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Published in final edited form as: J Adolesc Health. 2022 Oct 8;72(1):105–110. doi: 10.1016/j.jadohealth.2022.08.026

Ambivalence and stigma beliefs about medication treatment among young adults with opioid use disorder: a qualitative exploration of young adults’ perspectives

Sarah M Bagley 1,2,3, Samantha F Schoenberger 4, Vanessa dellaBitta 1, Karsten Lunze 1, Kendyl Barron 5, Scott E Hadland 6,7, Tae Woo Park 8
PMCID: PMC10077517  NIHMSID: NIHMS1886910  PMID: 36216678

Abstract

Purpose:

Young adults with opioid use disorder (OUD) have low engagement in treatment with medication for opioid use disorder (MOUD). The objective of this study was to explore the beliefs and attitudes about MOUD among young adults.

Methods:

We conducted a single-site qualitative study of 20 young adults ages 18–29 years with a diagnosis of OUD receiving care at an outpatient program and who spoke English. We used a flexible interview guide with the following domains: experience with MOUD, sources and impact of stigma, and interactions with family, healthcare professionals, and social networks. We conducted a thematic analysis based on deductive codes related to the domains and emergent codes from the interviews.

Results:

We identified three themes. First, participants perceived being on MOUD as stigmatizing. They regarded MOUD as lifesaving but ultimately as a “crutch” hindering their full recovery. Second, young adults expressed ambivalence, distinct from stigma, about MOUD. This ambivalence was related to fear of withdrawal symptoms and concerns about their ability to live independent lives, side effects, and unknown treatment duration. Third, participants felt that MOUD was more than just a means to reduce risk of overdose, it was a means to become fully functioning in their lives.

Conclusions:

In this study of young adults in treatment for OUD, we found that stigma and ambivalence concerning MOUD could explain young adults’ low engagement in care. Interventions addressing concerns about the stigmatizing effects of MOUD and the ambivalence young adults experience related to MOUD could improve engagement and retention of young adults.

Keywords: opioids, medication for opioid use disorder, young adult, stigma

INTRODUCTION

Drug overdose deaths in the United States continue to rise, with more than 100,000 lives lost during the year after the COVID-19 pandemic began in 2020, a 28.5% increase from the same time period the year prior1. Young adults continue to bear a significant burden of this crisis2,3 and opioid overdose continues to be a leading cause of overdose morbidity and mortality for this age group4. Medications for opioid use disorder (MOUD), such as buprenorphine, methadone and naltrexone, reduce mortality, improve engagement in care, and are the recommended treatment for all individuals with OUD5–8. Despite this, young adults are less engaged and have low retention in OUD treatment compared to other age groups9–14. According to a recent analysis of national addiction treatment program data, younger age (18–29 years) is one of the strongest risk factors for MOUD discontinuation by six months15. Low rates of MOUD receipt and treatment engagement are due in part to structural barriers such as treatment availability, prescribing laws, and clinician comfort16–18, however, stigma towards people related to mediations treatment may also play a role19–21.

As defined by the American Psychological Society, stigma is “the negative social attitude attached to a characteristic of an individual that may be regarded as a mental, physical, or social deficiency. Stigma implies social disapproval and can lead unfairly to discrimination against and exclusion of an individual22.” There are different kinds of stigma including self-stigma. Self-stigma is defined by the “internalized shame that people with mental illness have about their own condition22.”As deaths continue to rise, there is an urgent need to identify and address all barriers to engaging individuals in harm reduction and treatment.

Although stigma may impact MOUD treatment engagement, retention, and adherence23 for young adults, their experiences with MOUD have not been well-explored. Because of their developmental stage, stigma or general beliefs about treatment may have an important and distinct impact on them. A key task of young adulthood is to develop identity, establish autonomy, and make independent decisions. These decisions can include choices about health care and taking medications. However, they are often still significantly affected by their families’ and peers’ perspectives. Young adults have lower engagement in MOUD than older adults and prior work has found that they have distinct definitions of addiction and recovery that may impact treatment engagement. Therefore, the objective of this study was to explore the beliefs and attitudes MOUD among young adults to inform and improve models of OUD care for this age group.

METHODS

Study design and population

This was a qualitative study of 20 young adults in treatment for OUD, recruited from outpatient substance use programs at an urban safety-net hospital in Boston from June 2019-February 2020. The institutional review board of Boston University Medical Campus approved the study.

Eligibility and sampling

Eligible participants were between 18 and 29 years old, had OUD as diagnosed by their clinician, were able to speak and understand English, and provide informed consent. Eligibility was not restricted to having had previous experience with MOUD; however, 19 of 20 young adults recruited for this study endorsed current and/or previous treatment with MOUD.

Data collection

The interview guide included open-ended questions covering the following domains of interest: experience with MOUD, sources and impact of stigma, and interactions with family, healthcare professionals, and social networks. The guide has been included as an appendix. For the one participant reporting never having been on MOUD, questions related to MOUD experience were reframed to ask instead about anticipated experience and experiences within the participant’s social network. Interviews ranged in length from 40 and 70 minutes. Interviews were recorded and Audacity (version 2.4.2, 2020) software was used to change pitch and tone of audio recordings. Recordings were then sent for professional transcriptions. All names used in this paper are pseudonyms.

Data analysis

A priori, we planned to enroll approximately 20 participants and anticipated that would assure thematic saturation. During research team meetings and review of transcripts, there was consensus that this was achieved with 20 participants. We used a hybrid inductive and deductive approach for data analysis. A deductive codebook based on the domains assessed in the interview guide and refined based on emergent themes from the interviews24. Two authors (SMB and SFS) analyzed the interviews with NVivo (QSR International Pty Ltd., version 11, 2017) software to apply finalized codes to transcripts. Each transcript was coded independently by two coders and assessed for agreement. Two authors, (SMB and SFS) completed a thematic analysis using an iterative categorization technique to identify key themes.

RESULTS

Participants were aged 21 to 29 years (mean, 26 years). Of the 19 participants, 12 identified as male, seven as female, and one as non-binary. Fifteen participants identified as non-Hispanic White, two as Hispanic/Latino, two as multiracial, and one as Asian American. Three themes reflecting young adults’ experience with MOUD emerged and are described below.

Theme 1: Young adults held internalized stigmatized beliefs about MOUD in addition to experiencing stigma from their treatment providers and social networks.

Despite the perception that MOUD was helpful for their recovery, some young adults in this sample did not view themselves as truly sober while taking medication. When asked about his experience with MOUD, Colin (age 24) shared, “Good and bad, I guess. Good as in, I mean, obviously, I’m clean because of it, but bad because I feel like, I don’t know, it’s kind of more of like me and morals thing. I feel like personally, it’s just like I’m substituting one thing for the next. I’m really not clean, I guess, in reality, but I’m not on heroin.” Simultaneously, he gave MOUD credit for supporting his sobriety and raised a question of whether MOUD treatment is moral. These words demonstrate an internal conflict of how he wrestles with the meaning of his treatment.

Owen (age 28), said: “To me that’s how it feels. It still feels dirty…The reason I say it’s dirty is because, when you get off dope, you go through the sickness. You go through the withdrawals…It’s the worst. Suboxone is the same thing.” For him, suboxone was equivalent with “dope” because of withdrawal which are the same. By using the term “dirty” to describe taking suboxone, Owen revealed his self-stigma about suboxone.

Additionally, young adults experienced stigma toward MOUD from a variety of systems and supports, both by peers and in treatment. For Cliff (age 29), these highly contested beliefs about MOUD manifested as the “bomb question” asked in treatment settings: “When they ask the room of people, ‘Is methadone and Suboxone a good thing? Is being on methadone Suboxone considered sober? Are you considered clean if you’re on Suboxone and methadone?’… It gets heated.”

Some young adults experienced stigma from healthcare providers, including physicians. Ellen (age 24) stated “I’ve had issues with doctors, when they find out I’m on methadone and they’re like, “Ew,” they don’t want to touch me because I’m on methadone. As soon as I say I’m on methadone they put gloves on and just because I’m on methadone, I’ve never been an IV user but once people hear methadone maintenance or opiate maintenance, you’re automatically an IV user, you’re automatically a junkie and all of this stuff.” Not only did Ellen associate her methadone treatment with a negative and stigmatizing experience in health care but painted a picture of a physicians who needed a physical barrier (gloves) to provide healthcare and examine her.

Mutual help groups, such as 12-step programs, were an additional source of MOUD stigma. For some, not engaging in MOUD was a requirement to engage in certain spaces or for sponsorship. Crystal (age 29) also added that age may play a role in the stigmatization of MOUD in meetings. She stated, “It depends on who it is. If it’s somebody who’s been in NA, AA for a long time, like 20 years, they feel like you’re not clean when you’re on Suboxone or methadone or Vivitrol. But if it’s the newer people, like less than 20 years, they seem to accept it. I had one girl that wouldn’t sponsor me before because I was on Suboxone. My sponsor now, she accepted me while I was on Suboxone.” This idea of young age, and a shift in how treatment with medications is viewed was shared by others, Eitan (age 23) said, “I mean I think it’s definitely like a huge cultural shift and again…I think in general people my age are less stigmatized towards medication for all purposes, which is really encouraging and I think are also just less likely to want to fully do the evangelical 12-step culture thing.”

Despite this shift for some, the issues of finding sponsors who would be accepting of MOUD remained a concern. In some cases, this even led to withholding information as Janice (age 28) explained, “I found I was having a lot of trouble finding a sponsor… So the whole point is to find somebody you get comfortable with. But, if I have to lie to you in the first place, now I feel like everything we’re doing is for no reason. I feel like we’re starting off on a bad foot, because even though you don’t know, I know that I haven’t told you that I’m actually on this medical assisted treatment and thinking that you’re not going to approve of it.” For her, in order to have access to sponsorship, she did not feel she could be completely truthful.

Theme 2: Young adults expressed ambivalence, distinct from stigma, about MOUD.

Young adults experienced ambivalence about MOUD that was distinct from stigma. This ambivalence was related to the structural restraints that MOUD placed on their ability to live independent lives, wariness of the side effects, and unknown treatment duration.

Some participants discussed the challenges of having to go to a methadone clinic and the impact that attending a daily clinic has on travel or work. As Nate (age 25) described, “Methadone is great for maintenance. If somebody goes to the methadone clinic every day by all means if that works for you I’m all for it… I don’t want to put myself in a position where it’s like if I want to leave the country on vacation I can’t do so, if I want to do anything for the most part I can’t do so. There’s kind of that fear along with that.” In this case, Nate understood that methadone could be helpful for some and did not express stigmatizing views about methadone. However, he also did not want to be constrained by the need to go to a clinic daily and that consideration impacted his treatment decisions.

Young adults were also concerned about tapering off MOUD because of the potential for physical withdrawal and the fear that it might be worse than withdrawal from heroin. Leanne (age 25) stated “I feel like nobody wants to have to depend on something. And you’re sick if you don’t take it so it’s like… It’s a very helpful medication but still that’s the downside of it. You still aren’t going to feel good. And I feel a Suboxone or methadone withdrawal is worse than a heroin withdrawal because with heroin, it’s like seven days. Suboxone is like two months until you fully feel okay…God, I don’t want to have to go through that.” Similar to Nate, Leanne recognized the benefits of MOUD, but the physical effects of tapering off were significant barriers.

While young adults described MOUD as important components of their recovery, nearly all participants expressed that they did not want to be on these medications for the rest of their lives. Jack (age 27) described Vivitrol, the MOUD he was currently taking, as a “steppingstone” along his recovery journey.

“Even the Vivitrol, there’s no high effects to it, yeah, you’re clean on that, but it’s still an assistive crutch in my opinion. Being 100% without anything for me was the best feeling I’ve ever had in the world. I want to get there one day, but I know I can’t get there without the maintenance right now…I know there’s thousands of people that have been on it over a decade and stuff, but maybe that’s how long the steppingstone is, but I don’t think it should be a permanent for life thing.”

Janice (age 28) agreed, “Kind of like welfare. None of this stuff is supposed to be utilized for the rest of people’s lives. It’s supposed to be a step up to help you out and then you can take it in your own direction after that, as long as you…off correctly, keep yourself safe while you’re doing it…Then you don’t use it anymore…these medications are not the answer, and they’ll never be the answer.” They viewed MOUD as a temporary support and used words such as “bridge”, “crutch”, “back-up assist”, and “backup system” to describe their relationship to MOUD.

Theme 3: Young adults wanted more than to survive their opioid use disorder, they wanted “to be present” in their lives again. MOUD helped with that goal.

Other young adults described the positive benefits that MOUD had on their life. Nate (age 25) shared, “It’s allowed me to live my life. I’m not craving heroin at all. The drug dreams have stopped and stuff. And I’m starting school and I’ve never done this before. I’m starting a whole new chapter in my life. I’m probably further out … I have four and a half years clean, and I’m probably doing more successful stuff and everything than I’ve ever done, but I’m also in treatment with it so it goes hand in hand. I think you need both when you do it. At least I do.” Dora (age 29) shared other benefits, “I like how it gives me the energy to perform as a functioning member of society. It gave me the opportunity to work again. It gave me the opportunity to go back to school.” Finally, Cliff (age 29) said, “But the idea is to just take advantage of it and now I can focus on other things… Like taking the rest of those classes online to get the degree, finding a good get-well job, not jumping back into the cellphone game, maybe working with animals.” For these young adults, treatment with MOUD played an integral role in achieving their goals.

Young adults felt that messages about MOUD being lifesaving were necessary but not sufficient. Eitan (age 23) described,

“So often in the conversation around MAT … and I mean, for understandable reasons like people who are defending MAT based on sort of like well it saves people lives and people die, and I’m like that’s really important, we should save those things but like I think that the … and you know we can throw out numbers and that’s great and obviously like you can quantify number of deaths, and you can quantify someone using or not and like that’s how medical research operates and like that’s what you can communicate to the public. Public really doesn’t care about numbers, side note… it’s really cool that we have medications that cannot just stop people from using and stop people from dying but like genuinely give people a more present life and I think that’s, for me, more than not using.”

They highlight the need to include patient voices in defining relevant outcomes and the need to tailor relevant messages to the public.

DISCUSSION

Young adults in this qualitative study expressed a range of beliefs about the benefits of MOUD and the potential challenges of engaging in MOUD care. Many of the young adults believed that medications had been critical to their recovery but continued to view MOUD as a steppingstone to full recovery, defined by not taking MOUD. They also described significant stigma from a variety of individuals and settings that may have impacted their treatment decisions.

The stigma described by young adults in this study is similar to what has been described in the general adult literature. A recent systematic review of barriers to MOUD found the most commonly reported barrier was negative perception of treatment and stigma21. Other studies have found different kinds of stigma impacting engagement in MOUD treatment including macro-level stigma (general feelings of the public toward medication), systemic barriers to treatment influenced by stigma, and individual level stigma21,25. Stigma specifically towards methadone treatment has been well documented. Authors of a recent qualitative study of adults receiving methadone treatment reported participants experienced high degree of stigma and that it resulted in reluctance to initiate or continue in treatment26. These findings are consistent with multiple other studies that have found patients find methadone regulations stigmatizing and overly restrictive27. Young adults in this study described similar themes as studies of older adults. They spoke about their own stigma toward MOUD as well as the stigma of others such as health care providers, family members, and mutual help group members. It is hard to quantify the impact of words or actions by physicians or peers are compounded over time to impact treatment decisions.

For young adults, who may still be significantly influenced by their peers and social networks, understanding not only their perceptions of treatment but also others’ views is critical in developing effective engagement and retention interventions. Family member beliefs have also been found to play a role. Interestingly, some young adults mentioned a shift toward greater acceptance of medication treatment among younger generations. It is interesting that their perception is that stigma among lower age groups may be shifting given the low rates of treatment engagement and receipt. The consequences of this potential shift are not yet clear. It is possible that stigma will play a decreased role as a barrier over time.

As overdose deaths have continued to rise in the US, a critical response has been to support efforts to expand access to MOUD. Although the issue of stigma emerged in our interviews, young adults often discussed an ambivalence distinct from stigma. In our prior work focused on young adult definitions of recovery, we found that young adults did not want to be defined by their use disorder28. It is possible that this desire to not be defined by a disorder could be a contributing factor toward increased ambivalence towards MOUD that is separate from stigma.. This has important implications for intervention development as well as the need for policy changes. For clinicians providing counseling and advice to young adults, acknowledging, validating, and discussing the challenges of taking a medication that leads to physical dependence and leads to withdrawal symptoms with cession should be part of the initial visit and ongoing during treatment. In our clinical experience, often patients’ ambivalence is dismissed given the life-saving benefits of treatment. For young adults seeking to make decisions on their own, ensuring that their questions are discussed in an open, non-judgmental, and compassionate environment must be the standard of care. This includes not minimizing their concerns. This ambivalence may be more acute for young adults than older adults because of their developmental stage. In our work focused on young adult definitions of recovery, we found that young adults did not want to be defined by their use disorder28. It is possible that becoming physically dependent with risk for withdrawal symptoms is too great a consideration for some. It is also possible that lack of attention to their concerns may lead to disengagement from care. In addition to considering patient-level interventions to address ambivalence, reform of regulations, specifically related to methadone, are needed29. Separating methadone treatment from other addiction care continues to enforce a system that establishes barriers to access instead of making treatment as accessible and individualized as possible29. Implicitly, this sends a message that there is something different about methadone treatment that contributes to the stigma related to treatment.

Finally, young adults talked about the profound way that treatment with MOUD allowed them to re-engage in life and attain goals that they have for themselves. Promoting MOUD as the most potent tool to prevent opioid related death remains of critical importance and should remain part of any messaging about its benefits. However, we cannot lose sight of the fact that young adults embarking on adulthood should be focused on goals including careers choices, further education, and nurturing new relationships and families; benefits of MOUD should include obtaining such goals. Future interventions could more explicitly include identifying goals unrelated to substance use disorder as part of treatment planning.

There are limitations to this study. First, the majority of the sample was white and male, reflecting the clinical population. However, given the significant inequities in receipt of MOUD found among Black and Hispanic population in the context of rising overdose death rates in these populations, future work must include their voices30. Furthermore, the sample was treatment seeking and it may be that those not in treatment have more stigmatized views of treatment or would have offered other perspectives about the impact of stigma. In the clinical setting where we recruited, most patients are treated with buprenorphine and very few with naltrexone. It is possible that because naltrexone is an antagonist with no risk of misuse potential, there is less stigma although this concept did not clearly emerge in these interviews. In addition, the sample was drawn from the Boston, Massachusetts region. In general MA has high access to MOUD compared to other areas. The results may therefore not be generalizable. Finally, we did not collect current type of medication treatment and so cannot examine whether kind of treatment impacted perceptions about stigma.

CONCLUSIONS

In this study of young adults with opioid use disorder, we found multiple potential explanations for why young adults may have low engagement in care. Future research should examine models of care to improve engagement and retention of young adults that include developmentally responsive interventions that mitigate barriers to engagement and retention by addressing stigma and ambivalence.

Implications and Contributions.

Young adults with opioid use disorder (OUD) have low engagement and retention in recommended treatment with medication for OUD. In this qualitative study of young adults with OUD, participants identified potential intervention opportunities to improve care: addressing ambivalence, decreasing stigma, and offering holistic care.

ACKNOWLEDGEMENTS

We thank the participants in who participated in this study for sharing their perspectives with us.

Funders:

Funding for this work was provided by the Boston University Clinical and Translational Sciences Institute (1UL1TR001430). Ms. Schoenberger and Dr. Bagley’s effort was supported in part by NIH/NIDA 1K23DA044324-01. Dr. Hadland’s effort was supported in part by NIH/NIDA K23DA045085 and L40DA042434. Dr. Park’s effort was supported in part by NIH/NIDA K23DA044321, and Dr. Lunze’s in part by NIH/NIDA R00DA041245 and K99DA041245.Supporting organizations had no further role in the study design, in the collection, analysis and interpretation of data, in the writing of the report, or in the decision to submit the paper for publication.

List of Abbreviations

OUD

opioid use disorder

MOUD

medications for opioid use disorder

YA

young adults

Footnotes

CONFLICT OF INTEREST

None of the authors report a conflict of interest. The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of Boston University or any of its academic affiliates.

Conflicts of Interest and Funding Source:

There are no conflicts of interest to report.

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