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. Author manuscript; available in PMC: 2023 Oct 19.
Published in final edited form as: J Subst Abuse Treat. 2021 Dec 7;137:108684. doi: 10.1016/j.jsat.2021.108684

Health care-seeking experiences for people who inject drugs with hepatitis C: Qualitative explorations of stigma

Elizabeth J Austin 1, Judith I Tsui 2, Michael Barry 3,4, Elyse Tung 5,6, Sara N Glick 4,7, Michael Ninburg 8, Emily C Williams 1,9
PMCID: PMC10586539  NIHMSID: NIHMS1935355  PMID: 34911656

Abstract

Introduction:

People who inject drugs (PWID) have complex health needs and often experience poor health outcomes. For PWID, intersectional experiences of stigma and other social vulnerabilities may influence their experiences navigating medical care. We conducted a targeted subanalysis of qualitative interview data collected to inform development of a community-pharmacist care model for hepatis C (HCV) among PWID to explore intersectional influences on health care–seeking experiences.

Methods:

The study recruited participants from community organizations in Seattle, Washington, and participants were eligible if they reported injection drug use within 3 months and having HCV. Study staff conducted semi-structured interviews and two independent coders transcribed and initially analyzed them using a Rapid Assessment Process, guided by the Consolidated Framework for Implementation Research. Themes emerged regarding intersections of stigma and social vulnerabilities; thus, we conducted a targeted subanalysis guided by Fundamental Cause Theory and Earnshaw et al.’s Stigma Framework.

Results:

Forty participants (65% male; 47% non-white) reported multiple social vulnerabilities (e.g., regarding unstable housing and food insecurity). Qualitative analysis identified that receiving health care in the context of social vulnerability is challenging and burdensome (Theme 1); health care interactions are fraught with stigma stemming from intersectional vulnerabilities (Theme 2); and the belief that abstaining from drug use is needed to prove worthiness for care (Theme 3). PWID described experiencing multiple social vulnerabilities (e.g., unmet basic needs) that made seeking health care burdensome. Interactions with health care teams further reinforced participants’ feelings of shame about their drug use, which influenced how participants expressed their care preferences and felt heard by providers. And as PWID navigated health care, they felt that their status as an active drug user was used to control and sometimes coerce their access to services, discouraging PWID from seeking needed care.

Conclusions:

Stigma and social vulnerabilities play a pervasive and intersecting role in the health care–seeking experiences of PWID and negatively impact their ability to navigate and receive care they need. Evidence-based stigma reduction interventions at multiple levels, coupled with person-centered approaches to care delivery, may help to mitigate negative impacts.

Keywords: Stigma, Patient experience, Social determinants, Hepatitis C, Injection drug use

1. Introduction

Research has documented that people who inject drugs (PWID) face substantial morbidity and mortality (Muncan et al., 2020; Anderson et al., 2020). In addition to medical complications associated with drug use itself, PWID often face poorer health outcomes overall and have substantial unmet health care needs (Cullen et al., 2009; Rowe et al., 2012). A recent meta-analysis of health care utilization patterns for patients with substance use disorders (SUD), including injection drug use, showed that on average, 29% of patients with SUD visited an emergency room every year and 22% were hospitalized; these rates were as high as 35 times those of the general population (Lewer et al., 2020). Despite higher rates of health care utilization, PWID are less likely to be engaged with primary care and receive the preventive and chronic care services they need (Rowe et al., 2012). A need exists, therefore, to understand and address the barriers to engaging PWID across the spectrum of health care services.

Prior work has documented the marked influence of stigma on the health care–seeking experiences of PWID (Muncan et al., 2020; von Hippel et al., 2018). Stigma, or the systemic devaluing of groups based on features that distinguish them from societal norms, is common for persons with SUD (von Hippel et al., 2018). As Link and Phelan (1995; 2001) describe, stigma is a “fundamental cause” of health, which can involve interrelated social and affective processes of labeling, stereotyping, and discrimination that cause stigmatized (i.e. “marked”) groups to lose status and privileges. For PWID, the prejudice, stereotypes, and discrimination that stem from stigma may influence their experiences navigating care for conditions that may be directly related to drug use, such as for hepatitis C (HCV), as well as care for other pressing health needs (Earnshaw et al., 2013). As a result, research has recognized stigma as a ubiquitous determinant of health with direct influences on the health status of more marginalized groups (Keyes & Galea, 2016), such as PWID and groups that experience SUD (Paquette et al., 2018).

Consistent with intersectionality theory (Crenshaw, 1989), the negative impact of stigma on health is likely compounded for people with other stigmatizing conditions (e.g., opioid use disorder and HCV) (Stangl et al., 2019) and/or other or social vulnerabilities (e.g., housing instability, poverty) that serve as “fundamental causes” of well-being and/or disease due to their influence on access to resources that help them to avoid diseases and their consequences (Link & Phelan, 1995). Though prior research has characterized PWIDs’ experiences with stigma (Muncan et al., 2020; Meyerson et al., 2019; Paquette et al., 2018), recent research has identified associations between intersectional social vulnerability, or “fundamental causes”, and decreased access and utilization of MOUD (Abadie et al., 2021; Grebely et al., 2019; Harris & Rhodes, 2013; Degenhardt et al., 2017).

Yet how stigma and social vulnerabilities (which also result in stigma) interact to influence the ability of PWID to prioritize and address health care needs, particularly care that addresses chronic or preventive health problems, is unclear. Given the intersectional way mechanisms of stigma work to influence affective, behavioral, and physical health outcomes for those who experience social vulnerabilities, stigma likely extends to influence other forms of health care seeking beyond care for OUD, and the complexities of those experiences and relationships warrants exploration (Earnshaw & Chaudoir, 2009). Therefore, we conducted a targeted subanalysis of a broader study conducted among PWID with HCV to understand care seeking experiences and preferences of PWID, and how the phenomenon of having multiple, compounding vulnerabilities influenced priorities and patterns for seeking health care services among PWID.

2. Materials and methods

2.1. Overview

This work reflects a targeted subanalysis of data collected for a larger study focused on developing a community pharmacy model of medication delivery for PWID to expand access to medications for HCV, opioid use disorder, HIV prevention, and overdose prevention. As part of the project’s formative evaluation effort, we conducted semi-structured qualitative interviews and focus groups to understand PWID’s care-seeking experiences. Both the design and analysis of semi-structured interviews for the parent study were guided by the Consolidated Framework for Implementation Research, with a focus on identifying barriers and facilitators to accessing needed care and informing development of a community pharmacy-based model of care delivery (Tsui et al., in press). During analysis of the data, we observed emergent themes regarding intersectional experiences of stigma and social vulnerability, which are the focus of the current study.

2.2. Sample

The study recruited participants from Seattle-area community organizations, and they were eligible if they reported injection drug use within the last 90 days, self-identified as having active HCV, were over 18 years of age, were comfortable speaking English, and were willing to provide informed consent. Recruitment occurred at local syringe service programs, addiction treatment programs, community-based HCV service organizations, as well as through recruitment flyers placed in public spaces. We used purposive and snowball sampling to maximize the diversity of participants and reflect the demographic make-up of the PWID population in the Seattle area that has been documented by local public health department and service organization data, as well as with an effort to oversample persons from historically marginalized racial/ethnic backgrounds (Palinkas et al., 2015). Potential participants were referred to a member of the research team who explained the study and reviewed study screening criteria. If interested, participants provided informed consent before beginning study activities. The University of Washington Institutional Review Board reviewed and approved all activities.

2.3. Data collection

Once enrolled, each study participant completed either a semi-structured interview (n=24) or one of four focus groups (n=16), depending on participant preference. A member of the study team (MB) trained in anthropology and qualitative data collection conducted interviews and focus groups. During the interview or focus group, participants first completed a brief quantitative survey that assessed their demographic information (e.g., age, gender, race/ethnicity), injection drug use patterns, and several items that assessed their level of concern for key social determinants of health (e.g., food security, housing stability), needs, and potential HCV complications. Next, participants responded to a series of open-ended questions that asked about their experiences receiving health care and accessing services related to opioid use, overdose prevention, HCV treatment, and HIV prevention. Interviews and focus groups were informed by a discussion guide developed with input from a multidisciplinary study team, including researchers with expertise in addiction medicine, infectious disease, social determinants of health and substance use stigma, qualitative methods, and implementation science. Interviews or focus groups each lasted approximately 30–60 minutes, and were completed in person when able, or via phone, due to precautions associated with the COVID-19 pandemic.

2.4. Analysis

The study audio-recorded and had professionally transcribed all qualitative interview and focus group data. Two independent coders (MB and EA) coded the data using Rapid Assessment Process (RAP). RAP is an iterative, team-based approach to review, triangulate, and rapidly develop an understanding of qualitative data, which has been demonstrated to have significant overlap in qualitative findings compared to more traditional coding approaches (Beebe, 2001; Hamilton, 2014; Williams et al., 2015; Taylor et al., 2018; Nevedal et al., 2021). The parent study summarized all findings from the data using structured templates (RAP templates) in Microsoft Word®, which aligned with interview guide topics and included both summarized findings and participants’ quotes to support credibility (Korstjens & Moser, 2018). Completed RAP templates were iteratively reviewed with the qualitative study lead (EW) to assess discrepancies and alignment and identify preliminary and emergent themes; templates and themes were then reviewed with the broader study team at multiple phases using constant comparison methods to generate final themes and enhance confirmability of learnings. Early in this process, themes related to the intersection between stigma and social vulnerabilities and their combined impact on care experiences and preferences emerged, and we conducted a targeted subanalysis on this issue from that time using inductive methods informed by both Earnshaw and Chaudoir’s stigma framework and Link & Phelan’s Fundamental Cause Theory (1995). The study team analyzed quantitative data from the brief surveys using descriptive statistics and triangulated them with qualitative data throughout analysis.

3. Results

Between January and July 2020, the study enrolled 40 participants in either an interview (n=24) or focus group (n=16). Participants recruited from an HCV service agency (n=19) were on average 7 years younger (35 vs. 42) and more likely to be male (95% v. 43%) than those recruited from SUD treatment programs or snowball sampling (n=21); otherwise no notable demographic differences existed between participants recruited from different recruitment sites or between participants who participated in interviews versus focus groups. Among the 40 participants, 26 (65%) were male, 19 (47%) were non-white, and 32 (80%) were not stably housed. The median number of days per month of injection use among participants was 30 (range 1–30 times per month) and the median frequency of injections per day when injecting was 3 (range 1–7). Most participants had been engaging in injection drug use for more than 11 years. Participants reported using a variety of drug types and drug combinations at their last injection episode, including experiences with heroin, methamphetamine, fentanyl, and cocaine. All participants had a self-reported diagnosis of HCV. When asked about their level of concern for several social determinants, 24 (60%) participants said they were very or extremely concerned about housing, 18 (45%) cited strong concerns about employment, and 17 (43%) had strong concerns about food security. Additionally, 21 (53%) participants cited being very or extremely concerned about HCV complications. Table 1 provides more details related to participants’ demographics and Table 2 provides brief survey results related to social determinant and HCV concerns. Three themes emerged from qualitative data that characterize participants’ beliefs around how stigma and social determinants interact: 1) seeking health care in the context of social vulnerability is challenging and burdensome; 2) health care interactions are fraught with stigma stemming from intersectional vulnerabilities; and 3) abstaining from drug use is needed to prove worthiness for care.

Table 1:

Demographic characteristics and perspectives on social determinants among people who inject drugs with a hepatitis C virus diagnosis, Seattle WA, 2020

Overall (N=40)
Age [Median, interquartile range (IQR)] 37,
32–45
Gender [n (%)]
 Male 26 (65%)
 Female 13 (33%)
 Non-binary (assigned male at birth) 1 (3%)
Race [n (%)]
 American Indian/Alaska Native 7 (18%)
 Asian 1 (3%)
 African American/Black 1 (3%)
 Native Hawaiian/Pacific Islander 0 (0%)
 White 21 (53%)
 Multiple Races 5 (13%)
 Other Race(s) 5 (13%)
Hispanic Ethnicity [n (%)] 7 (18%)
Housing Status [n (%)]
 Stably Housed 8 (20%)
 Not Stably Housed 32 (80%)
Drug(s) used at last injection episode [n (%)]
 Heroin, alone 14 (35%)
 Methamphetamine, alone 4 (10%)
 Heroin and methamphetamine 15 (38%)
 Heroin, methamphetamine, and fentanyl 4 (10%)
 Heroin, methamphetamine, and cocaine 1 (3%)
 Heroin, methamphetamine, and methadone 1 (3%)
 ≥4 drugs in combination 1 (3%)
Days injected in past month (Median, IQR) 30 (25–30)
Injecting episodes on an average day (Median, IQR) 4 (3–4)
Years injecting drugs (Median, IQR) 11.5 (5–18)
Years aware of HCV diagnosis (Median, IQR) 2 (0.5–7)
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Table 2:

Participant ratings of concerns for social determinants, needs, and HCV complications among people who inject drugs with a hepatitis C virus diagnosis, Seattle WA, 2020

Topic Extremely concerned Very concerned Moderately concerned A little concerned Not concerned Don’t Know Refused to answer
Housing 20 (50.0%) 4 (10.0%) 4 (10.0%) 3 (7.5%) 5 (12.5%) 3 (7.5%) 1 (2.5%)
Employment 11 (27.5%) 7 (17.5%) 9 (22.5%) 3 (7.5%) 4 (10.0%) 4 (10.0%) 2 (5.0%)
Food 13 (32.5%) 4 (10.0%) 6 (15.0%) 3 (7.5%) 10 (25.0%) 3 (7.5%) 1 (2.5%)
Getting drugs 13 (32.5%) 7 (17.5%) 4 (10.0%) 3 (7.5%) 9 (22.5%) 3 (7.5%) 1 (2.5%)
HCV complications 14 (35.0%) 7 (17.5%) 5 (12.5%) 8 (20.0%) 5 (12.5%) 0 (0.0%) 1 (2.5%)
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Note: All estimates are row percentages (N=40).

3.1. Theme 1:

Seeking health care in the context of social vulnerability is challenging and burdensome

As participants began describing efforts to manage their health, they quickly placed these experiences in the broader context of the marked social vulnerabilities they face, such as unstable housing or homelessness, isolation, food and financial insecurity, and lack of transportation. For instance, one participant seen at a community center for PWID said, “sometimes I come here and that’s the only thing I get to eat that day because I’m so wrapped up in trying to do other things that I don’t take care of myself and try to get food where I can.” [Participant 1]. Another participant described challenges to medication adherence for OUD and other conditions related to their unstable housing status, saying, “when you’re outside, sometimes it’s hard. It’s frickin’ pouring down rain and I have a place that’s under cover and I don’t want to go out in the rain and get soaked or freezing cold. So that’s why I’ve missed some days” [Participant 11].

Participants also expressed that the conditions in which they lived were not conducive to what may be required for their self-management of medications. For instance, one participant said, in reference to medications for HCV, “unfortunately, if you’re out on the streets, I don’t think that you probably should be carrying more than one week’s medication anyways, because there’s too much of a chance of losing it, way too high of a chance of losing it, actually, or getting stolen, you know. Yeah, I mean, being on the streets, that is, your stuff gets stolen a lot” [Participant 28]. Another participant described the burden of seeking care, saying: “to be honest with you, you wouldn’t believe how many doctors’ appointments I’ve missed. […] It’s just too much work. I can’t do it, I just can’t. […] I have to go here and do this. Now I gotta go over here and get my blood drawn. Then I have to go over here and go see the doctor. Then I gotta go over here and get the medication. Hell with it. And you ain’t got a ride. You ain’t got money for the taxi. You ain’t got nobody to take you. So you’re just going to walk in the rain or the snow or whatever it may be” [Participant 3]. And a third participant discussed how seeking health care interferes with their ability to make money, stating: “I talked to another place and they just wanted me to fill out paperwork and stuff, but when I was working a lot, it’s hard sometimes to say, ‘Hey, I’m going to miss out on however much money I could have made that day legitimately to fill out paperwork and get treatment.’ It’s kind of a hard thing to do. Especially when, even though it’s low income housing, I have to still pay rent, electricity, all that. And it takes a lot of work just to come up with that much” [Participant 7].

Participants further described how seeking health care may result in unanticipated or unintended consequences. For example, one participant expressed a need for health care settings to be located in places where PWID felt safe and “not worried about their warrants getting hemmed up with the police” [Participant 14]. Another participant described an example of when seeking health care resulted in loss of their possessions, saying: “because, for example, what happened one time, I ODed, they didn’t know who I was, so they went in my pocket and pull out my passport and used that to ID me. And then, instead of putting it back in my pocket, they put it in a patient bag, didn’t tell me, and then it got thrown out. And that’s a $100 item! And then they wouldn’t replace it. And it’s like, okay, that’s a really bad experience, so I don’t want to go to that hospital again, if I can help it” [Participant 7].

As a result of added burden or unintended consequences, participants expressed that receiving health care was not a top priority relative to other needs they have. For instance, one participant said, in reference to seeking treatment for OUD, “Why did I not jump at treatment right away? There were other things that I needed to put in place first. I live in a shelter now, I don’t live under a bush in the woods” [Participant 34]. Participants particularly expressed reluctance to prioritize preventive health care, such as HIV prevention, in the context of other concerns. One summarized, “The people that are homeless that live in tents and live in these camps, […] how much are they willing to do to take that pill for a disease that they don’t have,” such as medications to prevent HIV. This participant further stated “it just all revolves on what you care about first” [Participant 39].

3.2. Theme 2:

Health care interactions are fraught with stigma stemming from intersectional vulnerabilities

Participants repeatedly brought up the role that stigma and discrimination played in their interactions with health care teams. To start, participants described that their interactions with the broader public often led them to have feelings of shame about their drug use. As one participant said, “we don’t get looked at as general people a lot of the time. And I think that’s what actually drives some of our use and kind of like that go-against attitude and whatnot because it upsets anyone to not be viewed as a person and just as something different” [Participant 36].

Participants expressed that they carried these feelings of shame into their interactions with health care teams, and their experiences with health care frequently reinforced the shame participants felt about their drug use. Participants provided many examples of how the language, behaviors, and attitudes of health care team members made them feel less valued and respected. As one participant described, related to experiences at a pharmacy, “we’re not the people they tell to wait 20 minutes for our prescription; we’re told to go wait outside. Someone will knock on the window when it’s ready” [Participant 2]. Another participant who has experience with housing instability and incarceration echoed this experience, saying: “it was like sometimes like even just going and approaching the doctors, because just getting Suboxone, just like they look at you funny. They make you feel dirty just by the way they look at you. And I do not like that” [Participant 15].

In addition to making participants feel further devalued, participants described that these experiences made them feel less motivated to seek the services they need. One participant, facing housing instability and seeking OUD-related care, characterized this by saying, “part of the reason why I left early, it was because the staff there was just assholes. They did not seem like they really gave a damn about us but it was more like we were a thorn in their side” [Participant 14]. Another participant said, in reference to seeking care and insurance coverage with a history of OUD: “I feel like the pharmacy and they’re kind of like, they look at my background and look what prescriptions I’m getting and they’re kind of like, ‘Oh, yeah, this guy.’ And it’s probably in my head, but I’m assuming they’re seeing my record and whatnot. There seems to be a, interest, like silent judgment there. So there’s nothing you can do” [Participant 21]. In contrast, that same participant went on to describe the benefit of seeking services from a community site that is oriented to PWID perspectives, saying “it’s kind of nice when I have heroin-related problems that not just like pop up on my permanent record with insurance” [Participant 21].

Further, participants expressed feeling that their providers were not listening to them and that their preferences for care delivery were not heard, valued, or acted upon. As one participant stated, “like one time, for example, they Narcaned me right when I ODed and then they did it again when the ambulance came. And then two times more after I got to the hospital. And it’s like, I was like talking to the person and I said, ‘I’m okay, I’m not under anything. I’m feeling the precipitated withdrawal from being naloxoned. So I don’t need anymore.’ And here they give me more” [Participant 7]. Another participant described: “Because the hospital doctors don’t like people that use. They don’t like drug addicts. They have no empathy at all. Like I’ve had friends and myself that have had abscesses and went in the hospital. And they just cut into you. They don’t numb you. It’s basically the doctor tortures you, you know, on what a disease of our brain, they can’t help it. And they just don’t care” [Participant 30].

Participants emphasized that “doctors need to listen to us” [Participant 3], especially given the expertise they have in their own bodies and health. Yet participants repeatedly cited that health care team members did not “have time to sit down and make you feel like a human being” [Participant 39]. As a consequence, many participants felt discouraged from seeking the health care they needed, to avoid the stigma—resultant from drug use and other social vulnerabilities—that would accompany this experience.

3.3. Theme 3:

Belief that abstaining from drug use is needed to prove worthiness to receive care

Participants noted that as they navigated care, providers used their status as an active user of drugs to control and sometimes coerce their access to services. This continued to make participants feel undervalued, and participants expressed the desire for providers “that would care about my life just as much as their own” [Participant 27]. Participants cited many examples of how providers acted as gatekeepers, controlling access to services based on drug use status instead of patient preference or clinical need, despite seeking care in a state that currently does not have abstinence requirements in place for Medicaid. One participant described this experience, saying: “I wanted to get the treatment for it [HCV], but my primary care doctor said I had to be clean to get the treatment for it. And I was like, well, I’m not going to do it, then. I think that’s kind of messed up that you have to have an ultimatum to be treated for it” [Participant 18]. Another participant described a similar experience related to HCV treatment, saying: “and in reference to treating Hep C, I feel like a lot of people associate it with getting clean in general […] The idea is that if you are going to get clean or if you’re trying to cure your hepatitis, you need to be clean in order to do so. Which is a myth maybe that can be debunked whilst we’re here. […] I think part of that stigma is that if you’re still using, you’re still putting yourself at risk for hepatitis” [Participant 33].

These experiences of having services controlled extended beyond treatment specific to drug use. Participants described that their drug use eroded trust with their providers and took precedence over other health needs for which they sought care. As one participant said: “I have chronic rheumatoid arthritis. […] And I’m starting to get that way and my pain’s getting worse and worse. And that’s why I’m still doing what I’m doing. Because I can’t find any frickin’ doctor, nurse, or anybody to listen to me about, ‘Need to put a pain med in there, doc.’ ‘Well, you’re a drug user, IV user, we’re not going to do that’” [Participant 3].

At the same time that participants were struggling to prove that their health care needs were valid, they also reported intersecting social vulnerabilities, such as need to prove their eligibility for benefits, which was dependent on their drug use status. For some participants, this experience felt conflicting and demotivating. One participant described this conflict in detail, saying: “Support afterwards is so important. So important. I ran into some walls that blew my mind when I quit. The biggest wall was, you’re not an addict anymore. That means, you’re not disabled anymore. That means, we can’t help you. But I’m homeless and I don’t have a job and I don’t have a place to live. But it doesn’t matter. You just offered the information that you are clean from a disabling drug. Now you’re not disabled. And I couldn’t even get $20 worth of food stamps a month. They cut me off everywhere. And it wasn’t until I could prove that I had been on drugs for more than two weeks every day – meaning, tracks, physical tracks and an appearance to the physician – that they even considered me for food stamps again” [Participant 4].

As a result, participants worked to avoid unnecessary interactions with health care providers, often leading them to only seek care when urgently needed. As this participant clarified, “unless it’s a pressing emergency, it’s just probably not going to happen” [Participant 8]. Ultimately, participants expressed a desire for care delivery processes that minimize the barriers they often experience, saying: “you should be able to, as long as you have the way to pay for the insurance or whatever, just say, ‘Okay, I want to get treated.’ ‘Here you go.’ And it’d start like that. Because having to wait, people get frustrated and then decide, ‘Hey, I don’t want to get it done at this time because it’s going to take a lot of time out of my day or months and stuff, and I don’t really want to put aside that much time just to get treated” [Participant 7].

4. Discussion

Prior work has documented both the pervasive role of stigma on the experiences of PWID seeking harm reduction and treatment services (Meyerson et al., 2019; Paquette et al., 2018; Biancarelli et al., 2019) and the impact of social vulnerabilities on PWID (Abadie et al., 2021; Grebely et al., 2019; Harris & Rhodes, 2013; Degenhardt et al., 2017). The current study expands on this work by considering the intersectional experiences of stigma and social vulnerabilities of PWID with regard to experiences with and barriers to seeking health care, including preventive care. The experiences that participants described highlight that for many PWID, getting health care results in repeated experiences of stigma and marginalization from intersectional lived experiences and exacerbates the existing barriers they face. In general, this led to a feeling that the burden and costs (both financial and interpersonal) of seeking care outweighs its benefits, such as improved health outcomes.

Both the Fundamental Cause Theory—which posits that social factors that determine access to resources influence health and health care through multiple mechanisms—and Earnshaw and Chaudoir’s (2013) framework of stigma mechanisms for people living with HIV—which characterizes how marginalized groups, such as people living with HIV, experience stigma, and how experiences of stigma contribute to care-seeking behaviors and health outcomes—informed the current study. Both social vulnerabilities (e.g., housing instability, poverty) and drug use carry societal stigma, which, in itself, can be considered a fundamental cause. Earnshaw et al. (2013) specified how different facets of stigma work to influence affective, behavioral, and physical health outcomes and particularly how, as a result of devaluation associated with stigma, stigmatized groups may seek less health care, fueled by a sense of shame, low self-worth, or the belief that positive health outcomes are not deserved (Link & Phelan, 2001; Earnshaw et al., 2009). Our study focuses on the intersection between stigma and social vulnerabilities and demonstrates how both these play out in real time among PWID who need support they are not getting from individuals, health care systems, and societal structures at large. The experiences of our participants manifested the cycles described in these theories, where multiple facets of stigma (resultant from both drug use and social vulnerabilities) were internalized, present in interactions with health care teams and caregivers, further reinforced by the general public and societal structures (e.g., benefits laws), and subsequently resulted in PWID avoiding help-seeking and health care.

This study extends the theories and prior research among PWID that has not been conducted from an intersectional lens by demonstrating that the prejudice and enacted stigma that PWID face related to both drug use and social vulnerability work to reduce PWIDs’ sense of well-being overall, and prevent them from seeking care when needed. For many participants, stigma surrounding the label of drug use overshadowed their actual needs for treatment, particularly for conditions like HCV, which are associated with drug use. Additionally, as participants tried to navigate their health care needs, they experienced the tension between proving their worth as a patient who deserved treatment, while simultaneously proving their need for supportive assistance and benefits because of their drug use. This tension created conflict for participants, as they worked to minimize stigmatizing labels in their interactions with providers, but also needed to rely on those same labels as means to qualify their level of disability. This experience aligns with how Goffman (1974) describes the politics of a stigmatized identity, in which accepting a stigmatizing label can offer benefits, but also sets limits on one’s credibility and social worth. For participants in this study, this contradiction felt like a disempowering losing game, where they had to decide between accepting stigma or further exacerbating their unmet needs and social vulnerabilities.

The intersectionality (Crenshaw, 1989) described in these findings also aligns well with Singer et al. (2017), who established the critical risk of syndemics, or the aggregation of multiple, interacting biopsychosocial conditions such as opioid use disorder, HCV, and HIV. The health care–seeking experiences described by our participants clarify that deleterious effects of syndemics are often further amplified by the intersectional barriers created by stigma, poverty, and unmet social needs. Syndemics encourage a fundamental shift in how models of care delivery are approached, acknowledging that multiple biopsychosocial conditions are interrelated and exacerbate one another, and necessitating the need to move beyond care delivery that operates in siloes. To fully address the pattern of compounding risks created by syndemics, models of care delivery may need to consider stigma as a contributing component of the syndemic itself, and stigma reduction a central goal of health care outcomes

As is asserted by several prior studies and reinforced by these data, enacted stigma can occur across multiple levels and settings, not just through health care, while still contributing to poor health outcomes through reinforcing perceptions of prejudice and devaluation (Earnshaw et al., 2013; Stangl et al., 2019; Muncan et al., 2020; Biancarelli et al., 2019). Multiple clinical implications, therefore, exist. These findings suggest that it is critical for providers and health systems at large to recognize that the health and well-being of PWID is much more dynamic than the specific health concerns they may present. To promote positive health outcomes for PWID, care delivery must work to actively reverse the interrelated ways stigma and social vulnerability negatively influence PWID perceptions of worth, value, and their ability to achieve good health. Efforts should first focus on changing laws, regulations, and system-level policies that perpetuate stigma and discrimination for PWID, in particular regulations that tie access to health care to drug use status. Health systems and care organizations need more focused efforts to implement effective stigma-reduction interventions, including evidence-based training around stigma, infrastructure to more systematically identify and address the social vulnerabilities that create barriers to care, and the use of novel models of care delivery such as low barrier formats and the use of patient narratives within clinical encounters (Charon, 2001). Last, efforts should ensure that interpersonal interactions between PWID and health care teams embody the value and practice of person-centered care, including care that is individualized, holistic, and collaborative (Marchand et al., 2019).

This work has several limitations. First, these data emerged from a parent study focused on formative evaluation for intervention design; while stigma-related theory guided subanalyses for this work, the study overall was not designed using an overarching stigma framework. The study recruited participants from one geographic location with specific regional characteristics, including state-level Medicaid policies that did not have substance use abstinence requirements for HCV care. Therefore, findings may not be transferable to other settings where service delivery models, insurance benefits, and regulations differ. While our sample reflects some racial and ethnic diversity, our small subgroups potentially limitated our ability to detect differences across subpopulations and recruitment sites; more work needs to be done to better understand the perspectives of frequently underrepresented groups, as well as differential experiences of stigma and social vulnerabilities among women who inject drugs. Additionally, all participants self-reported having HCV, which may signify a higher degree of risk behaviors and health care needs than PWID without comorbid conditions associated with drug use. The COVID-19 pandemic likely had influences on the care experiences of PWID, and, though our data collection ended at the very beginning of the pandemic, participants did not refer to pandemic-related impacts on their experiences. Further research should explore these impacts. Future work should also consider the perspectives of treatment providers and community service organizations, as their insights might add value to the knowledge shared from this work. Finally, qualitative methods are, by design, not necessarily generalizable to the broader population from which data are collected but enable a rich understanding of a purposively sampled group.

5. Conclusion

This qualitative study offered us rich insights into the health care–seeking experiences of PWID who reflected challenges related to their complex social vulnerabilities and the fact that stigma plays an inhibiting role in seeking care and engaging with health care teams. Findings underscore the interrelated role that stigma and social determinants play in the lived experience of PWID, and the ways in which they navigate needed health care. Importantly, these findings echo the need to consider novel ways to reverse, not reinforce, both enacted and perceived stigma experienced by PWID seeking care, such as through provider training that normalizes the concept of stigma for all areas of care (not just substance use care), and policy measures that incentivize health care organizations to deliver more equity-informed care. Findings also emphasize the need to further explore forms of care delivery that reduce already heavy burdens for PWID in ways that are person-centered and incorporate understanding of and support for the social vulnerabilities that PWID disproportionately experience.

HIGHLIGHTS.

  • Stigma impacts the care-seeking experiences of people who inject drugs (PWID)

  • PWID often internalize feelings of shame or stigma about drug use

  • Stigmatizing provider interactions affect how PWID share preferences and feel heard

  • For many PWID, the burden of healthcare-related stigma outweighs benefits of care

  • Efforts to reduce internalized and enacted stigma are needed to improve PWID health

Funding Acknowledgement:

This work was supported by the National Institute on Drug Abuse (NIH/NIDA; grant 1R34DA047660). The statements presented in this work are solely the responsibility of the author(s) and do not necessarily represent the views of the National Institute on Drug Abuse.

Footnotes

Conflict of Interest: The authors do not have any personal, professional, or financial conflicts of interest to disclose for this work. The authors did not work with or were otherwise influenced by any external sponsors for this work.

Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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