In their own words: Language preferences of individuals who use heroin

Abstract

Background/Aims:

Use of non-judgmental, respectful, and uniform language to describe individuals with substance use disorders (SUD) is recommended to reduce stigma. However, existing research about use of labels for substance use has largely focused on perspectives of treatment providers and the general public, and to a lesser degree of those in long term recovery. This study aimed to examine and compare labels that individuals who use heroin and are initiating SUD treatment 1) use to describe themselves and when speaking with others who use drugs, with family, and with treatment providers, and 2) prefer to be called and never want to be called.

Design/Setting:

This was a cross-sectional survey study using a convenience sample of individuals initiating inpatient managed withdrawal program in Massachusetts, U.S.

Participants:

Between October 2017 and May 2018, 263 participants were enrolled.

Measures:

Participants completed a survey about 1) what labels they used to refer to self and when talking with others who use drugs, with providers, families, and at 12-step meetings, and 2) to identify which label they preferred least and most for others to use when referring to them.

Findings:

Over 70% of participants used the term “addict” to describe themselves and when speaking with others. However, use of “addict” varied by context, and was most common at 12-step programs. Fewer than 15%, reported using “user” or slang terms, most commonly “junkie,” in any communications. Most preferred label for others to call them was “person who uses drugs,” while most common label that participants never wanted to be called was “heroin misuser” or “heroin dependent.”

Conclusion:

Label preferences by individuals who use heroin and are in early recovery are consistent with general guidelines about use of first-person language and suggest avoidance of language indicative of drug misuse or dependence.

INTRODUCTION

Use of non-judgmental, respectful, and uniform language to describe individuals with substance use disorders (SUDs) has been encouraged by clinical and research communities (1–5), federal agencies(6), and international health organizations (6, 7). The public, health professionals, treatment providers, and policy stakeholders can stigmatize SUDs (6, 8–12), which may prevent individuals from seeking, receiving, and participating in necessary treatment (9, 13–16).

Certain language used to describe drug and alcohol use is especially stigmatizing (2, 8, 10, 17). Labels such as “addict” or “drug abuser” elicit more negative associations, punitive attitudes, and individual blame when compared to neutral terms such as “person with SUD” (8, 10). Existing research on language used to describe drug addiction has focused largely on perspectives of the general public and health care professionals(4, 8, 14, 17), with few studies examining preferences of individuals in long-term recovery (5, 18). To date, no studies have examined language preferences from individuals currently in treatment for active SUDs.

Debates surrounding pejorative language used to describe drug and alcohol use date back to at least the 1970’s when the World Health Organization first substituted the term “alcoholism” with “alcohol dependence syndrome” (19, 20). Similarly, the American Psychiatric Association (APA), in the first two editions of the Diagnostic and Statistical Manual of Mental Disorders, used the term “alcoholic” and categorized alcohol and drug disorders under personality disorders (21). By the third edition, a new classification of substance use disorders was included and term “alcoholic” was removed (22). Only in 2013, with the most recent version, was the label “abuse” removed, switching all disorders to drug and alcohol use with varying levels of severity. Federal agency and international organizations have also issued guidelines about use of non-stigmatizing language for drug and alcohol use (3) which broadly call for use of person-centered language, avoidance of slang and pejorative terms, and standardization of terms (1, 3, 20, 23).

Learning from individuals with SUDs is critical to embracing a patient centered approach (24), which dictates that clinical, research, and policy considerations should incorporate patient perspectives. Furthermore, using individuals’ language preferences reinforces bioethical principal of autonomy (25) that individuals should make their own decisions about how others should describe them.

We address the limited existing data by reporting on a new study to examine language preferences by individuals with active symptoms of and in treatment for heroin use. Our aims are to examine and compare labels that individuals who use heroin and are in SUD treatment 1) use to describe themselves and when speaking with others who use drugs, with family, and with treatment providers, and 2) prefer to be called and never want to be called.

METHOD

Design

This was a cross-sectional survey study that examined language preferences in a convenience sample of individuals initiating inpatient managed withdrawal program.

Participants

Study participants were recruited from the Stanley Street Treatment and Resources program (SSTAR) in Fall River, Massachusetts where they were undergoing inpatient evaluation and withdrawal symptom management using methadone and psychosocial treatments. Consecutive persons seeking care between October 2017 and May 2018 were approached at the time of their admission. Three hundred eighteen persons were 18 years or older, English-speaking, and able to provide informed consent as approved by the Butler Hospital IRB. Twenty-six individuals refused study participation or were discharged before staff could interview them. We excluded all individuals who did not report heroin use in the past 30 days, for a total of 263 people in the current analysis. The survey was conducted during a 15-minute non-incentivized, face-to-face interview administered by non-treating research staff.

Measure

The survey had two parts. First, using an open format response, participants were asked “What term or label do you use to identify yourself (in your own head)?” Then, they were queried if they used the same label or another, and if so which one, when talking to others who use drugs, drug counselors, doctors, family, and at 12-step mutual support meetings. All responses were recorded by research staff and organized by the authors into categories for data analysis. Second, participants were asked, “If you could choose how other people refer to you, which of the below terms would you prefer?” They were read a closed list of twelve options (see Table 3) and provided with an open format option of “other.”. These twelve labels were developed based on review of the literature on language describing addiction. Participants were asked to score each label with a number from 1 (“I would never want to be called this”) to 7 (“I would prefer to be called this.”). Participants also provided demographic information.

Table 3.

Least Preferred, Preferred, and Mean and Median Label of Preferences (n = 257).

	n (%)	n (%)	Continuous (1 – 7)
Label	% Never (1)a	% Prefer (7)b	Mean (+SD)	Median
Heroin Addict	44 (17.1%)	107 (41.6%)	4.85 (2.23)	5
Heroin Dependent	49 (19.1%)	91 (35.4%)	4.63 (2.22)	5
Heroin Abuser	48 (18.7%)	82 (31.9%)	4.53 (2.19)	4
Heroin Misuser	61 (23.7%)	77 (30.0%)	4.23 (2.30)	4
Heroin User	37 (14.4%)	97 (37.7%)	4.86 (2.12)	5
Person w Heroin Addiction	27 (10.5%)	126 (49.0%)	5.28 (2.02)	6
Person w Heroin Dependence	37 (14.4%)	109 (42.4%)	5.01 (2.16)	6
Person who Abuses Heroin	46 (17.9%)	95 (37.0%)	4.74 (2.20)	5
Person who Uses Heroin	28 (10.9%)	113 (44.0%)	5.16 (2.01)	6
Person Addicted to Heroin	33 (12.8%)	113 (44.0%)	5.13 (2.08)	6
Person with Heroin Problem	28 (10.9%)	119 (46.3%)	5.20 (2.05)	6
Person who Uses Drugs	19 (7.5%)	142 (55.3%)	5.65 (1.92)	7

^aN (%) endorsing “I would never want to be called this.”

^bN (%) endorsing “I would prefer to be called this.”

Data Analyses

We coded open format “other” responses into five categories: “addict,” “user,” “slang,” “other,” and “N/A or missing.” Categories were developed after reviewing all of the responses and collapsing across similar labels and word bases. For instance, “substance user,” “drug user,” and “user” were all identified as “user.” The category of “other” included infrequently mentioned responses that did not fit in other categories (e.g., “somebody who likes drugs”). Individuals who responded with “I don’t use labels” were sorted into “N/A or missing.”

We used McNemar’s test for paired binary data to compare the likelihood of using “addict” versus all other terms. NA / Missing was excluded from this analysis. Holm-Bonferroni (26) was used to correct p-values for multiple comparisons.

For each of the twelve closed format labels, we report the number and percentage of responses of 1 (“I never want to be called this”) and 7 (“I prefer to be called this”). We also report the mean and median rating for the 7-point rating scale. We conducted repeated measures ANOVA to test for overall differences in mean preference ratings. To facilitate interpretation of relative effect sizes we report standardized differences in item means (27). We used the Holm-Bonferroni method to determine if pairwise differences in item means were significantly different. Stata 15.1 (28) was used for all analyses.

RESULTS

The participants were predominantly male (74.5%), white (81.4%), and many (66.2%) had injected drugs in the past 30 days Table 1).

Table 1.

Background Characteristics (n = 263).

	n (%)	Mean (± SD)	Median	Range
Age		34.1 (± 9.0)	32	20 – 65
Sex (Male)	196 (74.5%)
Race (White)	214 (81.4%)
Ethnicity (Hispanic)	31 (11.8%)
Education		11.8 (± 1.85)	12	3 – 16
Education (Categorical)
< High School	77 (29.3%)
High School	119 (45.3%)
> High School	67 (25.5%)
Past 30-Day Injection Drug Use (Yes)	174 (66.2%)

The term most frequently used in all communication contexts was “addict” (See Table 2). When referring to self and when speaking to others who use drugs and with family, just over 70% of the participants reported using “addict.” Over 80% used “addict” when interacting with counselors, doctors, or in 12-step programs. Slang terms, of which “junkie” was the most commonly used, were somewhat more likely to be used when referring to themselves or when speaking to others who use drugs, though these rates were below 15%.

Table 2.

Labels Used to Refer to Self, Others Who Use, and When Speaking with Family, Counselors, Doctors, and When Attending12-Step Programs^a.

	LABEL USED WITH
LABEL	Self	Others Who Use	Counselor	Family	Doctor	12-Step
Addict	71.9% (66.0% – 77.3%)	73.3% (67.3% – 78.8%)	83.4% (78.1% – 87.8%)	73.8% (67.7% –79.3%)	81.8% (76.1% – 86.6%)	85.0% (79.6% – 89.4%)
Slang	14.2% (10.2% – 19.1%)	13.8% (10.0% – 18.8%)	7.3% (4.4% – 11.3%)	8.2% (6.7% – 14.9%)	8.0% (3.1% – 10.0%)	6.2% (2.8% – 9.1%)
User	8.5% (5.4% – 12.5%))	7.9% (4.4% – 11.1%)	6.5% (3.7% – 10.3%)	10.3% (5.0% – 12.4%)	5.8% (4.8% – 12.3%)	5.3% (3.4% – 10.2%)
Other	5.4% (3.0% – 8.9%))	5.0% (2.3% – 7.8%)	2.8% (1.1% – 5.8%)	7.7% (4.6% – 11.9%)	4.4% (2.2% – 8.0%)	3.4% (1.5% – 6.9%)
N (%) =	260 (100%)	240 (100%)	247 (100%)	233 (100%)	225 (100%)	226 (100%)
NA / Missing	3	23	16	30	38	36

^a: Cells give Column Percentage and (95% Exact Confidence Interval Estimates).

We dichotomized distributions in Table 2 to compare use of “addict” to all other labels. The percentage of persons using “addict” when referring to self and when speaking with others who use and family members was significantly higher (corrected p-values < .01) than when speaking with counselors, doctors, or in attendance at 12-step programs. There were no significant differences (uncorrected p-values > .05) in comparisons between referring to self and when speaking to others who use or with family members. There was also no significant difference in the probability of using “addict” when speaking with counselors, doctors, or in 12-step programs.

For closed format labels (see Table 3), label with the highest percentage of “I would never want to be called this” responses was “heroin misuser” (23.7%), followed by “heroin dependent” (19.1%). Preferred label for 55.3% of respondents was “person who uses drugs,” which also had the highest mean and median on the 7-point scale. The next most preferred term (49.0%) was “person with a heroin addiction.” While 17.1% of the participants would never want to be called a “heroin addict,” 41.6% said this was a preferred label. Of those who provided an open-ended response to rate another term, 77 identified a slang term as a term they never wanted to be called.

There were significant difference in mean label preferences (F11,2812 = 25.40, p < .001; Table 4). “Person who uses drugs” had significantly (corrected p < .05) higher mean preference than all other items with the exception of “person with heroin dependence.” “Heroin misuser” had a significantly lower (corrected p < .05) mean preference rating than all other items. “Heroin addict” had a significantly lower mean preference rating than “person with a heroin addiction” and “person who uses drugs.”

Table 4.

Standardized Mean Differences^a (Cohen’s d) Between Items Assessing Label Preferences (n = 257).

	ITEM
ITEM	1	2	3	4	5	6	7	8	9	10	11
1. Heroin Addict	-----
2. Heroin Dependent	.236	-----
3. Heroin Abuser	.349	.134	-----
4. Heroin Misuser	.548*	.432*	−.340	-----
5. Heroin User	−.009	−.295	−.395*	−.672*	-----
6. Person w Heroin Addiction	−.424*	−.734*	−.723*	−.920*	−.536*	-----
7. Person w Heroin Dependence	−.146	−.453*	−.514*	−.757*	−.175	.395*	-----
8. Person who Abuses Heroin	.113	−.114	−.301	−.532*	.141	.581*	.330	-----
9. Person who Uses Heroin	−.299	−.580*	−.668*	−.918*	−.422*	.173	−.229	−.528*	-----
10. Person Addicted to Heroin	−.279	−.599*	−.650*	−.860*	−.354	.242	−.178	−.488*	.050	-----
11. Person with Heroin Problem	−.320	−.631*	−.699*	−.882*	−.432*	.137	−.245	−.541*	−.055	−.122	-----
12. Person who Uses Drugs	−.612*	−.847*	−.943*	−1.08*	−.684*	−.357	−.584*	−.839*	−.489*	−536*	−.444*

^*Holm-Bonferroni corrected p < .05.

^aMean differences were calculated as column item – row item. Cohen’s d was calculated ((M₁ – M₂) / SD) / √(1 – r), where M₁ and M₂ are the respective item means, SD is the standard deviation of the difference score, and r is the product moment correlation between items (Cohen, 1988). Negative coefficients indicate the mean preference for the row item was higher than mean preference for the column item, and vice versa.

DISCUSSION

This is the first study to investigate what labels individuals with active SUD who are initiating detoxification treatment use to describe themselves, when talking with others, and prefer others to use when referring to them. Most individuals used the term “addict” to describe themselves and when speaking with others. Individuals were more likely to use “addict” in certain contexts (e.g., when speaking with treatment providers as compared to with family). Despite the growing inclusion of “user” in the literature, few participants offered the word “user” when describing themselves, and slang was used infrequently.

There are practical implications about which labels individuals use to describe themselves and when talking to others. Transitioning to a “non-addict identity” is a laborious process that requires re-interpretation of one’s lifestyle, reconstruction of a sense of self, and development of a recovery narrative (29). All individuals in our study were early on in their recovery (within days of having used heroin). Accordingly, it may have been too early in their recovery to identify themselves in terms other than “addict.” The term “junkie,” was the most commonly used slang term. Previous literature has documented that individuals who used heroin describe the term “junkie” as shameful (30) and associate it with having less control over drug use and worse functioning than those who identify as “users” or “addicts” (31). Some individuals who used heroin perceived that only “junkies” needed to be in treatment (30). Future research should further examine whether individuals who refer to self with slang labels have higher levels of self-stigma and internalized shame, and therefore may warrant additional interventions to address negative perceptions of self.

Consistent with existing professional guidelines and literature from individuals in long-term recovery (3, 5, 6, 10, 18), many individuals did not want others to use slang terms when referring to them. Additionally, many reported that they would never want to be called “heroin misuser,” and “heroin abuser,” which suggests improper use of a drug. This may be less relevant to individuals who use heroin than those who use prescription medication. Despite using the term “addict” to refer to self, less than half of all participants wanted others to call them “heroin addict,” suggesting that there are differences in how people think about themselves and what terms others should use. This cohort’s preferred label was “person who uses drugs,” which is consistent with prior research findings that person-centered language is less stigmatizing than terms such as “addict” (2, 5, 8, 10, 18).

Our study had a number of limitations. First, our cohort was of predominantly white men who recently used heroin and were seeking inpatient withdrawal management at one site in the Northeastern United States. Second, we did not collect data regarding what labels staff at this site used verbally or in written materials, nor how frequently particular labels are used by participants’ family and friends and in various social or treatment contexts. Third, our study was exploratory and may have omitted terms that individuals may have preferred, although some of our questions were open-ended. Despite these limitations, our study provides an important starting point for research about language preferences of individuals with active SUD and offers some clinical and research implications. Such label preferences may change as the public’s language changes driven by professional guidelines and cultural norms.

Our findings suggest that there is variability in preferences about how individuals who use drugs and are initiating SUD treatment want others to describe them. Providers and family members should be careful with using any labels beyond a person’s name; to know what term an individual would prefer, it may be best to directly inquire. For researchers, use of a community-based participatory action research approach, which incorporates perspectives from individuals being studied into the research directly (32, 33), may identify the most appropriate terms to use to minimize stigma and its negative implications.