment.

In our study, we extend the Pivovarova and Stein (2019) research on language preferences of people who use heroin with a sample of individuals who were not in treatment at the time of data collection. We recruited our participants from five different states.

Methods

Design

Replication studies are needed to reinforce findings in health research, and using similar data collection and analysis with a different sample can validate or extend research findings (Amir & Sharon, 1990; Lamal, 1990; Lamonica et al., 2021; Orui et al., 2021). Our replication study employed a similar cross-sectional design used in the Pivovarova and Stein study with a few exceptions. We added a qualitative component to examine insider preferences on language used by people who use heroin. In contrast to Pivovarova and Stein’s convenience sample of individuals initiating or enrolled in an in-patient managed withdrawal program (hereafter referred to as “treatment sample”), we used rapid ethnography and employed peers who use drugs (Fessel et al., 2019; Valdez et al., 2019) to recruit a convenience sample of individuals who actively use heroin but were not in treatment (hereafter referred to as “not-in-treatment sample”).

The participants in the Pivovarova and Stein study were asked study questions by treatment staff, which is likely to create what is known as “social desirability bias” (Fontana & Frey, 1998). Social desirability is the tendency of individuals in a study to answer a question with the socially acceptable response. Social desirability is minimized, but not eliminated, in our study by collecting data in community settings, employing peers who use drugs, and allowing participants to complete questionnaires with paper and pen if desired.

To collect data from people not in treatment, we drew on the experiences of the first two authors, who have years of familiarity conducting ethnography among populations of people who use drugs (Boeri et al., 2021; Boeri & Lamonica, 2020; Boeri & Shukla, 2019; Lamonica & Boeri, 2020). We followed a rapid ethnography assessment method (Fessel et al., 2019), and employed people who use drugs (hereafter referred to as “peers”), mostly drawn from the same community where our participants were recruited (Damon et al., 2017; Guarino et al., 2010; Jürgens, 2008; Jürgens et al., 2010; Simon et al., 2021). These include people we employed in previous community studies and people we met while conducting ethnographic research in new communities. Peers helped with recruitment in the field and/or data collection. We provided monetary compensation for their time, public transportation costs, and refreshments. They were employed temporarily and understood the aims of the study and the confidentiality obligations.

Participants

Our not-in-treatment sample was recruited in Massachusetts, Connecticut, New Jersey, Maine, and Georgia. As is common in ethnographic methods, the recruitment, consent process, and data collection occurred concurrently. The study was approved by the institutional review boards (IRBs) of the first two authors’ respective universities. Recruitment of participants started in Massachusetts and Connecticut in November 2019. Data collection was suspended by a global COVID-19 pandemic when street recruitment was not feasible. During this time, a few interviews were conducted in Georgia by peers who had worked with us in previous studies. As pandemic restrictions were lifted in May 2021, data collection continued in the states of Maine, New Jersey, and Connecticut. Data collection ended in June 2021.

A total of 206 people were interviewed for this analysis. Criteria for inclusion were (1) used heroin in the past 30 days; (2) at least 18 years old; and (3) not in treatment. Screening for eligibility was based on self-reported responses to these criteria asked face-to-face while in the field by the ethnographers and/or peers. The field was typically a street corner, a park, or a parking lot. Employing peers increased validity of participants meeting eligibility requirements. All participants who met criteria were provided a written informed consent to read. This included the purpose, procedures, risks and benefits, and compensation. No identifying information was collected. All who met criteria agreed to complete the survey and none refused participation. All were in a state of mind to answer questions without difficulty, and we did not have any adverse incidents.

Typically, the interview was conducted by the ethnographer or, when needed, by a peer. The survey questions were provided on the back of the consent form. Questions were read by the interviewer, and participants read along and circled responses with a pencil. If desired, the interviewer read the questions while the participant pointed to correct responses. The interviewer wrote notes for open-ended responses. No recording device was used due to the street noise and to avoid drawing attention. Field notes written by the ethnographers supplemented the data. Survey responses took about 5 minutes and the qualitative component lasted between 10 and 20 minutes depending on the person. A small cash incentive was provided at the completion of the survey.

Measures

We replicated the questions asked in the survey used in the Pivovarova and Stein study, which was composed of two parts. Part one of the survey started with the same open-ended question: “What term or label do you use to identify yourself (in your own head)?” followed by asking if they used this term when talking with others who used drugs, drug counselors, doctors, family and at 12-Step mutual support meetings (hereafter collectively called “interlocutors”). The second part of our survey asked, “If you could choose how other people refer to you, which of the below terms would you prefer?” from a list of responses. We employed the same list of 11 close-ended options used in the original study with an option of an open-ended “other.” Participants chose from 1 (“never want to be called this”) to 7 (“prefer to be called this term”). Our survey was augmented with a third part consisting of three open-ended questions: (1) why did you use the term in response to the first question; (2) how have changes in terms used impacted you; and (3) do you have anything else to add? Responses were written on the survey by the interviewer.

Our survey did not include two questions that were in the Pivovarova and Stein study. First, we did not ask what terms they used when referring to others; instead, we asked if they used the same term they used to refer to themselves when talking to others (yes/no responses). We found that when participants were asked to identify only one term they used when talking with others in each interlocutor category, most said that it depended on the person they were talking to and not the category. They were reluctant to choose one term they used when talking to all people in this category since it would not represent their reality. Peer-consultants suggested we stop asking this question since some participants became distracted or upset at the wording of the question. Second, we did not ask if they injected drugs. Injecting drugs can be a stigmatizing behavior even among people who use drugs. Since we employed rapid ethnography in public spaces, and often engaged peers from similar networks to help with data collection, we did not want to violate their privacy and potentially stigmatize participants by asking this injection question in front of peers.

Data Analysis

For comparison purposes, we analyzed the data using analyses similar to those used in the Pivovarova and Stein study for quantitative data. Their open-ended preferred terms for self (“what term do you use to refer to yourself?”) were coded into the same four categories used by Pivovarova and Stein: “addict, user, slang, and other,” for example, “drug user” was categorized under “user” and “junkie” under “slang.” We report the number and percentage for each category. There are no missing data for this question. We also report the number and percentage of participants who use the same term when communicating with others (i.e., interlocutors). Those who said they did not talk to people in any category or did not remember what they called them are reported as NA/missing. Starting with the number of participants who invoked each of the label categories, we report the percentage of those who used the same term for “self” when communicating with each interlocutor category. Finally, we report the percentages of responses for 1 (‘I never want to be called this’) and 7 (‘I prefer to be called this’) and indicate those that were significantly different compared to responses in the Pivovarova and Stein study. Similar to the original study, we also report the mean and median rating for the seven-point rating scale.

The qualitative data were coded using constant comparative analysis common in the grounded theory approach (Strauss & Corbin, 1998). One of the authors and her research assistant descriptively coded the qualitative data for each participant line-by-line, identifying themes that emerged during the analysis. Using grounded theory provided us with a flexible approach to respond to emergent findings since data collection and analysis were conducted simultaneously (Charmaz, 2014; Strauss & Corbin, 1990). The inductive analysis of the first qualitative question “why did you use the term in response to the first question” produced three themes that participants used to label themselves. The responses to the second qualitative question, “how have changes in terms used impacted you” were analyzed by the first two authors and included descriptive evaluation of four non-mutually exclusive classifications. The qualitative findings presented are supported by quotes from the participants that represent the themes. Pseudonyms are used, and quotes are verbatim except when an ellipsis is inserted in brackets […] to indicate words are deleted that do not change the meaning of the quote. The responses to the last qualitative question, “is there anything else you would like to add?” were negligible and not part of this analysis.

Results

Participants in our not-in-treatment sample (n=206) were predominantly Black, and we reported those who identified as bi-racial, Native American, and Hispanic (see Table 1). In comparison, the Pivovarova and Stein treatment sample (n=263) reported 84.1% White, 11.8% Hispanic, and no Black or bi-racial participants. Both samples were three-quarters male. Our not-in-treatment sample was older, with a mean age of 47.6 compared to the treatment sample mean age of 34.1, and our participants had a higher level of education on average.

Table 1:

Demographic characteristics (n = 206)

n (%) Mean (± SD) Median Range
Age 47.6 (± 11.69) 49 18–71
Sex
 Male 156 (75.7%)
 Female 50 (24.3%)
Race
 White 83 (31.5%)
 Black 101 (49.0%)
 Bi-racial 5 (2.4%)
 Other* 10 (4.8%)
 Native American 7 (3.4%)
Ethnicity (Hispanic) 34 (16.5%)
Education(years) 12.2 (±2.39) 12 3–24
Education (categorical)
< High school 53 (25.7%)
High school 82 (39.8%)
> High school 71 (34.5%)
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*

Other include people who did not want to identify a race but identified being Hispanic; one person identified only as American.

Quantitative Analysis: Replicating the Pivovarova and Stein Study

Table 2 shows the percentages and confidence intervals of responses to the labels used to refer to self, and if participants used the same term when speaking to others who use drugs, or when speaking with counselors, family, doctors, and people attending 12-Step programs. To better compare with the original study, all responses were categorized into the same four categories used in the Pivovarova and Stein paper. For example, “bad addict” and “functional addict” were both reported in the “addict” category, although they have different connotations. Participants who said they did not interact with people in this category were not included in the analysis. Similar to the Pivovarova and Stein findings, the label “addict” was the most frequently used term when referring to self and with interlocutors in all contexts than any other label. Slang terms were the second most frequently used category to refer to “self,” and the label “user” was the third most frequently used in communication with others, also found in the Pivovarova and Stein study.

Table 2:

Label used to refer to self, also used with others who use, and when speaking with counselors, family, and doctors and when attending 12-Step programs: Percentage and confidence interval estimates within each context.

Label is used in context of *
Label Self Others who use Counselor Family Doctor 12-Step
Addict 47.1% (40.1–54.1%) 52.7% (44.3–61.0%) 55.5% (47.3–63.5%) 53.5% (44.5–62.3%) 56.7% (48.1–65.0%) 57.1% (48.0–65.9%)
Slang 12.6% (8.4–17.9%) 9.5% (5.3–15.4%) 7.1% (3.6–12.3%) 9.3% (4.9–15.7%) 7.1% (3.5–12.7%) 6.4% (2.8–12.1%)
User 18.9% (13.8–25.0%) 20.3% (14.1–27.7%) 21.3% (15.1–28.6%) 20.9% (14.3–29.0%) 22.7% (16.1–30.5%) 21.4% (14.6–29.6%)
Other 21.4% (16.0–27.6%) 17.6% (11.8–24.7%) 16.1% (10.7–22.9%) 16.3% (10.4–23.8%) 13.5% (8.3–20.2%) 15.1% (9.3–22.5%)
 n (%) 206 (100%) 148 (100%) 155 (100%) 129 (100%) 141 (100%) 126 (100%)
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*

Cells give column percentage and (95% exact confidence interval estimates) of “yes” responses in each column.

Table 3 provides results of the closed-ended format label preferences of participants in our study and the original Pivovarova and Stein study for comparison purposes. Based on a Chi-square test for proportions, an asterisk indicates significant differences (P<.001) between the two samples for the least and most preferred responses for each label. Although both the not-in-treatment sample and the treatment sample generally preferred person-first terms, there was a significant difference in preferences for some of the labels: “person who abuses drugs,” “heroin addict,” “heroin abuser,” and “heroin misuser.” Those in treatment preferred these terms more than people not-in-treatment. Our means and median scores of the Likert scale were also lower than those in the Pivovarova and Stein study for the majority of labels on this closed-ended question, indicating a substantial difference between the two samples.

Table 3:

Percentage, means and medians of never preferred and preferred labels: Comparison†

(1)a (7)b Continuous (1–7)c
Label % Never % Prefer Mean (+SD) Median
Heroin addict 45.6* 14.6* 3.08 (2.26) 2.5
17.1 41.6 4.85 (2.23) 5
Heroin-dependent 36.4 17.0* 3.53 (2.31) 4
19.1 35.4 4.63 (2.22) 5
Heroin abuser 49.0* 14.1* 2.96 (2.29) 2
18.7 31.9 4.53 (2.19) 4
Heroin misuser 45.6 10.7* 2.88 (2.14) 2
23.7 30.0 4.23 (2.30) 4
Heroin user 22.8 28.6 4.40 (2.33) 5
14.4 37.7 4.86 (2.12) 5
Person with heroin addiction 22.3 34.5 4.63 (2.38) 5
10.5 49.0 5.28 (2.02) 6
Person with heroin dependence 24.8 28.6 4.37 (2.37) 5
14.4 42.4 5.01 (2.16) 6
Person who abuses heroin 39.8 16.5* 3.27 (2.32) 3
17.9 37.0 4.74 (2.20) 5
Person who uses heroin 17.5 37.4 4.81 (2.28) 6
10.9 44.0 5.16 (2.01) 6
Person addicted to heroin 18.9 35.9 4.67 (2.32) 5
12.8 44.0 5.13 (2.08) 6
Person with heroin problem 17.5 39.8 4.87 (2.32) 6
10.9 46.3 5.20 (2.05) 6
Person who uses drugs 11.2 48.5 5.30 (2.15) 6
7.5 55.3 5.65 (1.92) 7
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†

Shaded rows in italics show findings from Pivovarova & Stein study for comparison

a

(%) choosing 1 (‘I would never want to be called this’);

b

(%) choosing 7 (‘I would prefer to be called this’)

c

Mean from 1 (‘I would never want to be called this’) to 7 (‘I would prefer to be called this’) choices

*

Chi-square test of proportions P<0.001

Qualitative Analysis

The nuances not shown when forcing responses into label categories are revealed in responses to the qualitative questions, adding more depth to this analysis. First, we present the themes emerging from an analysis of the open-ended responses to the meaning of the terms chosen by our participants. We follow this with a description of how participants viewed any impact from a shift in terminology.

Subjective Meaning of Stigmatizing Terms

The results of our qualitative analysis of the open-ended question on why participants used the terms to themselves resulted in three themes: 1) using labels to self-identify, (2) using person-first language; (3) using terms focused on pain and suffering.

A majority of our participants (n=173) chose a label to self-identify, which for some was similar to identity-first language (Dunn & Andrews, 2015). Identity-first language, adopted by disability advocates and scholars, prefers the “disability” term as an expression of “positive social identity” (Botha, Hanlon, & Williams, 2023, p. 870). However, whereas identity-first language is often a form of empowerment (Vivanti, 2020), participants in our study used these terms as both positive and negative descriptors representing how they viewed themselves. Terms such as “addict,” “junkie,” “user,” or “abuser” were commonly selected by our participants with additional descriptors. Some believed these labels to be a good representation of their depraved situation, such as Susan, who explained why she called herself a “fucking scumbag junkie loser.” In her words: “I should know better. I am ashamed.” Others found a term like “addict” accurate because “it’s what it is,” or “its’ what I am.” Not all labels were drug use related. A few participants preferred terms such as “god” or “genius” because they saw themselves as knowing “everything when using heroin.”

Only 16 of our participants selected person-first language to identify themselves when presented with an open-ended question. Person-first language focuses on what individuals have versus what they are. This finding stands in stark contrast to our closed-ended survey results, where the majority of participants preferred person-first terms. The closed-ended survey replicated the terms used in the Pivovarova and Stein survey to rate on a 7-point-Likert scale. As shown above in Table 3, participants overwhelmingly preferred person-first language to labels that seemed pejorative when terms were presented to them without the descriptors they provided in open-ended responses. Furthermore, the person-first terms, preferred in the survey, were imbued with varied nuances when participants responded to the open-ended questions. For example, in the qualitative data, participants identified as “a person with a dope habit,” “a person with a problem,” or “a human being with a lot of problems.” Drug use was not the identifying characteristic, but issues like “no job, no family” were front and center.

Finally, 11 of our participants chose language to self-identify that demonstrated how much they suffered. These terms were often born out of physical pain due to accidents or illnesses. Luke referred to himself as a “self-medicator.” He went on to explain: “I could not get any meds for my back pain. I used percs and then graduated to heroin.”

Other participants saw themselves as a “struggling human being,” a “deep black hole” or “damaged, broken, and lost” showing a level of despair not expressed in the other terms chosen.

Impact of Evolution of Terms.

The results of the qualitative analysis of how the shift in language impacted people who use drugs show that while about a third of our not-in-treatment sample viewed the impact of a change in terms as positive, many said that there was no impact, and some suggested the focus on terminology was a distraction. Of 187 participants who responded to this question, about a third indicated that the changes in language were helpful and synonymous with a change in the healthcare provider’s attitude. Another third indicated that while the language has changed, it did not result in a change in attitudes. Lastly, 23 participants believed that a “softening” of language has not occurred, and 33 thought a change in terms is not needed.

Of participants who indicated that changes in language are helpful, many said it resulted in “less stigma,” and “kinder” language made them feel better. Ezekiel shared: “They call me by my name. It makes me feel like a human being and not just a client.” Several of our participants revealed that the shift in language is related to their willingness to enter treatment.

The use of “softer” language often went hand-in-hand with an overall positive and respectful relationship with medical providers. Many participants expressed similar sentiments to Luis who commented: “They treat me respectfully. It is easier to open up now that they don’t point a finger at you and label you.” The “softening” of language and change in medical providers’ attitudes appeared to engender more honesty about use of drugs when in a medical setting.

Adopting “kinder” language did not always result in more respectful treatment according to our participants. James shared his experience with healthcare providers: “They use my name. It makes me feel just as bad because they [treat you] badly no matter what they call you.” While on a positive note he was not called an addict, the use of “kinder” language did not result in more respectful treatment. Similarly, Antoine lamented: “Doctors just see me as a textbook definition. They don’t talk to me.”

Some participants agreed that a shift had taken place, but they indicated that these changes in language had no impact at all, positively or negatively. Denise summarized what others also expressed: “In a sense no matter what terms are used, it is what it is.” Repeatedly, we heard “the shift in terms has not affected me” acknowledging the change in language while highlighting that this shift had no personal impact.

In contrast, some participants disagreed that a shift in language had occurred. These participants said they continued to be labeled and called “addicts” or other terms such as “junkie” or “dope fiend” by others, including medical staff.

While acknowledging the shift in language, not everyone saw the need to “soften” the language used when interacting with people who use drugs. A few of our participants were more comfortable with terms like “addict” because it described “the truth.” Others had more important concerns than a shift in terminology. Omar shared his perspective: “Doesn’t matter what people call you. It’s just a name.”

Participants who thought a change of terms was not needed often expressed the futility of “dressing up” derogatory terms used to describe their condition. Janice revealed: “When getting treatment everyone knows what you’ve been through, and you get categorized. Everything is embarrassing and uncomfortable. Even when you dress up the terms, it’s still embarrassing.”

Discussion

A comparison of the terms or label preferences of people in our study who are using heroin and are not in treatment with the preferences of individuals in the Pivovarova and Stein study who were in treatment reveal few similarities and some striking differences. In contrast to the treatment sample, our not-in-treatment sample reveals significant differences in responses to labels they prefer to be called. Among the not-in-treatment sample, 45.6% never want to be called “heroin addict” and only 14.6% prefer to be called this term; whereas the treatment sample indicated the reverse, with 41.6% preferred the label “heroin addict” and only 17.1% never want this label. Similar differences were found for the labels “heroin abuser” and “person who abuses heroin.”

The finding that our sample of individuals not-in-treatment had stronger aversion to labels that included “addict” and “abuser” than individuals in treatment appears to be counterintuitive. Whereas dissimilar results can be explained by the differences in sample demographics, this might also be explained by the social desirability bias (Fontana & Frey, 1998). People who are in treatment are often exposed to the 12-Step philosophy hegemonic in treatment practices, whether called a 12-Step program or “group” or “meetings.” This philosophy starts with admitting to being powerless to control their addiction, and although these norms are changing, most patients in treatment have been exposed to this philosophy and its “morality discourse” (Frank, 2011). Whereas many people who use drugs have experienced this discourse (those in our sample as well), people currently in treatment are more likely to be impacted by the dominance of the morality discourse, resulting in a preference for terms such as “addict” or “abuser” that imply a lack of control. The first step in this model is to admit being powerless over the substance, and group meetings often start with saying “I am an addict.” A recent study found a significant correlation between partiality to the 12-Step program and preference for the term “addict” (Gazzola et al., 2023). Our findings show that aversion to the term “addict” is stronger among people not-in-treatment compared to people in treatment who are likely exposed to 12-Step group meetings.

Insights from the qualitative data added further understanding to the continued use of what are considered stigmatizing terms. While most of our participants preferred not to be called “addict” or “junkie” according to the quantitative analysis, the qualitative data revealed that some still hear these terms used by treatment providers. While this seems unbelievable to academics conditioned to not using such stigmatizing terms, the voices of our participants cannot be ignored. The literature supports the reality that the term “addict” is still invoked in 12-step groups, stigmatizing terms are used by health providers in their thoughts or among each other, and there is evidence of stigmatizing language utilized in healthcare settings (Carl et al., 2023; McCurry et al., 2022; Schiff et al., 2022; Werder et al., 2021). These studies support what our participants revealed in the qualitative findings.

Both similarities and differences between the not-in-treatment sample and the treatment sample are found in the responses shown by open-ended preferences for the label used to refer to oneself and when referring or interacting with others. Whereas both sample participants reported “addict” as the label most used when referring to self, the percentage using this label in the treatment sample was much greater than found in our sample, suggesting less acceptance of this term among our not-in-treatment participants. The difference in labels used when referring to others who use and when interacting with counselors, family, doctors, and 12-Step programs (interlocutors) also show the label “addict” is much less used by individuals in our not-in-treatment sample than those in the treatment sample. Beyond the label of “addict,” there is little difference in responses to labels used for self and interlocutors between the two samples with one notable exception. Our sample shows a greater percentage using a term categorized as “other” for self and all interlocutors’ categories than those in the treatment sample. Since we coded our open-ended responses into the same four categories used in the Pivovarova and Stein study, the variability of “other” was obscured in the analysis illustrated in Table 2. A more nuanced analysis of the diversity of “other” terms is revealed when descriptive qualifiers are included in the analysis. For example, while the label “addict” was the term most frequently used by participants to refer to “self,” this term was often used in combination with a positive or negative qualifier that provides insights beyond the category of a simple “addict” term. A positive qualifier, such as “functional addict” suggested a more optimistic meaning than when a negative adjective such as “drug addict” or “bad addict” is used. Although the category of “user” was not often a term used to refer to self or when talking to interlocutors, descriptive qualifiers associated with this term when it was invoked revealed positive connotations, such as “casual user,” indicating someone who can control use by partaking infrequently.

Likewise, the term “junkie,” the most popular slang term invoked, generally has a negative connotation, but not always. Previous research shows that people who use drugs may distinguish their own status as an “addict” or “functional addict” is better than the status of a “junkie” (Boeri, 2004; Radcliffe & Stevens, 2008). However, peer-led groups have suggested that reclaiming the term “junkie” can be empowering when self-identifying (INPUD, 2011).

Our in-depth qualitative explanation as to why participants used the term “addict” reveals that they believe this term adequately describes them and their situation. Their qualitative explanation of why they chose a label to self-identify reveals more nuanced distinction and variability of how people who use drugs see themselves than the findings of the quantitative analysis alone. Additionally, their revelation regarding the impact of de-stigmatizing terms fills a gap in our understanding of changing the language used to refer to people who use drugs. Only about a third of our sample indicated that changes in language were helpful, while another third indicated that changing the terms did not result in changing attitudes towards people who use drugs.

Limitations

Replication studies with different samples are never an exact replicate, which is a limitation of this study for comparison purposes. The race and ethnicity differences between the two samples also impact differences in language preferences. The Pivovarova and Stein sample of individuals in early treatment was primarily White, whereas our sample of not-in-treatment individuals included a greater variety of race and ethnicity, was older, and reported a higher level of education overall.

Both studies have limitations due to social desirability bias. The data for the treatment sample were collected by treatment staff in a clinical setting, whereas our data were collected from individuals in their own settings and by ethnographers assisted by peers. These differences limit a direct comparison and open the data collection to different types of biases. Nevertheless, our findings extend the analysis of preferences for terms by filling a gap in the preferences of people who are actively using heroin and not in treatment. Our qualitative findings provide additional insight on the meaning of these preferences.

Conclusion

The goal of this study was to add to our understanding of term preferences among people who use heroin by replicating a study conducted with people in “early recovery” in treatment (Pivovarova & Stein, 2019) with a sample of people who use heroin but are not in treatment. Similar to the treatment sample, our not-in-treatment participants most prefer the term “person who uses drugs” when asked to choose from a closed-ended list of terms. Also similar to the treatment sample, when the question is open-ended, “addict” is the term most often invoked by our study participants to self-identify and when speaking with interlocutors. Analysis of descriptive qualifiers used by our participants with the term “addict” reveals that this label is not always pejorative.

A primary implication of this replication study on preferred language is that people who use drugs and are not in treatment have a variety of views that often differ from the views of people in treatment, and their insights must be included to better understand the impact of stigmatizing terms (Lancaster et al., 2015; Nguyen et al., 2021). Their lived experiences, collected outside the confines of a treatment setting, are critical to understanding where to focus limited resources and attention. Similar to people with disabilities (Botha et al., 2023), people who use drugs across the spectrum should be respected to choose whatever language or models fit their experiences and situations. Our qualitative analysis shows that some participants thought a change in terms is not beneficial for them or needed, suggesting that health providers who decide which are the preferred terms to be used can be perceived as presumptuous by people who are using drugs. The International Network of People who Use Drugs (INPUD), an organization advocating globally for human rights of people who use drugs, proposed that while denigrating language should be avoided, people who use drugs can reclaim stigmatizing terms as a political tool or as a form of empowerment (INPUD, 2011). More research is needed on views that offer greater insights on what stigmatizing language means to people who use drugs, and how seemingly denigrating terms might be viewed by some as liberating in certain contexts (Botha et al., 2023).

Two evolutions in stigmatizing language warrant deeper investigation: firstly, the potential dilution of the original goal to change attitudes and behaviors through “top-down stigma politics” orchestrated by authoritative and paternalistic entities (Alexandrescu & Spicer, 2023); secondly, the shifting inclinations between person-first and identity-first language among individuals with lived experiences found when studies encompass the diverse spectrum of this population (Botha et al., 2023; Pickard, 2021).

Returning our attention to the founding conceptualization of stigma, we are reminded that stigma is a socially constructed attribute that is shown by prejudicial attitudes and discriminatory behaviors (Goffman, 1959). The findings from our not-in-treatment sample reveal that more emphasis is needed on changing attitudes and behaviors (not merely language) toward people who use drugs. While some of our participants agreed that a change in terms led to kinder actions from health providers, many indicated that a change in terms did not impact the attitudes and behaviors of people using the less pejorative language. Whereas our findings signal a need to reinforce the use of non-stigmatizing terms, it also reveals that without changing attitudes and behaviors toward people who use drugs, replacing stigmatizing terms is not enough.

Acknowledgements

This research would not have been possible without our participants, and we appreciate the time and effort they took to share aspects of their lives with us. We would also like to thank peers who use drugs for their help with data collection, and Jeffrey Turner for preliminary analysis of parts of the data. Further, we would like to thank the team at the Greater Hartford Harm Reduction Coalition and the North Jersey Community Research Initiative (NJCRI) for assisting with recruitment.

Primary Funding

The study was partially funded by a Bentley University Faculty Affairs Committee Grant (2019).

Footnotes

Disclosure of interest

The authors of this research declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

The authors have no conflict of interests or disclosures to make.

Geoinformation

This study was conducted in the United States, specifically data was collected from the states of Maine, Massachusetts, Connecticut, New Jersey, and Georgia.

Contributor Information

Miriam Boeri, North Jersey Community Research Initiative, 393 Central Avenue, Newark, NJ 07103.

Aukje K. Lamonica, Southern Connecticut State University, 501 Crescent Street, New Haven, CT 06515

Clifton Chow, Bentley University, 175 Forest Street, Waltham, MA 02452.

Thor Whalen, Independent Consultant.

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