Qualitative characterizations of misinformed disclosure reactions to medications for opioid use disorders and their consequences

Abstract

Introduction:

Methadone and buprenorphine/naloxone medications are among the most effective treatment options for opioid use disorders, yet many people remain misinformed about their benefits and hold negative perceptions about the use of medications to treat opioid use disorders. Such perceptions, especially negative perceptions based on misinformation, may be especially harmful or stigmatizing within the context of disclosure (i.e., telling another about one’s opioid use disorder history or treatment), inhibiting important recovery outcomes and sources of social support.

Methods:

Therefore, using the Disclosure Process Model as a framework, the current study seeks to characterize and compare participants’ perceptions of stigmatizing reactions to their disclosures of MOUD use that stem from misinformation about methadone or buprenorphine/naloxone. Participants included people who are actively receiving MOUD as treatment.

Results:

Results suggest that participants (N = 52) receiving both types of medications experienced similar stigmatizing reactions to disclosures. Participants also reported treatment consequences of misinformed reactions to their disclosure, such as dropping out of support groups (e.g., Narcotics Anonymous) or prematurely ending their medication use. Further, the paper provides participants’ recommendations for avoiding or managing misinformed disclosure reactions.

Conclusions:

Short-term intervention efforts may promote strategies to manage misinformation, equipping individuals to respond to misinformation surrounding their medication use. Long-term interventions may target misinformation about methadone and buprenorphine/naloxone medications to increase health literacy, reduce stigma, and combat cultural ambivalence within communities, as well as promote recovery among people receiving medications for opioid use disorder.

1. Introduction

Negative or stigmatizing reactions to disclosures of drug use and treatment among people who are living with an opioid use disorder are particularly harmful, with cross-cutting effects that not only signal social rejection but may also adversely impact recovery and treatment outcomes (Chaudoir & Fisher, 2010; Earnshaw et al., 2019). The act of disclosing or “coming out” is a psychosocial process that includes sharing personal information about one’s opioid use disorder history, diagnosis, and/or treatment with others for the first time (Chaudoir & Fisher, 2010). While previous research has explored disclosure experiences among people living with opioid use disorders, we know less about how the disclosure recipient reacts to disclosures, especially disclosures specific to the medications used for opioid use disorders (MOUDs), including methadone and buprenorphine/naloxone (BNX; Earnshaw et al., 2019; Paris, Herriott, Maru, Hacking, & Sommer, 2020). Further, research exploring BNX disclosures (e.g., Suboxone) and making comparisons between BNX and the established, negative social perceptions of methadone is limited (Earnshaw, Smith, & Copenhaver, 2013; Randall-Kosich, Andraka-Christou, Totaram, Alamo, & Nadig, 2020; Smith, 2010). Therefore, the current study will qualitatively explore disclosure reactions to MOUDs (methadone and BNX) and provide further understanding of how people manage stigmatizing disclosure reactions. These characterizations, along with participant-identified strategies to manage or avoid a stigmatizing disclosure event, can strengthen patients’ emotional well-being, interpersonal relationships, and resultant treatment outcomes by maximizing the likelihood of a supportive disclosure experience (Camacho, Reinka, & Quinn, 2020; Chaudoir & Fisher, 2010).

Taking MOUDs is not necessarily observable by others, but having the identity as someone who takes MOUDs can be highly stigmatized or judged if disclosed to others. In this way, taking MOUDs is considered a concealable stigmatized identity or a devalued attribute or identity that is not immediately knowable to others (Goffman, 1963). Previous research has shown that while benefits exist to disclosing a concealable stigmatized identity, including higher self-esteem, increased social support, and better treatment outcomes (Chaudoir & Quinn, 2010; Stirratt et al., 2006; Tracy & Schluterman, 2013; Weisz, Quinn, & Williams., 2016), such disclosures are also a personal and nuanced process that can expose an individual to stigma based on misinformation. As such, an individual’s reaction to a disclosure plays a pivotal role in the disclosure process and has lasting implications for a patient’s recovery trajectory (Earnshaw et al., 2013).

The Disclosure Process Model (Chaudoir & Fisher, 2010) highlights the importance of disclosure reactions. According to the Disclosure Process Model, the act of disclosure is cyclical, often progressing from intrapersonal decision-making to an interpersonal, social process via the disclosure event. Further, the disclosure event can elicit long-term, psychosocial outcomes that can be beneficial (e.g., lower psychological distress) or detrimental (e.g., internalized stigmatization) for recovery depending upon the partner’s reaction to the disclosure (Earnshaw et al., 2019). Negative or stigmatizing disclosure reactions can be especially impactful on vital outcomes (Camacho et al., 2020). Stigmatizing disclosure reactions can reinforce negative self-image and can further act as a barrier to treatment outcomes through behaviors such as avoidance and decreased motivation for treatment (Brousseau et al., 2020; Luoma et al., 2007). Moreover, stigmatizing reactions to disclosures among people living with opioid use disorders can facilitate a negative cascade of outcomes, in which fears of social rejection promote concealing behaviors that can later influence substance use and limit treatment engagement (Camacho et al., 2020; Earnshaw et al., 2019).

1.1. MOUD disclosure

Research has not fully explored characterizations of disclosure reactions to MOUDs despite reactions implications for treatment outcomes. People receiving MOUDs can feel highly stigmatized due to living with two concealable stigmatized identities (a “layering effect”) of being a person in recovery and a person engaging in MOUD (Earnshaw et al., 2013). Someone taking MOUDs may experience the elevated effects of intersectional stigma stemming from a history of opioid use and misinformed social perceptions of MOUDs (Turan et al., 2019). Among the various MOUDs, methadone is a full Mμ agonist that can be effective against severe opioid use disorders, and patients and providers have characterized it as an essential resource to promote long-term recovery (Whelan & Remski, 2012). However, despite its benefits, methadone has also been simultaneously mislabeled as a “crutch” or alternative mechanism of dependence and debilitation, leaving those who engage in methadone treatment to feel as if they were stuck between two worlds as “not quite a junkie, not quite conventionally clean” (Murphy & Irwin, 1992; Schwartz, Kelly, Mitchell, Brown, & O’Grady, 2011). Research has explored less disclosure experiences related to BNX. As a partial M agonist that can limit the risk of overdose, BNX is a newer counterpart to methadone that has demonstrated comparable and sometimes superior effects for positive recovery outcomes (Rothman et al., 2000). While research has shown both methadone and BNX to reduce cravings, increase treatment retention, and facilitate stable recovery, some patients, who prefer BNX’s logistical advantages such as treatment setting flexibility and fewer adverse complications, view BNX more favorably than methadone (Koehl, Zimmerman, & Bridgeman, 2019). The difference of opinion may provoke unique reactions to disclosures of methadone versus BNX that can have particularly important impacts on treatment outcomes among those taking MOUDs.

More research is needed to understand the nature of stigmatizing disclosure experiences among people engaging in methadone or BNX. Research has suggested that such negative experiences are likely the result of poor or unsupportive disclosure reactions (Camacho et al., 2020). Furthermore, negative disclosure reactions may stem from negative perceptions that are driven by misinformation surrounding methadone and BNX (Roose, Fuentes, & Cheema, 2012; Woo et al., 2017). Misinformed beliefs about MOUDs overshadow the benefits of the medications and can potentially contribute to heightened stigma-related distress and negative treatment outcomes such as poor engagement or retention (Miller, Solomon, Varni, Hodge, & Bunn., 2016; Roose et al., 2012). People taking methadone felt that misinformation about their recovery medication was a barrier, with a majority admitting to hiding their methadone status for fear of a losing relationships or employment (Frank, 2011). We know less about misinformed reactions to BNX disclosures. Research has suggested that BNX perpetuates similar misconceptions to methadone among patients and providers, including perceptions that BNX demonstrates a lack of “willpower” or is a replacement drug that still facilitates a high (Randall-Kosich et al., 2020). However, some distinct differences exist between methadone and BNX that may influence differential disclosure reactions. Furthermore, the majority of research assessing misinformation about methadone or BNX does not account for misinformation perpetuated within the context of disclosure nor does it characterize the consequences of such misinformation for patients’ outcomes.

1.2. Current study

The current study seeks to characterize misinformed disclosure reactions. We explore the reactions of disclosure recipients from the perspectives of people living with opioid use disorders who are actively receiving methadone or BNX. More specifically, the goals of this study are to characterize and compare stigmatizing disclosure reactions stemming from misinformed beliefs about methadone or BNX. Additionally, the participants reported treatment consequences of misinformed disclosure reactions and provided recommendations to avoid or manage misinformed disclosure reactions. We expect that the disclosure reactions will differ depending on the type of MOUD (Methadone vs. BNX). Characterizing disclosure experiences that were stigmatizing and their consequences can provide additional information about barriers to positive treatment outcomes that resulted from the stigma and misconceptions. Further, practitioners can apply to collective interventions participants’ recommended strategies, which can improve health literacy surrounding MOUDs and expand knowledge of their benefits.

2. Methods

2.1. Sample

The current sample (N = 52) drew participants from an original parent study, UDisclose, of 146 participants. Fifty-two participants qualified for the current study by disclosing their MOUD use and describing their experiences. Participants described their disclosure experiences within the parent study, a longitudinal study of people receiving treatment for opioid use disorders in the Northeast, which lasted from March 2018 to May 2019. Individuals were eligible to participate in the UDisclose project if they were 18 years or older; and were in treatment for a substance use disorder and were planning to tell someone about their substance use history, recovery, or treatment within the three months following their baseline appointment. The primary author and another member of the research team received training in qualitative methods and conducted all interviews.

The study recruited participants with fliers and through word of mouth at two treatment locations: one in a rural environment and one in an urban environment. Study staff asked participants to take part in a quantitative survey with a qualitative interview portion at two time points (approximately three months apart), lasting from 1 to 2 h. Surveys and interviews took place one-on-one in private rooms within the participant’s respective treatment location. The first session included qualitative surveys spanning substance use, treatment environments, and social networks, with the qualitative interview asking open ended questions about treatment experiences, stigma, and disclosure. The goal of the first session was to explore to whom the participant planned to disclose their substance use history, recovery, or treatment and record participant expectations regarding how the disclosure conversation may go. After three months, study staff asked participants back for a second session to describe their disclosure conversation. Participants answered similar measures to the first survey and the qualitative portion focused on how their disclosure conversation went. The study compensated participants with $50 in gift certificates to local establishments for each interview. The study received institutional review board approval, and all participants provided informed consent to be recorded during their interviews.

2.2. Qualitative interview protocol

The research team used a grounded theoretical approach to create semistructured interview protocols that explored participants’ experiences with disclosure. The qualitative portion of the Udisclose study consisted of eight questions, lasted about 25 to 30 min, and was modeled after the Valve Replacement and Knee & Hip Needs Assessment and the Center for Shared Decision-Making personal interview questions for clients’ key informants (Sepucha, Stacey, & Clay, 2011). The current study used transcripts from both timepoints of the UDisclose study. The baseline interview protocol began with a broad question asking people living with opioid use disorders to describe who they considered telling about their recovery. Study staff also asked participants how they were planning to disclose, how difficult the decision to disclose is, and what makes the decision difficult. The study also asked participants about reasons to disclose, reasons not to disclose, and asked if there was information that could make the decision easier. Finally, the study staff asked participants if they received any support or help in making this decision.

Research staff asked participants three months later (Time 2) to describe their disclosure experiences, including who they told and if anyone had ever responded positively or in a supportive way to their disclosure, as well as, if anyone had ever responded negatively or in a stigmatizing way to their disclosure of MOUDs. For those who had responded positively, the study asked participants to detail their relationship with this person, how the conversation went, what was said, how the other person responded, and if/how their relationship with this person has changed since the disclosure. The study asked the same questions for those who responded negatively. Finally, each participant answered a series of questions about the disclosure experience, thinking more generally (beyond the individual disclosures within the past three months). Questions included how hard or easy was it to decide to disclose to someone; did anything surprising ever happen during a disclosure; overall are you happy with your decisions of who you have told; what advice would you give to people embarking on the disclosure process; and how might counselors or systems of support help in the disclosure process?

2.3. Analysis

Study staff first transcribed digital recordings of interviews for later analysis. Two members of the study team first read all of the transcripts following recommended methodology for qualitative data analysis (Miles & Huberman, 1994). They created a codebook that listed themes, derived both inductively and deductively, accompanied by a detailed description, inclusion/exclusion criteria, and example quotes. Themes included: (1) negative disclosure experiences, (2) positive disclosure experiences, (3) disclosure content, (4) mentions of methadone, suboxone, or associated terms (e.g., medications or dose), (5) advice and recommendations about disclosure, (6) reasons to disclose, (7) reasons not to disclose, (8) mode of communication, and (9) disclosure satisfaction. Given the aims of the current analysis, our study focused on the first five themes. We then created subcodes to reflect patterns of disclosure events (e.g., substitution narratives, consequences). The team tagged each participant with their medication type and other demographics using information from the participant medical files. Two trained members used Dedoose, a qualitative data management program, to achieve an interrater reliability of (Kappa = 0.85) by coding a random subset of codes. For the current study, we included only the participants who described MOUD disclosure experiences. The study team assessed a prospective saturation calculation using a base size of five, in which the threshold of ≤0.1% new information was reached at 10⁺² interviews (Guest, Namey, & Chen, 2020). Therefore, the total sample size reached saturation for both those receiving methadone and BNX.

3. Results

3.1. Sample demographics

The study asked all 52 participants to report on their current demographic information, and the research team used client medical charts to document their MOUDs, where n = 39 received methadone and n = 13 received BNX. All participants reported a primary substance of heroin, narcotics, or some combination of narcotics and another substance (e.g., cocaine). Overall, the majority of the current sample included females (67%) who identified as non-Hispanic White (76%) in treatment for opioid use disorders at a suburban location (71%). Further, the majority of participants identified as heterosexual (87%). Participants had a mean age of 36 years (SD = 8.7) and length of time in recovery ranged from zero to twenty years (M = 3.7, SD = 4.5), where 16 (31%) individuals identified as having less than one year of recovery. The study also recorded the number of participants who mentioned certain subcodes (see Table 1). Analyses demonstrated that no significant differences existed between participant demographics at the two sites.

Table 1:

Participant quotes outlining misinformed disclosure reactions and consequences.

Theme	Medication	Quote
Substitution Narratives	Methadone	1. I know I’m still on Methadone, but they don’t get that it’s better than what I was doing. My parents just say its synthetic heroin.
Substitution Narratives	BNX	2. He would say I’m just doing a different drug now. He is the one that wanted me to come here to get treatment, but now he’s like I’m stuck and I’m still on drugs because I’m coming here to get Suboxone. Meanwhile he is doing nothing about his own drug use or drinking.
Treatment Atmosphere	Methadone	3. I had to tell my boss that I came to the clinic and he was just so disgusted. He doesn’t like the people that go to that clinic, so he ran a background check on me after and fired me saying he doesn’t want to be responsible leaving me at people’s properties and something come up missing.
Treatment Atmosphere	BNX	4. It’s really hard, just the different reactions to the clinic. At first I was embarrassed to come here, like so embarrassed just to stand in line. Everyone who saw you judged thinking you are just standing there for heroin substitutes. And just ‘junkie’ that word makes me cringe- but that’s the word that comes to mind for people’s reaction.
Consequences	Methadone	5. They’re glad that I’m not using, but they’re like, ‘Okay, so when are you getting off Methadone?’ It’s their biggest thing like you really need start progressing and get off Methadone now.”
Consequences	BNX	6. Some people like in NA, for example, if tell them you’re on Suboxone or something like that, that you’re not in recovery, you’re still on drugs and you’re just substituting. And people come in there like always high, like currently high, and triggering everyone but I’m the problem. Like that’s so stupid. I stopped going.

Note. N=52 participants. BNX= Buprenorphine/Naloxone medications.

3.2. Misinformation & consequences

Participants disclosing their methadone or buprenorphine/naloxone treatment to someone new reported negative reactions that were based on misinformation. Regardless of which medication they received, participants reported receiving similar disclosure responses that reflected a general lack of understanding about the benefits of MOUD. Misinformation consisted of substitution narratives (i.e., MOUD are an alternative form of heroin) and stigmatizing misconceptions about the treatment atmosphere among both those receiving methadone and BNX treatment. Participants also reported that misinformed disclosure reactions had negative consequences for their treatment-related behaviors.

3.2.1. Substitution narratives

Participants perceived that disclosure recipients would have more misconceptions surrounding methadone than BNX treatment. Several participants receiving methadone treatment disclosed receiving BNX (e. g., Suboxone) or naltrexone (e.g., Vivitrol) treatment instead due to anticipated stigma. As one participant theorized, they anticipated that disclosing an alternative medication to methadone would gain a more favorable reaction: “It was the methadone part that was hard, he thought methadone is just like heroin, so let’s just say if I told him I was on Suboxone, I wonder what he would have said then.” One participant who used this strategy explained, “As a property manager my mom knows people on methadone and doesn’t like them, so I just told her I get the Vivitrol shot and not about going to the clinic.” Similarly, a second participant explained, “She doesn’t think that methadone is really recovery, so I said I’m on Suboxone at a clinic and told her about the blocker in it.” Despite these assumptions, however, disclosure recipients responded to BNX and methadone treatments with similarly misinformed criticisms that largely focused on substitution narratives.

Participants receiving methadone or BNX treatment reported receiving similar disclosure reactions in which disclosure recipients compared their treatment to heroin and characterized it as “substituting addictions” (Table 1, Quote 1). One participant on methadone treatment reported, “He said methadone is the same thing as heroin, like I’m basically substituting and it’s legal heroin. I honestly feel more stigmatized because of methadone than drug use.” Disclosure recipients were similarly misinformed about BNX treatment (Table 1, Quote 2), as one participant explained, “I told my dad I’m taking Suboxone and how it helped me get off and I’ve been clean for like three months. His only response was I was stupid to get stuck on a new drug.” Often, disclosure recipients who endorsed substitution narratives also subscribed to other types of misinformation, such as considering opioid use disorders to be a choice and not a disease, “My mom said I just traded an illegal drug for a legal drug and she’s still paying for my drugs through taxes. She doesn’t believe in addiction and thinks it’s selfish”; or accusing the person in recovery of using their treatment as a way to get high, “He thinks taking Suboxone is still getting high. Like I’m not trying to get help because I still need drugs every morning.” Further, participants were also told that they were not truly in recovery because of their medications. As one participant reported, “They were like, ‘we thought you were doing so well, and then we find out you’re on this stuff. So, when are you actually going to get clean?’” Participants receiving this type of disclosure reaction felt that it dismissed their achievements and reported feeling hurt, judged, or “watched all over again”; as one participant explained, “Now they’re always watching and waiting for me to screw up. It’s like I’m always on stage and it’s stressful all over again.” Moreover, participants described hiding their methadone or BNX treatment because others equated their treatment plan with failure or “backsliding.”

3.2.2. Treatment atmosphere

Participants also described that their disclosure recipients had negative preconceptions toward recovery clinics. Participants receiving methadone and BNX reported similar stigmatizing reactions to their treatment atmosphere (Table 1, Quotes 3–4). As one participant reported, “Methadone carries some negative preconceptions—people think of the methadone clinic as a seedy building on the corner in West Park Heights, Baltimore, with a long line of people needing a fix.” Additionally, a second participant described how his disclosure recipient considered him a “junkie” because he visited the clinic daily. Another participant explained her daughter’s reaction, “She doesn’t want me at the clinic or making friends. She doesn’t want me to think I blend in with the classless people here. She told me, ‘You can’t bring them to our house because they’ll steal.’” Participants reported feeling conflicted by these comments, suggesting that the misinformed stereotypes used to characterize the treatment clinic communicated failure and were often internalized as stigma: “There’s a stigma attached to the clinic. By being there you’re acknowledging a weakness in you.” Surprisingly, participants also reported negative misconceptions among disclosure recipients who worked within SUD treatment facilities. For example, one participant described how his mother’s bias affected him despite her experience working at a methadone clinic: “She knows about methadone but also nothing about it. She had a few bad clients who abused it, sold it, and stole from her and now that’s her experience. I’m embarrassed like, not everybody is like that.”

Additionally, among those receiving BNX treatment, some disclosure recipients characterized the clinic as a “sham used to keep people on drugs and money flowing,” demoralizing the treatment clinic as a subsidized hustle where the “undeserving” go to maintain active addiction versus work hard toward stable recovery. Other participants reported that they agreed with this narrative, with one participant remarking how methadone clinics were “such a sad way to spend government money.” Such agreement communicates an active attempt to distance the self from the stigma associated with the clinic. Some participants took this a step further, suggesting that by taking BNX medication over methadone, they were utilizing the clinic “correctly.” For example, “Some people come here to get 100 mgs of methadone every day to get high or last through work and get heroin later, but I’m here for Suboxone and am really trying” or “I really didn’t want to say I was on methadone so I got Suboxone because it’s harder to abuse drugs and feels like the right way to do it.”

3.2.3. Consequences of misinformation

As a consequence, misinformation shaped both the advice recipients recommended and how the participants applied misinformed reactions to their recovery. The first consequence stemmed from recipients believing in misinformation about methadone and BNX. As a result, disclosure recipients gave advice to participants that conflicted with their treatment plan. One such recommendation, which recipients gave to both participants receiving methadone and BNX treatment, was encouragement to prematurely stop their medications (Table 1, Quote 5). As one participant described, “She doesn’t like the idea that I’m on methadone. She thinks I’m substituting one for another. She wants me to hurry up and get off of it, like now.” Some expressed that these recommendations made them feel as if the disclosure recipient’s support was conditional and equated lower dosage with recovery progress. For example, “They were like we’ll pay for rehab, but we really won’t talk to you until you’re off this stuff. It felt like an ultimatum and I’m trying hard to lower my dose every week.” Disclosure recipients made similar recommendations to participants taking BNX. For example, “She is not happy about Suboxone and told me to come down off it and not stay on it for long because it’s bad for my body.” Participants reported being encouraged to stop because, “Suboxone is affecting your life and your body and making you sick” or being told that “once you take methadone you’re basically a lifer, people rarely get off.” These misinformed opinions equate recovery with abstinence and suggest that methadone and BNX medications are viewed as a temporary band-aid for withdrawal versus an evidence-based tool that facilitates new patterns of behavior and allows time for positive development. Further, some participants agreed with this advice and sought to lower their dosage after their disclosure experience: “She printed out a packet full of reasons methadone is bad for me and said I had to get off. That week I started lowering my dose way down.” However, this “progress” is not necessarily a decision based on medical advice and in line with the participant’s treatment trajectory. Rather, some participants claimed that by lowering their dose they were, in a sense, offering a compulsory olive branch meant to patch up relationships at the expense of their recovery. As one participant explained, “My dad is very stern, an AA purist [believing recovery is solely abstinence based] and we used to have such a good relationship. I needed medicine as a tool but to him I’m just messing up. That’s the biggest reason I’m lowering my dose, I just feel like I’m living a lie.”

The second consequence includes how participants applied misinformed disclosure reactions to their recovery. While some participants claimed to get help from support groups such as Narcotics Anonymous (NA), others receiving both MOUDs reported quitting such groups due to misinformed reactions. For example, one participant explained her experience after disclosing her methadone medication, “You’d think they’d be happy for you, but they were like, ‘You need to get off that because you look bad and will never get a job. It’s a crutch and you’re still addicted.’ So, I won’t go back.” Another participant on BNX medication received a similar reaction saying, “I shared at NA about Suboxone and they said, ‘You’re not really clean, it’s not a solution. You still have to put drugs into your system.’” Further, the participants receiving this reaction stated feeling surprised, as one explained, “I shared about methadone and was surprised it wasn’t positive. Methadone was really stigmatized, and I was told I didn’t count as clean because I was on drugs.” This participant went on to explain his reaction saying, “NA may help some people but seriously, methadone is an approved medical treatment and yeah, it made me never want to go back there.” Other participants claimed they left NA support groups for two reasons, the stigmatizing responses to medication combined with a potentially triggering atmosphere. These participants also pointed out the potential hypocrisy of this stance on medication (Table 1, Quote 6), with one reporting, “For me and my husband it was helping going to NA, but then I get told I’m not clean and I don’t count. Meanwhile, the guy high next to me on actual drugs gets everyone’s support.” Another participant described feeling like “a piece of crap” at a meeting and went on to say, “I wish NA would change the stigma of medications at meetings. They need education. There could be someone who is not as good in their ‘resolve’ that the clinic could help. That message could be messing with somebody’s life.” Participants who recounted such responses also claimed to quit the support group. As one participant explained, “I expected that type of judgement from people like my dad. Here I am, embarrassed and ashamed. NA was a place to learn to accept myself, but I had to hide a part of myself.” The quote suggests that, for some, NA did not provide a supportive atmosphere of acceptance. Rather, in stark contrast to the support group’s commitment to unity, cooperation, and support, some participants felt NA minimized their recovery achievements and did not feel as though they fit into NA’s singular vision of recovery.

3.3. Participant recommendations to manage misinformation

Participants recommended several strategies that people could use to manage misinformation and invite more interpersonal support. Participants receiving methadone or BNX treatment recommended similar strategies. Participants advised that individuals be selective in to whom they choose to disclose and suggested that a full disclosure of medication is not always necessary. As one participant explained, “There’s no reason to expose yourself to those stigmatized opinions if you don’t need to. Some people still look down on certain medications so it can be a sensitive subject.” Another participant further described the importance of being selective: “In telling someone, you are adding a tool to your toolbelt. So only tell people who will be constructive for your recovery.” Participants recommended that it might be possible to focus the conversation on recovery and avoid a possible confrontation on medication choice by only sharing what the disclosure recipient needs to know to be helpful (Table 2, Quote 1). However, participants also acknowledged that there are times when this will not be possible. In such cases, participants advised having support systems ready to talk to or debrief with after the disclosure conversation (Table 2, Quote 2). For example, one participant suggested: “Find somebody positive who believes in you. Because if it goes the wrong way, it can really tear you down. So, find maybe someone in recovery that’s strong and believes in you to talk to.”

Table 2:

Participant quotes outlining recommendations to manage misinformed disclosure reactions.

Recommendation	Quote
Be Selective	1. Just make sure you trust the person, that’s the biggest thing, and if you have a feeling they’re going to be condescending or negative don’t even tell them, because you don’t have to, you don’t need that stressor added to the fact of trying to go through recovery. Or keep it short, you don’t have to tell them about Methadone.
Alert Support Systems	2. I would say you have to be around people or have someone to fall back on, positive people. You need their support. Like, in case it goes bad, meaning in case telling the person about your medications goes bad you have like a support system to help you through.
Come Prepared	3. With my mom, I gave her printouts to let her know the benefits of methadone and everything. I would encourage that, to give them some kind of literature, take that with you when you tell them, because for overall like most people are negative about the clinic and I think it’s just because they don’t know enough. Give them the right information.
Advocate for your Recovery	4. Just be confident in your recovery, like don’t let their response change what you’re doing. Don’t let a negative response make you go down back to using or stop treatment. You know what I mean? Like okay, so if they say, “Oh that’s not going to help you” or whatever just be confident in your recovery.

Note. N=52 participants.

Participants additionally recommended coming to the disclosure prepared with accurate information (Table 2, Quote 3). Participants suggested that being prepared with resources that identify the benefits of medication (e.g., websites, articles, brochures) and/or developing a “game plan with your therapist” can facilitate a positive conversation. One participant described using this strategy when confronted with misinformation about Suboxone: “She said, ‘Why can’t you just do it on your own?’ so I said, ‘Suboxone has a blocker in it.’ I explained how you can’t get high or overdose and more about it.” This participant went on to say that she encouraged her sister to look up reliable information while they were talking, “after I started putting out the good things about it and how much it has helped me, that’s when she started being positive.” An additional recommendation from participants included advocating for one’s recovery plan (Table 2, Quote 4). As one participant stated, “I got myself in a safe-like place mentally beforehand. I made peace with my goals and myself so that you’re not letting other peoples’ opinions sway you.” The mindset of “you know what’s best for you” was deemed important by participants who explained that they often had to reorient conversations away from misinformation by positioning their recovery goals and experiences into focus: “I said, look no one wants to be on medications but I’m building my life and getting stronger in the meantime. I needed her to understand that if I hadn’t started methadone, I would have died.” Further, participants described how focusing on the help they received with treatment allowed for a more purposeful conversation about recovery. For example, one participant said, “At first they thought I was substituting, but I explained my recovery plan and goals. I just kept describing my groups, counselor help, and how they help with job searches and everyone was actually happy for me after that.”

4. Discussion

Our results illustrate that people receiving methadone or BNX treatment experience misinformed reactions to disclosures about their medication use that may have consequences for their treatment, and the article highlights recommendations from people receiving MOUDs for how to manage such misinformation. Participants described similar misinformed reactions to both medications despite an initial hypothesis that people disclosing BNX treatment might receive more favorable reactions than those disclosing methadone treatments. Misinformed disclosure reactions consisted of substitution narratives and stigmatizing assumptions about the treatment atmosphere. As a consequence of this misinformation, participants described receiving recommendations to stop their MOUD and reported leaving support groups such as NA. Participants recommended several strategies that people could use to manage misinformation and create a more supportive disclosure experience.

Results from the current study support previous literature, which suggests that negative perceptions surrounding methadone or BNX treatment are often characterized by misinformation (Beyrer, Malinowska-Sempruch, Kamarulzaman, & Strathdee, 2010; Earnshaw et al., 2013; Roose et al., 2012). Similar findings include experiences of enacted stigma among people in methadone treatment, such as social rejection, being classified as a “junkie” or “criminal”, and feeling ashamed of being seen at a methadone treatment clinic (Beyrer et al., 2010; Earnshaw et al., 2013; Woo et al., 2017). Similar misinformed reactions were reported by participants disclosing BNX treatment contrary to expectations and despite previous literature suggesting that BNX treatment is viewed as more favorable or less stigmatizing among people living with substance use disorders (Rieckmann, Daley, Fuller, Thomas, & McCarty, 2007; Schwartz et al., 2008). Resultant misinformation during disclosure underscores a disconnect in health literacy within the general public (Cioe et al., 2020). Participants also reported similar consequences of misinformed reactions, including prematurely lowering their treatment dosage and leaving support groups such as NA. Advice to prematurely lower dosage or treat OUD treatment medication as a temporary solution runs contrary to the available clinical data (Kimber et al., 2010; Samples, Williams, Crystal, & Olfson, 2020). Moreover, multiple studies have demonstrated a positive relationship between dose and treatment outcomes for both methadone (see Fullerton et al., 2014 for review) and BNX treatments (see Fareed, Vayalapalli, Casarella, & Drexler, 2012 for review), suggesting that prematurely lowering one’s dosage can have adverse outcomes on recovery. Further, participants illustrated experiences of stigma and misinformed reactions from members of NA, which is consistent with other studies (Monico et al., 2015; White, Budnick, & Pickard, 2011; Woods & Joseph, 2015). In light of this reaction, participants stopped attending NA, claiming the counterintuitive hypocrisy of a group offering overwhelming support to people who are actively using substances while demonizing treatment as “getting high every day.”

Participants within the current study offered several recommendations to manage misinformation and promote a more constructive conversation about positive recovery. Despite previous literature highlighting the importance of disclosure, we know less about the actual strategies that people living with OUD use to manage misinformed reactions to treatment. Such advice is important, as it can help to reorient toward a more positive conversation as well as protect against potentially stigmatizing reactions and their negative impacts on relationships, treatment outcomes, and internalized stigma (Chaudoir & Quinn, 2010; Earnshaw et al., 2019). Participant-recommended strategies included: be selective, alert support systems, come prepared, and advocate for your recovery.

The first piece of advice is to be selective about the disclosure recipient. Participants advised that a person have a positive mindset and focus on what the disclosure recipient needs to know to assist recovery or treatment efforts. Some participants also cautioned that it might not always be useful to share that they use MOUDs if the disclosure recipient is not likely to be supportive. These comments are in line with similar findings that suggest selective disclosure or concealing certain stigmatizing aspects of a disclosure can optimize social support and limit stigmatizing reactions that can induce stress, lower self-esteem, and interfere with positive role reconstruction (Pachankis, 2007). Participants also recommended that people alert support systems such as friends or a therapist before and/or after the conversation. Alerting support allows social support systems to help prep or defuse experiences of emotional distress and is a strategy to combat stigma-related stressors and negative impacts on health and well-being (Cooper & Nielsen, 2017). The third recommendation included being prepared for the disclosure conversation. Participants described bringing materials about the benefits of their respective treatment and coming into the disclosure with an idea of how to combat misinformation. Moreover, participants described coming prepared with a goal for the conversation. For example, communicating a need for support and letting the disclosure recipient know what is needed to be supportive (e.g., childcare). Previous literature has echoed the idea of coming with a goal in mind. This literature explores how approach goal experiences or assigning a recipient an active role in recovery can eliminate ambiguity and facilitate empowerment and inclusion in recovery (Reupert, Maybery, Cox, & Stokes, 2015). Participants’ final recommendation included advocating for one’s recovery, advice which has been supported in similar interventions and helps to reduce negative self-perceptions (Bhatt, Ruffell, Scior, & Charlesworth, 2020; Corrigan, Kosyluk, & Rüsch, 2013). Taken together, these recommendations have potential to mitigate fear and misinformation within the disclosure event and facilitate positive skills for more effective interpersonal communication.

The findings from this study should be considered in light of the study’s limitations regarding sampling and methods. More qualitative work should expand on the current findings. For example, studies should further investigate whether misinformed disclosure reactions are associated with negative treatment outcomes or negative self-perceptions among people taking MOUDs. Future works may also be interested in documenting discrepancies between the perceptions of participant disclosure reactions and the actual recipient’s reactions, as this may have important impacts on relationships. Moreover, in light of the qualitative nature of this research, any “quasi-quantification” words (e.g., some) were used solely to convey meaning about theme prevalence within the sample itself to identify the precision of emergent themes (Maxwell, 2010), and thus results should not be taken as indicators of frequency. Future research should explore these associations among a more diverse sample and explore whether variability exists in individuals’ disclosure experiences. Further, the current study focuses on misinformed disclosure experiences, and future research should include informed or positive disclosure experiences to better understand the full spectrum of disclosure experiences. Additionally, the substance use disorder treatment facilities used for recruitment consisted of a majority of people engaging in methadone treatment. A limited number of participants were receiving BNX treatment, which can affect generalizability. Future work should expand upon participants’ experiences with BNX disclosure reactions. Likewise, due to the evolving nature of substance use disorder treatment, more research is needed to characterize patients’ experiences with new MOUDs, such as naltrexone (e.g., Vivitrol) or extended-release injectable buprenorphine (e.g., Sublocade).

The findings extend the current understanding of disclosure reactions among people in active methadone or BNX treatment and highlight participants’ recommendations to navigate misinformation. Illustrating participants’ struggles and successes with disclosure facilitates a greater understanding of the cultural ambivalence regarding methadone and BNX treatment and aids development of intervention strategies that can address how misinformation can disrupt treatment processes. Moreover, participants’ recommendations can inform strategies to build empowerment and provide active strategies that can address misinformation within a family and close relationships to facilitate a more supportive disclosure experience. For example, interventions could encourage positive communication skills and coping between patients and psychologists prior to disclosure. Further, future interventions should recognize the importance of disclosure experiences and prioritize strategies to correct misinformation and improve perceptions of methadone and BNX within treatment services. By integrating health literacy and MOUD acceptance into interventions, programs can increase cultural understanding and combat the misinformation that perpetuates stigma and negative self-perception.